What about when you don’t take medication? Many people choose not to for long periods; like super talented news reporter Stephanie Scewan. Many people do. Many people’s symptoms necessitate it. Some people feel their symptoms don’t. Two people could have the same symptoms and manage it differently.
Most people I meet with a diagnosis of RRMS in *real* life, and in *online* life, take medication. The fact I do not is something I am hugely and overwhelmingly grateful for. I am confidant that if I had pushed my Consultant 2 years ago. At a time when I was being diagnosed and was feeling ill and frightened, he would have put me on a medication. and I would most likely still be on that, or a similar medication now. The fact I am reasonably well and don’t take medication seems another thing altogether. How many people who were put onto medication at that frightening and vulnerable time have remained well but put it down to medication it is impossible to know. Short of walking around with my MRI scan laser printed onto my t-shirt I often feel a little judged by those who I speak with in the real and online world when I tell them I don’t take medication and I am reasonably well. Relapse free. To be honest it makes me feel a bit of a fraud. Like I don’t have the *real* thing (see my last post). I am obviously saddened by this as it does not celebrate the fact that this horrible disease can take many forms and courses – including benign, to which I aspire. Including a course with very few relapses. I like to think the radical changes I have made to my life have guided the course of my MS so far at least a little bit. And at most, a lot.
Of course the radical changes have been exactly that. Radical. Giving up meat. Giving up dairy. Changing a career that may mean you earn less as a result has many implications both financially and emotionally. Committing to exercising every other day. To meditating. To spending time learning and educating oneself about the *actual* evidence needed to argue the case for the importance of lifestyle management of MS symptoms, when it is not actively encouraged in mainstream medicine or even mainstream patient support networks. To take vitamin D and omega 3. Is it hard? Of course it can be hard, at times.
So yes I could say “well, if my docs don’t recommend these things then I am not going to do them. The evidence just isn’t there…”. But that’s just not me. Because when you start to do a bit of digging the evidence is there. It’s real. There is growing evidence that people who make these changes reduce their relapses by about 30% – which is the same as most medications can offer any of us. Many people who live with symptoms of MS for many years never even relapse while following these lifestyle changes. Do you hear about them in the mainstream MS information very often? Perhaps when peoples Doc’s start recommending it, other people with MS will have the hope and support to make these radical changes and start to feel empowered to manage the debilitating symptoms of MS without considering medication as the only option. I know for many it is essential and perhaps for me too, one day. What I am talking about is an open, supportive dialogue that gives accurate and inclusive information.
I know people who have looked at the same evidence as me and felt it ‘not good enough’ to give up certain foods. To make any changes to their life. And that is their own personal choice. Me? When someone tells me I can make these changes and there’s a chance it may change the outcome of the MS. It might slow progression of MS. Then I am more than happy to give up my pizza.
Sometimes I feel excluded from the MS world because of this. I have read comments on particular forums which suggest that thinking in this way is basically “crazy”. That they wouldn’t make these changes as “there’s is no evidence”. Suggesting people like me are “cranks” and “wacko”. At times it has left me furious and hurt. Sometimes I’ve cried. Now I just don’t read them. I don’t need that kind of *support*. Please understand I am none of those things they call people like me. I am educated, objective and strong. And I am well. I am lucky, yes. But I am not superhuman. Nor am I martyr. I’m just a regular person who happens to be committed to doing everything I can to be well for as long as I can. Even if it means no pizza.