Newbie

Newbie

Well I suppose I better introduce myself... *Cough*

Im Sloth *Waves*

I often refer to myself as a SLOTH because I suffer from a syndrome called Fibromyalgia, chronic widespread pain... I also have osteoarthritis and SAD.

All I do is sleep. I once slept for 4 days straight only getting up to pee... but then, then.. its like... is it worth getting up to pee? Cant move... blehh!

I have suffered from Fibro since, well since I can remember. I'm 24 years old but feel like I'm an old woman trapped in a young looking body.

In high school it really hit me with overwhelming 'growing pains', burning, the feeling of stretched muscles when I'd not done anything, feeling as though my toes etc were dislocating... Doctors just told me I was just growing, and passed everything off as other things. I was told I had asthma.. turns out I dont, its caused by my Fibro. I still get 'growing pains', burning, even cold wet sensations sometimes. The pain that makes me laugh is feeling as though someones kicked me right up the ass! I have so many weird and wonderful pains. They start one place then move to another! Grr.

After years of changing doctors, after them all trying to just cure me with antidepressants... I'm in pain not depressed! After feeding an army of vampires with all the blood tests I'd had done and nothing coming back, I finally found one that knew about Fibromyalgia who sent me straight to hospital for tests. They told me straight away I had Fibro and osteoarthritis in both knees.

After waiting years I finally had an answer. Its been a long and difficult journey but I'm here! But.. here isn't really much better. Ok, I know what it is now, I know I'm not ever going to die from my pains... But what is there? Just pain killers.... lots and lots of them. They help to dull it a little, but its never gone.

Both me and my mum suffer from Fibro. I recently discovered that her mum (my gran) had Fibrositis which was the old name for Fibro. She had little lumps in her muscles too like I do. I have one in my knee, it likes to move around when you poke it!

It seems to run in the girls huh! Which scares me, what if, when I have a little girl. Will she be in pain too?

OMG being pregnate and having Fibro... That will be interesting! haha

Anyway ...Shortly after I went to see the physioterrorists who showed me my limits, what I can and cant do. Now that was depressing....

*LIFE*

I work as a deputy store manager and in my spare time (if I'm lucky) I like to take the odd photograph. Photography is my passion, my canvas.

It makes me sad that I don't have the energy to do it more. My camera is very heavy..

Its been very hard coming to terms with it and I've had to give up a lot of things I love. I can no longer play musical instruments because the repetitive movements kill me. So I recently sold all my instruments as It made me sad to look at them. I used to look rocking out of the drums but it slowly got harder and harder...

I move very veryyy slowly and spend a lot of time lounging around and sleeping. That's why people call me sloth. They too always have a slight smile on their faces :)

Did you know... Sloths move so slowly that they turn green because moss grows on them.

I'm not Green... yet!

Every day is a battle, some days I win better than others. Sometimes it's a sharp jabbing sensation, other times a dull, miserable ache that wears me down. It burns... nobody should have to feel this much pain... And just because you cant see it doesn't mean its not there. Don't ever let people tell you other wise!

I'm often hit with overwhelming tiredness and get brain fog... or 'fibro fog' as it's called. Because I am unable to get into the important level of sleep I take months to heal, become very forgetful and often slur my words. Its very frustrating, I know what I want to say but it never comes out right. It makes me look so thick... So stupid... But I know I'm not! So I tend to stay quiet, so not to embarrass myself.

...I'm always so very veryy tired *yawn*

Because I look healthy and try to kept up with my responsibilities, which is becoming more and more difficult, a lot of people don't believe that I am suffering like I am. Some even say it's "all in my head" or that I'm lazy and trying to avoid work!

I've worked for my company for 4 years now. They always new I was slow and found things difficult, but since being diagnosed things have gotten even harder. They want rid.

It's all so hard and I hate not being able to do things. Even the simplest of tasks are near impossible. My Boyfriend is a saint for putting up with me!

7 Replies

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  • evening sloth, cherrypie here.

    bless you mate, its hard isnt it... i totally empathise about the brain fog thing... i tend to stare strangley into the distance whilst my brain is trying to catch up on a part of the conversation i got stuck on a few minutes or hours earlier.

    im sorry your employer isnt supportive... if your diagnosed your covered by disability discrimination act so dont be bullied.

    welcome to the best support group in the world ( as far as im concerned). feel free to go about your business on here as slowely as you like.... im no road runner myself.

    sending you a hug.

  • hello im new here too agree with cherrypie i put to my employers if they didnt put the heaters on id do them with the dda! brain fog is bad i forgot what some departments in our store are called have to ask and i make myself look an idiot but they are slowly getting used to me now. seems i hear about alot of younger people getting this lately

  • Over a year ago I was engaged. He found living with me very difficult and hated seeing me in pain. Once I was getting help at the Hospital he left me. He said he felt like he was more like a parent.

    How do your other Halfs cope with your illnesses?

    My current fella is so so good to me, but he too sometimes gets stressed out when I dont have the energry to cook, clean etc.

    If he didnt cook for me I just wouldnt eat and would just stay slothing on the sofa!

  • Welcome Sloth. I don't actually suffer from fibro, but my daughter (Rach1977) does. I joined this group in the hope of learning more about FMS (I do daily) and hoping to help others in any small way that I possibly can. I hope you'll find loads of support and fun within this group. With your sense of humour I think we will all certainly get a lot of laughs from you. Your writing is brilliant and although what you wrote is tragic and shouldn't happen to anyone, through it all you have a wonderful way of laughing at so much. It's hard and extra stress, but don't let work get you down. Everyone here will support you in fighting for your rights. Take care.

  • Evening Sloth.....I loved reading your blog.....not because I am a saddist, but you have great writing style....you could write a book and then more people might become educated with this awful illness.

    Like you, I suffered with niggling little things for years, mainly UTI's and generally feeling unwell, but not knowing what was wrong. Then to be diagnosed was a mega relief, I cried!!!

    There are some fab comments. suggestions, advice on this site and hope you enjoy it.

    Regarding your work, the temperature by law I believe has to be at a certain level for you to be comfortable. Have not got a clue what it is though. Only found that out after I left my job. In the winter I used to sit with my feet on the radiator, then when they switched the heating off I complained and they said " the policy is that we only have heating on between certain months"...really helped me when my toes were purple!!!!

    Anyway, getting a bit of double vision and I'm waffling so I'll say bye xxx

  • Thank you :)

    Yes, after having problems with work I joined USDAW 4 months ago. I have the right to have reasonable adjustments made so I can continue to do my job.

    ...But that's only want the company see's as being reasonable.

    I did tell them in January of last year that I had the illness, brought them my doctors letters and leaflets about Fibro so they could understand it better and aid me where possible. My district manager said I'd worked for the company for a long time and that I was a good worker and they had no problems with me having the illness, and didn't even look at the letters.

    He said 'Your illness is your personal life and the company doesn't need to know about it.'

    haha

    People were already helping me out and to be honest some of the things I cant do other people my height and build cant do either so we would help each other anyway.

    5 months later in June a new Store manager stepped in while the big man was off sick. Everyone else was busy so I asked him to help me but he turned round and told me not to be soft. I explained to him about my illness and he still would not help me and told me the company wouldn't keep me long because I have an illness and they'd want someone that can do everything. Which was lovely of him.

    Next thing I know is my district manager comes in and pulls me a side with the cover SM and tells me he'd had complaints and that I'm not pulling my weight and demanded to know why. He demanded to see proof of my illness, after i'd already told him and tried to show him.

    So the next time he was in I showed him again and he told me I had to see a doctor for the company to do a report to prove I had the illness cause the letter wasn't good enough.

    Did that and the doctor put down the things I shouldn't be doing. Sm read it and said right, you cant do this this and this, we'll have to terminate your contact!!

    While waiting for my capability hearing, my DM punched my arm so I made a complaint to HR as it set off the pain.

    Dm comes in the next day and makes me sign a transfer to a store further away from my home.

    So I was at a new store, had my meeting and they agreed to make some adjustments but refused to send me closer to home.

    At this time they brought in another manager, which I was told was there ready to replace me because they all believed I would get the sack at the meeting. I didn't but they decided not to send this manager back to his store but to keep him in my new one and send me another 15 miles from my home.

    Currently going for constructive dismissal.

    fun fun fun!

  • welcome thanks for your story x had fms for years but keep going

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