If you are chronically ill or disabled, do you ever feel huge longing to be healthy?

[AbsentmindedWoman]

I have quite a few chronic illnesses and usually trundle along fairly cheerfully day to day, but sometimes get such waves of longing for good health. I wish I just didn't have to bother with numerous appointments, all the mental energy trying to deal with everything, advocating for myself and - this is the bit that always tips the balance obviously - the fucking pain/ discomfort/ fatigue/ general unwellness.

This is basically a whinge I know. I have a nice life and am very lucky in many respects, am not ungrateful.

Anyone relate?

Yes. I have a nice life in lots of ways: lovely husband and kids, nice friends, comfortable lifestyle.

My best friends are mostly people who have known me since I was young though, since before my health deteriorated. I feel like they still see me as a proper person. My newer friends are either disabled themselves or older and a bit decrepit like me. I suppose they see the new me. I do feel there are women who actively shun me, jolly mums from school who will go out in a group for the day and even invite my very popular son along, but not me.

My DH is very fit and active and has made many of his friends through his activities. I have sat through so many evenings where people just talk about running and cycling and hiking all night. And then people wonder why I’m quiet. I’ve said to DH, “Would you invite a blind person to dinner and talk about all the galleries you’ve been to all night?” And he does get it.

DH is lovely though and frequently out running and hiking with cheery, rosy cheeked women who definitely find him very attractive. I’m sure he’d love that sort of wife and I’m very sad it can’t be me.

I dunno. It’s very hard and the older I get (I’m mid 50s) the harder it gets. I feel like my best days are long gone really.

God everyday! I don't know how you "trundle along cheerfully". Everyday is a struggle to maintain my mental health and not get pulled down by feeling unwell and fatigued all the time. Some days I win some days I don't.

Do you know what the worse thing is. Is when you realise you have adapted so much you don't even notice it any more. I walked with a colleague from one office to another the other day (about 5 min walk). I wasn't feeling too bad that day but they stopped me half way through and said "god you are really breathless do you want to stop". I hadn't even noticed.

It's only planning to do one thing in a day. And that's a loose arrangement as I may be too tired. And not being able to work more than 3 days a week. Having to take a day off the day BEFORE doing something so that I am more likely to have the energy to do it. It's going out to shop but knowing I can't make more than a couple of hours even with rest stops. It's having to stagger out jobs in the day so as not to overdo it. It's about never arranging for something in the morning as I need to rest. The list goes on and on.

There's something so depressing about not noticing the adaptations you have to make any more. It becomes your new normal.

I relate. I'm fucked off with being stuck in bed, unable to even wash myself, resigned to a wheelchair if I need to go anywhere. Health professionals that give no fucks and just throw pills. Having to turn up to appointments stinking because there is no fucking way I can get in the bath. Yeah I relate, I'm fucked off living in a shithole stuck in bed with a blind, seriously arthritic, blind, DP who struggles to get to the fucking toilet in time.

With both our physical and mental health in the gutter. With the stress of having to attend PIP assessments every three years to see if we tick their shit boxes,.

Do we wish we could be healthy? Is this a serious question?

Oh absolutely OP bit I think that's normal and not any failing. If I were well I am quite certain I'd be flailing every so often about why I wasn't rich or successful, madly in love etc, as my healthy friends do.

After struggling since I was a teen I was diagnosed in the last few years with a set of incurable genetic disorders. I can't work and find it infuriating, the NHS is (sad to say) infuriating and unbelievably time consuming for little benefit, sticking up for yourself against endless ignorance is draining- 'but you look fine' 'why do you have a wheelchair if you can walk' etc. It's all a big pile of shit. I've lost most of my friends as my new life is alienating, I've lost family (who've accused me of faking, pre diagnoses, and being 'lazy' when I quit my job) I worked hard in my twenties to secure a high salaried job and may as well have been off on a jolly like my friends were. I won't have children as there is currently no screening for the specific type I have, and the pass on rate is 50%. I really don't think about any of that day to day though, only when I'm having a tantrum about something/having an especially bad day. Being chronically I'll has forced me to limit my expectations and learn to apply resolve to the difficult.

Of course we all have those moments. It is what it is though and I take so much comfort in stoicism and the fact that all you can do is make the most of what you have and try and laugh off the rest. It's not as though I were going to say, run a marathon if I were well- I'd have preferred pizza and TV over that then and I still would even though there is no choice. Being realistic does help! I am super grateful for my well days, my DP, our home, my dogs, Netflix

Haven't rtf thread but oh yes! I get mad and sad about it. I was awake most of last night in pain, my doctor is trying a reduction in some of my pain relief. It's helping in that I am more alert but the pain is sickening. I have fibromyalgia and Ehlers Danloss syndrome, along with asthma, hypothyroidism and a heart arrhythmia. Some days it's all about my illnesses and I get so pissed off. On my rare good days I get told how well I look, which actually annoys me too!
Look after yourselves everyone

Yes x

I cant afford not to work, but my condition causes severe sleep disturbance. I often feel worse in a morning than when i went to bed.

Pain & fatigue make me fuzzy headed and i find it hard to think.

I drive my body to exhaustion to maintain my roles as wife, mum, daughter, sister, worker etc.

If only just for a day i wish they could experience what it is like for me , behind the smiles .

I hate myself because I can't do the things I used to, my home is a mess, I can't do the things I want to with my son. Today I needed to go to the supermarket for odds & ends, it took me nearly four hours to persuade myself to get out of bed, all the time I was out, I was watching the clock working out how long before I would be back in bed. I feel guilty that I don't visit my mum enough, we lost my dad in January & she is struggling, but I get angry when I wake up & there are missed calls on my phone & when I ring her, the first word are "You aren't still in bed are you?" I have to lie & claim I was doing something to miss her calls. She knows I'm not very often up in a morning but she insists on calling, she knows I always ring her as soon as I wake up. I just feel like it's just another stick to beat me with. I feel like nobody understands the chronic fatigue & pain I suffer, just dragging myself to the toilet & cleaning my teeth feels like climbing a mountain most days, when I have actually managed to get out of my flat, coming back there is a slight ramp up to the outer door of the block, it only takes me four paces but in my head I'm.counting down each pace to getting back inside where I can lay down & rest.

I'd quite like to find out what it feels like to wake up and not feel like shit every single morning and know that it's the best you're going to feel all day.

Older than most of you but can totally empathise. I was so fit and healthy for most of my life, worked long, long weeks and played hard too. Then, 12 years ago I started to fall apart. All unconnected illnesses and all invisible, but life is hell. Type 2 diabetes, which is hard to manage because of somewhat unusual bowel/bladder problems, plus diverticulitis; complete and utter exhaustion coupled with an inability to sleep for more than an hour at a time and aches and pains all over.

I have become very lonely because I feel judged by people who wonder what is wrong as they can't see an obvious problem. I am trying so damn hard to hold together what I have left of my former life, but I can't work, can't really have a day out and can't even play with my Grandson as much as I would like to. I feel pathetic and a waste of space. When things started to go wrong I had a collapse and had to be resuscitated twice.. I wish they hadn't bothered.

Abso-fucking-lutely! Every single day :(

Cantfindname, that sounds a really tough place to be. Please be kind to yourself,

I try to stay optimistic and grateful for the things that I do have rather than my health issues, but I do get angry when my illness is completely minimised by people because its invisible. I've had to cancel on social events with it and people think I'm just overreacting, likening it to something normal.

I also get quite frustrated when people that are in absolutely amazing health, despite the fact they do a lot to put their health in jeopardy, complain about things that are really minor and trivial. I wish people would be grateful for their good health.
In the same sense, I remind myself that despite living with a chronic illness is difficult, it won't kill me and has made me stronger as a person.

Yes. Totally. You Couldn't understand what this feels like unless you have this.

I've been diabetic since aged 1. It's a spectrum, I've met people to whom it doesn't affect their life very much but mine is absolutely horrific.

Mine is very brittle, patternless and very difficult to control. I have all the latest technology and see the latest doctors in London and have been a patient for a worldwide doctors to examine me because apparently I'm so difficult to control and they've basically said they don't know what to do with me!!

I don't know why mine is so difficult to control- is the first thing I think of when I wake up before even open my eyes. I have to monitor it many many times during the day: it does this, it does that, then it does something else.

it's 24 hours a day, 365 days a year. Relentless. never ever get a break. it's it's really awful and sometimes I wish I often just ......

Go away. I want it to stop. I want to have to stop thinking about it. I can't stand it. it's so intrusive, it dominates my life.

it's just absolutely awful. DH is so good about it. my two boys don't seem to mind, but it's a really awful disease and I don't think people understand that.

sometimes when I go to clinic and see one of the doctors I feel like screaming at him you 'haven't got a clue'.

I have cried about it many times over the years years and I think it's a very difficult thing.

so yes op there are many of us who do totally understand.

I have always been disabled I don't know any different but it would be lovely if I could skip out of bed in the morning and not to have the aches or deal with 101 medical things before I can do anything "normal" oh and the bone crushing fatigue that can bugger off as well.

I hate it when people say, "I can't afford to not work".

Neither can I, but I'm too disabled TO work. Saying things like that really make those of us who actually can't work, and who REALLY can't afford to live now, feel like absolute shit. Like we should be working because other disabled people can't afford not to.

It doesn't work like that.

Yes, chiming in with another “every bleeding day!”
Am on leave from work this week, just having a rest as I’ve been so tired. Dreading the “so what did you get up to on your week off” questions next week. Well, do you know working full time just exhausts me at best of times and I just need time off to switch off and rest mentally and physically, not that anyone can relate to that.

Yes, but at the same time I've had this for so long that I don't think I'd know how to be healthy, any more.
I don't know how I'd cope mentally with having normal expectations, if that makes sense…

Yes that makes sense acceptence of limitations will half your battle. Imo

Thank you OP I needed this thread. I do get this huge longing for wellness. I fantasise that they will call me and say that they have made a mistake "actually, you haven't got a degenerative neurological disease, it's a simple deficiency, take 3 of these everyday and you'll get better". This is after 15 years mind, so not exactly the shock of the newly-diagnosed

I want to pick up my kids from school. I want to apply for a promotion. I want to take another qualification and be confident that I can finish the course and that I'll be able to work for long enough afterwards that it'll be worth the money. I want to look forward to next year, next decade, not view them with suspicion and dread.

My DP is fabulous. But he deserves more than a scruff in a dressing gown for a partner. His future is blighted too.

And I am so, so sick of reading articles about improving your mental health by taking up exercise, starting a new hobby, learning something new, getting outside every day, taking care of your appearance. If I could do those things I wouldn't have poor mental health

to the lot of you. It helps to know I'm not alone.

Not anymore actually. I’ve had a very severe pain disability for the past fourteen years, but in the early five or six years it was so horrific that the way it is now almost feels like a dream in comparison. When it’d be most healthy people’s idea of hell. It was unmediated for many years due to there being no physical mechanical cause and I suffered so greatly in many ways. Now I had medication that helps (morphine every day) after a long road with many tests and surgeries, my pain is much better controlled and even with the morphine side effects it’s worth it. So weirdly no, I don’t dream of it going away anymore as I know it won’t. I feel grateful that it’s got so much more doable thanks to finally being listened to by doctors. sadly I also live with the fear that someday a doctor will take my pain relief away from me as it’s scary knowing it’s in someone else’s hands and these medications are so stigmatised.

Yes! I want to be able to work, to not be in constant pain and constantly knackered.

And I am so, so sick of reading articles about improving your mental health by taking up exercise, starting a new hobby, learning something new, getting outside every day, taking care of your appearance

Yes, this. These articles must be written by people who have no idea how real mental illness works. All the mindfulness too, the "thankful diaries", grounding, meditation blah blah.

If you have severe mental illness, it's all you can do to lie still in bed and stop the room from spinning, never mind standing up, going outside, thinking about complete non-issues like your appearance and visualising a "happy place".

Give me something to stop the brain chemical imbalance that causes the physical symptoms of constant adrenaline rushes, IBS, the pain from being so tense, the jaw clenching, the palpitations and racing heart, the shaking and twitching. Going for a sodding walk indeed.

Thank you for starting this thread, OP.

I'm afraid all I can muster to contribute is NGYYYARRGGGHHHH! But I'm sure you'll all get the drift.