I believe my work is trying to encour... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I believe my work is trying to encourage me to leave - I can't afford to - HELP!

Sarah-Jane profile image
22 Replies

I went off sick last spring with suspected Arthritus problems. This lasted for 6 months although I pushed to be allowed to return. I went on line and found Access to Work who have been great. They help with transport to and around work. I thnk work were surprised and cornered into keeping me. Many others have left but who would want me? I have also signed up for DLA and my doc has yet to diagnose FM but believes it could be and treats me for the pain. Had lots of tests etc. But work is not accepting my times off for FM pain with comments like 'we are so short of staff' They know I won't make them cope if I could come in but they make me feel bad and I think they are aiming to lose me.Its not like they pay for those days off. Yesterday I had FM fog right in middle of my assessment! I am beginning to worry again as we cannot afford for me to be out of work. We will lose the house and still owe thousands, and in this climate that should leave us with a bedsit if we manage to sell first! I am 50 - who else would employ me?! I have been with them for over 12 years as a Teaching Assistant. Should I tough it out? What are the alternatives and what have you done/found? I do have a Union, should I contact them? I am able to work full time, Monday to Friday, but most TAs work part time. If things were to work out for me I could cut down my hours as I get worse, but I am hoping for another few years yet.

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Sarah-Jane profile image
Sarah-Jane
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22 Replies
Twiglet profile image
Twiglet

The first thing you need to do is push your GP for a diagnosis. If he says FMS you are covered under the equalities act and your employer are then the ones expected to make resonable adjustments to enable you to carry on working. Are you entitled to tax credits? If you are you can also claim the disibily element which would help you out a little financially. Dont let them push you out.

engSophie profile image
engSophie

you need to be tough my dear. it is your right to stay in your job and they can't push you to leave. that is discrimination. I have been looking for a job for 2 years, it is very difficult and with the fibre fog interviews are nightmarish

Pat16 profile image
Pat16

Hi. When I first started with Fibromyalgia I too had to take time off work. After a year unfortunately I had to give up a job I loved as it was obvious in my case things were not going to improve. I know it affects us all differently and so I really hope you pick up and can carry on working. In my case it affected my walking and sitting along with the constant pain and everything else associated with it. I was diagnosed after visiting the hospital every three months for a year and then told that there was nothing the NHS could do. I have tried many other things ie. accupuncture, chiropracters etc to no avail. I did join a support group and although I haven,t been able to attend it is nice to know they are there to be able to contact and to be able to speak to others who understand this condition. Keep smiling and if you ever want a good moan go ahead and have one - you will feel a little better for it. Best Wishes

Sarah-Jane profile image
Sarah-Jane

Christine there is no rep at my work - I joined Unison as I had planned to teach.

Sarah-Jane profile image
Sarah-Jane

Thank you all so much for your encouragement and support. I got the feeling from the Doctor that he didn't want to diagnose me for some reason. I will have to push for an answer though. I do not know what his reasons are and they may be valid but maybe if I did there could be more progress. I am not undergoing any further tests, just getting treatment for the pain, and fidgeting legs sydrome thingy. I have to keep upping the meds every few weeks. The pain is based in my right hip and thigh, but my left hip is similar, just less. I cannot walk very far so have a wheelchair to get down between classes, a computer chair for in classes as its mobile, fits better being the right height for me and goes between desks. I also have a battery chair for around the school site although I cannot use this in the snow or on ice! They have done a lot for me but they are making me think that I take it for granted and am swinging the lead when I can, or at every twinge - but I went in whilst in pain and lasted as long as I could without making things worse. Ho hum, as you said, chin up. Tired now so will try to sleep. Maybe tomorrow I will have the courage to confront her and explain how she made me feel and how things are. The Dr I shall leave until the next visit which I think will be soon. At least he listens!

I will come back and see if anyone else has any ideas, opinions etc.

Sweet dreams and soft hugs - thank you as well, its nice not to be ignored!

Sarah-Jane profile image
Sarah-Jane

Thank you. Will I be able to understand it? I am not thick but feel thick reading technical documentation. I am also not bright. Would appreciate it.

FionaP profile image
FionaP in reply to Sarah-Jane

Contact Unison and get a Rep to meet with you. They will understand all guidance and procedures that your employer has to conform with.

I was dismissed 6 years back after being out for 2 years. Civil Service! Never really adapted my work and back to work went from 10 hours to 37 within 2 weeks. They tried to make me say I was unable to do the job I was hired for as this would give them grounds. I kept saying I may be better in a few months. Eventually they won ad I did not have good union. Think hard before you decide to go part time as if they then retire you it will be on those terms and you'll lose more in the long run. Medical retirement is very small allowance too unless you have 30+ years work. Unison will go through all this. Good luck

Sarah-Jane profile image
Sarah-Jane in reply to FionaP

Thank you for this. Especially the last bit - only another 18+ years to go then!

Seriously, I appreciate the advice.

FionaP profile image
FionaP in reply to Sarah-Jane

You're very welcome. Wish I had walked out and had my employers for constructive dismissal, they treated me so bad. The HQ Office even told me that there were three times I should have been told to take that action :/

I think it is important for the doctors and consultants to be truthful in letting us have some idea of fibro progression. I have yet to meet someone who has knowingly had fibro for 15+ years and has it settled/ controlled. I seem like most to be trying to out think it, setting up ever new coping procedures. Wishing you the best of luck

LindseyMid profile image
LindseyMid

Have you seen a consultant specialising in Fibro? I just ask because you mention pain in your hips. Fibro pain is all over. If your pain is not all over, then Fibro is less likely. Many people with Fibro do also have conditions such as myofascial pain which mean that they get worse pain in certain areas as well as the all over Fibro pains. But if you don't have widespread pain and sensitivity to pain (hyperalgesia) it isn't Fibro. If it isn't Fibro, you clearly have something going on, so further referrals are warranted whatever.

If you have a union, definitely use them for legal advice and support.

In this financial and welfare reform climate, it is definitely better than people stay in work if they can at all, rather than quit work and need to rely on benefits that are becoming increasingly precarious with this Government.

Sarah-Jane profile image
Sarah-Jane in reply to LindseyMid

I will definitely have to have a talk with my doctor and hope to do just that next week - provided he is not on holiday, which he does alot as he also has children. Anyway, I stupidly forgot to take my meds last night, I put them near so I would not have to get up again for them 30 mins later and thought I took them. I was in so much pain, an extreme tenderness in my hip area, my thighs and my back. I also had pains in my arms and hands - my doctor thinks I probably have some arthritus although none showed up. This morning I felt like I had the onset of flu and only the taking of my morning meds made me begin to feel any better. You could be right, I could have something else going on, but I have so many pains in so many places its hard to recall all of them. I am so tired in the afternoon/evening and some nights have problems getting to sleep, last night especially. I could not move without more pain and staying still just allowed it to build. I am really sensitive to pressure in my thighs, originally in my hip area when we thought it was bursitis, which we think was the trigger if there is such a thing. I have problems with my shoulders, knees and other sensitive areas - my doctor believes I have over the 18 areas. I feel that I am at the early stages of FM as I am in contact with other FM sufferers and I seem to have many of their problems, just not as bad. I had a bad time last week and my doctor signed me off as I could barely walk anywhere, increased my meds and said I may have twisted and pulled a muscle in my thigh. I have days when I appear to have the FM fog, I certainly am more confused and have problems with words, finding things etc more than usual. I have depressive times too and migraines that make me heave they hurt so much. So it is beginning to look more like it is, but then I am not a doctor!

I really don't want to leave my work, I love it. Just not all the time, and sometimes things are a bit trying. I cannot afford to not work, but I think I have said that.

marymcd profile image
marymcd

i was "pushed out" of my job after 21 yrs, i worked in a hotel and worked shifts from anywhere between 5am and 11pm, when i could no longer do this and got letter from rhumatoligist stating i could only work mon-fri 11am-4pm i was practically forced out by management having not had a day off previous to 6 months for pain for over 5 yrs, i lost my house and my job and now cannot find work within those hours that would pay me enough to come off jobseekers as i live in private accommadation and recive full housing benifit, however now jobseekers are forcing me to look for full time work, which i physically cannot do and will probably end up losing this house too :(

Sarah-Jane profile image
Sarah-Jane in reply to marymcd

Oh Marymcd, I am so sorry! That all sounds horrid and really unfair. I do hope you find a way to get through to them that you cannot work full time. Its kind of what I fear too as I expect I will eventually have to give up full time work. I hope the advice I am being given here helps you too. Take care of yourself and I hope things improve for you soon.

kraftyk8 profile image
kraftyk8

Twiglet touched on Tax Credits and that is a definite to investigate, this link turn2us.org.uk/benefits_sea... provides excellent information and a benefits calculator. You can use it as much as you like, so you can try different scenarios and I would try it first to see what help you would get as if you were not working. However, I think the first thing you need to do as soon as possible is to ask your GP to refer you to a Rheumatologist. I would also ask to be referred to a Pain Consultant, so you can get the best advice on pain relief and access to a Pain Management Course. Lastly, don't let other people make their problems yours, you have enough of your own. It is the school's problem if they are short of staff and they need to manage that. They should be grateful that you get there at all, to help them with their problem.

Sarah-Jane profile image
Sarah-Jane in reply to kraftyk8

Thank you KraftyK8 [like your tag] I will look on that site as soon as I finish here. I did see a rheumatologist but he thought the diagnosis of bursitus was wrong and I had a trapped nerve in my back. However, nothing showed in my MRI scan and although he wrote and said he wanted to see me in his back clinic, even a letter from my doctor has not brought this up!

Work have just employed 4 more full time TAs and I think I have enough support from Maths to keep going, so long as I physically can. I hope so because you never know what is going on behind you. I may cut my hours before I do anything else, but I will look into everything carefully first.

The last time I contacted Unison and told them work were making life difficult, they told me they would come to any official meeting but other than that I would have to wait until they did something before they would advise me. I wanted to know my rights and some backup too. I have worked there since 1999 but the school is now an academy so the rules have changed.

Thank you.

Sarah-Jane profile image
Sarah-Jane

Thank you, this is very helpful.

Sarah-Jane profile image
Sarah-Jane

No I don't but I was referred to one when I kept being off with migraines. She asked whether I would consider medical retirement! However, she has been more supportive since then until she left. I missed an appointment this week. Simply forgot it. My mobile died and took the Sim card and reminder with it! Will rearrange.

I have to say my line manager was really good and got me a slow return to work which lasted as I wanted to pace it and not how her bosses were asking her to insist on. That was wonderful. I did push myself then, but had been in touch with Access to Work so I had a battery wheelchair provided for me as well as a taxi when my husband cannot bring or pick me up. I felt that their support helped strengthen my return as another official body was aware of my situation. Not sure they liked that.

SharontheSheep profile image
SharontheSheep

Hi Sarah-Jane

All this stress will not be helping your health. You must think of quality of life. I loved my job and did not realise quite how ill it was making me. I started reducing hours and then eventually had to accept that I just can't function enough without help and support to continue doing it. My employer ran out of reasonable adjustments they could make and the only option available was to offer me medical retirement I am waiting for the outcome. I was devastated at first but have come to terms that this is best for me healthwise. I now have time with my children when they get in from school, before I would have been asleep! My union has made sure that things have been done at a pace I can understand and cope with.

I wish you peace in finding a solution, all fibro sufferers need peace. You need an advocate, someone in your corner, be it a union rep, dr or disability advisor. But take small steps, don't be bullied, the law is on your side and their to protect you and this forum is here for you to vent.

Love Sharon x

gmc09 profile image
gmc09 in reply to SharontheSheep

Well said, It is important to maintain a balance, little steps, a good advocate and hopefully someone that understant the Equality Actwould protect her, if fairly imterprted

Sarah-Jane profile image
Sarah-Jane

Thank you all for your support and advice. I should be seeing my doctor next week to discuss my situation. I am not sure what his answer will be now that some doubts have been expressed about my having FM at all. There are other sypmtoms I have omissed and believe he may have no idea what else to check for. There was a suggestion on a clinic in Brighton? I cannot find it and have another migraine coming on so will come back another time as the screen is hurting my eyes. Thank you.

crissy profile image
crissy

Does anyone know, can u get tax credits if you claim carers allowance and wk 16hrs and recieve low rate dla for fibro?

Sarah-Jane profile image
Sarah-Jane

Crissy, try putting this in the ask a question box, as I don't have the answer and you won't get it here because its all linked to my original question. Good luck though. =)

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