Winter fuel payment petition

Indie_Kid

krisskross wrote: »

not been able to join in the fun this afternoon as have spent the afternoon at the hospital with my husband.

Keep forgetting that as well as the profound deafness, rheumatoid arthritis, insulin dependent diabetes, chronic lung disease and Menieres disease he is also legally blind as he has very significant ( consultant's words not mine) cataracts on both eyes.

Now tell me again that I don't know what disabled is.

Having more disabilities doesn't always make you more disabled than someone with a disability. Put it this way, I have a friends whose brother has one disability. He's blind, can't talk and have severe behavioural problems. When he's older (30s, I think she said) he'll also go deaf. She has the same diagnosis; but is just blind.

Yet, my dad has tendonitis in his shoulder and ankle and has epilepsy. Are you serious implying that having several diagnosises somehow makes someone more disabled than someone with one disability?

Indie_Kid

jazabelle wrote: »

I do agree with the audio books suggestion (which I'm sure you've thought of!) - I think that's what I'd do to keep me occupied.

I have considered going down this route several times; (I'm partially sighted in both eyes and what I have makes me very tired and unable to read) but the concentration issue is putting me off.

krisskross

jazabelle wrote: »

How awful - I can't imagine not being able to read.

I do agree with the audio books suggestion (which I'm sure you've thought of!) - I think that's what I'd do to keep me occupied.

He is also profoundly deaf so he can't use the audio tapes.

Indie_Kid

Is learning braille an option?

krisskross

sh1305 wrote: »

Having more disabilities doesn't always make you more disabled than someone with a disability. Put it this way, I have a friends whose brother has one disability. He's blind, can't talk and have severe behavioural problems. When he's older (30s, I think she said) he'll also go deaf. She has the same diagnosis; but is just blind.

Yet, my dad has tendonitis in his shoulder and ankle and has epilepsy. Are you serious implying that having several diagnosises somehow makes someone more disabled than someone with one disability?

Well yes I am actually. I think for instance I could cope with being blind or deaf but both together is extremely isolating. Constant pain is exhausting especially if you are not allowed painkillers because they are causing gastro-intestinal bleeding and all the opiates make him confused (a very common side effect in the older person).

Diabetes is just annoying, but as he has no manual dexterity because of the RA it makes it hard for him to administer his own injections.

Less than 40% lung function means he gets out of breath extremely quickly and I actually can't walk as slowly as he does else I'd fall over!

He is obviously disabled in many ways, affecting so many of his functions of daily life. i am sure he would like to just have to cope with one thing.

krisskross

sh1305 wrote: »

Yet, my dad has tendonitis in his shoulder and ankle and has epilepsy. Are you serious implying that having several diagnosises somehow makes someone more disabled than someone with one disability?

We have very different ideas on disability.

Tendonitis I wouldn't think is much worse than my recurrent frozen shoulder and epilepsy is often very well controlled to the extent that sufferers are able to resume driving.

If your father has seizures everyday then yes I would consider he is disabled. But it really isn't the diagnosis is it? It is the way it affects someone's life.

Indie_Kid

krisskross wrote: »

We have very different ideas on disability.

Tendonitis I wouldn't think is much worse than my recurrent frozen shoulder

Are you able to raise your arm above your head? My dad was unable to do that for 2 months and still has trouble with it.

jazabelle

krisskross wrote: »

He is also profoundly deaf so he can't use the audio tapes.

So sorry, I missed that.

jazabelle

krisskross wrote: »

It is the way it affects someone's life.

Exactly, so you can't really pass judgement on how bad someone's disability is without knowing any more details.

I've know people with epilepsy that have awful seizures all the time, that leave them exhausted and feeling pretty damn rubbish and in pain.

So the shoulder might be agonising, or it might only flare up on occasion - we don't know either way!

Trialia

krisskross, you're really starting to make me angry.

Want to know the details of mine? Less on the 'list' than your husband's, but the major ones have plenty of little friends.

Cognitive processing impairment, short-term memory loss and impaired memory consolidation, chronic widespread muscular-skeletal pain, weakness and tremors, chronic disabling fatigue, nausea, dizziness, impaired balance, low pain threshold and high tolerance to painkillers, chronic migraines, moderately severe asthma, repeated and frequent dislocations and subluxations of all my joints except my spine (and subluxations with that, too), severe anxiety and panic attacks, dramatic and extremely frequent swings between suicidal depression, mixed episodes and mania, hearing voices, faceblindness, skin hyperextensibility, strong myopia and worsening astigmatism, hearing impairment at certain levels of sound, allodynia, peripheral neuropathy, functional bowel disturbances, lack of alpha-delta (restorative) sleep, temporomandibular joint disorder, microfibre muscle tearing, symptomatic hypoglycaemia, cognitive overload, haptephobia, menorrhagia and dysmenorrhoea, spinal neuropathic damage, multiple chemical sensitivities, allergies and hayfever, costochondritis...

Now try to tell me a short list of diagnoses automatically makes someone less disabled than a long one. Painkillers don't even work on me, although I am allowed them.

Oh, and knowing disability second-hand does not equal knowing it first-hand, just so you know.