it’s been a long time since my last entry and I still got some unfinished entries I started during rehab but they will follow.
Just trying to get to terms with all the MS stuff – since the diagnosis I was busy 24/7, in hospital followed by the rehab program. It feels as if I completely lost sense of time…Well, what can I say. First of all, I feel as if someone stole my body and exchanged it for a faulty one and I am still trying to figure it out myself 🙂
I still got the initial problem with my right upper body – but on top, it looks like I had a relapse during rehab and got even more symptoms, a bonus round so to say.
You probably wouldn’t see a thing except when I crash into a wall or fall over my own feet, but to me it feels as if I walk on jelly, not all the time but there are also no warning signs. Sometimes I wonder if I make it up to the first floor. Then there are times when I have ants walking up and down my leg and other times when I don’t feel it at all.
Fatigue….where do I start but this bit is really annoying as I used to have so much energy and now I have some mornings I hardly get out of bed and need to nap several times. Also today, it feels like a bad bad never ending jet lag but I am too exhausted to take a nap. Very rarely my throat goes numb, too, resulting in swallowing problems – not so cool.
What really worries me is that it starts on the left side, too – so yes, sometimes I freak out for a second and wonder what would happen and if it goes away again or leaves me with a disability so early in this game. It could all happen, that is the crazy bit. I met some amazing people during rehab, also with MS and know how fast it can go even with drugs and all possibilities that are out there.
My drug, Rebif, is a constant reminder that am “sick” or let’s say different. Another battle as I hate injections and Monday, Wednesday and Friday I cry a little and play my injector game – it takes me at least 10 attempts to push the button and release the shot. But I must say, since I moved the shots to my belly it got better and is almost painless. It’s just the idea of the needle that I hate and the red spots! You should see my belly, it takes approximately 10 days for one to disappear so you can imagine how it looks – if you are injecting yourself, I would love to hear your tricks to avoid these red spots 🙂
I will return to Amsterdam this week and try to find my way back to the real life – well, if I don’t need another round of cortisone, but I ll take it step by step.
It’s still like a nightmare and I feel so so sorry and kind of guilty – not for myself, but for my parents and I wish I could do something to take their pain and worries away. Since my brother died we got so close and this diagnosis got us even closer.
Well, hello tears and brain farts, enough for today. Hope you are all doing well and I am sure I will see some of you very soon! x