Dear Diary...

Online blogging is like a great way of keeping a personal diary, only everyone can read it! I remember being little and religiously keeping a personal diary. Then when I was around 9 years old, I got bored of writing to myself day in day out. So on the corner of each page I drew a ink stain, gave it a pair of eyes and called it splodge, My new seceret diary friend had been invented... from then on dear diary turned to dear splodge, Untill i turned 13 and realised writing to ink stain was some what immature!
I have had one of those days today that has made me feel like writing a diary, Only i dont keep them anymore, due to the fact that when i grew into my late teens i decided actually having a life was far more exciting than writing what i ate that day on a peice of paper in a secret book! so, earlier today I ventured into a near by town with my mum, only to collapse the moment i stepped out of the car...A harsh reminder, after months of what felt like a slow recovery, that I am infact very much still under the curse of having M.E and P.O.T.S (yes haha, I am not stoned all the time, its a medical condition called postural orthastatic tachycardia syndrome). My mum rushed me to the doctors and it took me about two hours untill i wasnt completely shaking anymore and could just about stand up and walk a couple of metres. It's made me realise, how desperately I am always trying to have a normal life, and then just when i think I am achieving that, I have some kind of downfall as a harsh reminder I am still very much battleing with a illness. I am greatful it isnt life threatening, but my god it does make life alot harder! Due to my little incident today I missed a crucial hospital appointment that I have been waiting for for months! Still not the end of the world, As i can rebook it and wait another 6 months. It dawned on me while at the GP how little help I have actually recieved since being ill and how my life could be made alot easier with some simple mobility assistance. For the first time I thought about getting myself a wheelchair, for the days, like today, where I can hardly walk a few metres without collapsing. After all, If I had a wheelchair, or some form of mobility help, I would have been able to make it to my hospital appointment, I would also have then been able to get myself some food, as the cupboards are bare and my tummy is endlessly rumbleing! It would be a fantastic alternative to lying in bed day in day out untill I feel liek i can actually get up and go to the toilet without passing out! At the same time it seems like a crazy idea. I have always been a healthy fit young lady. I used to have endless energy and many ideas for living a crazy life. My god, how life can change! I am always trying to run away from the fact that I am not that person anymore, and almost fool myself into believing it would still be possible for me to go travelling on my own and work 5 full days a week. The reality is, its not! I cant even touch alcahol, caffeine or any other form of stimulant as it instantly gets my symptoms raging! I get up every morning, put on my make up and my fancy clothes and i fool everyone into believing i am a healthy young woman! My family and boyfriend are the only people who see the states I actually end up in. Collapsing randomly, make up all over my face to the point I look like a panda who has been punched repeatedly, shaking and weeping trying to keep my shit together and then after a few hours falling into a heap ready to completely zonk out for a few hours after a exausting time trying to not faint!
When I got home after my little ordeal I realised how reluctent the doctors are to help, as they know hardly anything about my illness, and how there is no one and no where to turn to for the exact help i need. I also realised I have never met anyone with p.o.t.s and probably never will unless i go out deliberatly looking for them. Its such a rare illness, you just don't know where to turn. No one understands it and the chances are you yourself, the one suffering with it, won't even understand it either due to such little medical knowledge. It really is frustrating. So, it got me thinking, its time to get the camera out and start making some mini home documentries about living with M.E and P.O.T.S. posting it on the net in order to find people who are having the same problems and not knowing where to turn. Building a online comunity where everyone who suffers with m.e and p.o.t.s can go and turn to others in the same situation for help and advice! Maybe we can trade holistic approaches, home help remedies, and any other ideas tried and tested, information thats like gold among us suffering with this rare condition. Its a idea, and soon it will be in progress.