You+ https://www.livinglikeyou.com/ en Opening up about my MS https://www.livinglikeyou.com/opening-about-my-ms <span class="field field--name-title field--type-string field--label-hidden">Opening up about my MS</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Mon, 06/06/2022 - 14:14</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/karen-oshea" hreflang="en">Karen O’Shea</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="center image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-06/lly-website-image_0.webp" type="image/webp"> <img width="2220" height="1480" alt="5 women sitting on a sofa, talking." loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-06/lly-website-image_0.jpg?itok=nPaApbFz" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">Recently, I came to a realization. Despite always speaking out about Multiple Sclerosis (MS), I felt like I wasn't doing as much as I should be, and I could have done a better job of it with friends and family.</p> <p class="neutral-dark-grey-text-color">In the early stages of my MS journey, I would speak at schools, educating the pupils about MS. I would also attend ‘Newly Diagnosed’ seminars. But, I clearly lost my way somewhere, and noticing that has hit me quite hard. It all stemmed from a breakdown I had in front of my sister because of the physical pain I was in. It followed a very tough week dealing with intense pain and not telling anybody about what I was going through. My sister said to me, “Unless you tell us, we don't know what you are going through. We may not understand everything you tell us, but we can't help you if you hide things”.</p> <p class="neutral-dark-grey-text-color">In a past relationship, I would often be told to ‘stop playing the MS card’. It was a very hard thing to hear time and time again. It devastated me to the point that I stopped speaking about my MS. I guess I was afraid to talk to my family or friends about it in case they judged me like my previous partner did. </p> <p class="neutral-dark-grey-text-color">I decided to ask family and friends if there were any questions they have been afraid to ask me. In doing this, I hoped it would open up more of a dialogue and I would no longer need to hide my true MS self from them. Here are some of their questions and my answers, which I hope will help you if you are newly diagnosed or like me wanting to make sure you friends and family understand your disease too:</p> <p class="neutral-dark-grey-text-color"><strong>I know the backstory about your diagnosis, but I have always wondered how much of an impact it had on your mental health, and if it still does?</strong></p> <p class="neutral-dark-grey-text-color">I'm not going to lie, when I was first diagnosed, I completely fell apart. In truth, it was a major myriad of emotions. The best way of describing it is to compare it to a grieving process. I grieved the person I might never get to be because of this diagnosis. I was angry, sad and lonely. It was a very dark time. Depression found me. Anxiety found me. It was scary and confusing. This went on for around six months before I began to face my diagnosis. </p> <p class="neutral-dark-grey-text-color">My diagnosis still has an impact on me. I find taking antidepressants helps me. It's a low dosage but it tends to balance me out. I don't take medication for anxiety, as for me, it’s more about finding coping strategies. I still have bad days, but I think this is pretty common when you have a condition like MS. It's the lack of control over my MS that I struggle with the most. </p> <p class="neutral-dark-grey-text-color"><strong>I have heard you speak about fatigue but does resting up a bit more alleviate this?</strong></p> <p class="neutral-dark-grey-text-color">Fatigue is the absolute bane of my life! As a person with insomnia anyway, I feel like I am in a constant state of exhaustion. I genuinely don't know how I keep going sometimes, but what choice do I have? I am a mother, daughter, sister, friend and more, and I have responsibilities like everybody else. Fatigue and being tired are not the same thing. Fatigue is when a person sleeps all night but still wakes up exhausted. It's when simple tasks take way more energy than they should. It's when we rest but are still exhausted. It's going for a shower and having to lie down after it, because it took so much out of you.</p> <p class="neutral-dark-grey-text-color"><strong>You once spoke about how there were people who reacted negatively towards you when you were diagnosed. What do you think made them react this way?</strong></p> <p class="neutral-dark-grey-text-color">There were two people in particular who reacted quite badly to my diagnosis. One invited me to a party of his. When I told him about my diagnosis, he never spoke to me again. Not a word. To this day, almost 15 years on. He obviously couldn't handle it. In my opinion, he couldn't have been much of a friend in the first place. I don't know exactly why he reacted this way, maybe he was afraid of the impact it might have on me. I guess I will never know.</p> <p class="neutral-dark-grey-text-color">The second was a childhood friend that I was quite close with. She was shocked by my diagnosis. She saw a change in me; I was struggling to come to terms with it and I guess she couldn't handle it. We continued to speak for some good few years but, for me, the damage was done.</p> <p class="neutral-dark-grey-text-color">It's quite sad because neither of those people will get to see the person I have become. They have missed the fact that, after the struggle, I evolved into a much stronger person. I became a fighter. I grew in so many ways. I became a better version of myself. Their fears of what MS would do to me were unfounded. They have missed out, but they will never realize that.</p> <p class="neutral-dark-grey-text-color"><strong>I have read that MS can take years to diagnose. Looking back on your own story, were there any missed signs that may have prompted you to ask questions sooner?</strong></p> <p class="neutral-dark-grey-text-color">Yes and no. I have never been that graceful. As a child, teenager and adult, I was always quite clumsy. It was more a laughable thing with friends and family than anything. If anyone was going to fall or walk into a door, it would be me. I would literally fall over myself. In secondary school, I found that my concentration was quite poor. Looking back now, was this a cognitive issue? Perhaps. When I was 22 years old, I had my daughter Emma. I was really tired all the time. I put it down to being a new mother. Looking back now it wasn't normal. When she was six months old, my left arm started to go dead. My GP put it down to the fact that this was the side I was feeding Emma on and that it was probably her head lying on a nerve. I accepted this explanation. Looking back, I think that was my first symptom of MS. Fast forward four years, I received my diagnosis. </p> <p class="neutral-dark-grey-text-color"><strong>Has MS affected your romantic relationships?</strong></p> <p class="neutral-dark-grey-text-color">It most definitely has. It takes a great person to tolerate the emotions that come with having MS, and I do believe that a partner has to be tolerant, patient, caring and present. I can safely say that if the other person blames you for 'changes' in yourself because of MS, the relationship is not healthy. I was in this situation and suggested that maybe we should speak to someone. He wasn't interested in that option, so we muddled on for a long time after that. In hindsight, I should have walked away sooner. I also dated somebody else with MS for a while. From a 'they understand MS' point of view, it was good, but the relationship was lacking in other ways. I still date a little but I’m not really pushing myself to do so currently. </p> <p class="neutral-dark-grey-text-color"><strong>Does MS impact on your sex life?</strong></p> <p class="neutral-dark-grey-text-color">It does. <a href="https://www.livinglikeyou.com/article/sex-and-sclerosis">Sexual dysfunction</a> is quite common in MS for both male and females. It can impact your libido and more. For me, it has affected my ability to climax. As my bladder may not always be fully empty, sometimes it's uncomfortable. Vaginal dryness can be an issue. Fatigue also has a major impact on me.</p> <p class="neutral-dark-grey-text-color"><strong>Is society as inclusive as it could be to people with MS?</strong></p> <p class="neutral-dark-grey-text-color">I would have to say no. If people visually see the disability, they are more inclusive but, if not, you can face discrimination. If I am having a bad day, people can see I am slower getting out of the car, or I might be limping slightly. When I am all right and moving better, I occasionally get questioned about using my blue parking badge. It is very frustrating. Friends that may use a wheelchair or walking aids often find that footpaths can be obstructed by delivery vans and large vehicles, which means they cannot get past. I know some people with MS who have very understanding bosses, but I also know others with MS that hide their condition. </p> <p class="neutral-dark-grey-text-color"><strong>In your almost 15 years of diagnosis, you strike me as a pretty positive person. How do you manage to remain so upbeat?</strong></p> <p class="neutral-dark-grey-text-color">Believe me, I am not an upbeat person all the time, especially first thing in the morning. I need at least two coffees before anybody can talk to me! I found that personally, in my journey with MS, keeping my head up and constantly fighting is what has shaped me to be who I am today. I have a whole network of MS friends and colleagues that I am very fortunate to know. Blogging to others with MS about my journey has also been a truly positive experience. My out-and-out stubbornness (while proving challenging to my family) has ensured that MS will never take me down for long. Consider every day you get out of bed and do whatever it is to ensure MS does not win, a victory.</p> <p class="neutral-dark-grey-text-color">It’s not always easy speaking to loved ones about MS, whether you’re newly diagnosed or years into your MS journey. However, it can help to open up about how you are feeling. To learn more about telling your partner you have MS, read <a href="https://www.livinglikeyou.com/telling-your-partner-you-have-ms">here</a>.</p> <p class="MsoCommentText neutral-dark-grey-text-color"> </p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Mon, 06 Jun 2022 12:14:12 +0000 aonyiuke@ipg-pr.com 8781 at https://www.livinglikeyou.com Raising a pet when you have MS https://www.livinglikeyou.com/raising-pet-when-you-have-ms <span class="field field--name-title field--type-string field--label-hidden">Raising a pet when you have MS</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Wed, 03/30/2022 - 15:55</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/willeke-van-eeckhoutte" hreflang="en">Willeke Van Eeckhoutte</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="center image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/lly-website-image-5.webp" type="image/webp"> <img width="2220" height="1480" alt="A finger on a dog’s nose" loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/lly-website-image-5.jpg?itok=vLDUNVqK" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">I won't lie to you, raising a puppy is far from easy. Bringing up a puppy when you're single and have Multiple Sclerosis (MS) is, well, you can guess. When living with a chronic disease like MS and raising anything that breathes is a challenge!</p> <p class="neutral-dark-grey-text-color">My 7-month-old Whippet puppy, Oisín, and I returned from a walk in the park next to my house, and he appeared to be walking me instead of me walking him, proving who the chief walker really was. Thanks to fatigue and other MS symptoms that continue to overcome me, the proud and resilient alpha leader of the pack, I know myself to be, is visibly lacking strength. I can admit, I feel like a flustered omega runt of the litter, following an animal that gets me and my MS better than I do now.</p> <p class="neutral-dark-grey-text-color">Raising any pet shouldn't feel like a quantum physics theory exam, especially whilst already trying to understand symptoms that don’t make any sense at all. Having said that, whilst you may want to simply enjoy time with your pet, it takes some effort. This applies for all pets, whether you adopt a cat, find a lost dog or care for your family’s parakeets or bunnies. They will gladly mess up your daily routine until you have adapted to each other’s biological clocks and routines.</p> <p class="neutral-dark-grey-text-color">Naturally, having pets, whilst living with MS, can raise certain questions, which are often difficult to answer, particularly when times are not that good. Questions like when you find yourself in a relapse, need hospitalization or have other family matters that take precedent for a while. It is also important to consider the type of animal you want to raise as a pet. In my opinion, dogs treat you as family, while cats can tend to think of you merely as staff.</p> <p class="neutral-dark-grey-text-color">In short, I may appear calm, but only until I close the front door behind me. Then there is a lot of craziness to bringing up the mighty Oisin Darragh D’Arcy, Whippet extraordinaire, especially when having what resembles a MS relapse. His bite marks on my arms resemble sketch versions of a Michelangelo painting and I wonder if or when those three-month-old scratch marks will ever disappear. Pins and needles sensations in my arms make me realize that this is what being a worn pin cushion must feel like.</p> <p class="neutral-dark-grey-text-color">But, when I see Oisín's curious, deep brown, pearl-shaped eyes asking to go for a walk, I just give in, even if it's just spending ten minutes in the park across the road. Both of us will gladly drop half unconscious onto my bed to doze off for a few hours once we get home.</p> <p class="neutral-dark-grey-text-color">Now, raising a pet while having MS can go both ways, good or bad. Remember, getting a pet should add joy to your life, not make it worse. So weighing up your symptoms and what a pet can add to your life needs to be done with a clear mind before you make this long-term commitment.</p> <p class="neutral-dark-grey-text-color">Having <a href="https://www.livinglikeyou.com/dictionary/trigeminal-neuralgia">trigeminal neuralgia</a> and sound sensitivity is an issue. However, with some training and adaptation to old routines, Oisín’s body language warns me when he’s voicing his discontent. For example, I can tell from his behavior when he wants to go to the garden, come right back in, pretend he did his duty, and therefore deserves a treat. He equally knows how to open doors and help me fill the washing machine with laundry. When I cannot seem to warm up my legs, he crawls under the duvet with me and lies against them. I like to consider having a pet as a form of holistic treatment.</p> <p class="neutral-dark-grey-text-color">In short, since Oisín came into my life six months ago, MS has taken up less time in my mind, regardless of the prominent level of physical pain. A more perfect, affectionate, funny and holistic antidote is hard to find.</p> <p class="neutral-dark-grey-text-color">For Willeke, raising her pet has helped with managing her MS. and is one of many types of holistic treatments available. For Birgit, this is often meditation. To find out more about meditation and MS, read <a href="https://www.livinglikeyou.com/article/meditation-breathe-in-and-out">here</a>.</p> <p class="neutral-dark-grey-text-color"><br><strong>References</strong></p> <p class="neutral-dark-grey-text-color"><a href="https://multiplesclerosisnewstoday.com/multiple-sclerosis-social-clips/2017/03/09/five-benefits-of-having-pets-when-you-have-multiple-sclerosis/">5 Benefits of having a pet when you have multiple sclerosis,</a> Multiple Sclerosis News Today</p> <p class="neutral-dark-grey-text-color"><a href="https://www.healthline.com/health/multiple-sclerosis/dogs-helping-with-MS">These dogs know when their owner are about to have an MS flare</a>, Healthline</p> <p class="neutral-dark-grey-text-color"><a href="https://www.webmd.com/multiple-sclerosis/features/ms-support-animals">Emotional support animals for MS</a>, WebMD</p> <p class="neutral-dark-grey-text-color"><a href="https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269">Multiple sclerosis symptoms and causes,</a> Mayo Clinic</p> <p class="neutral-dark-grey-text-color"><a href="https://www.ninds.nih.gov/Disorders/All-Disorders/Paresthesia-Information-Page">Paresthesia information page</a>, National Institute of Neurological Disorders and Stroke</p> <p class="neutral-dark-grey-text-color"><a href="https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Trigeminal-Neuralgia-Fact-Sheet">Trigeminal neuralgia fact sheet,</a> NINDS</p> <p class="MsoCommentText neutral-dark-grey-text-color"> </p> <p class="neutral-dark-grey-text-color"> </p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Wed, 30 Mar 2022 13:55:44 +0000 aonyiuke@ipg-pr.com 8561 at https://www.livinglikeyou.com MS: Living in denial https://www.livinglikeyou.com/ms-living-denial <span class="field field--name-title field--type-string field--label-hidden">MS: Living in denial </span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Wed, 03/30/2022 - 15:18</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/willeke-van-eeckhoutte" hreflang="en">Willeke Van Eeckhoutte</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="center image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/MS%20Living%20in%20denial.webp" type="image/webp"> <img width="2220" height="1480" alt="Woman in sat on bed with laptop and dog" loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/MS%20Living%20in%20denial.png?itok=gjpOrBR2" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color"><strong>Time for a group hug!</strong></p> <p class="neutral-dark-grey-text-color">This is a shout-out to anyone who feels they are alone and in need of some support, especially if you’ve been recently diagnosed with Multiple Sclerosis (MS).</p> <p class="neutral-dark-grey-text-color"><strong>What’s in a name?</strong></p> <p class="neutral-dark-grey-text-color">There was a change the moment I received my MS diagnosis - the time before and after was distinct. Before my diagnosis, I had approximately six months of clearly-defined symptoms and knew that these extremely intense, inexplicable sensations were anything but normal. On the day of my diagnosis, it didn’t feel as if the labels ‘Multiple Sclerosis’ and ‘<a href="https://www.livinglikeyou.com/dictionary/trigeminal-neuralgia">trigeminal neuralgia</a>’ changed the emotional impact that much, just because they now had a formal title.</p> <p class="neutral-dark-grey-text-color">In fact, I felt relief, almost giddy, even. I left the hospital saying, ‘I have MS, and it’s not that bad!’ (or so I thought). Now I knew what to do and where to go next to eliminate both (or so I thought… again). At last, the beast had a name.</p> <p class="neutral-dark-grey-text-color">When I heard other people with MS saying they felt similarly happy and relieved, I thought, “I’ve found my tribe, my people”. It’s something non-neurologically challenged people find hard to understand, but in the MS world, we often say ‘You only get MS when you get MS’.</p> <p class="neutral-dark-grey-text-color"><strong>Denial or no denial? What’s in a name?</strong></p> <p class="neutral-dark-grey-text-color">In the weeks following my diagnoses, some of my friends said I was clearly in denial. That, of course, was their prerogative. However, it was my own prerogative to be in denial, or whatever emotional state I had to be in. Perhaps I just needed to be in denial out of self-preservation, to cushion everything and everyone around me from the shock of what was, not just my lifetime of MS, but theirs by association.</p> <p class="neutral-dark-grey-text-color">After all, it had been months seeing the doubt and concern in people’s eyes; how could you possibly have stabbing pains behind and in your eye and ear from a door slamming shut? Not to mention the other triggers like kissing, eating, laughing, cold air, the vibration of walking and many other triggers that seemed to have nothing to do with those senses?</p> <p class="neutral-dark-grey-text-color">My friends may have been right, I was in denial for a full five weeks. I told people I would be all right, that I could work every day and that, one day, trigeminal neuralgia would be gone forever.</p> <p class="neutral-dark-grey-text-color"><a href="https://www.livinglikeyou.com/dictionary/fatigue"><strong>Fatigue</strong></a> <strong>and </strong><a href="https://www.livinglikeyou.com/dictionary/cog-fog"><strong>cog fog</strong></a> <strong>galore!</strong></p> <p class="neutral-dark-grey-text-color">We all know certain MS symptoms, like cog fog and fatigue, might attempt to steal your strength, wit and temper. On the other hand, you might encounter symptoms that will prove you are much stronger than you ever gave yourself credit for. In both cases, there will be shortcuts, workarounds and life hacks you may discover, whilst you learn how to deal with MS in your own way.</p> <p class="neutral-dark-grey-text-color"><strong>Quick lesson</strong></p> <p class="neutral-dark-grey-text-color">During my five weeks of denial, I physically learnt that being negative was more draining than being positive. Whenever a negative thought about MS appears in your mind, think of a happy moment in your life.</p> <p class="neutral-dark-grey-text-color">In fact, I’ve gone as far as getting a dog. People often said, “But you have sound sensitivity and trigeminal pain, how will you get to look after a puppy?!” My answer followed: “Yes, but that puppy is taking my mind off the pain - as excruciating as that pain is - because he needs me more than I need another day cursing at MS. He is therefore my four-legged holistic treatment!”</p> <p class="neutral-dark-grey-text-color">What type of holistic treatment might work for you? Different types of activities, including exercising, meditation and even music, can help with management of MS. Read Jamie’s story, as she discovers whether music really could improve her MS <a>symptoms</a>, <a href="https://www.livinglikeyou.com/article/can-music-improve-your-ms-symptoms">here</a>.</p> <p class="neutral-dark-grey-text-color"><strong>References</strong></p> <p class="neutral-dark-grey-text-color"><a href="https://multiplesclerosisnewstoday.com/silver-linings-a-column-by-jennifer-powell/2020/09/08/permission-to-not-be-positive-the-reality-of-life-with-ms/">The Contrast Between Positivity and the Realities of MS</a>, Multiple Sclerosis News Today</p> <p class="neutral-dark-grey-text-color"><a href="https://www.everydayhealth.com/multiple-sclerosis/everyday-guide-to-living-well/">Your Everyday Guide to Living Well With Multiple Sclerosis</a>, Everyday Health</p> <p class="neutral-dark-grey-text-color"><a href="https://overcomingms.org/about-multiple-sclerosis/ms-encyclopedia/mind-body-connection-and-ms">Mind-Body Connection and MS</a>, Overcoming MS</p> <p class="neutral-dark-grey-text-color"><a href="https://health.usnews.com/health-care/patient-advice/articles/2017-10-20/tips-for-a-positive-outlook-when-you-have-ms">Tips for a Positive Outlook When You Have MS</a>, US News</p> <p class="neutral-dark-grey-text-color"> </p> <p class="neutral-dark-grey-text-color"> </p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Wed, 30 Mar 2022 13:18:08 +0000 aonyiuke@ipg-pr.com 8556 at https://www.livinglikeyou.com The truth about my MS symptoms https://www.livinglikeyou.com/truth-about-my-ms-symptoms <span class="field field--name-title field--type-string field--label-hidden">The truth about my MS symptoms</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Wed, 03/30/2022 - 13:04</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/declan-groeger" hreflang="en">Declan Groeger</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="left image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/lly-website-image-1.webp" type="image/webp"> <img width="1200" height="800" alt="Person tying shoelaces on leather brown shoes" loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/lly-website-image-1.jpg?itok=qdzLpqet" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">All <a href="https://www.livinglikeyou.com/symptoms">symptoms of Multiple Sclerosis</a> (MS) are personal and uncomfortable, some more so than others. As a Person Living with MS (PLwMS), I have learned to co-exist with my symptoms, tolerate them and, where possible, work around them. This has been the most important MS lesson I have learned over the past 33+ years with the condition. There are just too many MS symptoms to write about and do justice to in one blog, so I have concentrated on three: memory, concentration and manual dexterity.</p> <p class="neutral-dark-grey-text-color">I can no longer rely on my memory. Though I think my memory is relatively OK, it’s not as good as it was. How do I manage? I write reminders in my diary; the diary my wife Jean gives me every Christmas, because she knows that, if I don't write it down, it will be forgotten. I also use sticky notes and add them to my diary, making them easier to transfer from day to day as the days pass. I check over my diary every week to see what has, or hasn't, been completed.</p> <p class="neutral-dark-grey-text-color">What do I do when I am away from home and my diary? When I think of something that needs to be done or when someone asks me to do something, I send myself an email, like an electronic sticky note. Whilst I use my electronic calendar for everything, I still write notes in my diary (old habits die hard) and tick them off when completed.</p> <p class="neutral-dark-grey-text-color">My concentration has taken a hit. I have come to prefer short bursts of concentration with longer periods of inane activities that require less concentration. I no longer beat myself up for lapses in concentration. I am almost embarrassed to say that some, admittedly a small number, tasks never get done. It’s not that I intentionally disregard them, but they get lost in the mix of different activities. I have learned to divide jobs into manageable sections, and jobs now take longer to complete. People who ask me to do things know that, whilst I will do my best, my MS may derail my plans without notice.</p> <p class="neutral-dark-grey-text-color">Manual dexterity has also become more of an issue. My handwriting was never great but now there are times my handwriting rivals any doctor’s written prescriptions. I only wear a tie for special occasions. Buttoning my shirts is a time-consuming task; my preferred upper-body clothing is any shirt with three or fewer buttons or, better still, a zip. Unfortunately, dexterity issues mean getting dressed is never quick or easy, and showering and shaving take a massive amount of concentration. It is even more unfortunate that there is no workaround when it comes to dressing myself.</p> <p class="neutral-dark-grey-text-color">Putting socks on is not the easiest part of ‘Operation Getting Dressed’, but I power through before moving onto the next phase, getting my feet in my shoes, which includes using shoehorns. <a href="https://www.livinglikeyou.com/dictionary/spasticity">Spasticity</a> and <a href="https://www.livinglikeyou.com/dictionary/foot-drop">foot-drop</a> are factors that further complicate the process. Tying my shoelaces is currently the easiest part, but it still presents difficulties. I recently came across Velcro-fastened shoes that manage to look stylish – I’ve found a solution to my least difficult task. Oh, if only my more difficult tasks could be resolved as easily. Good footwear is important, even though I don’t walk very much anymore.</p> <p class="neutral-dark-grey-text-color">There you have it, just a brief insight into some of my many MS symptoms. Whilst there are some good days and some not so good days, you learn the best ways to live with the symptoms.</p> <p class="neutral-dark-grey-text-color">Many people living with MS face symptoms that impact their memory, concentration and manual dexterity. Read more about how our LLY blogger, Birgit, structures her day with MS <a href="https://www.livinglikeyou.com/my-ms-daily-routine">here</a>.</p> <p class="MsoCommentText neutral-dark-grey-text-color"> </p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/31" hreflang="en">Inside MS</a> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Wed, 30 Mar 2022 11:04:46 +0000 aonyiuke@ipg-pr.com 8546 at https://www.livinglikeyou.com Gratitude and MS https://www.livinglikeyou.com/gratitude-and-ms <span class="field field--name-title field--type-string field--label-hidden">Gratitude and MS</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Tue, 03/29/2022 - 18:18</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/karen-oshea" hreflang="en">Karen O’Shea</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="center image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-06/Gratitude.webp" type="image/webp"> <img width="2220" height="1480" alt="Person in white blouse reading book with white teacup" loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-06/Gratitude.png?itok=ngVO-8h4" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">When I asked if I could write a blog about gratitude, I had a completely different idea in my head about how I would write it. I had so many ideas, but then my mother passed away suddenly recently, so this blog has become somewhat different for me. I hope I do it justice.</p> <p class="neutral-dark-grey-text-color">During times like Mental Health Month and World MS Day, it can be a reminder of the importance of self-reflection. Though still grieving, I have so many lovely memories of my mother to reflect upon. Talking with my family soothes my soul a little. We have laughed together, cried together, even been angry at times together. In saying all that, I am grateful that I had my mother in my life. She was a character. We fought like cat and dog, but nevertheless, we both really enjoyed it. She always had a glint in her eye. A sparkle. A kindness. She was all about my dad, her children, her grandchildren.</p> <p class="neutral-dark-grey-text-color">The grieving process is an interesting one. It reminds me of when I was diagnosed with MS, which hit me hard. Going from being me, to suddenly becoming a person living with MS was so overwhelming. It felt like I was drowning under the weight of information about treatment plans and the fear of the unknown. No matter how hard I tried to fight and kick to the waters' surface, the magnitude of realizing I had no control of this disease pulled me back under. All the dreams and plans I had evaporated. I felt completely alone. I have never known a fear like it. Was I going to be well enough to continue to parent my child? Was I going to end up unable to care for myself? In those early days, I was unable to rationalize anything. I reached out to my local MS society and that is where acceptance began. I will always be grateful to them for putting me in touch with an MS counselor who helped me on my journey. I met so many others with MS who bravely spoke out about their journeys. It gave me the strength to do the same. Life is what you make of it. MS has made me learn to fight, to speak out, to love what I cannot change. It has made me a better person, overall, because I have learned to see the positives.</p> <p class="neutral-dark-grey-text-color">MS has shown me how strong I really am; even in times when my MS was unstable, I have gotten back up and fought. In contrast, grieving the loss of my mom has made me feel very vulnerable and weak, but I now need to remember and celebrate her life. I take comfort in the fact that my mother was a devout Catholic. When somebody dies, some say, if it rains, a soul is happy in heaven and it has been particularly rainy lately. Though I am not religious, I do believe she is in Heaven. The rain has brought growth and new life, and nature is flourishing. I realized that despite my grief, the sun is still rising. The birds continue to sing and, somehow, this makes me feel less alone. The world is still turning. My favorite flowers (bluebells) are flourishing. Lambs are frolicking in the fields. Life is still going on around us.</p> <p class="neutral-dark-grey-text-color">When times are particularly hard, I spend some time relaxing and meditating, but if my house feels too quiet, I immerse myself in music. It has soothed and calmed me, as well as energized me. It has inspired me.</p> <p class="neutral-dark-grey-text-color">I have so much to be grateful for. Who would have ever thought an MS diagnosis would give me this fantastic platform to share my experiences with others with MS? Writing these blogs has inspired me to change my outlook on life. As the reader, you get to read about the good, the bad and, sometimes, even the funny. Even on bad days, I am always thinking about how tomorrow will be better. I had to become the positive version of myself, it is the version I like. Negativity is not part of me anymore because it’s toxic influence in my life had become all-consuming. I am grateful for my family, my friends (especially my MS friends) and, even though my mom has now passed, I am grateful that all the memories I have with her that will never die. She taught me more than a schoolbook ever could. She was always so patient with her children and grandkids. She made the best eclairs; which sold out immediately at any bake sale we ever had. I am also thankful she got to meet the newest addition to our family, Grace. She was so content in my mothers’ arms. Luckily, my sister took some beautiful pictures of them together. Rest in Peace mom. I miss you and will be eternally grateful for what you did for your family.</p> <p class="neutral-dark-grey-text-color">Some days may feel harder than others, especially when living with MS. It is important to find ways you can stay positive, even on a bad day. Read more about positive thinking with MS <a href="https://www.livinglikeyou.com/importance-positive-thinking-ms">here</a>.</p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Tue, 29 Mar 2022 16:18:47 +0000 aonyiuke@ipg-pr.com 8541 at https://www.livinglikeyou.com The time MS stole my memory https://www.livinglikeyou.com/time-ms-stole-my-memory <span class="field field--name-title field--type-string field--label-hidden">The time MS stole my memory</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Tue, 03/22/2022 - 16:19</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/willeke-van-eeckhoutte" hreflang="en">Willeke Van Eeckhoutte</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="center image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/MS%20has%20stolen%20my%20memory.webp" type="image/webp"> <img width="2220" height="1480" alt="Grey to do list journal on white desk with plant" loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/MS%20has%20stolen%20my%20memory.jpg?itok=vGH5Ctuu" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">2021 has been a year of many ups and a few downs.</p> <p class="neutral-dark-grey-text-color">Earlier this year, a four-legged, now almost 10-month-old, whippet puppy arrived on my doorstep. Eight months later, he has had an overall positive influence on my life and that can only be good news! He might have also contributed to some facial pain affairs, more fatigue and other symptoms, though as I sit here, I struggle to remember which.</p> <p class="neutral-dark-grey-text-color">Speaking of memory, that has been having its own set of fluctuations over the year. Imagine watching actress Kate Winslet more times than you can count. Seeing her in movies and TV series, like her show ‘Mare of Easttown’, which I binge-watched about three months ago. Remember Titanic? Yes, Leo, Rose, sinking ship, all that. Kate Winslet was in that too, and I have seen its dozens of times. But, when I sat down with Oisín to watch a film called Ammonite, I spent the first 90 minutes thinking, ‘That girl from- what’s that series again? That girl is great in this film!’</p> <p class="neutral-dark-grey-text-color">After 90 minutes had past, unable to continue watching whilst my memory was still failing to co-operate, I clicked pause and it suddenly hit me, ‘’But… wait! What!? Who? Kate Winslet?! Now, Willeke, even for you, this hole in your memory is off the charts. You love Winslet, you usually recognize her voice before you even see her, but now it has taken you 90 minutes to realise this is Kate Winslet? Really?!’’</p> <p class="neutral-dark-grey-text-color">I spent the second half of the film replaying the shock I felt when it first dawned on me. How did I not remember one of my favourite actresses? For an hour and a half?!</p> <p class="neutral-dark-grey-text-color"><strong>Cognition (s)kills</strong></p> <p class="neutral-dark-grey-text-color">This incident fits into the cognitive kills (not skills) framework, which illustrates cognitive issues as a symptom of MS that can sadly have the potential to be life threatening. The first incident that set off alarm bells was not remembering I was my brother’s witness at his wedding.</p> <p class="neutral-dark-grey-text-color">Ouch. I know.</p> <p class="neutral-dark-grey-text-color">Shortly after this, I had my first appointment with a neuropsychologist, who explained the workings of MS and its possible impact on the memory. I told him that, amongst other things, I forget to do things, which he described as a retrospective memory issue. An issue where people, instead, just assume you are too lazy to do what you’d say you’d do.</p> <p class="neutral-dark-grey-text-color">This latest episode was different though, I call it the blip of the year, but it could, of course, just be another minor thing in the grand scheme of MS.</p> <p class="neutral-dark-grey-text-color">What I failed to do was to not overreact or think the absolute worst. Sure, it is a warning, a sign to do even more <a href="https://www.livinglikeyou.com/article/five-free-brain-training-apps-yes-we-said-free" title="10 Brain Games To Boost MS Memory">brain training</a>, eat even more oily fish, rest more and look after myself better. So far, I’ve been addicted to the daily crosswords by the New York Times (which get more difficult across the week) and love Scrabble, ‘Words With Friends’ and ‘Word Feud’. However, I must think of other ways to stretch my mind.</p> <p class="neutral-dark-grey-text-color">Having been there myself, I am all too aware that some people say, “Well if you can’t remember, it is either because it’s not true” (read: you are lying), “or you are just confabulating” (you are not lying, your mind is playing games with you. Even so, you should’ve remembered).</p> <p class="neutral-dark-grey-text-color">I tell people that, sometimes, I have issues remembering what really happened until I am given a cue. Imagine what I’d be like if I had to remember lies, too! With all my smartphone reminders, colorful sticky notes on every wall, laptop reminders and my mum being my overseas personal assistant, I’ve gone deaf to reminders.</p> <p class="neutral-dark-grey-text-color">It’s important to know that, whilst MS and cognitive symptoms might treat your mind like a punch bag, it will rarely lead to permanent memory loss. There are lots of ways to work around it, and there is always support available in community groups, as well as your medical team.</p> <p class="neutral-dark-grey-text-color">After 17+ years with MS and an uncountable amount of ‘Sorry, I really forgot, please know that I would not do this on purpose’, I have now told myself, unless warranted by circumstance, enough with the apologies. If my memory takes some time off, I say a brief sorry and move on.</p> <p class="neutral-dark-grey-text-color">MS is, and will always be, a wondrous world of seeing things from a different perspective, and I hope this article will help you feel less alone if your memory is playing games with your past, present and future!</p> <p class="neutral-dark-grey-text-color">Memory loss can be a result of <a href="https://www.livinglikeyou.com/dictionary/cog-fog">cog fog</a>, cognitive symptoms experienced by many people living with MS. Learn more about the cognitive symptoms of MS, and how to track them, <a href="https://www.livinglikeyou.com/ms-and-its-cognitive-symptoms">here</a>.</p> <p class="neutral-dark-grey-text-color"><strong>References:</strong></p> <p class="neutral-dark-grey-text-color"><a href="https://www.verywellmind.com/confabulation-definition-examples-and-treatments-4177450">What is confabulation?</a> - VeryWell Mind</p> <p class="neutral-dark-grey-text-color"><a href="https://www.healthline.com/health/multiple-sclerosis/memory-loss#takeaway">The Link Between Multiple Sclerosis and Memory Loss</a> – Healthline</p> <p class="neutral-dark-grey-text-color"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6238181/">Recommendations for cognitive screening and management in multiple sclerosis care</a> - U.S. National Institutes of Health's National Library of Medicine</p> <p class="neutral-dark-grey-text-color"> </p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/31" hreflang="en">Inside MS</a> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Tue, 22 Mar 2022 15:19:03 +0000 aonyiuke@ipg-pr.com 8531 at https://www.livinglikeyou.com MS and ageing https://www.livinglikeyou.com/ms-and-ageing <span class="field field--name-title field--type-string field--label-hidden">MS and ageing</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Tue, 03/22/2022 - 16:00</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/willeke-van-eeckhoutte" hreflang="en">Willeke Van Eeckhoutte</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="center image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/MS%20and%20ageing.webp" type="image/webp"> <img width="2220" height="1480" alt="Older woman in white shirt leans against table laughing with younger woman in white top" loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/MS%20and%20ageing.jpg?itok=K_IDUGtd" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">George Bernard Shaw once said, “You don’t stop laughing when you grow old, you grow old when you stop laughing”. As I reach an age even I didn’t expect to reach, I am often reminded of Bernard Shaw’s words.</p> <p class="neutral-dark-grey-text-color">I was diagnosed after 6 months of <a href="https://www.livinglikeyou.com/dictionary/trigeminal-neuralgia">trigeminal neuralgia</a>, and other Multiple Sclerosis (MS) symptoms, at the age of 31. Seventeen years later, I can say my experience with MS has become the building blocks of a life well lived. But, like many, I can’t necessarily say growing old is something I look forward to, as I love life too much! The good thing is that, as I’ve grown older, clinical research continues to find solutions and develop new treatments and futuristic technologies, so I am more than hopeful that my MS at old age will not be as scary a tale as it was when I was first diagnosed.</p> <p class="neutral-dark-grey-text-color">I am now 48, blessed with the absence of facial wrinkles, and have acquired a mindset of ‘don’t you dare think of giving up.’ Because of this, my physical body doesn’t always feel 48. Sometimes it can feel 28, though other times it can feel 78. Evidently, there’s a lot of variation when it comes to experiencing MS symptoms, on top of others that come with growing older.</p> <p class="neutral-dark-grey-text-color">In 1992, statistics stated that people living with MS would have an average lifespan six to seven years less than average. Of course, since then, so many new treatments have found their way into the hands of people living with MS, they have the potential to impact prognoses in a positive way. In fact, the National Multiple Sclerosis Society (NMSS) reported in 2015 that “life expectancy has increased over time because of breakthroughs and insights in treatments, healthcare and lifestyle changes”. In fact, most people with MS are more likely to pass away from other conditions like cancer, high cholesterol, heart disease, or stroke, the same as otherwise healthy people.</p> <p class="neutral-dark-grey-text-color">According to the Multiple Sclerosis Association of America (MSAA), reasons life expectancy in MS may be shorter include: frequent relapses, late onset of symptoms (older than 40), experiencing more than two relapses within two years of diagnosis or symptoms affecting bladder control, mobility or mental functioning at onset of MS. Another is if you had initial symptoms in many areas of the body, or many lesions in brain based on an MRI scan.</p> <p class="neutral-dark-grey-text-color">To avoid all the above, and as you can already guess, lifestyle changes are vital. Walking around with 17 years of MS baggage, means there have been many dos and don’ts that made it onto my list of self-care strategies. Some worked, others didn’t. Some were fanciful, others banal. Eventually, I understood what worked for me and what didn’t, but I am not a neurologist or a neuroscientist. Whilst my personal learning has been impactful in the management of my health, my medical team has all the scientific knowledge to best support my care.</p> <p class="neutral-dark-grey-text-color">The reality is, there is the likelihood that my MS symptoms will change as I get older, something neither my neurologist, nor GP, can stop. Just like life, MS fluctuations means its unpredictable nature will remain an issue. After 17 years, however, I am strengthened with the knowledge and the wisdom not to making unhealthy decisions for my MS.</p> <p class="neutral-dark-grey-text-color">Do I think of what being 65 will be like and how my MS will have progressed? Of course, I do. I wouldn’t be human if I didn’t. A simple daily mantra keeps me going. When I wake up, I say out loud what I intend to do today. When I go to bed at night, I say aloud what MS prevented me from doing, but what I did instead. To finish, I add ‘there’s always tomorrow’. It’s an easy-to-use method that paves the way for the next day, week, or month after. Saying it aloud means it is not just a mere thought, but a live action that will register somewhere in my brain.</p> <p class="neutral-dark-grey-text-color">It always helps to remember, you don’t stop laughing when you grow old. Just make sure life is well-lived.</p> <p class="neutral-dark-grey-text-color">An important part of growing older with MS is learning how best to manage it, something Willeke has learned over the years. Find out more about how to <a href="https://www.livinglikeyou.com/5-top-tips-living-well-spms">live well with MS</a>.</p> <p class="neutral-dark-grey-text-color"><strong>References</strong></p> <p class="neutral-dark-grey-text-color"><a href="https://pubmed.ncbi.nlm.nih.gov/1579256/">Life expectancy in patients attending multiple sclerosis clinics</a>, PubMed</p> <p class="neutral-dark-grey-text-color"><a href="https://www.nationalmssociety.org/About-the-Society/News/Study-Shows-Life-Expectancy-for-People-with-MS-Inc">Study Shows Life Expectancy for People with MS Increasing Over Time, But Still Lower Than the General Population – Treating other medical conditions may increase lifespan</a>, National Multiple Sclerosis Society</p> <p class="neutral-dark-grey-text-color"><a href="https://mymsaa.org/ms-information/overview/who-gets-ms/">Who Gets Multiple Sclerosis</a>, Multiple Sclerosis Association of America</p> <p class="neutral-dark-grey-text-color"><a href="https://www.verywellhealth.com/multiple-sclerosis-life-expectancy-2440637">How multiple sclerosis can affect life expectancy</a>, VeryWell Health</p> <p class="neutral-dark-grey-text-color"><a href="https://www.verywellhealth.com/multiple-sclerosis-treatment-4014270">How Multiple Sclerosis Is Treated</a>, VeryWell Health</p> <p class="neutral-dark-grey-text-color"><a href="https://www.verywellhealth.com/expanded-disability-status-scale-multiple-sclerosis-2440692">Understanding the Expanded Disability Status Scale (EDSS)</a>, VeryWell Health</p> <p class="neutral-dark-grey-text-color"><a href="https://mstrust.org.uk/a-z/life-expectancy">Life expectancy</a>, MS Trust</p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Tue, 22 Mar 2022 15:00:10 +0000 aonyiuke@ipg-pr.com 8526 at https://www.livinglikeyou.com Online Dating and MS https://www.livinglikeyou.com/online-dating-and-ms <span class="field field--name-title field--type-string field--label-hidden">Online Dating and MS</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Tue, 03/22/2022 - 15:45</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/karen-oshea" hreflang="en">Karen O’Shea</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up paragraph-slider-slickslider"> <div class="row slickslider"> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="center image--paragraph standard-spacing"> <div class="field field--name-field-image-title field--type-string field--label-hidden"> MS Diet and Body Connection </div> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/Online%20dating%20and%20MS.webp" type="image/webp"> <img width="2220" height="1480" alt="Phone with red heart, kiss face, red heart emoji on screen" loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2022-03/Online%20dating%20and%20MS.jpg?itok=-xiDM8dF" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">So, my story of online dating… After briefly dating for two weeks back in 2019, I came to enjoy my time being single, until my brother asked me if I would ever consider online dating. </p> <p class="neutral-dark-grey-text-color">My brother’s two sisters-in-law had some success with online dating, and he was worried about me being on my own. As one of five, all my siblings are married, and my brother believes I should be out trying to find a partner. I listened to what he said and made the decision, there and then, to give it a go.</p> <p class="neutral-dark-grey-text-color">In June 2001, a few weeks shy of my 40th birthday, I immersed myself in the world of dating apps. It is pretty exhausting being on the hunt for love, but I made sure I stayed hydrated and was sure to take plenty of screen breaks. Also exfoliate and moisturize a little more! (This has nothing to do with computer time but it's no harm to have healthy looking skin when you match with a potential partner.)</p> <p class="neutral-dark-grey-text-color">I turned to my friends for advice. Amy’s experiences were not the greatest, all her previous dates had the maturity level of a 12-year-old! Adam is struggling to find his feet with online dating but hasn't given up on finding love. Debbie and Stephen met through online dating and are now getting married on New Year's Eve this year! That gave me great hope. If they found love, why couldn't I?</p> <p class="neutral-dark-grey-text-color">I must mention that none of them are people with Multiple Sclerosis (MS). I wondered what online dating would be like with MS, would it be harder? It’s safe to say that, as we are currently living in a world where the recent pandemic has changed dating in a profound way, it has become harder to meet people in the usual social ways because of lockdowns and restrictions, as well as trying to keep yourself as safe as possible. What I liked about one of the dating sites was that it would tell you if someone was vaccinated or not. As a person with an autoimmune disease, I think this is a great thing. I would have preferred to meet somebody organically but, as it isn't normal times, I am making the best of the situation! </p> <p class="neutral-dark-grey-text-color">So, let’s fast forward and talk about Date no 2. Evan was quite the experience. He made it clear exactly what he wanted. I had never dated someone significantly younger than me before. He wanted to date an older woman, as he was looking to settle down and start a family. As this was not for me, we had a five-week fling instead. This gave me great confidence but, as I continued to date, I understood what I really wanted was a companion.</p> <p class="neutral-dark-grey-text-color">When I first set up a profile, I did not mention that I have MS but, over time, I realized being upfront about my MS took the awkwardness out of telling someone in the long run. Plus, why hide my condition now, when I have never hidden it in the whole time since being diagnosed? If someone reads my profile and sees my MS as a problem, let's face it, they wouldn't be for me anyway. Since I have been upfront, I have had a lot more dates. If I have had to cancel because I was too tired, they already knew that, as a person with MS, this could happen. Some of my friends living with MS, like Kim and Erica, decided not to tell people they had MS until a second or third date. People do what works for them.</p> <p class="neutral-dark-grey-text-color">In conclusion, dating can be hard whether you have MS or not! I regularly take breaks from online dating for several reasons; sometimes my cognitive function is not the greatest, or my fingers become stiff, making typing difficult.</p> <p class="neutral-dark-grey-text-color">Just before I leave you to go pick out an outfit for tomorrow (I have a date with Mike - such a character and so good looking), here are a few dating tips from me to hopefully see you on your way: </p> <ul><li class="neutral-dark-grey-text-color">Have a clear idea of what you want from online dating </li> <li class="neutral-dark-grey-text-color">Learn to read between the lines. If a person messaging you seems too good to be true, there is a chance that they are </li> <li class="neutral-dark-grey-text-color">I always video call a person before I agree to meet them, as sometimes the pictures on their profile are not even of them </li> <li class="neutral-dark-grey-text-color">If you decide to meet a person, always do so in a public place and always let a friend or family member know where you are going, what time you will be back and any other important information</li> <li class="neutral-dark-grey-text-color">Grow a thick skin. Not everyone you meet will be 'the one' and rejection is part of online dating. Bounce back and move on</li> <li class="neutral-dark-grey-text-color">As people with MS, we have enough to worry about, so try to schedule a date around when your energy levels are best. If you are a midday type of person like me, try coffee dates or lunch dates. If you are more of an evening person, schedule a drink or a dinner date</li> <li class="neutral-dark-grey-text-color">Choose an activity or place that works for you. Bowling can also be a fun activity. When my body co-operates, I find it can also be a great ice breaker. When my body doesn't cooperate, there are aids to help me at the bowling alley. People with walking aids and/or wheelchairs are accommodated, which takes the stress out of it.</li> <li class="neutral-dark-grey-text-color">If you are worried about dietary requirements (for example, I am dairy free), have a sneaky peek at the restaurant menu online before your date. I also tend to pick places where I know have accessible toilets and accommodate all my needs as a person living with MS.</li> <li class="neutral-dark-grey-text-color">Most importantly, have fun! </li> </ul><p class="neutral-dark-grey-text-color">When dating, it may come a time when you feel ready to become more intimate with your partner. It’s important to maintain a healthy sex life with MS. To find out more, read <a href="https://www.livinglikeyou.com/article/sex-and-sclerosis">here</a>.</p> <p class="neutral-dark-grey-text-color"><em>Names have been changed to protect people's privacy. </em></p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> slickslider </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Tue, 22 Mar 2022 14:45:46 +0000 aonyiuke@ipg-pr.com 8521 at https://www.livinglikeyou.com COVID-19, MS and the future of doctor’s appointments https://www.livinglikeyou.com/covid-19-ms-and-future-doctors-appointments <span class="field field--name-title field--type-string field--label-hidden">COVID-19, MS and the future of doctor’s appointments</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Tue, 12/07/2021 - 12:22</span> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="center image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2021-12/The%20challenges%20of%20a%20MS%20diagnosis%20during%20COVID-19.webp" type="image/webp"> <img width="2220" height="1480" alt="Woman looking at a laptop and smiling" loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2021-12/The%20challenges%20of%20a%20MS%20diagnosis%20during%20COVID-19.png?itok=U-n3ZGTy" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">Everyone has felt the impact of the COVID-19 pandemic, but there have been added difficulties for those living with Multiple Sclerosis (MS). While the world navigated treating COVID-19 for the general public, the MS community was dealing with the additional worry about the potential threat of a neurological condition interacting with the virus. The effect of contracting COVID-19 on people with MS still remains speculative but the effects on the general care and treatment options have been studied<sup><a href="#_ftn1" name="_ftnref1" title="">[1]</a></sup>.</p> <p class="neutral-dark-grey-text-color">The main finding is that telemedicine and virtual doctor’s appointments are becoming more common. All over the world, people saw their appointments move to virtual consultations, due to government precautions to reduce the spread of COVID-19. While at the beginning of the pandemic this caused many concerns, the benefits of virtual appointments have been broadly seen, including:</p> <ul><li class="neutral-dark-grey-text-color">limiting exposure to COVID-19 and other bacteria and infections</li> <li class="neutral-dark-grey-text-color">saving travel time and organization with carers or family</li> <li class="neutral-dark-grey-text-color">reducing fatigue and other symptoms caused by traveling</li> <li class="neutral-dark-grey-text-color">saving money</li> <li class="neutral-dark-grey-text-color">less time off work or study</li> <li class="neutral-dark-grey-text-color">convenience</li> </ul><p class="neutral-dark-grey-text-color"><strong>Preparing for virtual appointments </strong></p> <p class="neutral-dark-grey-text-color">Although virtual appointments have numerous benefits, it can also be daunting to adapt your relationship with your MS team. It is important to prepare for virtual appointments in the same way as you would prepare for a face-to-face consultation in order to make the most of the time available. For more information on how to prepare, signs of progression to watch out for and what to discuss with your doctor check out the <a href="https://www.yourms.com/#/welcome">YourMS questionnaire</a> or <a href="https://www.livinglikeyou.com/ms-explained-video-series">hear from one of our MS experts</a>.</p> <p class="neutral-dark-grey-text-color">When meeting your medical team virtually, here are some handy tips to help you:</p> <ul><li class="neutral-dark-grey-text-color">Typically doctors have 15-20 minutes per consultation, maybe more if you are seeing a neurologist. It is helpful to ask beforehand how long the consultation will be so that you can fit in your priority questions, points and concerns without running out of time. </li> <li class="neutral-dark-grey-text-color">It may not be possible for your doctor to provide all answers to your questions but having a list handy is a good way to keep you on track and ensure nothing is forgotten. Make sure you have this next to you for the consultation and maybe email over in advance to allow your doctor time to prepare for these.</li> <li class="neutral-dark-grey-text-color">Test your connection before the call begins. Whether it’s a phone call or online, technical difficulties could cut your consultation time in half. Test your internet and phone connection before the appointment to prevent this happening.</li> <li class="neutral-dark-grey-text-color">A larger percentage of patients prefer video appointments to phone calls, as they feel a more personal connection to their doctor this way. Try and arrange for a video consultation in advance as this will help with reassurance and communication by seeing your doctors’ facial expressions and body language. </li> </ul><p class="neutral-dark-grey-text-color">If you are struggling with the effects of COVID-19 on your MS care, reach out to your doctor and MS team for a virtual consultation to get your questions answered. For advice on how to have these conversations and guide your appointments, check out the <a href="https://www.yourms.com/#/welcome">YourMS questionnaire</a>.</p> <hr><p class="MsoFootnoteText neutral-dark-grey-text-color"><a href="#_ftnref1" name="_ftn1" title="">[1]</a> MS Trust. Coronavirus, Covid-19 and multiple sclerosis. Available at: <a href="https://mstrust.org.uk/a-z/coronavirus-covid-19-and-multiple-sclerosis">https://mstrust.org.uk/a-z/coronavirus-covid-19-and-multiple-sclerosis</a>. Accessed June 2021.</p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/31" hreflang="en">Inside MS</a> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Tue, 07 Dec 2021 11:22:11 +0000 aonyiuke@ipg-pr.com 8266 at https://www.livinglikeyou.com Family and Relationships https://www.livinglikeyou.com/family-and-relationships <span class="field field--name-title field--type-string field--label-hidden">Family and Relationships</span> <span class="field field--name-uid field--type-entity-reference field--label-hidden"><span lang="" about="/user/2286" typeof="schema:Person" property="schema:name" datatype="">aonyiuke@ipg-pr.com</span></span> <span class="field field--name-created field--type-created field--label-hidden">Thu, 11/11/2021 - 13:21</span> <div class="field field--name-field-expert field--type-entity-reference field--label-hidden"> <a href="/experts/declan-groeger" hreflang="en">Declan Groeger</a> </div> <div class="field field--name-field-page-components field--type-entity-reference-revisions field--label-hidden"> <div class="field-background-color-none field-banner-overlay-none field-container-background-type-none text-theme-default paragraph--view-mode--default paragraph paragraph--type--content-container existing-padding" data-less_576=1.875 data-great_576= 1.875 data-great_768=1.875 data-great_992=1.875 data-great_1200=1.875> <div class="container"> <div class="field field--name-field-items field--type-entity-reference-revisions field--label-hidden"> <div class="paragraph paragraph-layout paragraph--type--layout-one-up"> <div class="row "> <div class="col-12"> <div class="field field--name-field-layout-1 field--type-entity-reference-revisions field--label-hidden field--layout"> <div class="left image--paragraph standard-spacing"> <div class="field field--name-field-image field--type-entity-reference field--label-hidden"> <picture> <source data-srcset="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2021-11/2021%20Family%20Relations%20v.webp" type="image/webp"> <img width="2220" height="1480" alt="Laughing man in brown shirt and woman in brown dress, knelt hugging child." loading="lazy" class="lazyload image-style-oneup-layout-desktop-2220" data-src="/sites/livinglikeyou_com/files/styles/oneup_layout_desktop_2220/public/2021-11/2021%20Family%20Relations%20v.png?itok=HBxkTcl1" typeof="foaf:Image" src="data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHZpZXdCb3g9IjAgMCAzIDIiPjwvc3ZnPg==" /> </picture> </div> </div> <div class="paragraph paragraph--type--simple-text"> <div class="clearfix text-formatted field field--name-field-content field--type-text-long field--label-hidden"> <p class="neutral-dark-grey-text-color">Relationships can be, and almost always are, complicated. Now, when you also have a chronic and unpredictable condition like Multiple Sclerosis (MS), complicated doesn’t come close to describing it.</p> <p class="neutral-dark-grey-text-color">Relationships take time to build and nurture, and are often ever-changing, but while taking care of a relationship is not always easy, the result is usually worth the effort. By and large, we are social creatures and forming relationships is a natural necessity. The poet John Donne got it right when he said, “no man is an island”.</p> <p class="neutral-dark-grey-text-color">My wife and I, you and your significant other – these are particularly important relationships and should not be taken for granted. I was diagnosed with MS nine years after Jean and I got married and it totally changed the dynamic of our relationship, though the change was not immediate - it was a slow burner. Life was not over, but it was different, very different.</p> <p class="neutral-dark-grey-text-color">My fears for the future were central – would I be a good dad to my two little girls? Would I be able to contribute financially to our household? Would I be able to do my fair share of household chores? Those who know me now would not recognize the man I was back then, and, without Jean, I would still be that man. My ‘outside of home’ life continued as normal, or at least ‘MS normal’. I was never a negative person, but, in the early days, negativity would hit me when I least expected it, and last for varying lengths of time. However, I was lucky that it never dragged me down and Jean stayed by my side throughout. She carried our family when I couldn’t. She saw through my mask, knew what I was hiding and never flinched. She was, and still is, my rock.</p> <p class="neutral-dark-grey-text-color">Siblings can be an integral part of your life, if you let them. I am proud to say that my siblings and I are close, even though some of us are separated by thousands of kilometers, whilst others are less than 10 Km away. Though I didn’t intentionally exclude them, they didn’t know a lot about my MS life until I started writing about it. I find it easier to write than talk about.</p> <p class="neutral-dark-grey-text-color">My two daughters were aware from early on that something was different. Not right, not wrong, but different. Because of my MS, they have grown and matured into two wonderful caring, compassionate adults who I, and anybody who knows them, can rely on in time of need. My grandson has never known me any other way and accepts my limitations. He is a major source of my joy and pride, and a reason to get out of bed in the morning.</p> <p class="neutral-dark-grey-text-color">After over 40 years of marriage, Jean and I are living comfortably together. In all those years, she has never made me feel a lesser man because of my MS. As we grow older together and demands for our time change, we find ourselves alone together more frequently and for longer. We are comfortable in each other’s silence; we are comfortable watching many of the same TV programs. Jean is comfortable driving a bit more and I am comfortable driving a bit less. We no longer have two little girls running about the house, so less cleaning. We do have our one grandson so maybe a bit of cleaning and tidying from time to time. I still sit and watch but no longer feel guilty about not doing what was once my share of the chores. We now pay a man to keep our garden neat and tidy, one less job to worry about.</p> <p class="neutral-dark-grey-text-color">I cannot overstate the value of good family relationships; my relationships have helped me be the best I could be, and maybe even given me the reality check I needed, in times when I thought I was more able than I really was.</p> <p class="neutral-dark-grey-text-color">Relationships, both personal and professional, are an important part of your MS journey. Like family relationships, maintaining strong friendships can also be a worthwhile effort. Read more about MS and friendships <a href="https://www.livinglikeyou.com/friendships-and-ms">here</a></p> </div> </div> </div> <div class="field field--name-field-mobile-slider field--type-boolean field--label-hidden field--layout"> </div> </div> </div> </div> </div> </div> </div> </div> <div class="field field--name-field-curated-tags field--type-entity-reference field--label-above"> Curated Tags <div class='field__items'> <a href="/taxonomy/term/36" hreflang="en">You+</a> </div> </div> <div class="field field--name-field-exclude-form-bulk-paragrap field--type-boolean field--label-above"> Exclude from Bulk Paragraph Off </div> Thu, 11 Nov 2021 12:21:20 +0000 aonyiuke@ipg-pr.com 8011 at https://www.livinglikeyou.com