Hidden Disabilities Time To Fight Back

jay11_2

Cant say much to help hun, but don't want to read and run. I can only offer ((((hugs)))), I'm sure someone will be along tomorrow who has some similar experiences.

I don't know if it would help, but most people on here are really friendly and happy to offer a listening ear if you wanted to/could post more often. The 'daily thread' and 'night owls thread' are quite good I think.

Hope things get better soon, jay xx

nanokitten

After all of this debate maybe we should be asking ourselves the same questions about out attitudes: Poppycat I guess by non-disabled you mean people who don't dispaly a blue badge???

I wonder how many of us have 'glared at someone young and healthy looking pulling into a disabled spot'. I have a hidden disability which means I can look absolutly fine on a good day (often whilst feeling like death warmed up). I used to have a PA who would give people evils for not looking poorly, and the next second glare at people who gave me evils for not looking poorly! I was forever telling her off.

I guess all we can do is try to be as open minded as possible, and to educate folk when we get the chance.

Having said that I think there are times when my famous "Are you a medical doctor? No? Well if not I'd keep my ill informed opinions to myself then because what you are doing might be considered a hate crime" speech is the only way forward.

nanokitten

Mandy2008, just read your post. You are certainly not alone and I'm sure there are alot of us here who know what you are going through.
I guess (trying to be practical) you will somehow have to find a way of coming to terms with the body you are stuck with, the only thing that is in your power to change is the way you think about things and deal with it.

Have you ever thought of trying to get referred to a clinical health psychologist? I'd never heard of one when I got referred by my GP but she was absolutly ace.
The idea is to find ways to adjust to / manage / deal with having chronic health problems and was much more flexible than regular counciling etc. They can use a range to techniques to help you to cope better with your condition (problem solving, cbt, talking therapies, pain management techniques, developing strategies...). It can be much more practical and forward looking than counciling, ie what do you want to be able to do? what are you gonna do about it? then finding a way.
It might help you to raise your confidence about going out, find ways of coping wth the tinitus, deal with the anger, improve your self image and find stratigies for getting yourself back out there.

Also if you cant get a GP referral for therapy, there are web based programs which are based on CBT (which can help with anxiety disorders). some GPs subscribe to them, this might be an option if you have a problem leaving the house and might get you started.
Good luck

mandy2008

thanks for the advise you have given me nanokitten its very thoughtful, one for a start is my physical styate of health at the time being, im learning about the disease itself and what triggers it of to its worse, stress is a main factor and iknow ineed tolower my stress levels, this will not only make my health better but my confidance also.
at the time being small chores like cooking seems to be a big problem and im terrified to let anyone in the kitchen withme let alone lift pots of hot water incase i happen to have an attack, i need to cook daily for the children obviously and thinking about daily activities while there at school has a severe impact on my physical health, its driving me mad as simple chores i once took for granted are becoming a huge issue and i dont like to say to anyone i try and get on with things, i find myself crawling onmy hands and knees trying to go from one room to the next so i dont end up having dizzy spells and falling over, im so sick of hurting myself and not getting to a dr to get help,
as soon as i wake in amorning turning around causes me to be sick(like morning sickness) and that depresses me straight away, i just need to be normal again.
on good days i wear myself out and do everything to catch up on but these good days are not comming to often and its driving me insane,
not only is the kids suffering seeing there mum like this and missing out on so much in life its causing me to get depressed as im depriving them there childhood, luckily my ex the kids dad takes them every fortnight and he makes up to them what i cant achieve.
clinical health psychologist? ive never heard of it, noww u mentioned it i wil look into it as ur right councelling seems to leave me frustrated.
im sure the pysiciatrist thinks im insane, or depressed as when i talk about the condition i only end up in tears.
all i want to do is get up in am orning and freely enjoy taking my children out doors.
ive so many appointments to see differant people about numerous things regarding my health i seem tobe going around in circles and getting no where, 2 yrs its taken me to finally get it across to a cpn what is actually the matter withme as i would not accept it before now, its only lately that its become severe and taking a traumatic effect in my lifestyle,
im was such a confident person people cannot understand why im like how iam, and im sick of repeating myself, even to the stage of seeing an ent

mandy2008

surgeon ive requested i see the same specialist at all times so im nothaving to go over and over whats the matter with my ears (as the drs dont take the time to read through ur notes) im getting help for anxiety throught a cpn im just waiting on a care co ordinator next what ever that is for help next, this is what i mean there is so many issues inmy health i dont know whos who anymore. its all so confusiong and all the time ive a noise continously going on in my head thro the tinitus i feel like just giving up hope on anything anymore,
im on medication for various reasons, all i want is tobe NORMAL so my babies dont see me like this everytime they walk through the door, im just glad there at an age where they can help rather than me running after them. there 14 13 and 10 and the 2 eldest are remarkable helpful and do so much for me, ithink i feel so guilty for not being a proper mum

mouseymousey99

Hi Mandy - Just reading through your posts I wonder if it may help you to write some notes before you go to see the next person? I've written my own notes as I know what you mean about them reading up beforehand.
I use it to remind me of things I want to ask & offer a copy to whomever I'm talking to.

tiannaleigh

pipkin71 wrote: »

That's awful tianna.

Does your pharmacist run a delivery service?

It's not right that you shouldn't be able to go in, but perhaps if someone from there was willing to go to you instead

I don't know if he can insist you don't take your daughter. Is there another pharmacist you can use?

Pipkin xxxx

Thanks for all your supportive coments,It is the only chemist within walking distance to my self,but I will be looking into getting it delivered.I am going to look into writing to weldricks head office or something like that,Im not a person whom usually complains but I really feel they should be taught they can not treat people with disabilities like this,

nanokitten

Mandy2008, if you have a cpn they may be able to help get you a referral to a clinical health psychologist.
Also I found this site where you can search for support groups for inner ear conditions: http://www.vestibular.org/support-groups.php most are american but there's one at the bottom of the list in nottingham and they may be able to point you in the right direction. also http://www.menieres.co.uk/

One other thing I was thinking is that if your kids are having to help you out they will probably qualify as child carers, which entitles them to a carers assesments and sometimes things such as activity days / breaks. your cpn should be able to help.

I'm not sure what your money situation is like but I think you need to be assesesd by a benefits advisor who will be able to make sure you apply for everything your entitled to. get them to help you fill in the forms (don't do it on your own), photocopy them and send them off. Again your CPN should be able to get you a referral, if not Mind or DIAL is probably your best bet, see my benefits adviors thread for links.
wishing you all the best

tiannaleigh

neiljc wrote: »

Hi tiannaleigh

whether the chemist is a large one or a small one they still have to meet the obligations of the Disability Discrimination Act (DDA). Requiring you not to bring your child in or instructing you that she is not allowed in because of a reason related to her disability is illegal and leaves them open to a case of discrimination.

In addition if when you raise this with them they then were to refuse to serve you this would also be discrimination in the form of harassment under the DDA.

This is a very slippery slope for them,
if you have any problems contact your local disability rights group who will be happy to support you in being treated fairly

If you need it just let me know and I will find the exact wording of the passages of the act they are contravening

Neil;)

Neil

Thank you so much for this information as I really do want to do something,and not just leave the matter.Its not about me just wanting to use the chemist,its wanting them to know that they are discriminating my little girl and its not exceptable, and hopefully learn to treat others better in the future

fedupconsumer

" im learning about the disease itself"

I share that sentiment entirely you learn through time what is it that effects you most and some symptoms flare up and recide over time.

""Are you a medical doctor? No? Well if not I'd keep my ill informed opinions to myself then because what you are doing might be considered a hate crime"

thats a good one ill have to use that one in future one my mother uses to stunning effect " Do you want my disability as well as my parking space" generally gets a few bemused looks tends to shut them up or " thank you for showing the root of human igonrance and discourtesy" that one has worked before.