Here I will give you some insight into how much I was able to do my past, including examples of my previous levels of functioning & my decline in health.
This is how I have to spend every day after I have had my evening meal. Since being on Pyridostigmine I no longer faint as often but still I have to lie down to prevent fainting. The only way to achieve being upright more often 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
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 struggled 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, even after I stopped growing!
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 painfull 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.
This is a photo of me at college from 2010 was 20. Although I had many 'sick days' I was well enough to actually
attend an educational institute most of the time. It was while I was studying Childcare & Education at Carlisle college in 2009/2010 that all my time off due to illness resulted in a meeting with the head of department.
This was the time I really struggled to walk the short distance from the bus stop to the college. Plus playing pool in the cafeteria-
how cool is that!
I desperately 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 in 2007/2008.
During my 2 years here I went from being able to 1-walk to Brampton Road Campus from town & back again, then continuing walking around & go shopping, 2-to having to catch the bus, or needing a lift 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 & so I fit my old clothes!
Disabled people don't get as much for free as you might expect...
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, I had to literally get dropped off at the door of everywhere, was unable to stand in the queue at the cinema.
After some negative blood tests, the only medical advice I was given was keep going, continue exercising, follow some generic physiotherapy exercises, I was told by several medical professionals my physical struggles would become easier; Only walking, sitting up & moving didn't get easier, it became & continues to become, more & more difficult!
I liken it to cooking a lobster: When the heat gets slowly turned up they don't realise they are being cooked alive until it is too late. Similarly as my health has been a slow decline for the entirety of my life, I adjusted to the new 'normal' & did not realise how much I was suffering & struggling more than most people. It was not until the metaphorical water became boiling that I realised I was incredibly unwell, very disabled & unable to carry out basic daily tasks like washing, eating or sitting in a chair.
I went on a wonderful trip to London while doing my A levels in 2008. 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, in 1998/1999 when I was about 8/9, so I looked after the little reception children instead, it is a 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%!
Thanks if you have read all the way down to the bottom here, you deserve a reward virtual cupcake :)