When I told Hubs that I was going to write a blog post about the 5 things that multiple sclerosis has given me, he was incredulous. ‘What has it given you? It should be the 5 things it has taken away’.
I could write a novel about the things multiple sclerosis has taken away from me – and maybe one day I will! Life is
bloody difficult much harder now, but maybe reflecting on a few of the good things that come out of having a chronic illness like MS will help me and others to feel a bit more positive. So, here goes….
I appreciate the little things
Sounds cheesy, but there is nothing like a diagnosis of MS and the symptoms that go along with it to make you appreciate when things are good. Peonies. Sitting in the sunshine with Hubs in Amsterdam, celebrating our 10th wedding anniversary. Playing board games with the kids. Belly laughs at the kitchen table. The time I was able to randomly walk crutch free for the 10 minute journey home from my parents’ house. Getting home made cards from the kids declaring that I am ‘the best Mum ever’ (especially when I don’t feel like I am). Spending time with my parents, sharing a glass of wine with them. These are the little things that cheer me up when I feel rubbish.
Nothing has tested my relationships more than my MS. it is hard to rely on others when you are so used to being independent. My relationships with friends, my parents, my siblings, my children and my husband have all changed somewhat – I rely on others more, and can do less, meaning that my husband does most of the ‘physical stuff’, whilst I organise and plan. My kids don’t know the ‘old me’ (well, Alex might have little snippets of memory, but not much), only the Mum who needs a lot of help – and they give it to me in spades. My husband and other family members do remember the ‘old Jen’ – and they treat me exactly the same, which I appreciate, but I know it is hard for them, seeing how the illness has affected me. I still feel as close to my sister as ever, despite her living over 10,000 miles away in Sydney. We write, Facetime and Facebook each other more often than we would have done if she were still in Glasgow. My parents live near me and help out if I need them to and my friends treat me no differently to when I was more mobile and less fatigued, despite me sometimes having to cancel plans or say ‘no’ to invites. Ultimately, MS has made me be even more thankful and appreciative of my friends and family. Life is short, you never know what is around the corner; having people you can trust and who love you is worth its weight in gold.
A ‘healthier’ body?
Ok, so this is a bit of an oxymoron. My mobility may be crap, I may get tired just by having a shower and my toes and legs may randomly cramp and spasm but…. I also follow Overcoming Multiple Sclerosis (OMS) which emphasises a plant-based diet, regular exercise and meditation. Ok, so I can’t say that I am 100% compliant, especially with the meditation and exercise side (difficult if your legs feel like lead and you just feel like sleeping) but I do follow a plant-based diet (no meat, dairy, eggs) 99% of the time and try and meditate when the house is quiet. I was always a bit sceptical about meditation but, since doing it, I can definitely say that it helps to ‘quieten the mind’ and generally make me a more chilled out person, as does regular-ish yoga practise. Following the OMS diet has reduced my fatigue levels and, research shows, reduces my risk of developing heart disease, diabetes and other chronic diseases. If you had told me 5 years ago that I would actually enjoy eating mainly plant-based, I would have laughed. But is amazing how quickly your tastes change. That doesn’t mean that I don’t crave baked camembert and a
bottle glass of red wine, I just try and keep the cheese to a one off around Christmas time.
Lack of energy leads to me being able to do less and having to be selective about what I do do. Sometimes it is difficult to say no, but, since being poorly, I have made myself do it because I know that I am only doing myself a disservice if I don’t. It may frustrate and annoy people but, to be honest, I feel better for being upfront and I am proud of myself for standing my ground. Those close to me know that I will always try to do something if I can but if I have to say ‘no’ or cancel it is because I need to, for my own sake. I guess I could say that having to say ‘no’ has made me mentally stronger, as has constantly seeing other people living the life I want (I am so jealous of my friends who can enjoy clubbersize, or dance all night if they want to). Constantly being reminded that the life plan I had in my mind has now gone out the window has made me realise the importance of having a new goal or dream. What that is, I don’t know yet, but I am determined to find it.
I like to think that I have always been a tolerant person, feeling compassion and a level of understanding for those that go through hardships. I help people in my NHS job and come across people from all walks of life, often very, very different from my own. But, in actual fact, when I was able bodied and didn’t have symptoms of MS, I truly didn’t know the impact that disability can have. I would wonder if a person was truly disabled if they were able to walk into a shop after parking in a disabled space. I didn’t consider that not everyone in a wheelchair can take part in wheelchair sports, due to issues related to pain and/or fatigue. I thought that ‘a good rest’ would help if a chronically ill person said that they were tired.
I now know that I was ignorant. No-one really knows how it is to be disabled unless they are themselves – that isn’t a complaint, just an observation. And that is why things like forums and chatboards are a lifeline – I have connected with people like me, people who understand. And that is what I also hope this blog does – act as a support for people who need it.
Yep, having a chronic illness sucks, but taking the time out to appreciate the good things makes it marginally better. What kinds of things help you when you are feeling down?