OK, so that makes the past few months sound more dramatic and exciting than they actually were but it has been a journey anyway. The tail end of last year was pretty tough for me with worsening symptoms and a MRI confirming a relapse. But here I am in the new year and where has that relapse left me… well after the initial jubilation that the MRI results actually agree with how I’m feeling and the buzz of hospital visits and steroids I’m feeling a bit flat. The remitting part of my MS is predictably slow to show itself so now it is a waiting game to see what symptoms dissipate and which are keepers.
Here’s what I am struggling with – how long should you spend accepting what has happened, recuperating and giving your body a chance to heal before you power through with exercise and rehab?
My case was further complicated by the fact I caught a nasty cold so have been mostly bedridden for two weeks, thanks for nothing flu jab 😉 I understand that the only way forward is with hard work and physio but when you are sluggish and fatigued how far should you push yourself and how soon? Motivation is also at an all time low. Turns out I don’t mind being forced to down tools and stay in bed
Another consequence of my relapse is that my hospital care team have taken me off my medication in order to move onto a stronger option called Mavenclad, aka Cladribine. In theory there is no wash out period necessary between these drugs but a possible side effect of the new drug is lymphopenia which is a lowering of the lymphocyte count in the blood, this affects the immune system and can leave you open to infection. As mine was already a little low we have had to wait for mine to get to normal levels. In essence this has led to me being off MS medication since my relapse and that is an odd place to be. I’m not sure how I feel about that. On one hand it means one less tablet a day therefore less toxins and drugs for my system to cope with but on the other hand I’m at the mercy of my MS giving it free reign with my immune system.
This isn’t the first time I’ve changed medication, the first couple of times I found it very stressful. I have had a strange kind of bond with the medications while I was taking them and was worried the next medication would have more severe side effects or wouldn’t work as well, change can be scary. Each time I trawled the internet for information and views of others on the same medication before making a decision, which I found difficult and stressful. There is never a definitive right or wrong answer.
This time around I am a bit more laid back, this will be my fifth DMT so I’ve been through all this before and I think I am less stressed about it. What will be will be. This medication is pretty new and I haven’t found a huge amount of information or articles about people’s experiences with it online so I do not have much information to go on. I think that is why I want to document my experience of it. I want to keep track of how it makes me feel and any side effects. I hope that my writing about it will be useful to someone in the future and maybe make their decision to change or not a little easier. Fingers crossed all my bugs clear up and my lymphocyte count settles so I can get started! I’ll keep you posted 🙂