For blogger Alexandra, living with depression helped prepare her for life with MS. She shares what the two have taught her.read more
For people with chronic or incurable illnesses like multiple sclerosis, hearing the phrase “don’t worry, it will get better“ can sometimes feel a real slap in the face, especially when you‘ve just been diagnosed. When I find myself trapped in a similar situation, I feel like saying, “If one more person tells me it’ll get better after a good night’s sleep, I am going to scream! I need a brain transplant, not more sleep! Don’t you get it?!”
In all fairness, people without our kind of illness have no physical, mental or emotional understanding of what it feels like to live with the pain it causes. They also likely do not realise how it feels to falling asleep every three hours from sheer, physical exhaustion. Although you may wish they could walk in your shoes, even just for a short period of time, you are not so evil that you would wish your illness upon anyone else. So instead your blood pressure rises steadily for about ten minutes, and then you move on with your day.
Although life doesn’t always turn out the way you thought it would be, that doesn’t mean you have to settle for something less. Almost immediately post-diagnosis, you start to learn different kinds of coping skills, not because you want to, but because you have to. That’s where the journey toward a new life truly begins.
If you want to fully integrate your illness into your life, it will take work, and it might take some time as well. Nobody says it will be easy, and nobody says it will be pretty, but once you’ve realised there is now a new you looking back at you in the mirror in the morning, a purposeful and meaningful life may greet you soon after.
In fact, some people report a happier, fuller existence when they receive a life changing diagnosis, because their whole outlook changes. Just remember to be kind to yourself; if you don’t, you won’t be much use to anyone else. On terrible days, love yourself that little bit more.
Now that I am in my 12th year living with MS, I am much more at ease with its frolicking nature. In the first few months to a year after my diagnosis, I felt that taking care of myself was, in fact, a very selfish thing to do. My then-manager forced me to take time off work when I went to the office feeling as if my body was turned inside out, although I maintained my place was in the office, and not my bed. Gradually I realised he was right. Each sick day, though, I felt (unjustified) guilt because I knew there would be more days like them in the future. After all, MS is as MS does, and this wasn’t a little five-day flu that would be gone by next week.
From the day of my diagnosis to eventually retiring from work, I have been fortunate in the way friends and colleagues have gone through the whole process with me. Despite spending an awful amount of time in each other’s company, it did and will continue to happen that friends won’t see the subtle wincing when shooting trigeminal pain enter my ear, eye or cheek, or when fatigue suddenly takes over. At first, I felt ashamed and didn’t know how to react to my body’s new way of being, but the people that mattered the most stood by me, and still do.
Life with MS is a learning curve, so do what you can to improve your health in the long run, i.e. healthy diet, exercise, holistic treatments and so on. Although “getting better” won’t necessarily involve fewer lesions on your brain or spinal cord, you can do something about its negative connotation.