MS takes a toll on you. Physically and emotionally. The physical part there is not much one can do about. Someone diagnosed with a chronic disease will have to accept (notice I am not saying surrender to – but more on this later) the fact that their condition will deteriorate as time passes. Deteriorate in various degrees and forms.
I started this blog with the intention of showing people that MS will not stop me in my tracks, and is not a “death sentence.” However, I thought that simply showing how strong someone with MS can be would give the wrong impression, and people also need to see the difficulties in living with MS.
Disclaimer: I have to admit that I have been relatively “lucky” and I can still be active almost nine years after my first episode.
Inevitably you feel bad because you can no longer do all the things you want to do, or even all the things you could be doing if MS were not a factor. The feeling becomes even more intense when you see the people you care for and who care for you clearly upset over the whole thing, although they might not say so. And in the end you isolate yourself because you feel that you can not keep up.
This is where the – often – unsolicited advice comes in, “You need to eat healthier. You need to exercise more. You need to slow down. It’s all in your head and you need a positive outlook.” (And here’s a few more) While my response is usually mellow, in this case I have to say what I am thinking of every single time I hear of advice like these – PLEASE! I know that people are simply trying to be kind and nice, but it comes out all wrong. Do they really think that the person they are talking to has not tried any or all of those things? It’s just that sometimes you need to let go in order to feel that you are partaking in the life (or lifestyle) that others are living. Sometimes it is just plain hard to follow that advice, not because the spirit is unwilling, but because the body is not cooperating. (I have tried many times to do so, but I do not seem to be able to make most people understand just how hard living with MS is, even if you seem to be perfectly fine)
Then again, there are the few times people do actually get you – or at least try to accommodate you. I recently had one of those moments, by a very unlikely source that very clearly told me (and I am offering snippets of a 15 minute conversation here): “You are being silly. No one thinks less of you. Everyone has issues and we accept them. Why would it be any different for you? If you are not feeling well, we will understand. And if need be, we will come to you. If you can not keep up, we would be glad to slow down.”
Truth be told, it is not like I had not heard those words coming from other people around me before. But it feels good to hear it again and again, reaffirm in your distorted mind that people understand and will stand by you. (This is one of the side-effects of a chronic illness like MS, but more on this in another post later on).
These are the moments when someone with MS will reaffirm their will to continue functioning with other people (no disrespect to those that have been isolated), to continue fighting and not simply surrender to the inevitable. These are the moments that you accept that your life is different, but you can still have a life despite the difficulties, you can do things despite them not being in line with what a “normal” life is portrayed to be.
Being relatively new to the blogosphere, I came across a post recently that perfectly describes this specific conditions, one that could give you hope that despite the “hardship” there can be adjustments that will still allow you to enjoy life to the fullest. To living a full life. With the kind approval of Birdingwidow, I repost her blog post from 25 March.