ME/CFS is a real illness

[garlicbutter]

Oh, I just need to sound off after things getting a bit heated on another thread.

Fibromyalgia included also. I don't get huge amounts of pain, but do spend huge amounts of time resting so that probably helps.

I'm pissed off that my occupational therapy turned out to be "Learning How To Be Ill" and that I'm going to have to appeal (again) against my DLA refusal.

I'm pissed off that I spend so much time on Mumsnet because I can put it down every 20 minutes and change my activity/position. Also that it's practically my only contact with the outside world.

I'm just generally pissed off

Fellow knackered whingers, feel free to rant!

I'll be back in 20 minutes.

[garlicbutter]

Isn't that FRUSTRATING???!!! I feel like one of those annoying women your parents used to know, always going "The doctors don't know what's wrong with me! I'm so exciting! ") It's also a bit scary; we're so used to the idea doctors go "Oh, yes, you've got XYZ, take these and come back in a fortnight." Kind of feels wrong to have non-specific ailments.

I come over all allergic when I'm run down. So nice to drag yourself to the shops with scabby rashes on your face

I'm definitely going to follow up Hebie's scooter advice! I could go to Morrison's (a mile away)! And get less run-down, hopefully.

[nannipigg]

I hate being stared at and asked if I've had lip surgery etc collagen implants....people can be so cruel sometimes, especially when you look like a freak covered in lumps and bumps.
I have allergies to hot and cold, vibration and touch sometimes, even if clothing is rubbing....sick of it!
And taking all these antihistamines just makes you even more tired and irritable too!
Enough now....moan over x

[garlicbutter]

Excellent moan Hope it helped.

[LackaDAISYcal]

gb and nannipig, skin rashes are a common lupus or connective tissue disorder symptom. Have you both had blood tests for ANA and RNP? The vitD and low salycilate diet are often used in lupus as well...

Leonie, sounds pretty grim :( Do you take anything for your thyroid issues?

I've had the advice to exercise more for the fibro symptoms, but conversely I can't overdo it because of the lupus etc. It's a fine line, and when I feel well I do tend to overdo things...like trying to do the 30 day shred

[garlicbutter]

Oh, DAISY, you didn't try the Shred! Twit :)

[Hebiegebies]

Food allergies and sensitivities count for a lot.

Sadly I'm allergic to garlic and cheeses and sensitive to lactose, red wine. Also too much sugar makes me tired

GB, I don't think I'd share your starter at pizza hut!

[SerialKipper]

ShopMobility are beyond wonderful and transformed my life.

I was doing the "I'm not disabled, just a bit ill" thing for far too long, and had barely left the house in months when I called them in desperation (needed to get to a bank in the pedestrian area where the taxi couldn't go). I expected to have to prove myself somehow and be turned down, as with so many things.

They couldn't have been more welcoming. They wanted my address and I think that was it. My branch have manual wheelchairs, powerchairs and scooters. They lend by the hour (£1!), by the day or longer term.

I've now bought my own wheelchair after playing with theirs, and I still rent their scooters/powerchairs when the need arises.

to anyone here who has ever done anything to support ShopMobility. You are stars.

[garlicbutter]

I ought to namechange to garlicmarge, Hebie, as doctor told me to give up dairy. I don't half miss butter & cheeses - and am anticipating instructions to go gluten-free as well. There'll be nothing left to eat!

Am very grateful for Aldi's fabulous dark chocolate: dairy-free :)

[nannipigg]

I've had an ANA test I think and it was negative, everything shows up okay in my bloods except my IGA or something was elavated...liver function test I think was also raised slightly and my liver is supposedly very fatty too...(may be due to gall bladder removal)

I have approached my Specialists with the questions of can it be Lupus? CFS? or any other immune system disorder.....but they just say no we doubt it!

[garlicbutter]

Dear lord, Leonie, they binned you for needing too much medical help??

... here comes the future ... :(

[hellhasnofury]

Can anyone help me? I am trying to support a colleague through a 'case conference', she has been diagnosed with ME and I suspect the head is trying to get rid of her. I need to deepen my understanding of the condition but want to research it on good websites rather than through the hit and miss of Google.

[nannipigg]

At my worst with my reactions etc I was struggling on my todd, cos Hubby had moved away for work, with a 1 year old and waiting for gall bladder surgery. It's no fun....and no one at the Docs wanted to know that I was struggling to look after DD when I needed so much rest...

I am waiting for that talk with my docs too!
I was accused of wasting docs time a few months ago, cos I was constantly ill and in there. Now I have my new Consultant I don't bother, they are a waste of space really :-(

[Solo]

Oh let me join you on this thread! I too have had raised eyebrows and people telling me I should be 'over it by now!!' I'd love to 'be over it' I'd love my old life back ~ oh yes!! but 12 years on, I still fight every single day. Some days worse than others, but it never actually goes.
Lucky for me, my GP is very good, but there is another GP at the practice that told me 'I don't hold with that, I don't believe in it'

As for ATOS. Every time I've had to go to them, they make me feel very small, very beholden to them and like they hold my life in their hands.

[nannipigg]

I was told cos I can sleep okay sometimes I haven't got ME or CFS????

[SerialKipper]

Who by, the milkman?! Bloody hell, that's shit nannipig.

[nannipigg]

An ME specialist nurse???
I've luckily been handed over to a different Specialist that deals with both Immunology and ME .....STILL GOT NO ACTUAL DIAGNOSIS BUT AT LEAST HE ISN'T THINKING ABOUT DISCHARGING ME, like the last one!lol

[ReallyTired]

LeonieDelt I am sorry to hear that you were kicked off a doctor's list for needing too much help. Had they offered you a secondary level referal for your symtoms. I really hope you made a formal complaint.

[LackaDAISYcal]

Leonie, I have livedo on my upper arms and a patch on my stomach. I would definately recognise it from a photo as it's been the bane of my life for almost 10 years now. Mine are generally red and blotchy, but purple when cold. And it looks like perma-sunburn but is cold to the touch. I hate it :( especially as from May to October I fend off at least six comments daily about how I've "caught the sun"
Sun sensitivity is another typical loopy symptom and it can make other symptoms, like fatigue, much worse. I used to be such a sun worshipper too. These days I hide indoors or in the shade under a very large hat.

[LackaDAISYcal]

I'm also at you being asked to leave your GP surgery Leonie. My GP is brilliant and in fact it was him who was determined to get to the bottom of my symptoms.

Right, herbal tea and an early night beckon...rock and roll

[Nilgiri]

at the behaviour of your GP, Leonie. I'm so sorry you're going through this.