I am going to use this space to write down things that have dawned on me over the recent years, or I have learned since being disabled/ill.
I do receive a benefit from the government but I do not use it towards a golf club membership or tap dancing lessons!
Lying people who pretend to be ill/disabled give us honest struggling disabled folk a bad name!
I do receive the benefit PIP which half of which will go towards my wheelchair accessible vehicle and the other half goes on all the other expenses that I have that a healthy/mobile person does not have.
Contrary to popular belief me & my fellow wheelchair users do not get a car for free.
- Some people are very kind, and sometimes generous, to people they hardly know
- A lot of people are surprised that before I got so ill & disabled I was a very active child/teen who was always outside climbing trees, running around in water fights, playing in the snow & sometimes being inside playing basket ball or ice-skating :)
- You do not get a car for free if you are disabled. You have to sacrifice half your your monthly benefit to rent a car. You also have to pay an upfront fee and for any adaptions yourself.
- Some peoples disability variess day to day. So if you see someone limping a lot one day, and not so much another, don't assume they are putting it on or deceiving you, but perhaps they have a condition like mine which changes in severity day to day.
- The NHS will not give you a power chair unless you are unable to walk inside. If you only struggle to walk outside, they will only give you a manual one. (Even if you can not self propel, they would rather pay for a carer to push you everywhere, than give you a battery powered one.)
- You do not get free prescriptions just because you are disabled. There is a very short list of conditions which enable you to get free prescriptions, and it has to be that without taking the medication you would die.
- The Vue cinima has a disabled CEA card would enables me to pay for my ticket and my carer to come in free. (My sister particularly appreciates this!)
- No matter what I tell a lot of medical professionals they will not believe what you say until they see it. E.G.
"My right hip keeps subluxing, can you suggest any exercises to help?" I ask.
*I receive disbelieving glare from physiotherapist*
She goes on to 'explain' "how your joint works means it will automatically just suck it in preventing it from moving"
*tries to explain it moves out and causes pain often*
"lie down on the couch and let me see" she asks
*I do a leg raise with physios hand on my hip*
"oh my, it is moving a lot isn't it!" in a shocked voice.
- People assume that because I am physically disabled and in a wheelchair, that I must be mentally disabled too. The amount of people behind desks that ignore me and talk to my mum/sister/ anyone but me, even if I address them when we approach, is ridiculous! My mum blanks them and I continue to talk at them until they get the idea -.-'
- A lot of people think that all wheelchair users can not move their legs. The amount of people I shock when I can move my legs- they must think have seen a miracle before their very eyes! :O The media doesn't help.
- There are some secret disabled entrances to places, that I was unaware of before.
- A lot of people are polite and hold open doors for me, which is extremely helpful.
- People, often official form filling in people, do not understand how chronic conditions can vary in severity day to day. Sometimes I am able to walk from my bedroom to the kitchen, sometimes I have to use a crutch, sometimes I have to use my powerchair- it depends! I have to just go with majority percentages.
- A lot of shops are inaccessible by wheelchairs, and most have an annoying bump on their thresh.
- Many shops have stands/items at the ends of the isles, meaning it is impossible for me to get down, in some shops I can only see some of the stock- only on the perimiter! Others have so many things stacked by the till that I can barly reach the counter to pay!
- It is nice to talk to other people who have EDS, but it can also be sad to hear that they have had to go through the same struggles as me. In the UK a lot of them have had to pay privatly to get treatment and/or a diagnosis.
- People don't understand that my cognitive function is impaired (my high IQ is not running on maximum... maybe I need more dilithium crystals!) Some people suggest I do an online course, but I get a lot of "brain fog" caused by EDS, as well as exhaustion and poor concentration, so I am not mentally up to it, never mind physically. (Also if I was to do a course, I would go back to university as I enjoy socalising, and my first/ only degree year I did have, was thoroughly enjoyable and I met some funny, lovely, people.)
- Some people do not move out of my way, even when I loudly say excuse me! Interestingly I have found teenagers to be the ones most likely to move, and OAP's :)
- The wheelchair services are rubbish, they do not know anything about comfort or what causes stress on specific joints, or anything. I had to be the one to suggest a wedge shaped custion as my hips were a lot lower than my knees in my wheelchair, and I was getting a lot of hip pain; and when it came it was wedge shaped the wrong way, so I have to put it on backwards meaning it does not fit properly. The only thing they seemed to know about what their budget will allow them to prescribe, or not suscribe as it usually it.
- People who work at a till often offer to pack my bags for me :)
- Netflix often have just the first couple of seasons of programmes, evern though there have been like 6 *cough Castle cough*
- If I do feel up to a lot of shopping, I have no where to put it! I have a wheelchair bag, but after a couple of shops it gets full, I havent found a solution yet, apart from whoever I'm with to carry bags for me... a trailor seems the only option!
- I should have had a wheelchair years ago, but it is the NHS's policy to wait for the patient to ask for one, rather than suggesting it might be helpful. Even though I was telling all of my doctors that I was struggling to walk and had to be dropped off at the door to everywhere i.e. doctors, cafe, cinima, etc
- A lot of people in hospital waiting rooms are friendly and nice, you can have pleasant conversations with them, which pass the time nicely; especially if the doctor is running late like usual!
- Most doctors haven't heard of EDS, and if they have, they don't understand how much it can effect you. Nearly every reference dosen't have a comprehensive list of symptoms.
- The government would rather pay for a carer to help me do things, rather than pay for equipment to enable me to do it by myself.
- The NHS always try the cheapest option first, even if it isn't the most suitable.
- Medical people assume my body is going to respond like a healthy persons, not realizing that it doesn't!
- I spend more than I should on online shopping, as it one of the few joys I have left.
- My family is very understanding and supportive compared to a lot of other people I talk to online who have EDS. I am lucky :)
- I am glad I enjoy gaming (playstation etc) as it is one of the few things I used to do, which I can still do, now:)
- My podgy knees look less podgy when I a sitting down (as I noticed in the reflection of a shopfront), so I can wear shorts or skirts in my wheelchair and my knees look positively boney!:D
- Camden town is not wheelchair friendly! Which upsets an avid disabled shopper like myself.
- I actually put on muscle relatively quickly, it's just that I have to regularly work out to keep ANY muscle at all.
- Now I have got the time (& are not up to doing anything else) I can complete some games I have never got round to finishing... I don't care that Age of Mythology's graphics are poor by todays standards, I still like it. ^^,
- A lot of London is either inaccessible for wheelchair users, or they make it more of an ordeal than it needs to be. (I'm looking at you British museum making me ask Mum to go off & find a member of staff to take us behind the scenes and throught the kitchen to the cafe. Then getting her to run down the steps to close the lifts gate so I could call it up to actually use it!)
- A lot of randomers in London are very nice and helpful, the staff at the hotel included :)
It is nice to suggest conservative/alternative treatment but it is frustrating when you assume I haven't tried it, that is will completely cure me, or that it will enable me to not be on any medication.
I am Tall.
Being tall and narrow (6' 2" and lanky- with a 37" inside leg and size 11 feet!)and being disabled makes finding aids/everything to fit a lot harder (as does being small I assume).
Everything is designed for people shorter than me, and then a larger version is either unavailable, or I have to pay more to get something that is custom made so it fits me and is actually comfortable!
I have tried to use things that are for the average sized person but it has just made my problems worse, as I have EDS my body does not stay inline very well, so something that does not fit perfectly, or make my body balanced, means that my whole body is thrown off and is in more pain, and is... deformed.
(See how the How I am affected tab to find out more about how my right leg is now misshapen.)
Some people, especially on social media, have been negative about asking for money. I had (& still do to an extent) have a problem asking for money, especially as there is so much suffering in the world, however I will continue to do so because:
- Money for specalist provate medial treatment is the ONLY way my health can improve.
- When I am better I can give back to the world and help other people.
- It is OPTIONAL no one is holding a gun to anyones head, people help if they want to, if you decide not to I will not complain.
- I am not saying I deserve money more than others, in fact I encourage others who are truely suffering and only money can help to do the same. Spend their time & energy arranging events and approaching people for money; everyone deserves good health.
- Kind people have reminded me that a lot of people have no problem with my family or I asking for help, and some people actually anjoy helping others.