I always thought when I had a relapse of my ms it would be so clear and obvious that there would be no question around it. But I have realised that isn’t the case – for me at least.
When I was diagnosed I had it in my head that things would die down to a low, manageable level and then stay there until some large event of pain or numbness etc. would signify that I’d had a relapse and needed to look at reviewing my medication. The thing is, with regards to symptoms, I have found them to be pretty much ongoing. I have just found ways of managing them and managing my life around them. They do fluctuate, week by week, day by day, but they don’t seem to really ‘get better’. Not yet anyway. Obviously it’s only been 7 months since I was diagnosed so this could all change.
So relapse (at the moment) for me is about new pain or symptoms that last more than 48hrs. Over the weekend and the beginning of this week I had new pain and loud noises in my head and some pretty heavy duty fatigue – this has been considered, by my ms team, as a suspected relapse. It certainly felt like one.
Another thing that puts a question mark over it is the fact that if you have even the slightest sign of infection in your body or you have a big change in hormones it can cause unbelievable havoc with ms symptoms. If something causes your immune system to increase its activity, even slightly, it increases the number of those troublesome cells that attack the nervous system – causing the increase of problems. For example if my bowel disease acts up I can almost guarantee I’m going to have a tricky time with me.
I am learning all of the time about my ms and the way it affects me day to day – and mainly how changeable it is! I am endlessly fascinated by my mind and body’s ability to heal and bounce back from all the stuff it has to deal with.
Will I ever have a week with no fatigue or pain again? Who knows – I think it’s far too early to tell. I know I’m doing everything I can to help it so just got to try and keep the positive thought processes going and allow myself time and space to feel all the emotions that go with it. Always trying to be kind to myself and shrug off the highly ignorant judgement of others!
Would love to hear if anyone else has experiences with chronic illness they would like to share and please get in touch if you need someone to talk to about stuff – I know it can be difficult to share with the people you love.
Thanks for reading! 🙂