Tiredness rant

[Lonecatwithkitten]

I have mixed connective tissue disease, pernicious anaemia and fibro. I do work full time in a demanding job that is one of the few areas to have had a boom due to COVID and I mainly get through due to masses of drugs.
I just need to rant to like minded people and maybe get some sympathy about the level of tiredness I am feeling. At home I have a 17 year old so she is a always more tired than I am - I genuinely think she has no concept of how I feel.
At work we no longer discuss tiredness as there is a colleague again who indulges in competitive tiredness and is permanently more tired than anyone else. The main grip is they never show any empathy with anyone else so we have just stopped discussing how we feel to prevent resentment developing.
My husband is currently in one of his busiest times of year and inspite of COVID is travelling away a lot. So support is minimal.
I just feel I have no one who understands the pain and the overwhealming tiredness. I feel guilty resting and feel I am lazy. Despite the pain killers ( there are lots and different type) currently the pain is pretty constant. I do have counselling, but find I am not even completely honest with her. Though we have discussed that my upbringing has made me someone who will push myself to keep going even when it is detrimental to me.

I don't know how you manage a demanding job.
There is a massive difference I think, between "tiredness" and fatigue.
Just feeling tired is perfectly normal and not unpleasant. Crushing fatigue is a whole different thing, even worse combined with chronic pain.
My DC are in their 20s and while they and DH are sympathetic I don't think they have the faintest concept of how I feel . I'm still sympathetic when they complain of a headache or feeling worn out.
I try very hard not to moan about pain because I know people who do and you switch off, also I don't want them to think of me as somehow decrepit.
All the advice is not to push yourself too hard when you have a flare up as it can make things worse, you are not lazy and at the very least your DD should know that.

@Hax thank you you are right it is a crushing fatigue that bears no resemblance of tiredness.

I have been brought up to push through and am struggling with the not pushing myself. Plus of course a flare always occurs when there is a bad time at work and as I am a clinical director it is my role to step up when things are bad. Working on life changes, but they take time.
Yesterday was bad the tired person didn't come to work as they were tired (they have had investigations and there is no medical cause - as their line manager I am aware of this). So this doubled my work load. I know I am my own worst enemy. DH is away with work currently so there is just no one to listen.

Oh that's difficult. Having someone that on the team is hard enough when you are well but ten times worse in your situation. Plus you can't have a collective moan about the tired one if you are the line manager.

It does sound like you expect too much of yourself. Is a less demanding job an option? I wouldn't suggest a reduction in hours because if you are CD then you would still end up with the same workload.
If you feel like this all the time I wonder whether your drug regime is enough? Do you take steroids? Could you up the dose when you flare?

@Hax long term a job role is on the cards and a change of lifestyle I am contractually tied to this job till April 22. The role is part of an exit plan, but due to my circumstances it takes a long time.
I don't currently take steroids, at the moment hydroxycholoroquine, gaba, naproxen, paracetamol and b12. The main issue is felt to be fibro which steroids don't really help. Though trying to unpick which is the problem fibro or MCTD is often tricky.
It is always worse when I have a flare, work is busy and my husband is away. Thank you for listening.
It is so tricky so few people understand chronic fatigue.

Fatigue is awful. I’d like to up my hours at work (am part time) but I really don’t think I’d manage it. I’m exhausted after three days.

I think because these type of conditions aren’t visible, people assume you’re ok because you look fine.

It’s easy to say “don’t feel guilty” for being tired but I understand how that feels. Please try and carve out some rest time without guilt x