Reading through some thoughts back in 2001 (that didn’t make it into my book) – thought I’d share them here in my blog.
‘Sometimes, I regret that my attitude can be less giving than it used to be. I have a pretty short fuse, but can’t seem to help it. If I feel mediocre than I don’t have as much patience, & things become harder than usual, especially if my legs or arms are painful, than all I want to do, really is just rest, but I’m not a single person, without family commitments. If I can do something- I want to try. Not rest around all day, as it wouldn’t be fair on the others. Things aren’t quite that bad (thank goodness). But having said that, if I feel very much lower in energy than normal & worry I might be on the verge of a relapse, I feel I really do need to save as much strength as possible, by not over doing things.
For instance I’d planned to take H (aged 9) & his friend from football practice after school at 4.15 p.m, straight onto tennis, & then go with Josh to his maths class until 5 p.m. & finally collecting H before coming home. I lay on the bed thinking I’d actually prefer, to just remain resting, but take Josh every week to Glenys who helps him with simple math’s, & didn’t like to break the routine.
That particular night although the football practice ended at 4.15, H & T didn’t appear for another 20 minutes, which meant we didn’t get to tennis until after 4.35, & Josh’s math’s lesson till 4.40, which in turn meant he only had 20 minutes doing number work, so I felt quite cross. Outside school I’d watched lots of other boys walking past my car, as early as 4.15, so where was H! He apparently had forgotten I was in a rush!
I could have said “Never mind- it doesn’t matter”, but the way I was feeling that day made me just rant “What’s the point of spending £30 a term on tennis lessons, if you miss half of it, & you’ve made me so late for Josh’s math’s lesson, etc?”
Probably quite frightening for H’s friend, a passenger in the car, but I wanted to just explain; I’d spent 10 minutes standing by the side of the football pitch, with my legs really hurting, then another 10 minutes in the car, with Josh constantly asking “can we go now”, “ “can we go now”, “can we go now”!!!!. So I felt wound up!
When I’m not on good form, these things can get out of proportion, so on that day I let rip and H was feeling a bit delicate, because he hadn’t been picked for the football team. I don’t stand around the football pitch, chatting with other mums, as the pain in my legs can becomes overwhelming. Feel I may pass out unless I find something to sit down on, or failing that to lean on to. This is very hard to impress on someone so young, & seeing the situation from their eyes, must appear boring mum always complaining about her stupid legs.
My cheerfulness didn’t reappear that evening. Had arguments with H (poor soul) about not eating up his tea, doing homework, reading enough books, wanting to stay up late & watch Liverpool on the TV. Anything really that you could imagine, & all directed his way. Josh does not have to take any of this flak, as he eats all his tea, has no homework during the week (& when he does get any, he loves doing it, because it is normally very easy tasks), & he wasn’t interested in the football.
H went to bed feeling like he had been picked on, & in my heart of hearts, he had, which depressed me, as he didn’t really deserved it. I shouldn’t pick faults with someone so small, all in one day. He’ll get a complex, & honestly he is such a great kid, coping so well with everything that is thrown at him. It’s not his fault he has a mum with achy legs, who may be less patient, than other mums!
I thought we would have a fresh start the next day & hopefully I may feel better, so I’d try extra hard to forget all this. We’d be best of pals & I’d help him with his homework. Tell him who won the Liverpool match, or even tape it for him, to watch another day.
It’s a difficult condition, MS -a real nightmare at times. It touches everyone, I can’t help it -mental & physical aspects are affected. I hope the good days outweigh the bad ones & the family don’t suffer too much.
24 hours later, it appears obvious, why I have been less patient than usual. I’m verging on a relapse, I still am not sure how bad it’ll be.’
It’s quite funny reading this sixteen years later – a busy time- seems like yesterday.