For the past 6 months I've pretty much been a self-imposed prisoner in my home due to constant flare-ups. This has been a dark and difficult time as I had to leave my prior job because of it. Pain levels bearable for a few days then not , etc, etc, let to me fearing the flare-ups, they dictated my life and I became very depressed by this as I always enjoyed the line of work I was in. I started a job Monday gone on a full-time temporary contract (until mid to end of June). I'm really excited - not to the levels pre-pain, of course, I'm too tired and battling brain fog and all the other' goodies' we have to face like bad, sleepless nights but still having to get up an function. It's a short contract so I aim to practice pain management techniques to see if I can get through it, do a good job and maybe get some hope for the future if I can manage it!
Does anyone here have any experiences or advice about how they've coped with working? I'd be interested to see how it is working for other chronic pain sufferers. Thank you
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linda39
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Also, my circle of friends diminished so now I have very few people I can talk to but an aware that they are very busy. It's good to find this forum!
Hi linda39
I changed my job but am beginning to struggle with 25hrs now. In retail department store so on feet/physical. Have told manager I get tired and brain fog so ask for more challenging jobs to be given me in morning. Colleagues pretty good and I make sure I do my share. Usually knackered on day off and in bed wit flare ups often. Need money but might go down to 16hrs for sake of health. Will apply for PIP and pray I get it. Take tramadol for pain relief before work. Hope you realise your ambitions. Good for you for not giving in.
Same to you! I still haven't found my 'baseline' but I know I'm overdoing it but need the money. I had an Atos 'examination' a couple of years back, they gave me 0 points (common I believe) and I appealed which went to tribunal. It was a truly awful experience.They just wouldn't accept it. Totally humiliating as I was bawling my eyes out in front of 2 men as it was so traumatic, in my opinion and experience of it, they're there to prove the person a liar - one a lawyer and the other one a doctor. They devastated me.
Sorry, didn't mean to worry you. See if you can find a charity to help you fill in app and represent you if needed. Also, you probably know this, but keep all evidence from the date of your claim: diagnoses, appointments, etc. I'm not an expert by any means and haven't applied for that, I was applying for ESA at the time. Really hope it goes smoothly for you x
MD55, I don't know if you've seen this website may be useful to you for PIP application advice and guidance. It does to seem to offer good advice on how to negotiate this benefit. Good luck, hope it helps x
Its tough! As you know.... I managed six months before my toe broke of all things! It needed surgery and took best part of a year to heal fully. I left the job because they were awful people! I managed by taking loo breaks every hour - they must have thought I had bladder problems! I used the time to squat to relieve my back. You need help at home with shopping, cooking but it's the cleaning that was the killer. It's so hard on a bad back! Lie down when you get in from work, feet up the wall....
I'm on ten hours in retail now. Only place that would have me after years of on off work. I love being with people and feeling like I'm normal.... It's still hard but I found I was getting up some stamina until I did too much and I had to phone in sick last week. I hate letting people down! That's the worst feeling. I was pole axed with spasm. On my back for the best part of a week. Full time will be really hard and regular spasms is a big message. Valium will help but GP don't like to prescribe ongoing. Baclofen is good without head fuzz. Best of luck.....😜
Yes, same here with the ways to try and cope. Shopping is hard but for me it's the cleaning that's the killer for me too. I usually have to lie down for a short while after work to take the weight off my back and neck. A good week or two working starts to build confidence then, as you know, something can knock us right back. And there is such a lot of guilt and frustration when I can't go in and I get really stressed and down about it which doesn't help. Try to not go down that route, I'm making a conscious effort to use positive talk to myself.
I think a good employer helps hugely, they will see if there is anything they can do for you (they have a legal duty of care to help) - special equipment, frequent breaks etc to minimize the pain and subsequent flares. Is there anything you think they could do to make it easier? I've requested a particular chair and am thinking about asking for an adjustable desk so I can vary between sitting and standing.
You're right of course, honesty should be the best policy but I prefer to keep my back problems to myself....in retail everyone thinks they have or has a bad back so deaf ears etc... It's the nature of the job and ten hours has been just about do-able. There's a poor bloke on standing checkouts who never moans but I know he's on blood pressure meds and his feet swell up if he doesn't get moved to sitting.... No one complains except the public! I really had no idea it was such physical work but there is really nothing that can be altered so I am just getting on with it! Easier said than done! I've decided I'm not going to to hoover anymore! Someone needs to invent a blessed machine that doesn't wreck your back! I enjoy the work, it's the other parts of my life I can influence..... 😜
What kind of meds can you rely on to get you through and do you have some back up at home? Both should help to get you through....I also use those sticky heat wraps or (lol) corsetry! X
Hello,
I was a Police Officer until my Osteoarthritis got so bad that the pain meds meant continuing to work became untenable. My bosses were great and I was given a desk job. I had the correct desk and chair which also helped a lot. I changed my hours as getting in for a 10am start instead of 8am meant that it gave me a bit more time in the morning to get ready and function for the day ahead. It also meant that I did not have to drive in during rush hour traffic. I found having a heat pad or hot water bottle helped my back but not the hot flushes (a bit of a strange experience for a bloke!)
On another note, the Benefits & Work website is very helpful. I understand that Citizen's Advice are also experts at these damn forms. I used to fill in forms for a living and these firms are in a category of their own.
It took me over a year to get PIP and I got the lowest rate for daily care, nothing else. I did not appeal at the time because there was a chance that they would review the whole award and I would get nothing. However, now I have to use a wheelchair when outdoors so I have asked for them to review my Award. I would cross my fingers but it would hurt too much.
How did you get PIP? I am on the lowest DLA and use it to fund my medical treatment. I am dreading when I am transferred to PIP because my understanding of PIP is that you have to be virtually housebound to get it.
I live in West Sussex, so I suspect that it was one of the areas that was changing over to PIP from DLA. I filled in the forms and then had to go to a medical. The nurse was nice enough although I did not agree with some of the content of the report. I only got 4 points for mobility despite having major problems walking and being on morphine for the pain. I just about got 8 points for daily care.
My advice for PIP applications is to take your time completing the form. In effect, you need to give them as much information as you can about your condition on a daily basis. They don't know you or anything about you so it is totally down to you to tell them everything.
Look at the headings in the form, for example washing and dressing. Keep a diary for the week using the headings as a guide. For example, if you can't bend to wash below your waist because of back pain then put this down.
Under PIP there will only be 2 rates for each of the 2 groups. Standard and enhance care and standard and enhanced mobility. So tour lowest DLA care will be gone.
Get as much medical evidence as you can from GP, consultant, OT anyone who you deal with. If you have known named conditions even better.
Don't wory about getting turned down first time it is almost the norm. But never give up - that's what they ant us to do.
if you are working then you possibly have funding to try something like Alexander Technique. This will give you insights into doing things that no amount of words can. In the Alexander Technique the Alexander Teacher uses their hands to enable you to become aware that their are better ways of moving, sitting and standing.
The better way of moving could help you in your work situation.
Keep copies of any emails, letters or verbal comment from bosses etc should you find you struggle in the future and get treated with discrimination, as I have had to do in my job. I didn't think I'd need them, but I'm a stickler for keeping stuff and the documents are now evidence was I am being bullied because of my disability (EDS and severe gastroparesis). Be careful how you phrase things too, because if you begin to ask for changes in your job, and say you can't do things, it is like saying you can;t do the job any more... sadly! Pacing is a key thing with working with chromic pain, knowing when to take pain meds and when to rest. Find strategies like leaning against things for support, sitting whenever you can, and taking small breaks when you can do thing that don;t take much thought. Stress is a major problem so try to not worry of you can about stuff... try and sort any worries out on the day or it'll mean no sleep and feeling rougher the next day. Find the workmates who you can trust so that you can be honest and know that if you ask them for help, they will do it because they care. Good luck x
Work in my eyes is voluntary I am on various Think Tanks in various parts of the NHS.
This stops me having to be obligated to go to work at regular times as my condition affects my Mental Health I am unable to use the old brain cells because of the medications I am forced too take.
Our lives are governed by limits and we all need to know what our limits are. It is no good forcing ourselves to do thinks our conditions would feel uncomfortable.
If you feel you can do things and still have the capability to do them, good luck to you I wish you well, although personally if we take a position knowingly we will have problems with, it is not only unfair to you, also to an employer who could cause damage or expect to much from you.
Sadly Bob there is little or no financial support these days if people don't work. The social security safety net is no longer so what is the alternative if you are too young to take retirement?
I know only too well how cruel these past 5 years have been for all Chronically sick and disabled people and whoever comes in on Thursday it ain't going to be any better.
My Voluntary work is very short periods, normally every two months for two hours so that is six two hour sessions every two months at the most
I had to miss three sessions because I had a massive flare and even now I am not right yet. So I might miss my next meeting, mid week.
What gets me is everyone has good intentions, it is the actual situation that frightens me. My opinion at this time is god help us if the election goes a certain way as I was reading a newspaper on the net a couple of months ago and I was taken aback by some content. The paper said that Health contracts with Europe and UK were going to have to allow American Health Companies to bid for health contracts in Europe and the NHS. This could privatize our NHS by the back door as these contracts have to given preferred status
I think going from nothing to full time work is a lot to suddenly cope with. I hope it goes well for you and is only for a couple of months so probably douable?! You might be better off in the future looking for part time work. I work 3 days per week Mon, Tues, and Thursday. Hate Monday's because I know have to get up next day for work! I know it's hard finding part time work especially trying to get a decent wage! Am wanting to change job but struggling to find something else that pays as well as current job! Don't think I could cope with more hours.
In response to people's comments about housework. I have learnt to be less fastidious and to let things go. I also get DLA and use that to pay for a cleaner who just does an hour a week for me. She doesn't do a great job but is better than nothing. She concentrates on kitchen and bathroom with other areas done in sort of rotation. I do the dusting - can cope with that!
Also my DLA assists me working part time..... Am terrified about move to PIP in case don't get it! But member of Benefits and Work web site and hope info there will help. Not just about money - my Blue Badge is vital for me. Life was very tough prior to getting it and my council refused point blank to issue without high rate mobility.
If like me, you still try to do some housework (even though the finer points are neglected ), the rechargeable vacs are a godsend. Very light, no wires and with plenty of oomph. I have a GTech AirRam and it's great. I don't think I could manage an ordinary vac now.
Good recommendations, thanks C. Is it good with a medium pile carpet? That's my bête noir! Downstairs got hard floors which is fine but trying to get the Hoover head over the thick pile is literally a killer and its white (not my choice!) so shows every blob.... Gah! Can't do it anymore... Last week's acute spell def means another life adaptation required!
Another tip - three or four pegs at top of duvet cover as you get the edges of duvet in, attaching top edge of duvet to the cover really helps! I usually have to lie down on top of it when I'm finished!
lifechanger! Only problem is getting into niggly corners where you would normally use an attachment. I save those jobs until I'm really up for it and use electric vac!
I am working pt (23hrs), and had just recently reduced it from 28hrs. Due to the nature of unpredictable flare ups its tough to be somewhere at a specific time - i think my employer understands and I have suggested to them to rework hours if some days i am too ill, and take most of my medical appts outside work. I also try to work from home, but its not ideal as i am needed in person. Not sure how long this can be sustained. On one hand it is a massive struggle to get there, function and then to spend the rest if the time outside it to manage condition and recovering. But it is such a rewarding feeling knowing you have managed a day and you support yourself (well, its not enough to life but better then nothing at all).
However, there are few jobs and employers who accept you turning up when your body allows as husiness goes on. I am trying to become self-employed to work from home where i have flexibility to fit in pain and being ill, and work when body allows. I feel awkward in the current job because I cant sit for long and always need to stretch, at least at home no ine can see this and i can listen to meditation music that helps in flare ups - but i would look like a right nurde doing this in public.
There is very little support out there from the government , so its a tough fight - but being able to still do some work is a great way to get a sense of achievement and to stay away from depression.
hi linda . i stopped working 10 years ago due to my lower back pain back hip legs and feet i have just been upped my morphine to 60mgs a day with more pain killers i no it i hell not getting out but i just suffer it to see my m8s so if you want to talk just let me know dougie19166
I had pain injections and only three days ago pain came back does not work for every one as doctors told me .ive been house bound for a year now hope it works for you
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