Wednesday, 24 July 2013

Meningitis Day 14 ~ Movies and Memory

Two weeks in, and it seems like months have passed.....it really does.

I feel like we turned a corner on Day 12. My partner had spent most of the previous 2 days in bed sleeping, and was pretty shattered whenever he was awake, but then 2 days ago he had a lie in until after 8.30am and could spend time with the little boys (the teenagers are all in bed until 11am if we let them now that they've broken up) We were really strict about him going back to bed straight after lunch. He slept for about 4 hours and then was awake all evening and fine to watch a movie with us. It is the first time I've felt like he's properly back, and after feeling we'd reached an impasse over the previous few days, it's such a huge relief.


This morning he woke at 9.30am and went straight back to bed after lunch, and it's worked, we've had another good day and he's been with us all evening. He's so much happier, we're so much more of a family. It gives everyone a boost and has really cheered up his daughters, who were not really getting any chance to speak or spend time with him when he was in bed most of the day on and off, plus sleeping all evening before.

He still has head pain which is severe at times, and the stabbing feeling in his leg, but most of the other pain seems to have gone. He's no longer slurring at all and his concentration is starting to come back. He is still struggling a bit whenever anything starts to become complicated - multiple requests, remembering some words and being aware of what is going on around him all of the time are all examples that are beyond him right now, but that is definitely improving.

One of the most unpleasant sides to this is that, very understandably, he's been snappy and short-tempered, with a hatred of noise and symptoms akin to a hangover. Any shouting or screaming from the children and he's beside himself and looks in genuine pain. Car alarms in the distance and our teenagers playing music on their phones are noises he cannot tolerate, it tortures him (to be fair it drives me insane too, there's no bass, it sounds awful). Bright light also hurts, so sitting in the garden, resting and enjoying the sunshine isn't his idea of fun sadly.

One of the best things that's happened, which has removed a lot of my personal worry, is that his temperature has stabilised. He's almost the same temperature as me now, with no crazy fluctuation in spite of our glorious Summer. I've failed to mention before the breathlessness and shallow breathing which is very common in Meningitis and generally occurs if/when you develop Septicaemia. Today is so humid and muggy (mafting as my friends in Scarborough would say), he sounds like every breath is a real effort and the sound took me straight back to listening to him struggling in A&E. At the time I assumed it was due to the pain, I had no idea it was another symptom of it's own. I'm very glad I never put that one together as it would have truly terrified me to think he was struggling for breath too.

What bothers him the most is that everything can be a bit fuzzy. He can't really remember a lot of the smaller stuff that was happening when he was taken ill. He doesn't know exactly what he was up to at work, what we were planning at home and he can't remember most of his time in hospital. At the moment he still can't work things out like he could, if it requires effort or concentration it becomes too hard and he gets frustrated and has to give in. It's demoralising, and was beginning to get him down before the success with sleep management gave him a real boost. He is also obviously concerned about when each of his current symptoms will go, and if any will remain forever - although he's hoping the weight loss stays. He's visibly lost a lot of weight, he's around 28lbs lighter than he was before he took ill.

He is now hoping to start his staged return to work next week when this sick note runs out. It frustrates and stresses him knowing he's at home and work is piling up (he's the I.T. guy in a large company). I don't really know how useful he could be there, and frankly I'm not sure that (at this moment) he could manage any more than around 60 minutes sat at a desk or less if he is walking around. I can however appreciate that he wants to start to try and get 'back to normal' and for him work is an important part of that. I'm not keen for him to go back yet and I will be very quick to tell him this weekend if I think it's a ridiculous idea. I'm not going to knowingly allow him to jeopardise or stifle his recovery, not after all this!





16 comments:

  1. I'm sure you can be relied upon to rule the roost and keep him home if he's not ready. From your description it sounds like he isn't ready and you don't want him to take a backward step by over exerting himself. Hope the recovery continues though xxx

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    1. Cheers hon :) x
      Don't you worry, I'm in charge! :p

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  2. such a relief when you start to feel like they are "back" a little bit i totally know what you mean!! hope it does not take him too long now to continue getting fully better and back to normality for everyone

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    1. Thanks Anna. I imagine you went through a similar thing when your fella had his emergency surgery and you had a new baby - I have no idea how you managed to cope then!

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  3. Glad to hear things are improving, but it must be so frustrating for him finding simple things so difficult. Take one day at a time. Glad that your children are getting to spend some more time with him, that must be a relief to you all! It seems awfully soon to go back to work though. It was lovely to see you again on Sunday make sure you take care of yourself too xx

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    1. It was lovely to see you too hon, it really was. I'll be okay. When all this is over I might be completely grey and collapsed though :D x

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  4. Oh Jenny, I didn't realise how varied and long lasting the symptoms could be, even though he is now 'out of the woods'. Happy to read that he is feeling better and staying awake more but another week off work seems like a good idea to me!

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    1. It does, doesn't it! We'll have to play it all by ear for a few weeks yet I think :)

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  5. Jenny it sounds like he's still really suffering but so, so pleased that he is starting to pick up and you are able to spend a bit more time as a family. The boys must have really missed their Dad. I know it must be frustrating for him not being at work but if I was you I would put my foot down and make him stay off for a bit longer if you don't think he is ready, it would be awful if he got worse again after making such great progress. Sending lots of hugs and good wishes to the whole family x

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    1. You are so lovely Tami, thank you hon. We've chatted about work again tonight and I think he's becoming more realistic x

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  6. I'm glad it sounds like he's on the mend, but don't let him rush back to work too quickly. x

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    1. Thanks hon - and I shall do my best, if only to prevent him setting himself up for a fall x

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  7. Oh hun, I am so glad he is getting better. He needs to eat more pies! :p Like I said if there is anything you need let me know and we will come down asap - hope to see you soon xx

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    1. Thank you hon. I made pie! I made Curry pasties yesterday and he ate two! His trousers are still falling off him though... :) xx

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