Earlier this year my RA was not as bad as it is now but due to lots of sick leave my boss made my life hell when I did finally get there. Putting up with her was a job in itself and I decided to spread my wings and head for the big city. Landing myself a new job within a month of looking I was so proud and loved every minute of handing in my notice.
I was upfront with my new employer and told them I had RA and it was agreed I could leave for hospital appointment s weekly, at that point I was on sulphasazie and needed bloodtests.
My new boss and team are lovely and within a month I felt settled and at home. Then came that wednesday afternoon when I got a call from the doctors to stop all medication immediately as y white blood count was dangerously low. Thinking nothing of it I travelled to work Thursday morning bit stiff asi climbed the station stairs, by lunch I was using my stick and had to be sent home due to the pain I was in.. I'm in so much pain and have been ever since.
That was in July, I had been there 1 month. My boss is absolutely lovely and has extended my probation and seems very understanding the thing is though I only receive SSP which is only £80 per week.
I don't know how long I am going to be off for as I am know where near set on medication. Please can I have your thoughts about giving up work?
Financially I would be better on benefits but then when I am better might not be able to find a job. I just dont know what to do for the best?
Any thoughts or experiences would be great?
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Marnie87
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While you are only getting SSP you can top this up with income support.Once your SSP has ended then you can claim ESA - even if you're still employed.Check out direct.gov.uk. and go to the benefits section which has lots of advice and will also tell you how to claim.I really think you need to put a claim in for DLA too which can be paid if you work or not -again info on the above website
Let me know if you need help filing in the DLA form again, it needs a very particular way of working things to have a successfull outcome, and can be very difficult to fill in unless you know. I have just helped a guy who lives near me fill it in and he is now the proud owned of a lovely peugot 3008!!
My mum tool me to citizen advice and they wrote off for me and now dal have wrote saying they are investigating further with my consultant so will let you know when I hear more.
I work for The AA so things are done by the book. I have just returned to work after 3 month's off due to being taken off MTX. The weeks that followed that day will live in my memory forever. Pain, sure a "10" in over 30 joints at once lasting a day or more ... suicidal is putting it mildly.
After several weeks the new drugs started to work and I'm more or less painfree and back at work.
What a joy to be back, the banter, the interaction with other human beings ... its priceless, what more can I say.
Think very hard before you throw the towel in with work and let's not forget you might eventually be put on a mix of drugs that controls your RA then you will think what was all the fuss about!
There will be the inevitable flair in the future .. cross that bridge when you have too
If your desease becomes more managable, then you always have the option of finding a new job, getting your RA under control doesn't always only take 3 months.. Just saying...
agreed and i really wasn't belittling what you've been through, and i'm really pleased things are going well for you PeteC, i just believe that is has to be down to individual situations. I personally didn't take the desicion to give up work until i was 24 and had had the desease for 11 yrs but it was the best desicion i've ever made, swapping work/life balance for health/life balance has helped my desease no end... i now do voulentary work and find that very rewarding, but without the pressure if you need to take time out for your health.
I currentlly work 24 hrs pw and i'm going to hang on to my job as long as possible - i was full time when diagnosed but have had to gragually cut down.It's not just the money - some days i'm sure i wouldn't get out of bed if i didn't have to go to work and i consider most of my work colleagues good friends.If i'm having a good day i try to do an extra hour so when i need to go early i have some flexi time available
You are in the early stages and you have not yet found the right treatment.Your new boss sounds brilliant too -i really wouldn't make any decisions yet.See how you feel in the next couple of months but in the meantime you need to claim some benefits -see post above.
Marnie,don't give up work until the last resort. I got finished 2yrs ago and i haven't been able to get a job since,now i couldn't work at all. My case was redunancy and it wasn't a good time. My boss was very good with me and let me have time off. My health wasn't that good then,but as i was in a desk job and i could cope with it,i also had a car which enabled me to get about. Now nobody would give me a job as my health would prohibit me now.
As long as your lovely new boss is happy with you carry on. Can you do any work from home, that might be of help to you.
Keep going on and best of luck for your work life.
Hi Marnie, think long and hard before making such a major decision. Working is always better for someone both mentally and socially. Plus the friendships made at work that offer additional support.
I struggled with work for a long time, I had no life beyond work, I was always to exhausted or in to much pain to do anything other than rest when at home. Bad flares always took over a yr to recover from though the pain never fully subsides.
Eventually with the support of the Occ Health doctor I left work knowing full well it meant retirement at 52, I knew I'd never get another paid job at my age.
That decision was the best thing I ever did, now got my meds and pain under control, got a limited social life and most importantly I'm not always exhausted as I can rest as and when needed. And, I'm actually better off on benefits than I was working (I do get all disability benefits) and I was in a reasonably well paid job!
So have a good long think about it, but your health both physical and mental wellbeing must be your priority, the rest will work itself out eventually.
Could you tell me what Benefits we can get as i am having a horrible time at work and this is affecting my health too ! I am on DLA and get tax credits for working more than 16 hours at the moment but would like to see if i would be better off not working till i get my RA under control.
Benefits your entitled to claim depends on circumstances for example I'm single and claimed contributions based ESA.
So you could claim ESA, which is only paid at £67.50 for the first 13 wks assessment phase then goes up to £94.52 work related activity group or £99.85 support group.
If your single and get DLA middle/higher rate care it qualifies you for an extra £55 Severe disability premium.
Plus there's income support and different premiums depending on circumstances i,e family premium, disabled couple, severe disablement allowance etc.
My advice to anyone thinking of giving up work on health grounds is think long and hard first also, check with an advice agency such as CAB first. This would ensure you apply for the right benefits. You can also get advice from DWP carers support line... You can't rely on DWP telling you and remember different circumstances mean different benefits.
I honestly don't blame you Karen, work is better but the reality is most workplaces ignore the DDA and Equality laws and with a hidden disability work mates often don't believe the problems or pain we have.
It's also always worth barring in mind with the new rules regarding ESA, at a medical you could have someone unsympathetic to hidden disabilities and they could decide your fit for work, you then have the added stress of having to appeal that decision and fight for your benefit.
Good luck. x
HI Marnie
I would attempt to keep the job on and would look into getting DLA. You appear to have a good boss and an understanding workplace so if they are being supportive, i would hang on in there for as long as possible.
But the decision lies entirely with yourself, it might be that you are stressing about your job and in that case it would be somthing less to worry about while you get yourself better.
All the best and good luck with your decision.
Dont rush that decision!if the new job is being supportive try and stick with them things through and discuss it was close family xx
Make your decision when you feel reasonable well. If your new job are not pressurizing you, then I think you should deferr the decision and focus on getting better.
Work gives you a purpose, but what is important is to strike a good work life balance. See how you feel in a couple of months. Make a chart and write the good points of staying work and the good points for giving up. the side that had the most...... well you get my drift.
Good luck and I hope you start to feel better soon.
Sci x
To Beth58:
Your history is almost identical to mine. I was only 53 when I was forced to be on extended leave for a severe flare, affecting my feet..was unable to stand let alone walk, was hospitalized, treated with IV antibiotics, on the possibility they were dealing with bone infection, several tests and CT scans and Xrays determined RA and/or Psoriatic arthritis. Fortunatley I had signed up for Long-term Disability insurance and was paid 70% of my gross pay until Social Swecuraty disability was approved. It took two appeals, usually does, the third, the appeals judge said my case should have been approved initually.
One factor is, our age. Much younger patients are told they can be trained to do more sedentary work, such as computer jobs. Sometimes they are referred to Vocational Rehab to be tested to find an aptitude for other jobs.
Your second paragraph is me exactly. My kob was my life, atleast my social life. I was raising 4 teenage sons at the time, and would come home in so much pain, I would lay on my bed for a half hour or so, wondering if anybody else in the world could hurt this much, was this just the normal feeling after a day's work.. I eventually learned that was just not the case.
Now I continue to be affected by both arthritises, but am on good meds that keep it bearable, one being the newer Biologic ant-T cell Simponi, and Methotrexate. Plus adequate pain meds 4 times a day. I am now able to be as active as I want, but take many breaks and rest sessions throughout the day.
I cannot get a different, less expensive Medicare Supplemental ins because of my medical records.
I really don't understand this, People don't usually die of arthritis, the only costs I have are lab and xrays, and the meds. But I suspect they see us as a threat to spend years in a nursing home.
Best of luck on staying well. Marnie, hang in there. Leaving work at your age will cost you friends, camraderie, a sense of usefulness, mental stability, and of course income. Just keep pushing your doctor to keep you able to work, whatever he can do. God bless. Loret
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I work 3 days a week but my boss keeps emailing and asking for work on my days off. The stress is making me flare.
