Exactly 6 months ago, all of a sudden, the lives of all of our family changed when my partner got Meningitis. On that day, after leaving him in hospital, I came home and wrote about what was happening. I still didn't know at that point that he had Meningitis, and I certainly didn't realise for how long, and how much, it would affect our lives.
We were told and we've read no end of times that 6 months after you have Meningitis you've pretty much recovered, you've reached a level which is where you will be, with incredibly slow progression for any remaining symptoms. We are 'back to normal' but it's not where we were. Some of the symptoms have gone completely, some are hidden almost all of the time, most show up as soon as stress and tiredness come into play.
I think it's easier to list, so here in no particular order -
1. Tiredness. This is the biggie. He still needs naps and sleeps a lot, and it doesn't matter how much he sleeps, he still feels tired. When he's tired he can't cope. That's standard for anyone, but with him it comes a little more quickly and it's all consuming. There isn't any grey - he's coping, he's coping, he's done.
2. Concentration. He can't drive distances or concentrate too hard for too long, it really wears him out. After 2 hours driving he needs a nap, he just can't carry on any more. After a nap he's fine, but concentrating is still much harder for him than before and he favours the familiar, the easy.
3. Sharpness. He's pretty sharp now, he is back to making sarcastic and witty comments, not as often, but they're there. He can join in with us when we play games, but once he's tired he can't win, and he gets tired before the rest of us - whatever time of day it is.
4. Pain. He's still in a lot of pain and is beginning to accept this is likely to be his future and is looking at walking sticks. The B12 sadly wasn't magical and didn't just make him better, although it definitely improved his temperament massively, it didn't improve his pain. His limbs hurt and the more he does, the more they hurt. Lifting and carrying isn't something he's really capable of, and walking leaves him limping and sore. He has persistent pain in his arms from using a computer and writing ~ which is basically his work.
5. Stress. He can't cope with stress like he could at all. It makes his head hurt and he gives in. He goes for a nap or just falls asleep when it's too hard, that's his coping strategy. It's hell on me, but it's all he can do.
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| The response to Tesco not bringing our shopping on time. |
6. Memory. Some things and even entire people and events (mostly from the 6 month period before he became ill) have gone completely. He can't remember them. The whole period around the time of his Meningitis is sketchy and intermittent and mainly missing. His short term memory is poor. He has to write down everything and still forgets. He can't take charge of moving things or knowing where things are because he can't remember and won't have any more chance of finding them than I do. He sets timers on his phone for everything. He knows that he's lost a lot of memories and that making new memories is haphazard and in his own words -
"I thought my memory being crap would bother me,
but it doesn't, because I don't remember".
7. Persistence and determination. At the moment there is none, anyone can win any argument with him because there is no fight there, everything gets left half done or put to one side if it becomes more tricky than expected. When it gets too much he goes to sleep - or really should do. A switch goes off and he just needs his bed (see point 5).
8. Immunity and resilience. When he catches anything he suffers. With a cold he gets ill. He struggles so much more than any of the rest of us, he's visibly in pain and has to take painkillers just to carry on. His runny nose might not be any worse than our 3 year old, but his temperature and shivers and feelings of being 'ill' really are. When he's ill with a virus his hands swell up and hurt. This is a new gift that came free with the Meningitis and started when he caught his first virus just as he had been hoping to return to work.
9. Circulation. He's got problems with circulation that were never there before. He's always had lovely warm feet, but now when he sits up for too long they're cold, so driving his feet get incredibly cold and he can't warm them enough. His hands are permanently cold at the moment and then they go numb - I'm not sure how much of the numbness is circulation, and how much is because he lies on them in the night and tucks them under his bum when he's sitting in a subconscious effort to warm them up.
10. Taste. His tastes have changed. Some things he used to enjoy eating and drinking he can no longer stand, his range of acceptable flavours has diminished massively. He'll still try to eat pretty much anything, but it's much rarer that he really enjoys it, and often he'd rather just not bother with a meal because the effort outweighs the enjoyment. Snacks, crisps, drinks, roast potatoes, the list is massive. Tragically he now can't stand take away Chips, Chinese or Indian food at all, and ordering a take away for me and the kids as a monthly treat is a bit empty when he's not joining in. It's a mixed blessing that he now rates my home made Chinese food as superior to anything that we can order in....
11. Noise. He hears noise in a similar way to a person using hearing aids. He can't distinguish sounds and background noise all jumbles into the sounds he's trying to hear, so when there are several noises at once he can't stand it. I've had several deaf friends who will happily switch off hearing aids when they're in a noisy room, but he doesn't have that option and more often than not he either shouts at the kids to be quiet, or has to leave the room.
12.Depression. My partner isn't depressed, but it's hard work a lot of the time to keep 'up', very hard work sometimes. It's well known that after any sort of brain injury depression is very common, and when you put together all of the symptoms above, it's stunning that he isn't lying in a heap feeling justifiably sorry for himself. You get no warning, one day you're fit and the next you have all of the after effects to cope with. It must be incredibly hard for anyone with any head injury.
It's a big list and I'm sure I'll think of others I should have included, no doubt this post will receive a few edits over time. It can never be all bad though. He's still here. HE's here, he's himself and he's the man I came here to live with and the man I got engaged to 18 months ago. He's still Dad to our children and partner to me, and despite all of the post-Meningitis symptoms he's suffering, and everything we've had to learn to cope with, he isn't a different person with a different personality. He's a bit snappier and less understanding, he was never very good at empathy and he doesn't have the energy to make an effort to pretend any more, but it's all him. We can be a family and do stuff and watch TV and make Lego and be thankful. We're all still here, and we just had the best Christmas ever, and we'll be back to do our damndest to beat that one next year.
