So the inevitable happened.
My positive mental attitude towards my new diagnosis has slipped in the last few weeks and I have been finding the reality of it all a little difficult to deal with.
Symptoms wise I am OK, no relapses since starting Copaxone injections, so I know I don’t have an awful lot to complain about but I think the whole being positive, and the thrill of loosing weight with the diet change has just run out now. The novelty has worn off as it were.
Since being diagnosed, I have had my big US adventure to look forward to and since I have come back home, it is like: Oh, it wasn’t a dream. Like this is really happening to me…
I am over the initial shock of the diagnosis, because it was an awful shock, but now I am left with the reality of it.
I think it is the ‘What If?’ questions that are driving me crazy. No one knows how bad my symptoms are going to get. No one knows when the next relapse is going to be. No one knows if the dramatic diet change is going to reduce the lesions I have. You can drive yourself insane thinking about all the ‘What If’s’.
The final straw was seeing a friend this weekend. She brought another friend with her and he was saying he didn’t know anything about MS. I said that a lot of people get their ideas about it through films and TV but they are not always accurate and often portray the worst case scenario, which is unrealistic. He said that the TV show West Wing won an award for their portrayal of one of the main characters who had MS. I have not seen it so I thought I would google this character’s story lines and have a read, seen as it was award winning. So after reading about how he kept his condition a secret while he was elected President, then investigated assisted suicide in case his symptoms became unbearable, then lost his sight during a relapse, then had to keep playing chess to measure if he was loosing brain intelligence, I stopped reading.
All the ‘What If’ questions were in overdrive. I didn’t sleep that night worrying about whether these things are going to happen to me one day. I know this friend thought he was talking about West Wing in a positive way but I was too fragile to be reading things like that.
So after a good cry and a totally sleepless night, I had a good, hard chat with myself. I was soooo angry at myself for Googling because, of course a TV drama was going to make MS sound dramatic!! Why did I take any notice of it?! At the end of the day, the writers have the job of keeping viewers interested. It is not real life!
No one knows what is going to happen tomorrow. That is true whether you are healthy or an MS warrior. So there is absolutely no point in worrying about what may or may not happen. Each MS warrior has a TOTALLY different experience so there is no time scale or sequence of events that will definitely happen to you. The best thing you can do is live in the moment. I know people say that phrase all the time but I think I need to say it to myself every morning for the next few weeks to really hammer it home. To make myself listen.
In terms of symptoms, my best tool for measuring what is happening to my body is to listen to it!!!! Rest when I feel tired. Do things to relax and look after myself, like having a bath or a massage. Not even a doctor can tell me how I am feeling, only I can feel what my body feels and the least I can do is listen when it is trying to tell me something!
I have also learnt this week that sometimes you have to find out the hard way who you talk to about having a lifelong illness. I have been surprised in the last 6 months as to the people in my life who I thought would be my main channels of support that have totally let me down, and those I hadn’t counted on have come through for me.
I have learnt the hard way that there are some people in your life that you talk to about your condition because you know that they will listen to you moan, and say things of comfort to you, and there are some people who act like they understand but say totally unhelpful and quite often insensitive things in response. It doesn’t mean they are bad friends or anything, it just means they are not the people you call when you are feeling blue. They will be the ones you call when you need to think about something else and step out of your situation.
I have also learnt this week: Never, ever, EVER Google anything!!!! It will not end well.