Tired so much of the time

[lisamariecharman]

I had an admission to hospital 4th March 2019 I spent 5 days in an induced coma in intensive care then I had another 3 days with octiflow before I went down to oxygen and nebulisers I have brittle asthma and trachaebroncomalaicia I was at Addenbrooke’s Hospital last week to get results of the tests I had in January where the diagnosed the tbm for short but this is worse than first thought it is affecting over 70% of my lungs and I am trying so hard to get the weight off from steroids and I have now had 6 admissions to intensive care and been intubated since August 2019 the treatment for the trachaebroncomalaicia is to use the bipap day and night when you feel the collapse coming I have to get this machine on quickly so side effects from steroids for the past yr I am down from 40mg to 15mg daily but I put on 5stones in weight is it the weight that’s causing the exhaustion I have to sleep in the afternoon I am so frustrated as I am not someone who sits doing nothing I was always busy but now I get so breathless just. To get dressed I am also paralysed from waist down so to do exercise to loose weight is not that easy I only eat veg and fish mainly ido occasionally have red meat but not often sorry for the long post I was just wondering if anyone else is so tired after itu admission this is the longest I had been intubated for so wasnt sure if this is why I am so tired I have had 3 itu admissions since 31/12/2018 all have been intubated

[snotts]

Hi Lisa! This is my first post here, I had to reply as I can relate! I too had an admission in April and was released on the 6th, although I managed to avoid intensive care. I am sorry you have been so unwell - it sounds like your body has been through a lot. I am struggling too with severe fatigue. They say after any severe asthma attack it takes at least six weeks for the inflammation in your lungs to settle, and if you have been ventilated I would imagine this is longer.

One thing I have found that helps is pacing - basically accepting that you cant be fully active while you recover and being active strategically. Split the day into three sections - morning, afternoon and evening. While recovering, you need to rest for at least one of these sections. Ideally sleep, and if you cant sleep (pred!) only do very low energy things like read, watch TV, listen to music etc. It helps me to think of rest time as an investment rather than time wasted, as I too like to be active. The time you take resting means you will have more energy to do the things you want to do well.

Reducing pred also comes with huge fatigue as your body adjusts and starts making its own cortisol again. It feels like its going to last forever but keep reminding yourself that it wont - you will get better and stronger a little each day as you recover. I try and ignore pred weight gain as much as possible (which is hard!). It will come off once you're off the pred and more active again.

Finally remember that so much of being sick with asthma is a mental thing - you really have to put a lot of energy into staying positive as it can be so frustrating and discouraging, but the energy you do put into keeping yourself cheerful is worth it. I hope you feel much better very soon and look forward to hearing how you get on. We will get there! It's just a marathon, not a sprint.

[lisamariecharman in reply to snotts]

It doesn’t help that I also have a rare disease of the lungs call trachaebroncomalaicia I was diagnosed by addenbrookes in January which they thought was moderate which bases and half way up on the right lung they did lots is bloods and biopsy’s and they have come back worse than first thought it is in more that 70% of my lungs and this causes the bronchial to collapse on themselves which causes airway collapse as it’s so rare there is not many treatments and none of the doctors know much about it and if you google it there is very little on there either but they do know you have to keep the bronchial open and not collapsed I use a bipap machine day and night which helps me alive and we try and keep hospital admissions down slightly so it is very hard having a rare disease trying to find other people to talk to makes a massive difference it helps to come to terms with things and not feel so alone xxx

[LDloveslattecoffe]

Hi Lisa, snotts makes very valid points.

Pacing can help. I went on a pain management course which highlighted pacing. Thing is it is frustrating because you feel you should be doing more and often the people around don't understand why you can't. Communicate and explain, try and get a support network around you and sites like this will be helpful because we know what you are going through.

I understand about the weight issues though. You being paralysed will make losing weight harder as you can only do so much because of your mobility issues.

I have had 3 car crashes which affects how much I can do because my back, neck and shoulders were affected.

On top of that I'm on Steroid inhalers for my asthma and occasionally prednisolone as and when needed.

On top of that I have a condition called Poly Cystic Ovaran Syndrome (PCOS) which makes it harder to lose weight.

It's frustrating because I know losing weight would probably help my asthma, Sleep Apnoea and osteoarthritis but it is hard to be active and then with steroids and PCOS feels like odds stacked against you and then Dr's seem to want to blame the weight for all the conditions!

My point is Snotts and I might be able to give you helpful advice but really you have to take a positive mind set ie you can do what you can to try and lose weight but don't beat yourself up over it, be kind to yourself.

Pacing - if you live with others get them to help.

Pacing - if you live alone, will it harm to leave it another day?

Pacing means you avoid the trap/cycle of pain/exhaustion ie don't overdo it when you feel good ie I suffer from pain when feel good will try and do as much as possible and then suffer for days. If I set myself goals and celebrate when I have achieved them then I feel better ie clean one room rather than whole house by doing the one room I might be able to do the next room tomorrow. If I don't pace and do too much I can be out of action for 2days up to a week.

I know it's easy to say these things but doing them is harder. It can be frustrating, depressing. Just try not to beat yourself up. Be kind to yourself.

[lisamariecharman]

Thank you that makes me feel so much better and I agree with you all I just get frustrated and since writing the post I have been diagnosed with steroid induced diabetes xxxxx

[LDloveslattecoffe in reply to lisamariecharman]

Just looked up Steroid induced diabetes had never heard of it wow, you learn something every day. I've been on inhalers since 19 (29 years) and hydrocortisone cream as and when.

I also have PCOS (which has insulin resistance).

I have also also always struggled with my weight and I have two siblings of one parent who developed diabetes in their 70's.

The idea of getting diabetes on top of everything else is a scary thought. I had no idea steroids could induce diabetes.

Makes no difference because still have to take them but at least I know now

[Davenpos]

Hi....I too have tbm and severe brittle asthma ..I was diagnosed 2016 following severe asthma attack resulting in me having to go on ecmo ....from there it's been a nightmare...3 more itu admissions, last one Sept 18 ....that attack resulted in me having to have CPR as the bloody staff didn't listen to me to get the critical care team when I said I need to be ventilated now...awful scary experience....any way I am on 40mg pred and reslizumab as mepo didn't work ...

Each day you never know how you are going to feel but you have to remain positive so hard tho as I had to take redundancy from teaching and unable to teach fitness .....but when chest is good lol....I go to gym and do what I can ...it mentally is my saviour as it's always been my life ....my consultant encourages it too to prevent me getting depressed....I am not saying everyone can get to the gym but it must help with weight too ...I also try to be strict with calorie intake as I am heavier than I was ...bloody hate my body ...but I think at least am alive .....even tho I hate that CPAP machine .....

So keep positive and we all need to support each other ....

Sonya x

[Davenpos]

Well another date with the ventilator, Easter weekend been discharged today ..but still here to tell the tale ...thank God x