Sooo tired!!

Well, we've now had 16 days of relentless waking, coughing, shortness of breath, crying from Maddie. Interspersed with v high temps!

Not only are we giving her countless meds for her asthma, we are trying to support her adrenal insufficiency while she gets through this virus. Every other child I know who's had it has got over it within 2-3 days but Maddie is STILL struggling! :-(

I'm Sooooo tired of it! The medicating, the worry, the management of the constant symptoms. She's had a night in hospital in this time and two visits to the gp, yet still it goes on!

I know most of you can relate to this. How do you cope with it all? I have 2 other children too who need me, as well as my husband working v long hrs. I've forgotten who I am!!

5 Replies

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  • Hi, I realyl feel for you and would so uch like to help but all I can think of is usual things like taking an hour or so to have a bath and things like that, and I know you must be looking for more than that.

    I was just looking on the asthma uk website just for some kind of reassurance that I'm not alone as have had very bad weekend with my son's adrenal insufficiency.

    I've felt under so much stress and worry that I made my son get worried and had big arguments with my husband - it's not just this weekend but the 8 years of constant ill health and medications and worry.

    When my son's health gets bad, I do keep a journal of the bad times, so that when they happen I can look back and see that I do get through them eventually. Right now I'm thinking that 3 years ago at this time, my son was a lot worse, and had a really bad patch, and we did get through it, and we can get through this again in time.

    Otherwise it's just trying to be nice to yourself, and taking time, but I know it's impossible when you have so many pressures.

    Sorry I am not much help right now as feel much the same as you.

  • Hi, I realyl feel for you and would so uch like to help but all I can think of is usual things like taking an hour or so to have a bath and things like that, and I know you must be looking for more than that.

    I was just looking on the asthma uk website just for some kind of reassurance that I'm not alone as have had very bad weekend with my son's adrenal insufficiency.

    I've felt under so much stress and worry that I made my son get worried and had big arguments with my husband - it's not just this weekend but the 8 years of constant ill health and medications and worry.

    When my son's health gets bad, I do keep a journal of the bad times, so that when they happen I can look back and see that I do get through them eventually. Right now I'm thinking that 3 years ago at this time, my son was a lot worse, and had a really bad patch, and we did get through it, and we can get through this again in time.

    Otherwise it's just trying to be nice to yourself, and taking time, but I know it's impossible when you have so many pressures.

    Sorry I am not much help right now as feel much the same as you.

  • Jackie, thank you so much for your lovely reply. It brought tears to my eyes. I sometimes look back at what we've been through since Maddie was born 3 yrs ago, the fear, panic, exhaustion, stress and see that we have come through it. I'm scared at the minute as I truly believed the maintenance pred would do miracles. It did to begin with, the day to day symptoms improved dramatically. But here we are again with daily/nightly symptoms. :-( I'm worried what meds are next..if at all there are anymore out there that we can try!

    And thats just the asthma!! Then we have the adrenal issues! Which is probably why we are still seeing her struggle with the virus.

    She is seeing her resp cons tues so we shall see....

    I'm so sorry you've had a bad weekend too. :-( what's been happening?

    It certainly can put a huge stress on your relationship too :-(

  • Emily - my son also had a very bad cold/virus with a high temperature about a month ago. He was off school a week, had half term to 'recover' and it took another good week to properly get over it. It was almost like flu, but GP said it wasnt, 'just' a nasty virus. Altho he was wheezy and coughing, GP said it wasnt a chest infection, which was actually good news, as everything usually ends up in chest infections.

    Maddie had a good stretch didnt she? unfortunately we are now in the 'cold' season. I presume Maddie is off nursery at the moment - have you considered keeping her at home rather than sending her to nursery? Nurseries, playgroups, schools etc are hotbeds of germs, not good places for children with weak immune systems.

    Jackieh - sorry to hear you are in the same position. My son is 14 now, and things have improved from this time a few years ago. The consultant thinks he is getting better, not exactly 'growing out of it' (as people say) but getting stronger and able to fight off infections better. I think (and hope) that this will apply to your child - and also Maddie.

  • Angie, sorry to hear you've had a rough ride too :-( hope he's on the mend soon.

    Maddie only does one morning a wk at preschool but often gets sent home early as struggles with the 3hr session! She hasn't been for a few wks now :-/

    It's hard to know what to do tho as I sometimes think that they build resilience by being in places such as school, yet at the same time it's incredibly hard knowing they're at high risk too. Having the two other children bringing things home anyway means Maddie is vulnerable.

    Usually the winter is no difference in symptoms but already she's gone downhill since the change in weather :-(

    I hope both your sons improve v v soon xxxx

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