Monday, 13 January 2014

Meningitis ~ 6 months later

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.

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.

30 comments:

  1. I can't quite believe that it's been six months. It has flown by. I suppose it's a new normal that you have to live with, which sucks but, as you say, he is still here and still himself, despite the changes. Hopefully he will continue to improve and his stamina will return xxx

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    1. It's flown by, but at the same time it does seem like forever now. I can't really imagine it being any different :) xx

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  2. Agree with pippa those 6 months have flown by, it seems so recently that all this happens - I suppose for you it must have dragged quite a bit longer! I hope in another 6 months that a lot of these symptoms would have faded more, and he is able to get his energy back and is in less pain

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    1. Fingers crossed, I reckon so - every now and again I realise something happened that wouldn't have been possible a month ago :) x

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  3. I cant believe it was six months, and its interesting that the experts say he is better, but there are all these underlying symptoms. Its amazing how you have to just get on and cope, and remain thankful that you all still have him, there could have been worse outcomes.

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    1. He is being tested for his circulation and ongoing pain, so fingers crossed they do find something at some point :)
      There really could have been far worse outcomes :) x

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  4. This must be so tough - I hate the 'one size fits all' approach of medical professionals sometimes! Very frustrating when clearly he hasn't fully recovered and it's still affecting your day to day lives. I really hope he gets over it for once and for all very soon xxx *hugs* xxx

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    1. It's been hard work - I'll look back on this time with no degree of fondness I'm sure :D
      Thank you hon - hugs are always welcome :) xx

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  5. Gosh, it doesn't seem like 6 months ago. Thankfully he is still here to tell the tale but it must be so hard feeling the way he feels. God, I know what it's like being tired all the time and having a rubbish memory but that's just being a Mum. Hope the next 6 months bring more improvement and less pain for him.

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    1. Cheers Laura! At least now when I forget something he can't pick on me :P xx

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  6. Oh Jenny it sounds like it is still such hard work. The tiredness must be so hard for him (and you) to cope with. I am glad that he is slowly improving though and hope it continues.

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    1. It's mostly annoying on those days when the kids drive you bats and you want a little help....and he's already passed his limits!
      Cheers Tami xx

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  7. Scary that this all started 6 months ago and sounds like there is still a long journey ahead for you all x

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    1. It's just amazing that 6 months ago none of this had happened. I can't quite get to grips with that, I feel like it must always have been there a bit :) xx

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  8. I don't usually comment on blog posts, but this one struck a cord.

    Meningitis is scary. My step-father had it when I was still in primary school and it was a terrifying experience having to go into quarantine and not being allowed to see him. This was many years ago and luckily he made a full recovery.

    He's made it through the worst, here's hoping he can overcome it completely Xxx

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    1. Thank you Georgia, I really appreciate your comment. It is very scary, and I think it's especially hard for children to understand. I tried very hard to make sure my children all knew what was happening all the time, but they can't appreciate the tiredness and a lot of the longer term symptoms because you can't see them. I think it's hard enough for adults.
      I'm really pleased your Grandfather made a full recovery, I know my partner is still recovering - and he's so much better than he was! :) xx

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  9. wow those six months went quickly. Fingers crossed things improve for you if slowly this year

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    1. No! They lasted years, I'm sure of it :D

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  10. Wow! It doesn't seem like 6 months at all....I hope things start to improve. x

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    1. No! It seems like years :D
      Thanks Kim, he IS still improving, definitely :) x

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  11. Crikey, six months! I am glad things have improved and hope they continue to do so. Sounds like times are difficult but I am glad your mister has you to support him, you are an amazing lady!

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    1. Aw shucks Kel....I think you have no idea what you're capable of until you have to step up to that plate, and then you just do what needs to be done :) xx

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  12. A year after my meningitis I was similar, and people were sick of it being excused by meningitis and just called it lazy or a bad attitude. Eventually I saw a new doctor who diagnosed M.E. - many with M.E. Had meningitis or glandular fever as start points. Essentially this is an umbrella term for unfightable sleepiness, wooly headedness, memory difficulties and pain that can't be explained away by other things. It comes with a poor immunity for viral infections. Adapting to it is hard and brings some spectacular anger because it isn't long ago you COULD do the things you want. I learned to slow down when I need to, to use diaries and calendars, to listen to my body, and to rattle with vitamins, immunity boosting supplements and pain relief. Get the flu jab. In time it improves and the bad days get less. Then people, who never really believe in it anyway, stop accepting M.E. As an excuse and again you're just not trying. It's been 14 years and I still recognise that I am different to before. The gaps in memory never refilled but I have some glorious new ones in their place. My body takes care if itself and tells me when I have to stop but one day of rest is enough, rather than weeks. I catch every cold but am no longer floored and have been pretty level with no real episodes for a good 8 years. There's a new him, now, who has some physical differences to learn, but the process of accepting and adapting to the new pathways created in his brain when the pressure of the meningitis killed some areas takes time. It's incredible how self healing a brain is, but frustrating because, like an overheated pc, sometimes it crashes and you have to sleep while it reboots. His fight will come back. He's still him. He's just rewiring.

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    1. I really don't think you'll ever know how much I appreciate your comments, and this one most of all. I think we really do have to accept the changes, and if they disappear over time then it's a bonus.
      The ME does make total sense, and the computer analogy is one that makes me smile - a lot.
      It must have been so incredibly hard for you to go through this as a teenager, thank you for being there for us :) x

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    2. When someone has been so poorly, so unexpectedly, it's awful to want to do something to help and not be able to - knowing that I can say how it was for me, and that it might give some insight into what to expect, has been very nice. I'm glad that I've been able to use an experience I've had to offer some comfort and understanding to your family and to your partner. He's really doing very, very well and I'm so pleased for you all that he's come through intact; so many lose so much more and I was worried when I read about the meningitis, but he's a stubborn so and so, it would seem, and he's battled back wonderfully. I hope he adapts to his new life without too much trauma and that he learns to love a slower pace of life. It makes you see the beauty in the smaller things and spend more time NOW, rather than looking at tomorrow and what's to come. I'm glad that he has such a loving family around him. As for me as a teen, I missed my GCSE exams and got a free pass to sixth form - I was very happy! Also, I lived on ice cream for about three weeks. What's not to love ;-)

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    3. Hahaha....I didn't let him live on ice cream for 3 weeks! I would have done though, he ate what he could and I made whatever he fancied - he'd already lost 2 stone and I didn't want him to lose any more :D
      I'm definitely all for living in the present, you really don't know what's going to happen tomorrow. I think you appreciate the kids a bit more too, heck, everything, you appreciate EVERYTHING that bit more :)
      I hope I get to meet you sometime, I really do owe you a thank you xx

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  13. Gosh, this must be all so difficult for you to deal with. I hope he carries on improving and I'm sure with your fab cooking he'll carry on putting weight on ;) don't forget to give yourself a break though x

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    1. Awww, what lovely comments! Thank you :D x

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