I use a wheelchair AMA I have ME/Chronic Fatigue Syndrome AMA

[SimplySteve]

Two things you can grill me on :)

[WhatNow40]

Do you worry about imposter syndrome? When someone sees you moving without a wheelchair one day but then using the wheelchair the next day. Do you worry they think you're faking it? And how do you deal with anyone who calls you out on it?

[JoggerBottom]

Hi,

I always feel awful when using a disabled toilet to change my baby (always where they decide to put the baby changer) and usually rush as I don't want to take the place of a disabled person who may need to use the facility right there and then.

Do baby change facilities being placed in the disabled toilets ever inconvenience you?

[SimplySteve]

Imposter syndrome? I have to use the wheelchair for any distance over 20 feet or so. The biggest issue I have is the older generation calling me out for using a disabled parking bay (I have a blue badge). I hate people abusing these disabled bays though, they don't realise it can be the difference between going in the shop/service or having to just go home.

Have had all ages call me out on being in a chair because "you're young". Not joking either. I'm early 40s.

[newestbridearound]

How old were you when you developed the illness? Can you work? Has it gotten any better/worse with time? Do you have DC?

[SimplySteve]

Baby change facilities being placed in a disabled toilet have inconvenienced me, (tmi) I have urinary incontinence and bowel urgency with sometimes bloody, mucus diarrhoea. If I cannot access the facility then I'm sure you can work out what can happen!

Although I don't bear any grudge or ill feeling to the baby's parents, the changing facilities have to be placed somewhere and I don't see them being split off into their own facility anytime soon.

[SimplySteve]

I was 30. It developed into its present state (persistent muscle/joint pain, constant fatigue, inability to sleep, travelling to the docs will cause me to sleep for a day and a half). I'm bed bound, completely unable to work, and feel absolutely useless. I have a DS and a DD, DS older and was spared watching me become afflicted. DD saw the condition hit and develop during high school, I'd do anything to have changed that, it's one of my major life regrets. Going back to feeling useless, this in part is responsible for my self harming behaviour (that I've detailed in especially the "Stately Homes" threads).

[DaffodilPower]

How did you get your diagnosis?

I was told at 14 I had CFS (mum was also with me), but it has been denied since and my current GP refuses to acknowledge it (I'm 34 now..!!)

[newestbridearound]

OP. Also bedbound, also with ME! It’s shit. And something so far removed from most people’s experiences it’s hard to for them to fathom, especially at the bottom of the scale if you need to be fed/catheterised/rolled over.

Have you had many people disbelieve the condition? Or just think you are lazy etc? Are your family supportive?

[BonnesVacances]

Do you still have hope that you'll get better one day, or are you resigned to this being "it"?

[SimplySteve]

GP and a neurologist dx'ed me, although I had one GP laugh in my face "we all get tired sometimes", neurologist was a second opinion after the first recommended CBT and Graded Exercise Therapy (both now found to exacerbate the condition and should not be recommended).

I take a massive amount of drugs each month.

People disbelieving are found around every corner, it's literally seen as a joke condition. A couple years in I realised I didn't need to tell people why I was in a wheelchair, but during my 30+ visits to A&E this past 18 months I've had some nurses and doctors have a disbelieving look on their faces to begin, then when they see how much I actually struggle their attitude changes.

My extended family think I'm taking the piss for disability money. My DP has been my rock, I'd be utterly lost without her. She gets frustrated sometimes, like I've been awake three consecutive nights/days this week and she wanted me to take her somewhere. I'm totally exhausted but just cannot sleep.

The A&E visits aren't related to the ME, incidentally.

[almutasakieun]

One of my greatest fears is being wheelchair bound. How has it affected your mental health, your confidence as a woman, your self image etc.?

[JoggerBottom]

Thanks for answering simply.

[SimplySteve]

Truthfully Bonnes, evidence has shown after this long with my severity the prognosis isn't good. It's tough mentally resigning my Quality of Life to be like this.

[newestbridearound]

Can I ask what drugs you take? I really need to see a GP and start asking for some things to help my pain because this latest relapse is absolutely killing me!

[SimplySteve]

Being in a wheelchair has caused my self esteem, self worth, self image have all taken a massive nose dive. I cannot explain how helpless one feels, how reliant on another person, and the nosedive ones QoL takes. It's very sobering. It's had a truly substantial effect on my mental health, and has been one of the components causing me to develop self-harm tendencies (have explained the full story in "Stately Homes" threads, GP is aware of this behaviour too).

It's not affected my confidence as a woman, because I'm not one! (I hoped my username would've made my sex clear). As a man it's extremely emasculating; sex, for example, is something I've been able to do in an extended fashion once in the past three months (and we've always been sexually active). Nowadays I make sure my DP is totally satisfied.

[SimplySteve]

Drugs, I take a load for various conditions, these are the ones directly for the ME.

Tramadol
Pregabalin
Naproxen
Chlorphenamine
Omeprazole
Mebeverine
Paracetamol

[Sallygoroundthemoon]

Given you've been to a&e 30 times in the last year, you must have other very serious health conditions too. How do they affect your wheelchair use or do you need that solely because of the ME? Have the other conditions had an impact on the ME and what are they?

[newestbridearound]

I always think it’s absurd that anyone would think people with ME are lazy spongers just pretending for the benefits. For one things like PIP are virtually impossible to get and hardly make you a millionaire And for another most people with the condition led extremely full on active lives before and are then forced to basically live a half life or even less. It actually makes me really cross, but I never have the energy to argue it!

Sounds like your DP is lovely. That makes such a difference. Sorry to hear about your self harm too (been there). Do you think much about your pre-illness life? In good spells I don’t, in relapses like at the moment I do a lot. The grief is sometimes overwhelming. So much given up it often feels horrific.

[BonnesVacances]

As a man with ME, how do you feel about the fact that ME is largely dismissed by GPs as female hysteria?

Have you seen Unrest?

(Forgot to mention before that DD(17) has ME btw.)

[SimplySteve]

Haven't forgotten you, spent since 1am in A&E/surgical ward, and just got home. Lots of snow here, advantage of living high up in the countryside. Good few inches :) Will answer the questions when I wake on Sat.

[SimplySteve]

Given you've been to a&e 30 times in the last year, you must have other very serious health conditions too. How do they affect your wheelchair use or do you need that solely because of the ME? Have the other conditions had an impact on the ME and what are they?

Yeah. I've Myasthenia Gravis which likely was dormant for years and waiting for a consultant to sign off on Post Cholecystectomy Syndrome/Biliary Colic.

The wheelchair was purchased for the ME. To give you an idea of the fatigue, it takes roughly 45 minutes to go to the docs including travelling. I will sleep for at least 12 hours afterwards, that's with someone pushing me.

I've also a gaggle of mental health issues - anxiety, depression, PTSD and cPTSD.

I always think it’s absurd that anyone would think people with ME are lazy spongers just pretending for the benefits. For one things like PIP are virtually impossible to get.

It's compounded by a couple of things. Being classified as a psychological condition for so long, and being a diagnosis of exclusion (although I've never been tested for Lyme or Lupus and show characteristics of both).

I do receive PIP. I was refused DLA and won convincingly at appeal. Transitioned to PIP a year later and they are currently doing my three year review.

It doesn't help when twats like Ricky Gervais stand on a stage and make a joke of ME. The fatigue is so debilitating and sleep doesn't relieve it. Feel like a zombie a lot of the time.

Sounds like your DP is lovely. That makes such a difference. Sorry to hear about your self harm too (been there). Do you think much about your pre-illness life? In good spells I don’t, in relapses like at the moment I do a lot. The grief is sometimes overwhelming. So much given up it often feels horrific.

She is an absolute star. She has very severe issues herself, including being registered blind. Oh my god, do I think about it, it's so frustrating. Even when I perform a minor action things start stacking up. It's not fun being in persistent, chronic, pain with no energy. Sorry to hear about your SH too

• As a man with ME, how do you feel about the fact that ME is largely dismissed by GPs as female hysteria?
  
  Have you seen Unrest?*
  
  Angry. Fucked off, Astounded. Saddened. Emotional. Yet another persecution of women. Bullshit disabilism is what it is.
  
  Although, as a man, I've encountered much of the same vitriol. One doctor told me that "everybody gets tired sometimes". Another "you can not possibly be in so much pain".
  
  I have seen Unrest, yes. As a comparison to Jen, I'm a little worse.
  
  Thanks for your posts .