Hi @md67
I’m really sorry to hear this – it sounds like you’re really suffering, and where do you turn in these situations? What’s the answer?
It’s not something I’ve confessed to yet on this forum, but actually in the last 6 months, I totally relate to how you feel and all that you say. I’ve been trying to brush it under rhe carpet/put a brave face on it, but I have recently come to the end of my tether with fatigue.
I’m 53, 2.5 years post transplant for Acute myeloid leukaemia (AML), and I got over the initial fatigue within a few months, and was able to exercise intensively etc. I had a bit of a dip again whilst being treated for the proliferation of Epstein Barr virus in my system, but then eventually went back to work, feeling pretty good. I had to drop from a full time trial to part time though.
Unfortunately, I then caught covid in February, and since then the fatigue has been creeping up on me, to the point where I’ve broken down at work in tears from the exhaustion. I’m not able to do half of what I normally do – I have to save my energy for essential tasks like work and household stuff. I have zero energy for friends or fun. I’ve lost the life I was given back.
I’ve just been on a busy holiday with my family, with the reluctant acceptance that this time I would only be able to enjoy a few hours a day of doing things. I spent 21 hours a day in the hotel room! Now that I write this, it sounds crazy that any of us accepted this. I also got a virus in transit (I tested negative for covid though) which wiped me out further and tainted my precious few hours of activity with fever and aches. Actually, it turned out to be a miserable holiday all in all, despite a reference to ‘fun’ in another of my posts, where I was still putting on a brave face of denial.
I got back and immediately contacted my GP on Monday, and burst into tears telling her all this. I had previously told my haematologist, but he didn’t seem to absorb the extent of the fatigue – and my bloods were ok, so it wasn’t really his issue, I think he thought. Fatigue didn’t even get written into my notes. However, my GP was hugely sympathetic and was shocked at how far my energy had deteriorated and what I have been putting up with. She’s referring me to the Long Covid people; has offered me antidepressants which I may accept because I feel so low right now, and she’s checking my bloods for issues my haematologist may not have looked for, like hypothyroidism (which chemo can cause) hormone issues, deficiencies etc. She’s also referred me for some counselling, which I never got mid-cancer trauma, because it was lockdown.
My work Occupatiinal Health dept has also been so supportive. They’ve advised me to have three weeks off; have contacted my GP for a sick note, and have written to my manager reminding him of Reasonable Adjustments in the Workplace for cancer patients, who are considered to have a disability. He previously turned down my request to shorten my work day slightly. They’ve also arranged for me to talk to an OH doctor.
My GP also said that although I tested negative for covid, I had all the symptoms (sore throat, cough, headache, shivers, aches, runny nose, diarrhoea, fever) and therefore it was most likely covid at this time of year – other similar viruses are winter seasonal. Interestingly, she said many people are testing negative despite having the symptoms in summer. She herself caught it and tested positive. Her husband developed it a few days later, but tested negative. So now I’ve likely had a double whammy of covid fatigue (and I worry I may have passed it on to other immunocompromised people unknowingly too.)
Have you had covid, @md67?
Another horrible aspect of fatigue is that it is invisible, yet so debilitating. I’ve felt that my family now think I’m a lazy, whinging, sour puss malingerer (!) because I can’t do or enjoy anything much. Perhaps that’s just me projecting onto them what I would possibly think… But they don’t understand what they can’t see, and until February, thought I had recovered from my illness. It really hurts to sense they are frustrated with me. That’s the worst aspect of it, to be honest. I feel it’s damaging not just me, but my family. It’s been terrible.
My GP also correctly pointed out that it is just so upsetting to come so far with my recovery, only to feel back to square one or three. It’s so frustrating, surprising, annoying- argghhh!
However, I have been so glad to get it off my chest by telling my GP, who couldn’t have been kinder and more helpful. I wish I had seen her months ago, instead of waiting for a mini-breakdown. I hope you have an equally sympathic chat with your GP. Just being listened to and believed is such a relief in itself. And it’s done me good revealing it here too.
I’m now looking forward to a few weeks recovering from an exhausting holiday that never was, and am hoping further practical help will be forthcoming after these medical tests. I’m also re-evaluating my work. I think I would prefer to do something else at my own pace from home. No idea what, because thinking is like wading through sticky toffee at the moment – but it seems necessary.
I hope it helps to hear that you are definitely not alone, and that we empathise with your situation completely, and there are a few things you can do. Do let us know how you get on. Very best wishes, Notsofullofbeans X