Disabled and desperate



  • Apologies .. I forgot to commiserate with tweetyateallthepies about the Migraines .. never never say a migraine is a 'teeny problem' .. I used to get them as a child ... long before I was diagnosed with Fibromyalgia .. but when with hindsight I was already suffering many of the fibro symptoms .. (during my school years I had more time off sick than actual time attending lessons) ..

     Migraines are an all enveloping feeling that genuinely can make you wish you could just die if it would only stop the nausea, the searing flashing lights in your head, the disorientation and pain on movement .. thankfully they are now something I only get once in about 10 years or so .. I know they now have some better treatments for migraine thank goodness .. but even so migraines are just awful .. image

  • Is patootie and Sas the same person ?
  • image Well I know I am not Sas .. image 
  • patootie,

    You have my support and I realise how hard things must be for you with all those symptoms to have to dealt with they each reoccur.

    As I had said, I have had some of these, so I know what a fight you must have to achieve what to most people are simple things, so you have my respect for handling it and explaining the problem on this forum.


  • Thanks Colin ..  whilst it's cathartic being able to tell folks what's wrong with me .. just reading about others even greater upheavals in their life also puts my problems into some kind of perspective ..

    With a huge dose of hindsight .. I can see that .. although none of my individual symptoms are a 'big deal' or anywhere near life threatening .. it was the symptoms 'en masse' that had started to 'overwhelm' me .. you see everyday you wake up with a different 'crop' of symptoms from when you went to bed .. so you can never say with any certainty whether the next day will be just a 'pain in the neck' .. or a 'real challenge' to be fought grimly through ..

    So you can never make plans to go anywhere .. or do something .. you have to wait for each day to come round and see what you can fit into it .. and after 15 years (or at least that's how long ago I was actually diagnosed) .. it had all become too much to cope with .. (which is simply pathetic) ..

     Even just writing in the forum has given me an 'oversight' of how I had let things get on top of me .. I can clearly see the 'pain' in my first posts .. and little by little I can see how I am getting 'back on top' of things .. even just waking up I am a 'changed' woman .. I no longer groan and say ''ohh nooo, what's going to be wrong with me today' .. now I smile (can't laugh yet, but maybe soon) .. and say .. 'what'll it be today then, come on bring it on' ..

    And so the 'downward' spiral slows and after a time (hopefully) begins to reverse .. image

  • Patootie - You are much more positive now and it is lovely to hear that you are smiling.

    Tweety - I will have to give you a ring about min tweety. Things are moving in the right direction. You will have to keep fighting the system thou.

  • patootie - it is very sweet of you to think of me when you obviously suffer so much.  my regular monthly migraine is coming to its end at present.  i am very lucky in that i have found a med that works (zomig) but with so long on strong painkillers, i have become dependent on them.  i have an appointment with a migraine specialist at the end of this month, so i will see what they have to say.

    tracey - the gp surgery gave me a ring on friday to ask me which school mini attends.  i am assuming that this information is going in the referral to the child psychiatrist (in case I hadn't mentioned, mini is being assessed for autism spectrum disorder.) i have been drugged up to the eyeballs this week and have been lucky to remember anything i have typed this week.  luckily, i haven't been too busy at work!

  • patootie - How are you today?

    Tweety - You did mention mini tweety being assessed for autism spectrum disorder.

  • thanks tracey!

    hope you are ok today patootie.  how's the wobbleator going?

  • Come on Patootie - post your training image
  • My very own wobbleator has arrived this very morning .. image .. that was quite quick delivery for once image

     Hmmm ... now I shall probably have a good work out putting it together image

     Looks into the enormous box .. these wires go where .. blimey .. peers up a long tube .. am I supposed to thread them up there or dangle them outside I wonder .. hmmm .. better read the instructions first for a change image

     It's a bit smaller overall than the 'borrowed' one .. but that will be easier for me as I couldn't shift the borrowed one at all .. far too big and heavy .. although the platform you actually stand and wobble around on is slightly bigger .. so that's good too .. image

    Now if I could just get rid of these blessed cold sores and a mouthful of ulcers I'd be more inclined to want to fiddle around with building my wobbleator ..

  • you should do it in the bloke style.... put it together until you reach a impass of 'threading the toggle through the flange marked A' and only then read the instructionsimage


  • Nope Colin .. I dare say I would still be trying to finish it if I'd done it the 'blokey' way ... and wondering why I had a small (but oh so important) metal widget left over image

    It's all together .. surprisingly easy to move on it's nice big wheels .. and will stand in my bedroom a treat .. ready for instant action any time I choose .. image

    Mind you I did have a bit of a giggle before wheeling it off to the bedroom .. I stood it right next to the borrowed wobbler .. carefully does it .. got one foot on each platform .. set the timers to 30 seconds .. lowest wobble rate .. and whhhheeeeeehhhhaaarrrr yyaaaarrrr ... ohhh myyy ggggidddyyy aauuunt that was ffffunnnyy ... image

    Near rocked my fillings out ... and I just don't want to tell you what was going on with my .. errr ... image my own wobbly bits .. hahahahahahahahahh ... talk about ripples in a pond .. I think I had the 'perfect storm' going on image  image

  • I love the fact that you tried it image


  • A double wobble - I love it! image
  • (Waves to Hipps) image
  • ha, ha - i am picturing you on two wobbleators patootie; it has really made me smile.  hope you had lots of fun!

    <waves to the rest>

  • It was decidedly wobblelicious ... image

     Now when will I ever get the chance to try that kind of thing again .. maybe never .. so you have to grasp these opportunities don't you .. and it really made me laugh out loud .. image

  • Well done patootie on putting wobble thing togethere and doing the double wobble image
  • patootie - i don't know what part of the country you are in but i saw an advert in the free london paper this morning (metro) and thought of you.

    research trial for fibrommyalgia medication

    the department of rheumatology at kings college hospital is conducting an international study investigating a possible new treatment for fibromyalgia.

    if you are at least 18 years old and suffer from fibromyalgia, you may qualify to take part.  participation will involve taking either study medication or placebo for 14 weeks.

    you will be monitored throughout with regular visits to the hospital including questionnaires, blood tests and clinical examinations.

    all travel expenses will be reimbursed and information will be strictly confidential.  if you are interested in participating, please contact samuel mugari on 07948 835216 for further information.

    ref: 07/MRE03/18

    hope you are ok in the adventures of the wobbleator!

  • "Patootie and the Wobbleator" would make a great title for a book! image
  • Hi Patootie I've not seen this thread for a while, and am glad to hear you are more positive - the double wobbleator story made me laugh - sound like great fun image
  • Giggles .. how about 'Me and my Wobbler' ..

     I'd be interested in the trial tweetyateallthepies .. 

     hang on I'll go and have a bit of a google  .. ohh lorrrs just came across a dozen sites saying .. "fibromyalgia gone in days" .. honestly if that were true I would have got rid of my fibro 14 years ago .. it does make me cross as it gives false hope to thousands of folks newly diagnosed ..

     Hmmm ... but what's this  ..  just come across a really interesting 'new' fibro site .. bookmarked it and will go back to read more .. it basically says that the C1 vertebrae is compromised .. and this causes many or all of the symptoms .. yes I can understand that .. and just a short while before 'really' getting ill with this syndrome a car I was in had a high speed rear end shunt .. from which I had mild (but recurring with problems) whiplash ..

     Good grief .. just scanning down the pages .. "Fibromyalgia sufferers have one of the highest suicide rates" .. hmm well it won't claim me thank you very much ..

     I think the phone number is a mobile number isn't it .. I'll look it up and see when the cheapest time to ring is .. many thanks tweetyateallthepies .. thank you for thinking of me .. it's very much appreciated .. image

  • it is a mobile number patootie.  they often have things like that in the london papers because there are a lot of large hospitals in london doing research.  not often i see something relevant to someone i know.  i work at a london hospital and there are often things in the papers about our research which give some of our patients (and others that have never been to see us) false hope because the journo that writes it up inflates the whole thing to make it sound like the new miracle cure the world has been looking for.
  • Pheweee .. some rotten person image flung a virus at me when I popped out to the post office on Tuesday afternoon .. proper laid me low it did .. thankfully not the Norovirus though .. but I did have bright red cheeks forehead and chin for about 2 days .. then slept the clock round yesterday .. just getting back to 'normal' now .. image
  • That wasn't very nice of them - hope you feel better now image
  • hope you are feeling better patootie - i am just recovering from a hell of a migraine.  hope you are enjoying the wobbleator.
  • hiya patootie.  hope you're doing ok.
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