And I say that because we have temps in the 90’s today. It is HOT. And for anyone with MS, you know that the heat is a pain in the you-know-what. So I am keeping myself into my air-conditioned fortress, only stepping outside if necessary. I guess I shouldn’t complain because in a few months we’ll be buried in snow. Depressing thought.
I had an interesting conversation the other day. I was @ my Doctor’s office for my monthly Tysabri infusion and seated next to me was a woman, probably a few years younger than my 38 years (OK maybe quite a few years younger). She seemed very nervous. She was there getting solumedrol for an MS flare. She was asking alot of questions about the side effects of the solumedrol (which there are many) and she just seemed to be scared. So I struck up a conversation. She was just diagnosed about a year ago, right about the time she and her husband were trying to have a baby. That went on hold while she dealt with the news that she had MS. In the last year she has had 2 flares and they are trying again to get pregnant. She had alot of questions about pregnancy, attacks, emotions, you name it. And I felt like I could help by talking to her. One of those “been there, done that” situations. Because I feel as if I have certainly been almost everywhere and done almost everything in terms of this disease.
But after she left, I was struck by how much she reminded me of me, 14 years ago. The questions, the uncertainty, the fear. I still have those feelings, but not so intense anymore. Am I getting used to having this illness? I don’t necessarily think I am getting used to it, I am just accepting it. I have it, I have to admit it, but I just live my life and go about my day. I am getting better about resting and trying to take care of myself. Maybe that is all part of acceptance. There are days when I am scared. Scared of the future, how will I live, survive, cope? And there are days when I can almost, not quite totally, but can almost forget I have MS.
Talking to her, I wanted to make her understand that a diagnosis isn’t a death sentence. It is more of a life-changing sentence. I told her all of the things I do: exercise, riding, etc. The need to be fit and active. Eating right (most of the time). Somedays putting yourself first. And it’s OK to have a pity-party once in a while. But only once in a while! You get to pick your path and you only get one chance. You can decide to live you life and see what is in the road ahead, or you can choose to sit out on the journey. The way I see it, we have already passed a huge hurdle when we were diagnosed. Now it is up to us to finish the trip, and hopefully enjoy some of the scenery.