LLY blogger Jamie shares her experience of lassitude fatigue and her advice on how to deal with tiredness when living with MS.read more
Living with MS has a huge impact not only on the person with MS, but on their families and friends too. Sometimes MS symptoms make it too difficult to take part in events and activities with friends. Living Like You blogger Birgit has shared her thoughts on the responsibility for people with MS too, to be there for their loved ones, to give them some quality time and share beautiful moments with them. For Birgit, it is time to stretch her limits and take the challenge to try to have these moments with her family and friends, to help everyone in staying positive.
When you live with MS, life is not always easy. Sometimes you struggle with symptoms like pain or fatigue and you are not able to manage the household or be there for the kids. You might also have to say “No” when asked to go to events or to parties or for a date with your partners. We all know this; MS has a huge impact on our lives and the lives of those who are with us; family, friends, husbands, wives, kids and many people more.
There are some moments when these people need extra patience and stoicism from us. We may feel that we aren’t able to do things because we have no energy. We are tired, exhausted and struggling with fatigue. But for me it isn’t so easy to just say “No” and to take care for myself. I often become disappointed with myself, angry and frustrated. Because it means also missing something I would love to experience.
That is when I experience what I call the “Super Power” moment. I get the super power from my husband or from friends because they are the ones who understand my situation. They help me - and it wasn’t easy in the beginning; I often struggled with how to explain why I can’t do things or prefer to stay at home. But they know that it’s about self-care and it’s not selfish. I had to learn this. Over the last 14 years I’ve learnt how to explain this in very clear language.
I have also learnt that I have to take action against fatigue, and other symptoms. I have to do so for my husband and my family. I have a responsibility for the people around me because they do so much for me and have a very positive impact on my life. They are always there when I need somebody. These people give me their love and friendship, and they also give support in a practical way.
Our supporters are those people who try to understand our situation and give us hope. They become our voice when we are not able to say anything. But their power is also limited; they can’t do everything for us. In turn, their reward is the nice moments we have together – they need this quality time and so do we.
So, it’s not always an option to stay on the sofa in an “MS Patient” mood. You need to be there for your supporters. In truth, sometimes I think it could also be a comfort zone thing when we say we can’t do things. So, we have to think, is this really an MS issue, am I really fatigued?
Not to go out because it could be a little bit uncomfortable for us (as opposed to when fatigue or other symptoms really are getting in the way) is not always the best option. A psychologist gave me good advice many years ago: “I can understand that you have limited resources, and that you may be anxious about something. But this is life. In life, you can always do something. Stay positive and take little steps forward; stretch your limits.” And this is the important part: “You don’t do it only for yourself, you also do it for your family. “
The psychologist was right. I have started to find things I can do in order to be able to have this quality time with my husband. I had an idea to create specific moments called “Quality time with my family”. I started to involve my husband in my activities like sport or cooking together. We’ve found common interests in the last few years and we enjoy our “Quality time” sessions. The magic word for me is: together. Over the years, we’ve started to take care of ourselves as a family and then it also happened with friends too.
We have all found a way together. My personal team. The people behind me.