AIBU to be exhausted by being exhausted?

[SleepRepeatSleepRepeat]

I know I’m not AIBU, although there’s always at least one contrary poster! I think I just want a vent and perhaps some people have been in a similar position maybe.

i have a neurological life limiting problem which is genuinely outing to say as it’s v rare. As well as severely fucking up cognitive function (this is me typing on two good days me pretty sure it has errors!) and memory and processing stuff it causes physical disabilities and lots of other crap stuff including conditions that bring all sorts of stuff incsevere fatigue. There is a chance of surgery but I have to exhaust (see what I did there) all the medication options. main problem is the medications that basically sedate you. Funnily enough.

so everything inc mediation together, I am fucking exhausted. This whole month I have left the house four times times and they were for hospital visits, two were planned. Ive also had to cancel three planned medical appts. I could sleep 15 hours a night and need a nap in the day. I’m sedated alright. Normally youd stop titrating or using with these side effects but I have to rule them out before discounting because of the op which is a terrifying enough decision in itself if I have to make it.

Lovely kind long suffering DH is doing everything for me around a work pattern. I feel guilty as I cause him enough stress with medical worries as well as him doing all the practical stuff like care me and we have other life worry stuff going on. I’m waiting for house adaptations and currently have twelve months til I even get the asssment (this would also mean if I have the op and it was successful I’d have to have longer in hospital rehab instead if coming home.) so im limited so much in the house when I am awake. But really all I want to do is stay in the bed and sleep. I want to hibernate basically and DH ha to persuade me to eat etc. I am EXHAUSTED ALL THE FUCKING TIME and I am so fed up with it. despite my best effortsc all I can do is read MN and watch stuff that requires no concentration. I cant even read proper books i swear I am reading the faraway tree books atm. To be fair they are very comforting with silky and moonface etc!

but I’m so so so tired and fed up. and guilty for my DH even tho I know it’s not my fault its just a shit situation.i am probably getting YABUd for this as it sounds arrogant and grumpy but I don’t want people to waste their time with helpful suggestions and ideas, as the medical staff have set up all they can eg counselling and I know about the Red Cross loan equipment and i know even just five mins of outside etc is good etc etc.ive lost any other hobbies I had like sewing as not able for it anymore,i think I’d just to vent and a “yes it’s shit” empathy type thing!

ps and yes I managed to type this but I started it yday and finished today and which is depressing as I used to have a proper brain that worked well. I feel better for all the swearing tho!

Well yes, sounds a throughly depressing, boring and unfulfilling life. And I’m very sorry.

Sorry to hear that, it sounds awful.

Oh THANK YOU! I am usually a try keep positive mental attitude and take action to helps yourself sort of person but today I just can’t find it in me and want to whinnge.

was expecting someone to come along and say something like have you tried yoga

It sounds totally shit op
and for your dh
I have no advice
just, I suppose, sympathy

I have a chronic condition too, requiring medication 4 times daily to keep me alive (Addisons Disease ) and with effects such as brain fog, fatigue, nausea, aches and pains… I totally understand you. I feel like all I do at the moment is work (30 hrs a week from home mostly), eat and sleep. If I didn’t have to provide food for my kids I’m not sure I’d be eating regularly either. It completely sucks.

I’m sorry @Amiableit really is shit isn’t it. I think I was tested for AD at one point forgive my ignorance if wrong one but do you have to take steroids for it? Def sympathise as they’re not fun either. (If you’re sweary I’d say they are actually fucking shit!)Bloody good job on taking care of kids and working too, I know how hard it is to force yourself to work. I’ll be honest and say I worked well past the point I shld have accepted reality and stopped. its very hard, whatever happens.

i shld really try and keep positive attitude as i do bave a lot to be “grateful” for, dh came and gave me a a head massage before unasked which was lovely.

sorry im using on my phone to text now and the screen is tiny!

How old are you op? Do you have or plan to have children?

I’m so sorry OP, it sounds awful. Like really really awful.

I have no helpful advice but just wanted to say you are clearly not making a fuss or being negative- it sounds horrible.

Have you tried ginger biscuits? (Joking!)

Ginger biscuits

I’m late 40s and one thing I am also grateful for (typed graceful for then - am def not that!) for is I had my DC very young, by today’s standards so they’re grown up which is a huge relief under the circs

Has your condition deteriorated recently or have you ever lived a fulfilling active life? How is your marriage faring?

Ah, but have you tried Pilates…!?!

I’m so so sorry, but with all that swearing I thought you might be ok with a very inappropriate joke😜.

Don’t know if you have the energy for Netflix, but I recently had Covid (incomparable with what you’re going through, I know) and lay on the sofa watching the John Mulaney stand ups. Had me absolutely crying with laughter through the pain of not being able to breathe properly.

(And I know you didn’t want suggestions, but I’m a bossy cow.)

I shall look at Netflix thank you after my Pilates and yoga

it was adult onset so yes pre this I had a proper career which i really worked hard at and loved. fellow in professional body etc. that’s what kept me there trying too long after I became ill as well as financial reasons, it absolutely sunk us financially when I left. Ironic to be someone who loved their job.condition worsened since then which had led to this new diagnosis as new symptoms plus medical tech has also moved on. I miss my job so much as well as excercising and driving and all thr other stuff I loved.

marriage is still very happy but i try v hard to not tip from being wife in a relationship into patient needing care too much. this is something I struggle with esp thr lack of things like adaptations makes it hard. I do feel very guilty as it shouldne be like this. DH works part time - to keep his sanity I think. Also think this is dilemma for him tho as he doesn’t like leaving me and worries. currently I am looking at carer visits, is complicated! My hospital stays I see as respite for him which helps. funnily enough we are very happy “underneath” all this and laugh and laugh at some point every single day. there is lots of love there. He is a very kind person. I have always said sickness and in health vows are fine til you’re actually in that situation! and i wouldnt blame him(or anyone else) if he couldn’t cope.

How upsetting, and what a lovley wife you are that you’re empathizing with your DH too. He is a good man sticking by his vows, just as you would to him if the roles were reversed. I hope that your future treatment works better for you op x

Yes, it is definitely shit! I have to take 2 different steroids for the Addisons - I also have hypothyroidism so take meds for that, and then have to take more meds to counteract the side effects of all those!! I’m actually feeling particularly shit at the moment.

Lots of issues that have been building up - work stresses, mum having health issues, including cancer (for the second time!), shit exH who moved to his home country when we split 5 years ago and hasn’t worked for 7 years so no support from him ( he’s only seen the kids about 7 or 8 times since we split), both teens have been diagnosed as autistic in the last 4 years - I could go on and on! I swear my life is less believable than a soap opera!!

anyway had my annual check up with my fabulous endocrinologist yesterday, and after I burst into tears and spilled everything, she is recommending I take at least 3 months off work. I’m seeing my GP next week, so hope to be signed off then. Just hanging on by a thread to be honest. Financially it will be really tough, but as stress can be fatal with Addisons, something really has to give!

(Sorry, didn’t mean to hijack your thread, but I really, really do get how you feel!)

Def pls take the three month break. It’s very very hard being sandwich gen (is that the expression) of parents and children. Esp for women as the expect is that you will give care. pls def try and put yourself first. i tried to make it work with work for far too long in hindsight and tho it just didn’t seem possible financially to stop but it just happened and wasn’t a choice. as you will know you just deal with whatever you have to as shit as it is you just have to do it. on top of yoga suggestion shld I insert the infuriating yet often said to parents of dc with sn of “I don’t know how you manage so well, I know I couldn’t” well yes you would and what choice do we have?! we aren’t magical saints but real people just getting on with life as best we can.
key word is LIFE isn’t it. can’t do our jobs or look after dc etc if we aren’t alive! pls take the break and I really hope it does you lots of good and time for reassessment of stuff if you need to

(Shld have explained first I have dc with disabilities!) luckily older now and have dh so know I’m lucky in that respect. you’re doing work of two parents by yourself essentially it must be very very hard. Ironically before I came ill I had lots of ideas about setting up networks of parents with dc with disabilities in local areas to give each other help where needed inc respite esp those of us older and dc more independence. I’d have loved to give a single parent esp even just a couple of hours on their own. in the trenches the smallest thing can help even a little. sadly obvs I can’t do it now but one of my oldest as an adult supports dc with the same disability as them at key points eg starting high school or uni etc

ive had a befreiender from a charity myself and it was so invaluable just to vent as I cld talk better then, idk if there is anyone similar for Addisons.

I completely understand how shit it all is. I was diagnosed with leukaemia last year and the treatment has been brutal and the fatigue is debilitating. I’m so lucky that my children have risen to the challenge and even my dh has stepped up to look after me, but i am grieving for the person i was before and all the things i took for granted. I try and practice gratitude that at least i am still here, but some days are just hard not being able to do even simple things.

I have a rare life limiting chronic condition too and I’m so tried all the time from the meds and their side effects and the thing itself I think more and more about just checking out. Solidarity from this corner.

Apologies I’ve not replied, my memory is so bad I haven’t remembered I started this thread ! Had to read my posts again to see what I’ve already said

Im so sorry @WillYouShutUp.gratitude comes hard doesn’t it the grieving just overtakes it at lot. And the sheer fucking frustration…that’s just relentless (for me at least) obviously I don’t have leukaemia and don’t know what’s treatment you have, but i sometimes think some treatment is hard to “balance” (not thr right word) and like you say @BarilynBordeaux the fatigue some can cause are literally overwhelming,

I hope everyone is just keeping on and finding some happiness even in the tiniest things.

Forgot to say I think its hard when some treatment - you just don’t “feel the benefit” as your baseline is just fucked anyway so if it’s aimed bringing you up to baseline doesn’t feel much it’s like doing any good iyswim? I cant quite express it. I don’t feel today I am getting any better despite some very gentle physio this week. i LONG so much it almost feels painful as I want it so much to be out running especially as autumn comes, instead I’m seeing if I can work towards manage to bring an arm to 45 degrees type thing. it’s a big number wedding anniversary today ans I feel so guilty we cant go out out as i know DH would love to although he denies it of course.