Hi everyone, hope life is being kind today.
Unfortunately for me its not. I had a meeting with a member of the brain and spasticity team yesterday. I have never seen the same person on appointments. Initially I saw the main Consultant and then his Registrar and yesterday another one of his team. It was not a positive experience. Basically as I am secondary progressive it was “well there is nothing further that can be done for you so the best you can do is live with it and make the best of trying to keep it under control”. I knew this was going to happen eventually (I’ve had 15 fair years since DX) but the last year has been very active and aggressive. I am no longer able to work, life and everything has been turned upside down and now I’m being cut adrift. Seeing my MS nurse at the end of the month which will be an interesting meeting. Spent most of last night awake and thinking about what I was told. At one point I thought “oh well tomorrow’s another day and I will feel more optimistic” but that hasn’t happened. So is this my life now, housebound, unable to move more than a couple of feet (only with aids) and have to have my OH with me when I go out in my wheelchair for appointments (it’s taking it’s toll on my relationship as well). I’ve now lost all confidence and any ability to see anything good in absolutely anything. Right now life sucks and all I can see is negativity. My Neurologist has even taken a back seat!
Sorry for the rant, can’t even cry cause I’m so uptight about the whole situation, I might as well just retire to bed until the end arrives, at least that’ll be warm and comfortable. Linda x