Disabled and desperate

tweetyateallthepies wrote (see)

yikes, that is a hell of a list patootie.  i can't even begin to emphatise.  makes my migraines look teeny in comparison.  i had flu once about a year ago and it was awful.  can't imagine being like that every day.

You should see the American list .. they've got their symptoms up to just over 120 now .. mostly by splitting some symptoms into a 'main symptom' and then 'sub symptoms' .. but with additional things like ridges in the nails .. a propensity to dry split hair .. pimples (mainly on the body) inclined to become septic .. etc etc ...

But, I feel I have more than enough symptoms with just the UK list .. and the only symptom I haven't experienced (yet) .. on the list is 'mitral valve prolapse' .. the chest pain is a bit scary .. it's actually caused by inflammation in the ligament between the sternum and ribs (and very occasionally between ribs and spine) .. so everytime you breathe it's really painful .. it can appear to others as if you are having a heart attack .. as the intensitiy of the pain causes a 'mimicry' of the symptoms of a heart attack .. you flush, have a cold sweat, clutch at your chest and generally stagger around a bit .. hehehe ... whilst you are trying to explain that it's just costochondria* .. and not a heart attack .. you find an ambulance has turned up and you get rushed off to hospital ..

By the time you get it all sorted out (and I now carry a card to say I get costochondria) .. you are miles away from home .. no way to get back other than pay for an astronomically expensive taxi .. and are completed fatigued .. with all the 'daily' symptoms of the fibro flaring out of control due to the stress ...

* I know it's 'just' costochondria if 2 paracetamol ease the pain inside 10 minutes .. if I get no relief from 2 paracetamol (and this is exactly what my doc said) .. with no relief .. panic and get yourself rushed to hospital because it IS a heart attack ..

And guess what ...  I was sitting here about 15 minutes ago thinking how cold I was feeling .. I thought I must be coming down with this flippin' virus that's buzzing round the village .. so went into the kitchen to make a nice hot cup of coffee to warm myself up up a bit .. while waiting for the kettle I decided I'd better get an extra fleece and put on ..

.. as I went past the central heating thermostat in the hallway I glanced at it .. as you do .. and was brought to an abrupt standstill by seeing it was only 11 degrees .. YIKES .. ohhh nooo .. my heating must have broken .. so I fiddled with the electronic gizmo thingy whatjamacall it to see if I could 'force' it to come on .. when the realisation dawned on me that I hadn't even turned on the heating this morning .. 

I am now glad to say that with one extra fleece, one cup of coffee and 15 minutes of heating .. I am feeling nice and warm and cosy again .. fancy flippin' forgetting my heating ..

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 ..

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.

Colin

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 ..

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?

My very own wobbleator has arrived this very morning ..  .. that was quite quick delivery for once

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

 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

 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 ..

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 instructions

Colin

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

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 ..

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 ...

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

I love the fact that you tried it

Quality!

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 ...

 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 ..