What was your breaking point before y... - Fibromyalgia Acti...
What was your breaking point before you made the decision to give up work because of fibromyalgia? and how did you cope financially?
I think about this all the time lately Cally, after reading all the posts on this great site, I'm obviously not as bad as most people here but I do ache a lot and have pain - I've got fibro and osteoarthritis - and I'm self employed so I'm kind of 'waiting' for the breaking point. I'm a childminder so it's a very physical job and I am finding it really hard. It scares me that I wouldn't manage financially.
Be interesting to see what others say.
Over the last couple of years I have had to cut down on work to such an extent that I only work a couple of hours a week now in a cleaning job. Myself and my partner are really struggling finanancially as I lost my ESA but I have just won my tribunal so hoping things will look up.
It has been a rolling thought process for me on what I should do, but I now know my body can't cope. I'm really lucky with who I am with as he supports me and helps x
Now I have my tribunal resolved, I am hoping now things will get better!
I have had to cut down my hours from full time to working 3 days a week. Also made the shift from senior management to being "just" a worker. The idea was that I would not have so much time off work (this I have achieved) and that I would have a life outside work (this did not happen as I have a teenage daughter who has a busy, productive life and my time is used supporting her). I still do not have the energy to socialise, even meeting someone for a coffee is hard work. I would hate to have to give up work as it is the only time I have contact with other adults and I need it for my sanity!
I there i only worked about 10 hours a week but had to give up due to being unwell i was having more days of pain and was letting my employer down not even knowing what was wrong with me .. they were very good about it but i worked in school and they relied on me so in the end i had to let it go i was also a single parent so i did get help slightly. Then i moved up to scotland to live with my partner were i claimed child tax credit as my daughter was still in school but i thought i may be able to work again but unfortunately i have not been able to as this fibro as hit me hard and struggle each day with every day tasks my GP as been very good backing me and my O.T. in my claim for DLA.which has been a very long hard struggle because they dont always recognize this illness as being a disability which it is.. its always worth a try , I'm housebound with out my partner because my walking is impaired and i ave to use a crutch i really think the health service should recognize this illness more...good luck with what ever you do x
Im retired now but was working as homecarer when i was diagnosed with Fibro,I had to give up eventually because of chronic pain and I was no longer able to lift my clients or infact somedays just getting myself to work was a chore,I first went on incapacity benefits untill I reched retirement and am now on a State Pension.Hope this helps .x.
My breaking point actually came before my diagnosis. I left active work in 2008 and was not diagnosed until 2009. At the time of leaving work I felt guilt that I was letting the team down if I left but I also felt guilt that I was letting them down by staying because people would have to carry me to get the work finished. I wrote a letter in the end to my Nursing Manager and said that I was sorry to resign but felt it was better that the team had someone who was mentally and physically able to do the job. Although I did this with a heavy heart I knew it was the right thing to do. I was depressed because I could no longer do a job that I loved and was also depressed that I was letting the team down either way. I could not even get my housework done in a manner that I was accustomed to and this also made me depressed because I like my house to be in order and I hate to have to rely on others. I felt a failure as a Mother and Wife that I could not physically and financially support my home life. Since diagnosis and finding the right combination of pain relief it has taken the edge of these feelings and although I do get some days when I feel like crying because I cannot continue with even the simplest daily task, I have learned to cope with these feelings and hope for a better day tomorrow.
I managed to continue working for nearly a year after being diagnosed with CFS (I worked for a fantastic company who were really good about my incredibly irregular schedule and the fact that on the days I DID manage to get to work I had to curl up under the conference table for a nap in the middle of the day!); unfortunately a business downturn meant that many of the staff were made redundant, myself included.
After that it was impossible to find another employer who would take someone on who could work for perhaps a couple of half-days a week without any guarantee of which days (or indeed ANY days) they were likely to turn up. So I ended up having to go on to Incapacity Benefit and Disability Living Allowance.
10 years later I've been diagnosed with Fibromyalgia and am in constant pain as well as permanently exhauseted. I'm still on the Benefits (DLA up for renewal again, much stress while it goes through) only now my husband has retired and we are living on a pension. We've had to move house to a bungalow as I could no longer manage the stairs and I guess the best description is that we are 'surviving' on a mix of Pension and Benefits.
In my case the decision was made for me but I have to say I'm glad it was - the struggle to continue to find the energy to work made my symptoms much worse and being at home means that I can focus on making the most of the energy/ability I have on any one day and LIVING my life as best I can within the confines of this condition.
My breaking point came when I woke up one morning and admitted to myself that I could not carry on any more. I had pushed myself for about three years to get up every day and go to work and then come home and go back to bed thus having no quality of life and its just like my body gave up. I had no social life and no home life and realised that life is to short to live like this, thats if you could call it living. I am currently in receipt of ESA and lower rate DLA although I am due another medical soon with regard to ESA. I have also just heard that I have been granted a Tier 2 pension from the NHS after about a 2 year fight. I found the CAB very helpful with advice and help on receiving benefits and the Pensions Advisory Service in London helped me to fight for the release of my pension. There are services available to help you to get the benefits you are entitled to and although they dont give you a luxurious lifestyle at least you dont have to struggle constantly to go to work. Before I gave up work completely I tried reducing my hours and changing my job role but this just didnt work for me. Its all about work/life balance and quality of life at the end of the day and work will be there long after us!!. If I am well enough I can enjoy going out and if not then at least I can stay at home without the hassle of worrying about being off work. I was on sick leave constantly for at least 18 months before I eventually gave up. At the end of the day its about making the right decision for you and then living according to your mean. Take care xx
Thanks for the replies. I am currently struggling each day and tailoring my breaks according to my symptoms at that time. So if I feel cognitively numb from too much information being in my brain, I go somewhere quiet (even sometimes the toilet) for 5 minutes just to give my brain a break.
If its more physical pain I go into a quiet room and do a 5 or 10 minute relaxation. This makes a massive difference to my working day but it's still really really hard.
I also write everything down now (and try to ignore funny looks I get from those who don't know about my fibro).
I admire myself and anyone else who struggles to hold down any type of job and even more admiration goes to those who have made a very tough decision to put their health first, often leading to financial worries.
Take care all.
I use to have a full time job, but had to give it up ,I now work 16hr,early morning that is 4am start until 7,am this is because of my sleep patten now, I have to sleep in shifts as trying to get a full nights sleep is imposable
