90 over 60.
16:18 Tuesday 18 Sep 07
All I want to blog about is J’s MS and the way it’s so bad right now. I alternate between angry that no-one will do anything (Interview to be an MS Nurse. “Can you say ‘There there ?’”) and I say WILL because they say so very little and do even less that I can’t see the point in them unless there really is something they could do and the flip side from angry is sad because it’s frustrating us both.
She has no feeling in her feet, she has only gross motor movement in her hands, is numb all the right side, is increasingly numb on the left. Her BP is something like 90/60, her resting pulse is 130+ and there’s no-one to really help. She is much much worse than even 2 months ago.
Steroids are now proposed - if it’s a relapse she will improve (a relative term if ever there was one) with them (although they have their own side effects) and if it’s not a relapse and part of the slide ever downwards then she’ll not feel better. So it’s feel crap and maybe feel better.
If you are on Interferon, do not stop. Do not let a consultant talk you into stopping.
Sounds like I’m moaning or something and I’m not it’s just frustration. The same frustration that thousands of other people must feel with their ills. And it’s not wrong to feel this way. It’s not exactly productive either but sometimes bitching about something does let out some pressure.
The other day while testing the soundcard I played a few seconds of the music to Koopa Troopa beach in Mario Kart 64. We used to play that game constantly. J asks the girls to set it up and they play. Today I asked J if she wanted a game but she said she’s not very good because she can’t hold the button down to go faster. That’s sad. It’s a way of not losing too - but it’s still sad.
The MS is getting worse and the future is becoming more .. focussed, sharper. Not how things are planned but then what is?
I was so swept up in these thoughts and more I completely forgot 2 photo challenges and other work I’d got planned too. Diversions are good. I need a new gadget. And that soundcard.
1
I make my living with words, and after reading this I have
none, but I am filled with emotion.
All my best,
Father Luke
03:11 Wednesday 19 Sep 07
2
So sorry to hear things are so rough for you and J. Words always feel so useless in comparison to something as big as this. Though you’re right - healthy venting is good, I’d imagine if I were in yours or J’s shoes I’d do a lot more of it - though it’s hard for me to imagine how it must feel for either of you.
Best wishes to you and J - I know we don’t talk much but you’re often in my thoughts. People such as yourselves are the real heros of the world I think (hope that doesn’t sound patronising, it’s not meant to!).
15:17 Wednesday 19 Sep 07
3
Mark - a lot of people who know you are going to be reading this and feeling really sad. Words are inadequate but all of you are in our thoughts and prayers.
15:47 Wednesday 19 Sep 07
4
If there is ever anything we can do to help, call. We are only two hours or so away. Seriously! Any time - day or night!
17:11 Wednesday 19 Sep 07
5
You sharing what is going on at home means a lot to me, and helps me keep my own life in perspective. My thoughts and energies are with you.
19:40 Wednesday 19 Sep 07
6
This is devastating.
http://news.bbc.co.uk/1/hi/england/7002179.stm
I cannot imagine that and for the boy and the father it must be …. something I can’t describe.
20:10 Wednesday 19 Sep 07