New Blog, living with Fibromyalgia when you have been pronounced fit to work

[Taggle]

Hello, I retired at 43 from teaching because of Fibro but was told it was depression. I retrained as a gardener but surprise, surprise the fibro got worse!! I was still told the pain was all in my head and I was suffering from depression. Eventually my Consultant Psychiatrist said my pain had nothing to do with depression, so I saw a rhumatologist and was diagnosed!! It took around 15 years from onset of symptoms. Now I am trying to pace myself and teach Dog Agility and Obedience (My Teacher Pension means I can't resume career even doing part time work)

Doing what I do takes on average 3 hours a day but leaves me shattered. Buying equipment and venue hire means I earn less than permitted work but I'm trying to build up my business because I'm told I'm fit to work. I have very painful disturbed sleep, I sleep/rest all morning, take it gently in afternoons sometimes with one hour 1:1 dog/handler training session and usually a dog walk, then classes in the evening. I can't go to sleep until I've had at least 2 doses of pain relief and in the morning more before I sleep again. I am anxious about driving and going to new places and can feel rising panic when things out of my control happen (planning permissions, rogue builders, being disliked at church because I didn't fit their mould) I find it very difficult to trust people as experience has shown most people are not to be trusted.

I have an appeal tribunal coming up. If anyone sees me teaching at my agility or obedience clubs they would say I was fit and well. I am physically fit, can lift, run and move about as I push the pain barrier, ignoring a body screaming at me to stop and the fatigue this causes. What is not seen is when I am at home when the adrenalin drops and the pain + fatigue kicks in. I tend to sit doing nothing and 'lose' time until pain relief starts to work. Then I rest or sleep.

Because I get a teacher's pension my benefit money has been stopped but national insurance is still paid. I really can't face going to the benefit appeal tribunal. I'm getting so anxious. I don't think its worth it. The original 'medical' said I was fit to work. All my medical evidence was ignored because I looked well. (You do if you follow medical advice and pace yourself with rest periods during the day and not pushing yourself as I was then!!) I don't want to go through it again. My friend says I should go but whats the point?

[Hidden]

I'm with your friend on this one , I think you should go .

Firstly, if you don't go you will never know what the outcome would have been and if your condition gets worse in the future they will hold your non attendance against you.

Also if you KNOW you should be entitled to something , this is your chance to prove it.

It's good that you are building up your business , but if it is tiring for you and you're struggling because of illness or disability then you should be entitled to DLA.

Hugs

xx

[Taggle in reply to Hidden]

Trouble is I don't know if I am entitled to anything.

Because of my pension I am considered to be too well off. I did have reduced incapacity allowance + my pension but the new rules cut off this money. I do get the lower travel componant of DLA which I fear losing. Using my car is how I manage to work, to shop, to go anywhere as this saves energy for the actual task or recreation. However DLA does not have a catagory of fatigue, I get it due to anxiety in going to new places. I don't think the government cares if you struggle as long as they save money. This may be a false economy for if my business goes belly up due to fibro,I will lose my house, car etc and they will have to support and house me!!

Sorry, I'm full of negative thoughts at the moment because I'm hurting. Normally I'm much more positive and believe in myself and my business.

Bless you

[RUBY51]

Hiya Taggle,

Oh you poor thing, what a lot you have had to go through to get to this point and what a battle you have to go through every day. I work too and I look fine! Sometimes I even look really good, apparently but like you it is whats going on inside that no one knows except all of these good people on here. You MUST go to the appeal. I used to be how you describe you are but after a lot of talking therapy and a lot of reading and taking time for myself I am learning to change little by little, Its not easy I know but what I think whatever the situation is, what's the worse that can happen? Am I going to die? If the answer is no then whatever it is I can cope with. Sounds odd I know but it does work with a bit of practice! Honest. Sit down when you are feeling calm and make a note of the main things you want to say, how you feel, how much pain on scale of 1 to 10 when you get up, before you work, after you finish, when you are in bed. How much sleep you get if it is quality sleep. How exhausted you get physically and emotionally and how much having your honesty challenged is worrying upsetting distressing to the point of total desperation. If you feel upset, get upset while you are there. Just be yourself, What also helps me is to imagine them all naked sitting on the loo! Ha ha. I helped my friend to get some money she was owed from a School. They thought I was a Solicitor, there were four women standing in a small room to intimidate my very emotional gentle friend and me. I was shaking hadn't got a clue what I was going to say and when they had finished ranting I merely asked if they would be paying her or not? Then I kept silent. That works well too! They replied they would have to think about it. I gave them my number and asked them to contact me when they had made their decision and told them how much interest that had accrued since they should have paid her. I then said as my parting shot that I have a 100% success rate and the last multi million pound Company to take me on not only had to pay compensation and give a written apology they had to pay Court costs. If they would like to try it then we would see them in Court! Ha! They rang that day and paid in full! All tips learnt from the above technique and watching don't get dun get Dom on tv and signing up and reading lots of tips from Martin Lewis and moneysavingexpert,com. Sorry for rambling but the point I am trying to get over to you is that anything is possible. Please don't give up.

I have been to these appeal hearings not sure if it is twice or three times, for hearings for my sister and once with CAB rep, She said she didn't need to go. Each time we won. I am only a little fun loving, never grown up bit daft person who laughs a lot but anyone that crosses me doesn't usually do it twice. Maybe it was something to do with one of my employers trying to get rid of me without making me redundant then making me redundant and refusing to pay redudancy. That took 16 months to get to Court and they ended up having to get a Barrister and it cost them a fortune to represent themselves and there was just me and my Solicitor but my blow by blow account of their lies won my case! Good hey? What makes it even better was my employer was a firm of Solicitors and I took them to a tribunal and settled on what I was entitled to be paid. I did tell em to pay me as I would get the money but they didn't believe me.

I have my bad days too and the rest of my family are poorly in different ways but somehow or other I always bounce back.

Not sure if you are on any antidepressants to help with your sleep? If not this is where I have gained so much and have you had your vit d checked? that made soo much difference too, Also how is your diet and have you tried Arnica gel from SBC via QVC? Have a look on qvc's website if not at customer reviews. I don't know anyone it hasn't worked for yet. Sorry for rambling on and on. Do tend to go on a bit. Hope something I have said helps and give your dog a cuddle from me. Im vege and luv all animals but I am so allergic to cats dogs and horses it makes me soo ill but I still have lots to do with em I just suffer after for a few days!

Good luck and keep yer chin up, or all three of them as my sister tells me!!! Ha ha

Ruby x

[Taggle in reply to RUBY51]

Thanks Ruby, lots of good advice.

My doctor is very good and tests me for everything and anything so all bases are covered. I'm on 225mg Venlafaxine for much needed seratonine, other antidepresants did nothing for me. for pain 15mg Bu-trans patches, Naproxin 500mg 3x a day and paraceramol, also Betahistine for menieres disease and Iron as I'm so tired.

In the last few years I've taken on and won either at ombudsman level or in court, Nat West re losing my house deeds so I couldn't move my mortgage, one builder who caused £20,000 damage to my house, the next builder who bodged the work which couldn't be seen, an architects practice which failed to project manage and sent in a rogue builder. I've also taken on local churches, one was exploiting foreign 'volunteer' staff, another which had a culture of bullying and a third, when my tutor wanted to cast out the demons or make me confess sins which caused my illness!! I took all these situations to line managers and all situations were corrected (for others) but I am persona non-grata. I am sooo tired of fighting!!

I think that if I go to the tribunal I will make a statement at the outset telling them just what its like to live with fibro, including some of your points. I don't want to answer questions as they inhibit what you want to say.

Thanks again for your support

[SharonD]

Everything you have said I can relate to - to please dont give up - you may feel you are on your own but anyone who has this terrible illness has these thoughts - but we must push the negative away and keep doing what you are doing push the barriars further still - someone will listen eventually and although you are physically exausted I hope you find the strength and will power to fight on - good luck - keep doing what you are doing - stay strong X

[Taggle]

Thanks, I would love to give up fighting but its not in my nature. Thats partly why I am hurting, rather than living the life style which my body wants I keep pushing myself to do more, to ignore the pain... then I want to cry and scream. I'll be Ok again soon!