Cont'd

[LizzieR]

Omg! Sorry - swollen fingers!! My question is- does anyone else feel guilt re benefits? Not working? Some days/ hours I could. Then I couldn't... Can't even move. It seems most people keep working. How do you know when you are OK to start looking for a job?? X

[Nettac]

Yup, I feel a good deal of guilt. Some days I'm fine, other days completely wiped out. I would really love to do something simple and stress free ( unlike previous jobs!). Some days though I just don't feel up to the job.

I got so fed up, I decided to just walk for charity. I can take my time doing it, and it's something useful.

[LizzieR in reply to Nettac]

Hi,

Thank you. I think I just need to accept it's a disability that comes and goes. I'm so worried that people will think I'm a benefit fraud lol. X

[Nettac in reply to LizzieR]

People will think what they want to think. I've got to a stage where I don't give a flying bat!!

[LizzieR in reply to Nettac]

I'm going to try and get there too! Thank you!!

[Hidden in reply to LizzieR]

They will think that if you use your handicapped plaque too, but I would just ignore them, Their opinion is unimportant to you and your health

[LizzieR in reply to Hidden]

Thank you. Can't tell you how much hearing you all has helped

[jane1976 in reply to LizzieR]

I'm the same, I feel guilty about receiving benefits when I have an occasional good day but, on other days I KNOW I can't possibly work. This morning I had a shower & dried my hair after that I just sat there exhausted!. I had a drink of juice next to me, I was so thirsty, my mouth & throat very dry but, I could not pick up the glass & have a drink, bloody ridiculous!!!! Some days I can do some housework or ironing & maybe more. I do admit I'm terrible at pacing myself. I think when I'm feeling good I go too mad then the next day I'm shattered! Will I ever learn??

[LizzieR in reply to jane1976]

Me too. The words 'pace yourself' make me want to scream lol. I think I'm cured and then the next day...!

[LizzieR in reply to Nettac]

Thank you. I think I just need to accept this is a disability that comes and goes... Sometimes hourly!

[LizzieR in reply to Nettac]

Thank you. I think I just need to accept this is a disability that comes and goes... Sometimes hourly!

[Eiram50]

Only two things...:.

What do you mean by "benefits"

And, stop beating yourself up, you have enough pain to be dealing with!

Be kind to yourself and allow yourself time to get to a better, more healthy and stable place- then think about what next perhaps?

Wishing you the best.

Marie

[LizzieR in reply to Eiram50]

Hi,

I'm on ESA and get PIP- daily allowance and mobility. Parts of the day I am v disabled. Parts I'm ok- we have lots of rescued animals - horses etc and I can look after them. Mornings I take ages to get up and am in lots of pain. So the council have said they'll put a wet room in. But then later in the day I could get in and out easily though always have pain- so I feel bad for getting it when others might need it more. This disability is so confusing! And I kept reading about people who just get on and work. My head is wrecked on the drug too. Sorry for going on. I have OCD too so over thinking and guilt maybe come from that

Thank you for replying! X

[jane1976 in reply to LizzieR]

That word "confusion" you used is spot on for this illness!!

[LizzieR in reply to jane1976]

Sums up my state most days

[sylvi]

I couldn't do a days work if my life depended on it. I feel guilty at times especially as i look so well.xxx

[TyWyn]

Yes daily. I have always worked and I feel guilty I'm not working. Buf like all our fellow suffers on here some days I feel I could work then other days I'm wiped out and there's no way I could do a daily job as it takes me forever to get going in the mornings.

Try not to beat yourself up about it do the things you love on the good days and rest up ok the bad days.

[Sophie17]

I too feel guilty as I look ok but inside my body is screaming at me and people don't understand what you are going through. The council put a wetroom in for us mainly for my husband as he's classed as disabled. I am retired and don't need to worry about working but even house work is a struggle some days, my daughter comes in once a week and does the main cleaning. Don't feel too guilty, you wouldn't get it if the powers that be felt you didn't need it. Take care, Sophie 17.

[LizzieR]

Thank you all. Thank goodness for this site!

[Jewels94]

Hi,

I totally get where you're coming from. I'm a teaching assistant in a special needs school and have been on long term sick leave since October. Every time I pop into work I get comments on how much better I look and how the pain seems to have gone from my face. I can only contribute this to being able to pace myself more by not being at work, and being able to rest up as and when needed. I'm actually waiting to be approved for medical retirement, so you shouldn't feel guilty for not working. At the end of the day we have to be advocates for our own health as nobody else can know exactly how we feel from day to day.

[Hidden in reply to Jewels94]

Yeah - It's amazing what sleep can do to help you heal. At least my body does that. I don't care how easy I take it during the day, it is during the night that I heal.

Your "pain free face" might also have a lot to do with less stress from trying to do you job everyday...

[LizzieR]

You are absolutely right! Thank you. It's hard when people tell you that you look better!

[Hidden]

I don't know about others Lizzie, but I think when you hit the point where you feel like you can work again, you will probably notice.

For me it came in small segments, maybe an hour or so at a time, or being able to snap my fingers for the first time in years, and then it became a half a day, or I was able to do something more challenging for an hour or even two if I took rest breaks.

Don't push yourself too hard - just get there naturally. And yes, I felt guilty for a while, but I realized I was moving over, and letting someone younger (probably) and more eager (most likely) to have a slot to move into. I worked almost all of my life for 50 - 80 hours a week so I paid into what I got back, and that helped the guilt

[Ali_H]

Someone once told me " guilt is a wasted emotion because it serves no useful purpose".

I am a fortunate RAer who is still working full time and I do not begrudge those of you who are not able to work any kind benefits support or feel any malice or ill will towards you but rather hope that you make the most of the support you manage to secure so that you can live a happier life with less pain etc.

All the best

Ali

[LizzieR in reply to Ali_H]

Thank you x

[Vonnie10]

I just read your post Lizzie don't feel guilty I've just been of work for four months I'm going back in next week, I prey I'm ok 🙂 and can keep going if I can't I can't, work will have to reallocate me to somewhere that I can manage. Good luck