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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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

74 replies

AbsentmindedWoman · 15/05/2019 21:17

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?

OP posts:

elliejjtiny · 16/05/2019 09:23

Yes. I'm not in pain thankfully but I hate the fact that it takes me hours to do something that would take anyone else 10 minutes. I have severe dyspraxia and I wish I had a brain that worked properly.

thaegumathteth · 16/05/2019 09:23

Yes
Especially when I think about what I used to be able to do. I feel incredible guilt about it all especially with how it affects my kids. I want to be able to help on school trips or go on bike rides etc and I think my older dc doesn’t mind and can remember me being ‘normal’ but I think my youngest can’t remember and wishes I could do that stuff’

It’s mostly ok ish

AlmostAJillSandwich · 16/05/2019 09:24

Yes, i've had 24 years of this crap since i was just 5 years old, forced ot drop out of highschool, no college/uni/job, have to survive on disability and its shit, can't go anywhere, no friends, all family abandonned years ago, no relationship prospects, half the time i wish i wasnt here, the rest im just exisiting, not living.

Mishappening · 16/05/2019 09:25

I do get sad and angry and wish I could have a life without pain and without a stick. I wish I could eat normal food like everyone else, rather than having to watch every morsel that passes my lips. I wish I could lift things and garden as I would like. And I wish I could look after my disabled OH myself without having to pay out a fortune to carers to do stuff that I wish I could do myself.

But, wishing has never got me anywhere!

StealthPolarBear · 16/05/2019 09:40

If this is patronising give me a slap.
But as a healthy person reading this is truly eye opening. I suppose I knew that having a long term condition was painful and tiring and had an impact on your life but this has really brought it home, so many different stories so many issues i'd not even considered.

woodpigeons · 16/05/2019 09:42

I used to be well and was a very active person. People used to ask how I managed to do so many things. I travelled, worked overseas, had a family, was creative. I wasn’t driven or stressed. I enjoyed everything I did.
I don’t think so much about being well, more that I cannot believe that the person I was then is the same person I am now.
I have no autonomy over my life whatsoever. Even when I feel well enough I can’t go out of the house alone.
Yes there are occasional good days when I can spend a short time doing some of the few things I would like to do and can still do. But I pay for it afterwards by unrelenting pain and fatigue.
Then there is the guilt. Maybe if I made more effort I would be able to do more and wouldn’t be such a burden to other people.
Really I am lucky because I am a lot older than many of you and I have had a life. I wish that helped but it doesn’t. The closer to the end of life I get the more valuable time feels and I am wasting it.

KissUntilTheyDieOfRabies · 16/05/2019 09:48

Every single day. Every. Single. Day.
I nearly died a bit over seven years ago and I've never been truly grateful for being found before it was too late. I was in hospital when a procedure went wrong. I haemorrhaged but was found in my room.

Every day is physical, mental and emotional pain. My depression is mostly caused by my being unable to live.

PerkingFaintly · 16/05/2019 09:49

God yes, about the people who knew me before I was ill and who treat me like a proper person.

It's not that some new people aren't nice, and they just deal with the new me they see. But... I don't want to be this new me.

Then there's the ones who adopt me as a project or their good turn. And I'm grateful, because, well, I have to be. But holy fuck what that does to my self-esteem...

TheInebriati · 16/05/2019 09:50

Every day is like climbing a mountain with stones in your shoes.
I seem to be surrounded by idiots people who think that having a disability means you just need to think positive and try a bit harder.

Shopkinshurtlikelego · 16/05/2019 09:57

Sometimes I have a ‘good day’ and it actually makes me feel worse because that’s the person I should have been.
Mine is t1 as well and it’s stolen so much from me it really has. The unpredictability of it is massive. It’s so labour intensive. My friends do stuff like just go out for the night on a whim, eat a meal, go drinking and dancing and not worry about anything. My life has never been like that and frankly when I was younger that part was really shit. Lots of my friends went travelling, yes I could have gone I suppose, but the extra degree of effort and the constant stress of worrying I could die if I get it wrong are fairly overwhelming.

The consultants don’t have a clue. Mine said to me I’d done really well and it was amazing I’d never let it stop me. It’s stopped me lots of times and it’s made life very very difficult at others. Without it - well i can’t even imagine how easy life would be.

DecomposingComposers · 16/05/2019 09:59

All the mindfulness too, the "thankful diaries", grounding, meditation blah blah.

This.

It's not just the mindfullness, it's the encouraging you to exercise, work, socialise and pace (ffs. If I get told that 1 more time!!!!) and it's not just magazines that spout this but medical professionals too. I know it comes from a good place and if it was mentioned briefly and as a way of supporting other treatments then ok. But it isn't. It's the whole premise of pain management on the NHS and all it does is make me feel guilty and that I've failed.

Try pacing in a job in which you have no control over your workload. Try giving equal time to your social life as your work when you get home from work in so much pain that all you can do is take pain killers and go to bed and if you don't then you aren't well enough to go to work the next day. The same with exercise - yes that helps but I can only manage it if I am not at work. I can't do both.

There simply has to be more help for people with chronic health conditions and disabilities. What's there is just not enough. In July last year I asked for reasonable adjustments at work - I am still waiting! I've spoken to the union, acas, fit for work and the advice is to just keep asking. How does that help?

I am just so angry and upset about this now. My quality of life would improve so much if I gave up work but how do you pay bills, eat etc if you don't work? As a start why aren't employers made to support people in work? Why isn't there an independent agency that we can turn to who can advocate on our behalf to employers? Expecting ill people to have the strength to fight for this is too much.

BatSegundo · 16/05/2019 10:01

Not patronising to me stealth the healthy often only see us when we are at our most well and quite often putting on a front, to boot.

Christmastreeohchritmastree · 16/05/2019 10:05

Reading these makes me feel so sad and quite scared. I was in a senior role in my profession, had a young family and an active life. All that has changed but I feel I can't moan as it's nothing on most of you. I've lost my job and my self worth. I spend a large proportion of my life in bed asleep. If not I'm wishing I was. I have a good say (for me) and stupidly over do it so then I spend a week or more recovering. It's a vicious cycle.

Mrsjayy · 16/05/2019 10:08

I have a friend who goes on about "spoons" i do love her but got she goes on so much about being a spoonie i have the urge tk shush dear

woodpigeons · 16/05/2019 10:21

Christmas you have every right to moan, or scream or whatever you feel like doing.
I can say to you ‘don’t feel guilty’ but I know how hard that is to do.

BatSegundo · 16/05/2019 10:33

I've lost my job and my self worth. I spend a large proportion of my life in bed asleep

^ that's not 'nothing', Christmas

Iooselipssinkships · 16/05/2019 10:39

32 and feel like my life is totally over. I very rarely have a 'good' day anymore. I have had my children young but now feel guilty they have a Mum who is more like an elderly Grandparent. I have mental and physical disabilities but it's the mental pain which hurts so much more.
We go away soon on an active holiday and I'm wondering how the fuck I'm gonna cope. A mobility scooter has been suggested but I can't even fucking afford one. DWP moved me from enhanced PIP to the lower one even though all I did was ask for a review as my symptoms were and are, worse. If I'd not asked for more help I would never have been given less help. How does that even work? Bastards. Punished for telling them that I was worsening. It states everywhere to inform them 'if you require more help'. Please don't trust them. I didn't have the energy or capacity to appeal. Part of my PTSD is from being in Court and in front of a Judge so yeah, they knew I wasn't gonna appeal.
I asked for a reconsideration and wrote a lengthy letter with evidence and all I got was a 'no'. Bastards.

Toddlerteaplease · 16/05/2019 10:51

I have MS and usually I am fine and still work full time as a nurse. But I would like to be able to enjoy summer without worrying about the hot weather causing a flare up.

DreamingofSunshine · 16/05/2019 11:01

I'm so grateful to have found this thread.

I feel so useless and guilty that DS is in nursery yet I can't work or study because the chance of me collapsing whilst solo is too high at the moment.

Invisible illness so I look 'normal' so people rarely understand what is going on. DH under huge strain as the sole earner and lives for a phone call from me to say I've fainted again/vision has gone/can't stop vomiting.

DifferentDrum · 16/05/2019 11:15

100% yes! And today I don't have the energy to say much more. to everyone else feeling the same.

handslikecowstits · 16/05/2019 12:09

Yes, absolutely. I've had a promising career completely destroyed. I haven't worked in years. I can't.

BUT, I'm not giving up. I've given my GP the heave-ho and I'm going it alone. I will get there. I'm feeling better than I have in years.

It's a lonely road though. My sympathies to all those who are suffering.

UbbesPonytail · 16/05/2019 12:14

Yes. I’ve tried for so long and now my mental health has deteriorated too.

I just feel like I’ve tried for so long and nothing gets better. I’m either in pain, or pain is triggered so it’s wiped out being able to work for someone else. It was okay for a while (was actually main earner) but with the pressure of everything else, and a DH that just doesn’t quite get it (he used to but I think he now regrets the in sickness and in health’ part ) I’ve ended up feeling very alone and vulnerable, and with less
good hours to work in - and all I want is to be able to do simple things and not feel trapped.

PalamaLama · 16/05/2019 13:55

Thank you for this thread, OP.

Sadly too tired to read it.

But I will have a look when I'm able.

Lots and lots of to those struggling.

TinklyLittleLaugh · 16/05/2019 17:48

With my DH, I mean I love him, I really love him. And I do think he'd have a better life with someone else.

But that just teaches our kids that it's okay to dump someone if they become disabled. And to be honest our kids would probably never forgive him if he dumped me. So maybe I should really just dump him. If I really love him.

But I love him, so i'm too selfish to.

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