It’s been a long while since I lasted posted. Well over a year in fact and in that time a lot has changed for all of us.
Like many of you I’ve negotiated lockdown, avoided COVID long enough to get my two injections and now cautiously welcome life opening up again. In all honesty though it’s mixed feelings and having steeled myself to get to this point, I now feel utterly exhausted.
Prior to that I had a clear focus and I threw myself into work to keep my mind off everything going off in relation to COVID but my body has now caught up and I feel completely burnt out and really flat which isn’t like me at all. Sometimes I think it might just be me but I have heard others express similar and I wondered if any of you felt the same?
I’m also really worried about how my lungs are as I last saw my treatment team in early March 2020 after a month in hospital with my fourth pneumothorax in 3 years. This was my worse yet and my lung was unable to fully reinflate. I’m sure that remains the case and that this will have taken its toll on my lung capacity which in turn would account for me feeling more tired.
I also had a bit of a reaction to the first vaccine which laid me low for a couple of days and I think I’ve had a similar but delayed response to the second jab. Last week I was so lethargic I struggled to get out of bed and doing basic tasks became a struggle. In many ways I know this is something that I need to ready myself for going forwards as the scarring continues but that doesn’t make things any better. Right now I feel a bit alone and anxious. I don’t know how much of this sudden drop in energy is a response to the vaccine, how much is due to the disease progression/my reduced lung or even something else altogether.
I’ve spoken to my consultant and CNS but they are reluctant to bring my October appointment forwards which isn’t ideal but understandable. They advised that I get some blood tests from my GP which I’ve started the process on but as always I feel like I’m having to take all the proactive steps when I’m not the expert. There has been no acknowledgment that the COVID vaccine may have had an impact but I have logged my symptoms with the NHS in case they are relevant.
At this stage I’m not sure there’s much else that I can do but right now I feel lost, more uncertain about the future than ever before and at a bit of a crossroads.
Lockdown and working from home has made me realise just how much energy commuting takes out of you and I couldn’t imagine going back to it.
At the same time I definitely continue to slow down and I’m uncertain how much longer I can keep going as I am currently. I’m not going to get any better and I’m certainly not putting myself first. As a result, I’m wondering if now is the time to take a step back so that the diminishing energy I do have isn’t all taken up by work and I can work on me a bit more.
In many ways I think this is the right thing to do but at the same time I don’t want to let go as that’s yet another thing I have to give up and an admission of my gradual decline. I’m also reluctant because I’m worried people will think less of me and that I’ll be putting more pressure on my wife financially.
I always knew difficult decisions would have to de made at some point but in my head I didn’t think I’d be making them just yet. I’m 37, not 57 contemplating early retirement! I’ve still got more to give but I also need to look after myself. So like I said, I feel at a bit of a crossroads with some important decisions to make as I enter another phase with this pesky lung disease.
I’m sure many of you have faced this dilemma on your own journeys and I’d be really interested in any tips or advice you might have.
Written by
dodgylungrunner
British Lung Foundation
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Heh dodgy lung runner I feel your dilemma. Pre covid- Been there done that and even discussed retiring in my early 40’s due to sheer exhaustion and fighting one chest infection after another while trying to hold down a full time job. On many occasions in hospital for iv antibiotics some of these were during my holidays (to lessen the impact on my employer and the children I was teaching). I decided to move to a less physically demanding job in the same field. I had some ‘access to work’ support for a little while where someone helped with the more demanding tasks. Eventual I reduced my hours. Now with covid adding anxiety to the mix I took the decision during Dec 2020 to retire and I’ve just turned 50! I’m glad I had the warnings in my early 40 to realise i’ll not be able to maintain this level of working forever so concentrated on paying off the mortgage. The way I seen it, was one less financial hurdle out if the way. So look at all the options available to you. Try to sort out a plan. Best of luck
Hi BreatheasyBe, thanks so much for all your advice. Definitely plenty of food for thought. I had a previous stint as a teacher which I found really tough even with better working lungs as they were then. Enormously draining and all encompassing. Big respect for you battling on with it and then pivoting at the right time. Hope you’re well and wish you all the best going forwards
It’s so good to see you again Andy but the toll this past year has taken isn’t good. You’re not alone as many feel similar to yourself I’m sure.
Good to know you’ve had both jabs but not so good to hear of the side effects. The jab seems to affect some whilst others just sail through with no worries at all.
You’ve always kept going, keeping fit and never giving in but it seems as if your body has other ideas at this moment in time.
If you have an under inflated lung that would in part anyway account for your tiredness but let’s see what, if anything, the blood tests reveal. It seems we all have to be proactive these days and be assertive in trying to get things done.
I don’t know what work you do but would they be open to you stepping back a little for now? Just until you feel less exhausted, so not actually giving up if you’re not ready to do that yet.
Pete was around 45 when he took early retirement but he just couldn’t keep going the way he was. He oversaw the day to day running of a busy bus garage, choking fumes and all. It was hard at first but I’m sure that’s why he’s still here now. He’ll be 70 in October.
Please look after yourself and hopefully you’ll make the right decision. Remember we’re all here for you. Take care. Xxx👍😘
Really good to hear from you again. I had often wondered how things were for you. But really sorry to hear how you are feeling. I think it is entirely understandable. You are a human being not a robot. Life has been very difficult for you for many years and it has all caught up with you. I am disappointed in your medical team. I know Covid has made routine care very difficult. I posted about this a couple of days ago. I was very impressed with my own consultant who is clinical lead on the Covid wards but still has time for me. What would you say to a dear friend who expressed the same sort of feelings that you just have? Listen to your words and heed them.
I feel really odd about the next stage in our lives. Lockdown and the absence of choice of activities has left me a bit rudderless.
As your BLF granny I recommend a complete rest.
Be very gentle yourself.
Abandon positive thinking, guilt-tripping and the curse of perfectionism. Have a weep and a moan. Lamentation is a justified part of our human lot.
Katinka46, thanks for all your kind words as ever. It’s been so tough hasn’t it and while I’m generally a positive person I agree that sometimes it’s ok to have a good old moan. We were dealing with some really hard stuff before the pandemic and now it’s even harder. Strange times ahead but good to know we’ve got each other!
Yes I believe that every one is struggling a lot with all the shielding period, lot people like myself have an decrease in lung function. But hopefully the time will start to get better again that some can return to pulmonary rehabilitation and more.
Sorry to hear that you not doing well. But don't give up, you been busy that's always good. You take care 😃😃👍🌹🌹 and stay safe and warm.
Thanks MelNel. Sorry to hear your lung function has gone down. Hopefully the PR will come back soon but there’s always online classes? Wishing you a the best!
Sorry you've got this decision to make. I think feeling knackered after months of inactivity is normal to most of us. You obviously need to ease yourself back into a more active life very, very gently. Listen to your body. It's a shame if you have to let your wife take more of the financial responsibility at the moment, but I'm afraid it's part of life's lottery. If anyone thinks less of you for having a lung disease they are a ratbag and not worth bothering about, (though admittedly some perfectly nice people need a lot of educating about why you get tired. There is one of them sitting on the sofa next to me at this moment.😄😄😄)The best of luck to you- I hope you can sort this out. xxx
Alberta56, thanks so much for all your support as ever! Definitely time for me to listen to my body and put myself first for once. I’m just not sure I’m quite ready to move on if that’s what needs to be done.
Give your body time. I had a nasty flare up most of last summer and my body is still gaining strength. In some ways I'm fitter now than I was before the flare-up. It's frustrating that it's so slow, but what can one do? I'm luckier than you in that I'm retired. More good wishes xxx.
Am certain that many people will be feeling the same about commuting for work.You seem to think decision is all or nothing. It may well be that work would be able to accommodate different work practices.
For example can you continue to work from home? Even part home and part office based would be an improvement....??
Could you reduce your work hours? I had to in order to keep working. My work place were keen to keep me so we’re happy for me to reduce my hours to 3 days per week.
I also applied for (then DLA now PIP) which meant I had extra financial help,
I don’t know what your finances are like but think very carefully about just stopping work. If you intend to claim benefits you will struggle if just stopping.
I have recently retired on health grounds but this was supported by my work place and occupational health. As well as my Gp. As a result I am able to obtain my full pension.
Hope you have family or friends to discuss things with. The CAB could also be useful for impartial advice.....
Bevvy thanks so much for all your support and great advice. Working from home and/or reduced hours are certainly possible and I definitely don’t want to give up altogether unless that’s absolutely necessary. What I desperately need right now is an extended break to get to the bottom of this fatigue and get my head straight after everything that’s happened. After that I’ll hopefully have a bit more energy and a clearer idea of what I can and can’t do going forwards. I hope things are going well for you and wish you all the best going forwards.
It’s good to hear from you and I’m sorry you’re facing such tough decisions. Katinka has written a wise response that I couldn’t add to. Take your time about your decisions and I’m sure you’ll make the correct ones.
Hi DLR, I'd been wondering how you are. Yes, it's been an awful, old slog, this Locking down. Vaccines, etc. I thought I,d been doing so well isolating, alone and not getting the thing. Became unwell around Christmas diagnosis Pneumonia (again!) dealt with it at home untill April, then Hospitalised as it just would not shift! They've now found I have a problem with my Liver (non drinker), so probably Meds. and I'm back home but, feeling exhausted. With yet another thing to cope with. Big difference between you and I is age. I am almost twice your age. It must be very, difficult for you being so young and having so much to deal with. But, only you, know just how that feels and trust me, no-one will think the worse of you, if you do decide to pack in working. I would certainly not go back to commuting. It may be that there are part-time jobs you can do from home. I finished work at 56, didn't want to, but looking back, it's hard to see how I could have continued, being a T.A. I'm sure that a few weeks, you will be able to see, more clearly, what is the best way forward for you and I do wish you and your Wife well.
Dubba61 I’m so sorry to hear about your pneumonia and the subsequent liver issues. So hard to have to take on yet another thing after everything you’ve been through. You deserve a break! I think the hardest thing for me is having to constantly give up more and more things. Having to adapt/alter my job/work would be another thing I’m giving up and a further nod to the progression of this disease. If it’s what I’ve got to do, it’s what I’ve got to do but it’s hard to stay up beat some times when your world is ever shrinking. Wishing you all the best and thanks for all your support as ever.
I’m sorry, but not surprised, that you feel like this, but the time has come to care for yourself. It sounds to me that you may have clinical depression after everything you have been through. That would hardly be surprising. Have you thought about counselling, or cognitive behaviour therapy. That might help. I wish you all the best, and an improvement in your health ASAP. xx
Hi Carnival567, good to hear from you. It’s definitely been a hard time and I’ve never really taken any time for me to take stock of everything that’s been happening and I’ve definitely felt lower recently. I will definitely consider counselling as part of the process. What’s clear is that I can’t continue not listening to all the warning signs that my body had been giving me
Good to hear from you again. I feel COVID has affected us all greatly even though we may not have had the virus. At times I feel extremely flat in mind and spirit. Good to hear you have had the vaccines and sorry you had some after effects. Be kind to yourself. Take things slowly and step by step Have you tried meditation or arm chair yoga ? May help. At the moment we have our daughters dog staying with us and she’s my counsellor 🤣 has helped with my flat feeling. Do you have a pet? Take care x
Sorry to hear that you’ve also been flat at times. This has been such a hard time for people hasn’t it? Couldn’t agree more about the pet. We have a one year old cockapoo who brings us so much joy!
I can't add to the good advice above; I would just say don't rush into any decisions at the moment, which is a difficult time for most of us, and left us feeling fragile and insecure going forward. Is there no way you could work from home/go part-time? Just take things easy and stop beating yourself up for things beyond your control. Good luck going forward and with any decisions you make (only you know what is best for you and your family).
Hi Dedalus, good to hear from you as always! Working from home and potentially reducing hours are definitely things to consider. I definitely need to be less hard on myself and put myself first for a change which I haven’t done in years. Hope you’re well?
I'm good thank you. Waiting for input from Consultant at Addenbrooke's about whether he'll refer me to MDT for LVRS at Papworth (I did 6-minute walk on Friday and all rests on whether he thinks it was enough for a referral). Got everything crossed 🤞 Take care and go easy on yourself 🤗
Good to hear from you again, but sorry to hear about your present struggles. There have been some great replies here. Do get the blood test, as it may turn up some low readings which are easy to correct, like iron or Vit D status.
Thanks Ergendl! So lucky to have the support of you and the rest of this community. Completely agree with you about the blood tests. Got a video call with the GP on Friday and I’m hoping that I’ll then get the blood test off the back of that. Hope you’re keeping well and thanks again for all your support!
It's good to see you back but I'm sorry you're not feeling so good.
I had the Astra Zeneca vaccine. I had the first one in the morning and slept all afternoon, after which I was fine. It was real fatigue - not just needing a nap! I had the second one 10 weeks later in the afternoon. I didn't feel great and slept all evening. The next day I was no good to anyone - I slept on and off the whole day and went to bed early and slept the whole night through. Didn't even get up for the loo! Unheard of!
Since then, I've been ok, but several friends who had the same vaccine have mentioned the fatigue as a side effect and one of them found it affected them for several days afterwards.
I'm wondering if your fatigue is vaccine related and is also the reason you are feeling so low. If it is that, you should soon start to feel better, but I know that sometimes - if I experience some kind of distress - it can take me two or three weeks to get back to normal. I don't know if it's to do with the stress hormones rushing around my body, but after a while I find I get up one morning and all's well with the world again. I'm keeping my fingers crossed that you will soon have that feeling again.
I was quite a bit older than you are when diagnosed so not really in a position to advise on future plans. However, my own experience is that I retired from a reasonably well paid job at the age of 59 (stress related decision) and wondered how we would manage financially as my husband was already retired. We are fortunate to have work pensions as well as the state pensions which may not be the same for everyone. I found that we had been spending money unnecessarily on lots of things. In a couple of hours on line, I cut our annual outgoings by £350 and got a free case of 12 bottles of wine into the bargain. My success encouraged me to look at further savings - I had the time, you see, as I was no longer tied into working full time. Many more savings followed.
I am still amazed at how small our current income is compared with what we had when we were working and have often said to my husband that we should have been much better off if we had only had the time to spend budgeting. We want for nothing. If I had realised how well we could manage, I would have stopped working much sooner as it was making me ill.
Everyone's circumstances are different but please think hard about whether or not you can afford to make some changes to your lifestyle that would allow you reduce your work related stress (I' including your commute in that too).
It's an old joke, but worth remembering that it doesn't say on anyone's tombstone, 'I wish I'd worked for longer.'
Moy thanks so much for all your support and being so open about your own experiences. The thought definitely has crossed my mind that the current fatigue could be COVID related. First time like you I felt bad for a couple of days but then picked up fairly quickly. This time round I was fine when I got the vaccine and the fatigue has hit me a good couple of weeks after and is much worse than before. Amazing work on the savings! I’m in a fortunate position in terms of finances as it stands and I think what I need is to have a break and then consider whether I reduce hours or take a less busy job.
It’s good to see you after so long, but I’m sorry to know about your struggles. Everyone’s given you good advice and I don’t have anything to add but the vaccine really does have crazy defects. I actually wrote effects but my iPad in its wisdom changed that to defects, maybe it’s a more fitting word! I had my first vaccine in March and have felt wiped out ever since. I was really ill for a couple of days afterwards and am Better than I was, but still very tired and have gone off a lot of food and most drinks (and I’m not talking about alcoholic beverages as I don’t drink alcohol) I hope in time you’ll start to feel better as maybe some of your fatigue is being caused by the vaccine? You are a very positive person, and fit, so it must all be a double whammy for you. You’ve been uplifting to me in the past and I’m sorry I can’t do the same for you. As for your job, you must do what is right for you. If I remember correctly you like your job which also must make it more difficult for you to quit. Maybe your employer can accommodate your needs to let you continue working in some capacity but maybe at a reduced pace? I quit my job in February last year but was talked back into it in August, because I’m a wishy washy person. I didn’t have the courage to stick with my decision to have quit, even though leaving felt right. I now regret going back. Sometimes it’s easier to stick with what we know, because the unknown can be scary. Do what you know is right for you, even if it’s scary. Many years ago I had to change my life because of my health, in fact rebuild my life. It’s a bit like starting all over again. It’s a new way of doing things. But that doesn’t mean it’s any less good. It’s just different. I hope you can find a new way of living that you’ll be happy in. Totally unexpected things will come along in your new way of doing things that you could never have imagined in your old life. I don’t know if any of this makes sense, and I’m sort of rambling. Maybe I should just have said I wish you all the best! Which of course I do.
Hiya.Yes tough decisions.but, feeling burnt out - sounds like u need to put yr needs first.give yourself a break, perhaps a month off sick, initially, to rest up,and then assess how u feel.u may feel beta talking to your wife, if she is understanding.it may be u go back on reduced hours? Sometimes,u just have to accept u cant do what you did,and work with where yr at now.all the best
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I had to post This ! 
Black sputum/phlegm/mucus
Bad chest x-ray and no dx in sight
Results of recent X-ray-Early signs of COPD non acute 
Life with bronchiectasis
