This is how I have to spend the majority of my time due to being so faint & weak. The more I can raise the head of the bed (I need an electrical hospital bed) the more proud I am as I know my health is better at that moment.
I want to be able to leave my bed for longer than a trip to the bathroom, without fainting or collapsing. The only way to achieve this is to improve my health which will make me less disabled.
This is a little then and now comparison, also some things you might have not considered
This is a photo of me at college from just over 5
years ago, where I was well enough to actually
attend an educational institute, most of the time;
and was walking around, not rolling around in my wheelchair... Plus playing pool in the cafeteria-
how cool is that!
It was while I was here that all my time off due to illness resulted in a meeting with the head of department.
I also began having real problems with my walking, having been active before I was confused but didn't notice the gradual decline until I noticed I was choosing the bus stops a lot closer to my destination than usual.
Now I struggle to lift my arms opening the bathroom cabinet, never mind playing pool.
I also used to enjoy going bowling, and be pretty good at it but you just cant score the same strikes using the helper ramp thing!
I really want to get well enough to at least be able to do some of the less strenuous activities I used to enjoy.
This is a photo of me when I was doing my A levels at University of Cumbria.
During my 2 years here I went from being able to 1-walk to Brampton Road Campus from town & back again, and go shopping, 2-to having to catch the bus, or needing a oift in a car to the door of the college, 3-to not being able to even make in in to class, or get out of the house & needing a nap during the day!
I also used to regularly work out but had to do less & less as my body was starting to fail me, I still managed to stay toned though. I would love to be well enough to both start my physio exercises to help stabilize my joints but also pick back up the exercises I used to do to look good!
Disabled people don't get as much for free as you might expect...
Click the Realisations/Misconceptions tab for more information
Whilst I am disappointed that my doctors did not help me sooner, & being the health experts, you would have thought they would have suggested help, but I too (& my family) didn't realise how ill & disabled I was until I couldn't make out of the classroom for lunch, and I had to literally get dropped off at the door of everywhere.
Plus the only medical advice I was getting was keep going, it will become easier. Only walking/moving didn't get easier, it became & continues to become, more & more difficult.
I have struggled more than most people for the whole of my life but I didn't realize until recently, then talked about my physical struggles when I was younger. I assumed everyone struggles to do daily tasks. It was interesting to discover similarities with other people who have the same conditions as me.
I was diagnosed with 'growing pains' in primary school & they did nothing but continue to get worse.
I used to get called Daphne because I used to stand like her, you know the red head out of the Scooby Doo cartoon?>>>>
I did that because my hips would get so sore when standing I would have to constantly shift my weight from one leg to another. In secondary school I was taking paracetamol & ibuprofen, my GP just checked for arthritis etc (crp esr levels in my blood) said I didn't have that so I must be fine & left me to it. If my pain had been better under control my exhaustion might have been reduced. My poor experiences with the NHS & lack of knowledge about EDS & POTS in particular makes me want to help raise awareness but I can not do that well until I am less ill & disabled.
I went on a wonderful trip to London while doing my A levels. While there a friend took a photo of my hand as it was shaking. At the time I though it was because I had reduced the amount I worked out but now I know it was by muscles working so hard to hold themselves together.
I think had I not done exercise my symptoms may have been worse earlier.
My orthostatic intolerance has bothered me since a teenager, I assumed everyone at school struggled to stay conscious when they had to stand in assembly!
I have always been active, my parents encouraged it & living in the countryside there were always trees to climb! But I always remember episodes of extreme fatigue, I just thought everyone else experienced it too.
I remember being too utterly exhausted to go and play in the dens at the bottom of my school field, when I was about 8/9, so I looked after the little reception children instead, its s good thing I enjoy looking after people! :)
Now I know that not everyone else struggles, and now I have some diagnosis I don't feel so guilty for taking a break. I don't know what level of 'wellness' to expect to get back to, but any energy is better than my current level of 1%!
I am now basically bed bound, I can not sit for longer that 10 minutes with my legs down. I spend most of my time sitting up in bed or lying down when I feel particularly dizzy &/or ill.
Not being able to get out the house since 2013 & it has been very isolating, but to be honest as I feel so exhausted the prospect doesn't seem as fun as it might for more well people... It is more the small things that I find frustrating, not being able to go into a card shop to buy a birthday card, or not being able to go out & buy an ice cream on a hot day... actually I like my ice-creams all year round!
I really want to be able to go out again, just on little trips out. I am glad my family keep me company & I have a few friends who come to visit me for a short amount of time.
I imagine when I do get out again I wont recognize parts of my local city Carlisle, people have been telling me lots of shops have closed, however there is a new Paper Chase which I would like to look around!
Thanks if you have read all the way down to the bottom here, you deserve a reward cupcake :)