Hidden Disabilities Time To Fight Back

tiddly_widdly

whooshO, I know what you mean I have Ankylosing Spondialytis and also Osteoarthritis. I need a knee replacement. I am 40. I often walk around outside with a walking stick whether I am having a good or bad day. This is not just for my benefit although I can never walk far before hobbling and never without pain. It is often for the benefit of other people. It makes them a little more considerate about not pushing past and unbalancing me. If I am having a good day I feel guilty for walking 'normally' away from my car.

We shouldnt have to feel like this. We have enough problems without adding ignorant sods to it.

lilykim

My 21 year old daughter has ME (chronic fatigue syndrome) and has had a diagnosis of IBS (she has a very nervous bowel lining). She gets very fatigued and people just dont understand say, when she doesnt give up her seat on a bus. Unless you know her you would never think she is ill. Its very hard when disability is invisible. She's had remarks made because she doesnt work at the moment. I tell her to ignore people who are ignorant and dont think before they speak. I have learnt not to judge by appearances.

luxor4t

woosh0 wrote: »

On several occasions when I have displayed my blue badge to park I have received the odd sarcastic comment. eg. She's too young to be disabled..." snipped

My 'lovely' MiL says this (usually very loudly). DH has tried to stop her, but in vain.
It is just as well that I am unable to make a fist ...:o

tiannaleigh

Im sick of everywere I turn,people not understanding my daughters autism,I wrote an earlier thread about her not being allowed in the chemist anymore as she is so loud,but I struggle with her in all shops,so upto now I could only relax in my own home.I cant even do that anymore though as she often awakes many times through the night,shouting mummy and all sorts of babble, and can take hours to settle her back down,My next door neighbour has took to screaming "shut the f*** up" to her through the wall.There is actually nothing I can do,I cant gag her, and I try my best to keep her quite,but he even shouted it when I had took her down stairs early this morning as he must have been still able to hear her.I love looking after my daughter but I really dont know what it is im supposed to be doing to avoid all this conflict each an every day, if I am out ,or at home I cant get away from it

wogglemaker

azjh77 wrote: »

I am not registered disabled, but as an asthmatic I often have trouble walking to the end of the road. I have often had to sit in the car while the family have gone shopping as I haven't had the 'puff' to walk around the shops... On a good day I can blow 180 on my peak flow and make it all the way to the shopping centre. Today I'm going to have trouble just walking up the stairs to bed.
Asthma is another of the well unrated hidden illnesses - is it classed as a disability? It sure feels like one when I'm hooked up to my nebuliser! ........................................Pity party over, I sound like a right miserable git now don't I!

Hi from another miserable old ***, I'm just about to try going down the disabled route as I have bronchial asthma, just finished my third hospital stay in 5 months, they now class it as COPD with constant chest infections (have not been well enough to go back to work), now I'm steroid induced diabetic, with blood sugars varying between 4.6 and 26, so bloated with fluid retention and steroid munchies I look like Mrs blobby, and sleep apnia means I look like Darth Vader each night attached to a cpap machine.

Asthma sure is a disability from where I'm sat at my PC with a nebuliser stuck out my mouth puffing on the flixotide.

I've found that because I do not have a post it note on my forehead saying I have breathing problems, customers at work heard the "huff" and shortness of breath then complained I was being rude. Also no one understood that the cough of a bronchial asthmatic could not be controlled, it was full on there. And do not start me on the 'funnies' about weight lifters when you tell your boss you are weaning off cocortisoid steroids, and managers who cannot read the difference between exaserbated and emphysemae on a sick note.[FONT=Verdana,sans-serif]

there is also the effect emotion and worry can have on breathing, I had my first serious attack of hyperventilation today and it was so frightening struggling to even breath a nebuliser[/FONT]

nanokitten

I know how you feel wogglemaker.
Hyperventilating is terrifying. I find that trying not to think about breathing helps (not easy I know) as it helps to stop the cyle of panic. I listen to the harry potter tapes as its soothing and distracting.
Also is it possible to connect your nebuliser to the mask of your ventillator (there are normally a couple of ports in the mask) as the extra puff might really help - it might be worth asking the respiratory nurse / technition if this is possible. (I'm sure I had this arrangement in hospital but its all a bit hazy).

wogglemaker

Nanokitten,
I'm another one who finds music very soothing. I'd be lost without my mp3 player and 'healing' music, especialy when in hospital, earphones help create my own little world. Some meditation exercises are the next little experiament for me..

fortunately I'm not on a ventilator yet, & the need for oxygen is only when ill enough to be in hospital. I think hubby needs some lessons on how to talk me back down into normal breathing, - that will be as interesting as trying to get my daughter to pack up smoking as even the smell of smoke on her cloaths tightens my chest.

nanokitten

wogglemaker wrote: »

and sleep apnia means I look like Darth Vader each night attached to a cpap machine.

Wogglemaker, I meant your cpap machine (a form of noninvasive ventilation). I have VPAP (variable pressure which is very similar, just has a lower pressure on the outbreath).
The positive pressure on the inbreath helps to increase how much air you take in and on the out breath improves gas exchange (removal of CO2 as well as uptake of oxygen). I would have thought that this would help massively with symptoms of breathlessless (I often use my machine when I feel out of breath in the day and its blessed relief). Obviously you need to get your Meds into your system to open your airways, which is why I thought you could combine the two.

Savvy_Sue

tiannaleigh wrote: »

Im sick of everywere I turn,people not understanding my daughters autism,I wrote an earlier thread about her not being allowed in the chemist anymore as she is so loud,but I struggle with her in all shops,so upto now I could only relax in my own home.I cant even do that anymore though as she often awakes many times through the night,shouting mummy and all sorts of babble, and can take hours to settle her back down,My next door neighbour has took to screaming "shut the f*** up" to her through the wall.There is actually nothing I can do,I cant gag her, and I try my best to keep her quite,but he even shouted it when I had took her down stairs early this morning as he must have been still able to hear her.I love looking after my daughter but I really dont know what it is im supposed to be doing to avoid all this conflict each an every day, if I am out ,or at home I cant get away from it

do you own your own home, or are either of you in a council / rented property? If the latter, it may be worth talking to the landlord to check whether the levels of sound carrying between the two properties can be reduced.

wogglemaker

Sorry about my confusion, I'm on a very steep learnining curve, been using the cpap 4 weeks, and needed a nebuliser at home for just 3 months.

Thank you so much for the suggestion of using the cpap during the day, I'm willing to try anything that may help. Saying that quality of sleep has greatly improved and the daytime brain fog is lifting, even with reduced sleep time in hospital.