Wednesday, 11 September 2013

Meningitis ~ Two months

I've delayed posting this. I had intended to post last week and be full of the news that my partner was back at work full time finally, but he's found it incredibly hard. I'd hope it would get better this week, but it hasn't.

Last week on Monday (7 1/2 weeks after becoming ill) he had no sick note and wanted to work full time all week. He came home early on Thursday, but otherwise he managed it. He slept a few times after work, but he was awake again for tea. On Thursday he was fast asleep at 8pm before the little boys even. We then spent a full day out at the Little Fun Fest on Saturday. Although I drove and we sat down as much as we could, he was already shattered and it completely wore him out.



Sunday was spent mainly sleeping, lying on the bed and watching drivel. He did have to pop into work for an hour, but that was the only time he didn't show how tired he was. Or how much he is in pain.

His leg and arm pain is always there, and I don't know if he's overdoing it or if it comes in cycles, but yesterday he was in so much pain he said it was as bad as it was when he first had it on his return from hospital. He can't see any pattern to the bad and better days, specific tasks and exertions don't seem to make any difference. The pain is there and no physical movement changes it or makes it worse or better, he just has to deal with whatever he gets. His limp is so pronounced that the Health & Safety man at work has asked him to use the disabled parking spot by the door, rather than hobble across the sloping car park every day. MY partner is genuinely concerned that he'll end up walking with a stick, and when he has a few painful days together, it does seem inevitable.

All of this is of course very wearing, and coupled with the tiredness is still making him short-tempered and not very tolerant. He can't focus mentally when he's tired, and that is also getting him down. If his teenage daughters come to him with a problem or disagreement at 9pm at night, he simply can't work out the solution or really get to grips with whats going on. He's very good about not coping and generally just tells them he can't deal with it right then, but it frustrates him. I think that's a big part of why he goes to the bedroom very early. We've become used to sitting there while I type and he watches TV, and the teenagers suit themselves and make a mess of my living room.

Another frustration is memory. As time goes on we're discovering more about how much is incomplete or missing. He can't remember anything specific about what was happening when he became ill, and quite a few things that happened around that time are blurred or absent. He has completely forgotten an internet friend who we used to talk about regularly (mainly because she always comes up with crazy schemes and posts the daftest questions), and TV series can be watched again because not only does he not remember the endings, he doesn't remember the beginning.

He believes he still slurs a little when he's very tired, and he muddles words sometimes. Even when he knows it's the wrong word, he'll continue to use it. He referred to something using the wrong name several times in a meeting at work, and although it amused him, it confuses him. It's entirely involuntary and that lack of control over what you say, which is his brain wrongly filling in a gap when he's talking full flow, is just not something we're used to.

He's just not as sharp as he was before. He can't answer trivia questions with the same speed and confidence, and he misses a lot of the witty responses and asides that he always used to understand. That bothers me, I miss it. We have no idea when, or if, it will return, but I think it will, I really do.

One of the things that grates on him the most is that everyone who doesn't see him regularly, and even some who do, don't understand that you don't 'get Meningitis, get better' in the same way as you get over chicken pox or a twisted ankle. He's constantly being asked why he's limping or why he is writing things down? And he hates having to explain himself all of the time. He doesn't want to be ill, so he certainly doesn't want to have to remind other people every day!

Nowhere that we can find on the internet really offers any information about this stage, it just says that most people are back to their normal selves after 6 months. We have to assume that we're still on the right track, although he will be visiting his Doctor next week to discuss the pain in his leg and his arms. Again, I'll have to go with him, because he won't be able to remember a lot of what he's told. He'll still be taking in the first sentence when the Doctor is on the third.

Maybe this post seems really negative, and we are in a dip right now, but it isn't really. A month ago he'd never have managed Little Fun Fest at all, and he certainly couldn't have stayed at work for a 38 hour week. You have to keep reminding yourself of the bigger picture.

The rest of the family are well used to everything now. The little boys are less clingy to me, although we are having problems settling the 3 year old into nursery school, but I can't say for sure that wouldn't have happened anyway. The teenagers bring us up coffees in the bedroom and bring me all of their worries and woes. We've yet to rebook the MOT on my partners van, or his Dentist appointment that was due when he became ill, but we'll get there....


22 comments:

  1. So sorry that things aren't improving at the speed that you would both like, I applaud you both for carrying on regardless as I can't imagine how hard it has been for you and your family!!

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    1. Aww, thanks hon! I'm pretty sure I'll look back on all this and wonder how in the hell we ever managed :D

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  2. It's still early days in the grand scheme of things. Don't worry too much or try to rush the recovery, fingers crossed every day will bring a little more strength and memory x

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    1. Thank you Angela, I'm sure it will. When I gather the willpower to read back I'm sure I'll see it in a much more positive light. He definitely couldn't have managed Little Fun Fest a month ago for starters! :)

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  3. Oh hun! As Angela said... it is still early days and everything will take time. Everything will come back... he is too stubborn for it not to! I've said it before and I will keep saying it - if you want anything, even just a cuppa and a gossip just call me!! Sending big hugs xx

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    1. Aww thanks Sim - love you loads. It is early, bit hard at the moment though! :D xx

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  4. Oh my goodness. What a terrible time you guys have had, and I am so pleased that your husband is on the recovery! The recovery will happen in its own time, his body is trying to fix itself after a serious illness. He'll get there. Keep strong xx

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    1. Thank you hon! I'm probably too down in this post - when I read it back now it sounds so maudlin! I've edited in some more positive notes, we ARE getting there - we WILL get there :) xx

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  5. He has come so far already but it's hard to appreciate that in everyday life when things are frustrating and worrying still, isn't it? He'll get there given time but in the mean time he needs to give himself the same allowances to not be well as he would someone else in his position. Here for you guys if you need us x

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    1. Thanks Heather - I really appreciate it - and sitting doing nothing and just having a coffee the other morning was exactly what the Doctor would have ordered me! :) x

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  6. Wow you guys are really having a rough time in so sorry to hear that. I had a friend go through this many years ago and much of what you said sounds very familiar. Sadly he was never the same again but I think he was a lot worse from the start so stay confident it sounds like things are moving in the right direction. I really hope that things seem a little more cheery soon and I hope that you're holding up ok, I bet you feel mentally drained yourself. Big hugs to you and your family from us xxx

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    1. Aww, thanks hon, I really appreciate that! I am mentally drained at times, but mostly I can find a little bit more :D xx

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  7. I have CFS which has a lot of similar effects as your husband is having now. Get a stick. I know it's hard to take but when your body is healing it needs all help it can get. Find relaxing things that take his mind off the pain. Tv doesn't. I have crocheting. It's relaxing and repetitive so you don't use your short term memory as much. Make sure he has someome at appointments with him. Taking notes can help. Quiet as much as possible. I know how hard that can be with kids but noise and bright lights can effect tireness and pain. See if he can go back to work on reduced hours and build it up. Lists. Always help with short term memory problems. The getting words wrong and being unable to do things when tired is something that will hopefully ease with time but if not you learn to do things earlier in the day and not bother in the evening. I hope he carries on improving more and more each day. I am sure he will.

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    1. Thank you Susan :)
      All of that rings totally true, it is incredibly similar. I'd rather he did reduced hours at work, he has 2 days off next week and we'll see how we go from there. He's worried about his job, he plays a vital role and he doesn't want to have to be replaced, so he feels a genuine need to be there or risk losing it.
      On a somewhat lighter note - I read your message to him and he's just told me he opens the safe as soon as he gets to work, because he has no chance in the afternoon! :D
      A HUGE thank you for commenting, and I hope your situation improves soon xx

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  8. Oh Jenny, it's going to be a very long and bumpy ride for you guys. It must get very stressful and frustrating, but little steps are big things and so much can happen in six months. I think he's done brilliantly to get where he is today, just not easy for any of you xx

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    1. Thanks Mary. It is indeed a very long and bumpy ride - I think that sums it up perfectly! :) xx

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  9. Sounds so exhausting and frustrating all at once. I remember just taking ages to recover post a chest infection so can understand how something like meningitis could take so long. I hope he is feeling a bit better day by day and that the road to recovery is not too long now xx

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    1. Thanks hon, we are getting there. I'm sure in another 4 months I'll look back and see just how far we've come :) xx

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  10. Oh Jen, I feel a bit awful for not actually talking to you properly about this. I had no idea he was still struggling with so much pain. I'm sure he will continue to improve, it's just the waiting for it but it's frustrating isn't it?

    Here for you whenever you need me, whatever it is. Just shout xxx

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    1. Thanks Pip - and you have talked o me. You've listened to all my moaning loads - mainly at 1am :D xx

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  11. It is so hard to understand what any type of illness is unless you are close to this person. You can word it very well and I think your blog will help people going through similar experiences for a couple of years.
    I regret I haven't taken more time previously to read your meningitis posts as I had no idea at all it was so difficult and for such a long time. It must be so so hard on you. Congratulations for staying so strong for the family while even having a broken knee and keeping on blogging! You are a hero! I wish you all the best and hope you both feel better soon! Niki

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    1. Thanks Niki - I don't know about being a hero though, more of a muddler just 'winging it' and hoping for the best :D x

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