FIBROMYALGIA

There is an organisation called Fibromyalgia Association UK.

I am a member & it.s been a real lifeline to me.

I've had fm for 30 ish years & it can get you down. Go & have a look--like this site

it's free, it's not all doom & gloom.

Look out for me---my name's doolallytapped. :-)

Thank you for allowing the link to the group I'm a member of.

Hi doolallytapped, I know you from the Fibromyalgia Association UK. You probably wouldn't remember me.

Hope everyone is able to have a decent day. I'm working for 10 hours with a little person.

Sue

Thanks Sue. I don't remember all the members, but you never know!

I didn't post much at all, I don't seem to have the time to look around forums cos I work.

Oh I see. I often remember the unusual or funny names.

Glad your still able to work--wish I could!

lol, I can never think of any unusual or funny names, I go with the boring one every time! I remembered yours of course lol.

I'm thankfully not too bad with the fibro, I seem to have it very mildly. I work as a childminder so I hope I can carry on for just another 2 years till I can retire but I'm not so sure.

I was hoping to retire at 60, but the disabling dizzy attacks I had put a stop to my working + my memory was affected & I had a very responsible job. I had to stop driving for months & then lost my job due to sickness (they had a re-org & made me redundant--waited 3 years & now my job's reappeared). All that & I developed a service for them & worked like hell for 10 years--probably contributed to my health issues.

Then, of course, all the changes came in for incapacity benefit & I only got something for 6 months.

I'm pretty lucky with the fm now, but suffer for what I do mostly. I couldn't hold down a job now due to other health issues along with fm. I'd love to, but I have so much time when I can't work, I'd be in trouble in no time. It seems sickness is a disciplinary issue these days.

I have my family, my dogs & I now keep bees (Hubby does all the hard work). I've been stung a lot, but I'm loving it.

I seem to have lost out in all directions. I should've been collecting my state pension in 2 years, but it was put back 4 years & now another 2. So I've lost out with sick pay & retirement pension, but hey ho I'm better off than a lot of people. We have to be grateful for small mercies.

I'm really sorry DLT that you've had such a rough time with your job and everything else. I'm really fortunate in that I can still work and I don't suffer as badly with fm as a lot of people.

I did fill in forms for DLA but after reading how people who are much much worse than me have been refused, I didn't bother sending the form in.

Wow, keeping bees! Fantastic. My neighbour used to keep bees - when we lived in Hertfordshire - and a couple of times they swarmed which was a bit scary, we all dashed into the house and closed the doors and windows. We didn't understand what happened when they swarm.

My family are all living away from me now, one son is 70 miles away which isn't too much I suppose, my other son lives in Amsterdam and my daughter is only 30 miles from me but I don't drive.

My husband has alzheimer's and has been in a nursing home for the past 6 years.

I know what you mean about the state pension, I'm 60 in August and don't get it till I'm almost 63. I'm not sure if I can do my job till then. I'm a childminder. It's hard now.

As you say, we have to be thankful for small mercies, I keep smiling as much as I can and keep cheerful.

Sue

Hi Sue,

I've got over it now. I worked so hard in my last job. I developed a service for a charity for people with dementia. Can you believe a charitable org could treat a staff member so badly after such hard work?

So sorry your Hubby has this terrible disease---wouldn't wish it on my worst enemy.

I had thought about DLA but haven't gone down that road after the experience I had with Incapacity. I'm pretty lucky that I have the life I have. I am ok a lot of the time, but not enough to hold down a job without going through the awful process when you have a lot of time off sick--which I would.

I can't do the heavy stuff with the bees, Hubby does that & that's why I took him on the bee keeping course I did--so he would know what to do if I wasn't brill. However, when I got on the course, the local bee inspector (yes, they do exist) is someone I've known since I was a child & he's available to help any time I need him (which is brill).

I've wanted to keep bees since I was 15, but with working, family etc I couldn't do it. It's an ideal time now & I'm loving it--apart from the bee stings! I've had so many I've lost count. LOL They shouldn't be stinging the hand that feeds them (I do in the winter).

My family all live away too. We have 1 on the West Coast, 1 on the East Coast & 1 South. LOL

Speak soon--Hubby's buzzing me (scuse the pun) to take the dog to the vet for a blood test. X

Morning DLT,

Good on you for developing a service for a charity for people with dementia. I wouldn't have believed a charitable organization would treat a member of staff to badly but then these days, I think we can believe anything can't we. It's just dreadful.

Steve is in a really lovely home and more importantly the staff are all lovely, he's been there a long time now and the staff are like friends to me.

Funnily enough I did know that we have bee inspectors lol. We had some swarm down our road a couple of times last summer and I spent hours on the phone trying to find one in this area and there wasn't one close enough who was willing to come out. Don't think I'd fancy the stings.........lol.

It's my busy day today, I've got a 1 year old here and then at 11am two 3 year olds till 6pm. It really wears me out. I really don't think I can do this job for another 2 + years but if you don't work and have a very good idea you won't get DLA, what do you live on? I haven't got a mortgage anymore thank goodness but I like to eat lol.

Sue xx

Morning Sue,

I know what you mean about eating. LOL

We're lucky we don't have a mortgage either & Hubby has a pension, so we get by--using our savings to top up which goes against the grain a bit. The savings were my pension & are being used before I'm old.

I got IB for a short while after losing my job. On the 1st medical I scored nil points so it was stopped. I appealled & got knocked back. The whole experience was so awful I vowed never to go through it again. My Hubby wants me to apply for DLA, but I am worried about getting into trouble as my fm is so variable & in the summer I do quite well. I've started to pick up now, but in the winter, with the asthma, chest infections etc. I tend to suffer more with pain, fatigue & then spring comes the hayfever.

You see all these programmes where people are followed & prosecuted. That could happen to me if I claimed & got caught doing something 'normal'.

I'm lucking forward to him having state pension this year. It will mean we can get by without dipping in the bank at last. Yippee!

I'm glad Steve's in a good home & the staff are great. You hear such horror stories, but I know from experience that the bad care homes are in the minority. When I last worked many people asked my advice on where to put their loved ones. I wasn't allowed to recommend, but I was allowed to tell me where problems had been reported, that might not have got into the CQC report at that point.

I then just gave them a nod & a wink if they chose a place that I knew was good, but in a fashion that wouldn't come back & bite me on the bum. :-)

I miss doing my job so much. I was good at it & the charity were to blame for me going down hill. They never listened to my stresses, they kept piling on the work. I employed an assistant who was rubbish, but looked good on paper/interviewed well. I wanted to finish her before her probation was up, they wouldn't let me & I had 3 years of hell because she was less than useless. She was there to support me, but I spent 3 years holding her hand through her job.

I only got rid when we had massive changes to structure & I asked a superior to help. Then they noticed how useless she was Grrrrrr! So they decided to look at both our roles & when it was down on paper, all the meaty work was on my desk & it showed how little she was doing because I'd had to take all the difficult stuff off her. When she was told she'd have to take more of my work on, she put her notice in.

What was wrong in listening to me? I think it's likely I would still be working there now if I'd got my way sooner. Her replacement was wonderful, but I'd started having dizzy spells, then collapsed in town & that was the end of driving for months (biggest part of my work) & my job.

They even broke the law as whilst I was on notice, a job came up I could do from the office & public transport. The staff were told NOT to tell me. They didn't have anybody in my role for 3 years, saying they'd amalgamated with another branch. As soon as the 3 years were up they reversed it. How clever of them! I wouldn't have taken them to a tribunal as the stress would've made my condition worse & whatever I got would be taken away from the families I cared about.

Hope your day's not as bad as you thought--speak soon. X

Hi

yes, FA uk is very supportive, but there isnt one near where I live. my daughter visited 3, all of them at least 15 miles away, after they agreed to help her with her A level article, answering questionaires and beng very open and helpful. I have considered setting up one locally, but havent had to courage nor the strength, yet I know there would be alot of supporters. watch that space - maybe sometime in the not too distant future might happen.

my physio has showed hubby how to manipulate the tense areas, and having massaged with arnica jel the past two nights, i am starting to have a better night's sleep, and sleep hours have increased from 4-5 to 5-6, and rest during the day. Ive turned the corner from this flareup.

Well done DLT, its very hard when the actions of others impact on your life. Some 12 yrs ago, I had a dreadful time at work (fast pace admin/customer service that i loved doing), but it ended with me having a miscarriage because I was getting bullied by a newly appointed line manager. I too didnt have the strength to go to tribunal, but the union persisted, so I eventually agreed, but the union also let me down because the rep (also under alot of pressure with complaints at the work place), didnt file my complaint within the legal time scale, so nothing came of it. Eventually, I left having done 16yrs service with nowt to show for it.

But it is important to move on otherwise it eats you up from within.

My car accident with a double decker bus, which triggered my whole medical issues was also an awful experience with insurance letting me down completely. again, I have had to move on and try not to be bitter. I now reserve my energy for having good times with my family. Its them that are important, plus my parents and in-laws, and all the loving folk that surrounds and supports me, especially my dearest hubby and kids, who makes me laugh with their anttics, jibes and jokes - the kids get it all from their dad.

What a blessing. when we count our blessings, we cope better.

Every day, think of 3 things that you consider a blessing and relish them. XXXX

Good Night all. have a restful night

Good morning Wardene, Xsan & Sue,

XsanX, you would get a lot of help & support through FMAUK online if you decided to set up a support group in your area. Also FMAUK has brilliant online support in their forum. There are boards for just about anything you can think of, from employment issues, fibromyalgia symptoms/problems, other medical issues & there's also a general board, fun board & adults only. :-) (that's where we post risque jokes) :-0

I was bitter for a while losing my job--it gave me nightmares, but like you said, you have to move on or it eats you up. I still keep in tough with the support workers I managed--the charity is now causing them grief (I blocked all that whilst there) & they've all joined a union recently so they can fight back. Not very good for a leading charity dealing with dementia eh?

It would benefit you too Wardene. I joined 4 years ago at the start of the sick period that ended my working life. Boy--did it help me through the blackest period of my life. After earning my own money since I was a child (I used to earn money by doing chores for neighbours & cleaning my adult Brothers shoes from around 9 years old), I found not working soooo alien & isolating. I am used to it now, but it took me 3 years to get there, with the support of FMAUK.

I only found this site whilst looking for info for a scratched eyeball--did it taking out my contact lenses.

I hope Patient UK doesn't mind me posting about the other site.

Don't fret about moaning Wardene, but please visit the site. Everybody moans on there & on the adult section, there's a place to have a real good scream at life. :D

I had a briliant nights sleep, fell asleep on the sofa, woke up at 5.30, glasses still on, tv turned itself off.

Have a good day everyone.

Morning DLT, I had typed quite a lot of the reply to you and I hit a key and it disappeared.

Let's see if I can NOT do that again lol.

I did have a bad day yesterday lol, 3 small people are really too much for me at my age. Especially when they come home from preschool and just want to dash about like idiots....... It's my day off today so I'm going to the hairdressers, then food shopping and then hopefully I can sit down and do nothing.

You really did have a bum deal with your work didn't you. It's just awful when you're not happy with just one person there, it makes all the difference. Such a shame you got someone who was good at her job just as you had to leave. A great shame too that you weren't up to taking them a tribunal.

I think I'm in a fibro fog day today. I keep reading back what I've written and nothing is going on in my head at all lol.

As for applying for DLA. I'm nowhere near ill enough to get that. Have a peep at the site I mentioned the other day and read some of the horror stories on there about people who have been turned down who could barely walk at all. If you do apply, as you know, you have to put how bad things are on your worst day and get letters from your doctor and rheumatologist. I'm telling you things you already know lol......

Well, it's raining.......again....... Still, we need it don't we.

Have as good as day as you can.

Speak soon

Sue x

Oh I do that Sue--it's very frustrating. I also prefer to type these days as I get my letters/words mixed up. I used to be a fabulous writer/speller etc. Now my writing can be terrible & you can't delete it if you get your words muddled. LOL

Sorry you had a bad day. I did too much yesterday & am suffering today. I have to go out though, need to pick up some medication & go to the bank. Will do it this afternoon--after a little snooze.