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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:

Anywaythewindisblowing · 15/05/2019 21:25

Yes all the time. sometimes I'm absolutely fine about my lot in life, my chronic illness has sometimes been a blessing in disguise such as when I had a huge relapse i had to stop working so I went to uni! Got a degree a masters degree and now I run my own business. However this weekend I've been in tears a lot as my illness meant I had to leave my best friend's hen weekend a day early as I was so ill and close to collapse. I cried for missing out on the things I'd been planning for her for months (which I'd already paid for as well but that's by the by) but I also found myself, probably very self indulgently crying for every school trip i missed, every night out, having to move schools to get better special needs care and my old friends forgetting about me soon after, feeling so ill on my wedding day I wanted it to be over, getting a stair lift fitted in my house at the age of 26, and everything in between. I wonder what kind of career I would have had if I was healthy. Would I have travelled? Would I love abroad? I look at other people living normal lives eg working full time and having a family etc the same way I guess healthy people look at Olympic athletes "HOW ARE YOU DOING IT WHY CAN'T I DO IT" and yes I know, it's pointless thinking like this and I should be more positive and blah but sometimes you know what? It's shit and it's ok to say it's shit.

helloswellow · 15/05/2019 21:27

I agree. I love my life, but sometimes I just get hit with this overwhelming longing for health. I'll be playing with my son and just get hit with a hatred of the fact I'll have to go take a nap afterwards. I hate that I spend hours upon hours in waiting rooms for appointments when I could be spending time with my family. I sometimes feel a bit guilty having a child when I'm useless at being a human but what can I do?

I think it's kind of taboo to talk about it though. Whenever I talk about wanting to be healthy it becomes a massive discussion about how I should be proud of my illnesses because they make me who I am and how I'm so brave for dealing with them.

DecomposingComposers · 15/05/2019 21:27

I can relate.

Usually I am pretty optimistic but a recent flare up of my usual illness plus a new one thrown in for good measure and I am struggling to pick myself up.

I'm sick of feeling ill, exhausted and in pain, of not being able to eat or go to work. I'm sick of battling to stay in work and to get even the most basic adjustments put in place to help me. I'm sick of having to use all of my annual leave for hospital appointments while being told that the Equality Act makes sure that people with a disability aren't disadvantaged. I'm fed up with having to prioritise work (usually) over any form of social life. The hospital appointments are another hurdle all together - most weeks I have at least 1 to fit in around work and when you have to factor in travel plus clinics not being on time it's so difficult.

Chronic illness is just shit and the worst part is accepting that this is it for the rest of my life with only the prospect of getting worse to look forward to.

I'm sorry you are struggling too OP.

BarbedBloom · 15/05/2019 21:30

I have had a bad week so I totally get it. I am 37 and feel about 70 a lot of the time as I am so stiff. Pain has been awful this week and I am struggling to get from one end of the house to the other. I am just so fed up of it and feel like shouting at my body, why can't you just work properly

Adversecamber22 · 15/05/2019 21:31

Yes I do but as I almost died five years ago every day is a bonus.

Shopkinshurtlikelego · 15/05/2019 21:31

My life would have been completely different without my chronic illness.
I don’t go to bed at night being sure I will wake in the morning.
On the nights I’m here alone with my children I don’t sleep in case they find me dead in the morning.
I envy other people’s carefress lives so much it physically makes my heartache. I cannot even imagine the luxury of it.

Jammiebammie · 15/05/2019 21:33

Every day, I’ll be honest I’ve lost all hope for ever having a nice life, used to be optimistic but after a while it was impossible to keep up the facade.

PointlessUsername · 15/05/2019 21:35

I feel this way more than i feel grateful and happy to be alive. I did used to feel that way and dont right no think i will ever again.
I hate the way i feel & Look.

To everyone on the thread.

MaxNormal · 15/05/2019 21:38

Yes. Every day.

StylishMummy · 15/05/2019 21:38

Absolutely.

I don't even attempt to remain anonymous online as everything about me is fairly singular. I have one lung, spinal rods, chronic lung disease and asthma (having never smoked)

In both pregnancies (which were absolutely life threatening) I had to deliver my babies severely prematurely via c section and watch in agony for months while they fought through NICU. The pure and utter guilt I felt was all-consuming.

I can't run around with my children, I can't be alone with both of my children at the same time as I get too tired and have been close to passing out before. So I have 2 beautiful children who I have to pay to have in childcare when I'm at home because I physically can't cope. My DH is absolutely amazing but is killing himself from working full time, doing all childcare at home and 50% of housework.

I watch my 'healthy' friends with nothing other than envy. It's gut wrenching when my friends are able to plan their pregnancies and births and childcare and holidays with no thought to how they'll physically have to make it through, it's just a given that they can.

This is cathartic to put metaphorical pen to paper but my god it's hellish. Especially as my 'disabilities' are completely invisible.

Jammiebammie · 15/05/2019 21:39

stylishmummy I can completely empathise with everything you’ve written there

Crazycat16 · 15/05/2019 21:41

I said to DH earlier I just want a life. I’m 45 and feel my life is over.

I am sick and tired of being sick and tired.

BetsyBigNose · 15/05/2019 21:44

I agree @AbsentmindedWoman, and it's sad to read that there's so many of us who feel the same way.

However, I must admit to being incredibly lucky, in that I seem to have an average of around 2 days a month where I feel relatively 'normal' and am able to get on with every day life. On these days I tend to rush around like a blue arsed fly, doing all the things I know I'm going to feel too ill/tired to do in 24 hours time. The thing that really hurts is when my daughters say to me; "Mummy, I love it when you can join in real life with us". I do too, but I know how lucky I am to have even these small glimpses of daylight through the gloom.

On the days when I feel "good" ("good" for me that is...), I feel almost euphoric - it's as if all the endorphins that my body has been producing to fight the pain and illness are suddenly not needed for their original purpose, so they act as they do after exercise - giving me a sort of 'natural high'. I think of it as my reward for putting up with all the shit bits, cos fucking hell - there are an awful lot of those and I'll take all the "good" bits I can get!

Wishing everyone else some "good" days

Iamaslummymummy · 15/05/2019 21:45

Yes absolutely. I have better days but they are never good days. They always have a payback. I'd so love to not have to plan and pace everything I do.

SparrowBo · 15/05/2019 21:45

Oh god yes. All the time.

I think that's ok. Normal even. Illness is shit.
People moan about colds, flu, tummy bugs that last one week. It's okay to wish I hadn't been ill for years with all the losses that entails.

AutumnNymph · 15/05/2019 21:47

Oh all the time ! My did abilities are invisible too and I hate that my disabilities limit me from many things most people take for granted. I know am lucky in many ways but ewauakky there are many things I would
Swap to have a “normal life “

MallySally · 15/05/2019 21:48

Yes. Life is lonely, miserable, full of pain and shit. I just want to be able to do normal things again like go into a shop or take my kids to the park.

mommymooo · 15/05/2019 21:48

Yes me too I'm fed up of been fed up. Chronic pain. Falls. Sudden blurred vision. I feel I should be 89 not 35. I would love to run around with my little boy playing but I can't. We went for a picnic today me DH and DS and there was a group of people mixed ages few good looking women all playing like a rounders game and my husband was watching and I could tell he wanted me to be like that.

Blondiemama · 15/05/2019 21:51

Wow you just put exactly how I feel into words.

Blondiemama · 15/05/2019 21:52

Sorry DS posted that to me too. helloswello, I welled up. You put into words exactly how I feel!

Stormwhale · 15/05/2019 21:58

Oh yes most definitely. I'm actively jealous of healthy people. I long to be able to run for miles like some people, or have a busy social life. I cant though because of pain and fatigue. If I meet up with friends or go out for part of the day on one day, the next day has to be a rest day as I will be completely exhausted. I watch people doing different activities every day or holding down a job then going out in the evening and I wish I could do that. Just be normal.

FairyDogMother11 · 15/05/2019 23:10

I do. Mostly I'm really optimistic but sometimes when I'm ill, I get very upset because it is just a cold to someone else or just a sickness bug but I'll need time off for the cold because I'm so poorly or I'll be in hospital on a drip with a sickness bug because my body just can't fight enough. That gets me down because I have such a good absence record and I work so hard, it just feels unfair sometimes. But mostly I'm lucky I don't have complications and generally am quite healthy and I've not let it get in the way of my career. It is hard and it would be easier if I was healthy but it is what it is and I can't change it

FairyDogMother11 · 15/05/2019 23:12

And yes to being so exhausted you have no social life! I get up, go to work, come home and sleep and repeat. I'm physically so tired I can't do anything else. If I did do something else I would be wiped out for days

delilahbucket · 15/05/2019 23:12

For the most part I've accepted my life is as it is, but sometimes I feel anger and resentment that I can't be "normal". There are lots of things I wish I could do but I try not to think about it.

Tunnocks34 · 15/05/2019 23:16

A bit different but I wish everyday I didn’t have OCD. It just drains me and manifests physically when I go through a really overwhelming patch.

I’ve recently gone through quite a bad patch with my OCD, and as result my psoriasis has now began popping up all over my face and neck (normally it remains on my scalp only). My hair is falling out, I’m so tired that I am struggling at work.

I’m out of this ‘bad patch’ of OCD now, but in a couple of months, maybe two - maybe 6 months - maybe even 12 months if I am really lucky, something else will trigger it and I’ll be back to being Bed bound. To be honest, even the day to day living in between bad patches is exhausting with the minor ‘quirks’ and routines I have.

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