This is a generic update I am sending to a few people and posting on a few blogs :) I have been mostly bed-bound for 18 months. I have M.E. and Crohn's Disease (ulcers in your intestines)  amongst other illnesses. I also have had as of yet undiagnosed seizure-type episodes for 13 months - waiting for MRI results. I also suspect I have narcolepsy and as I have all the symptoms and have done for some 10 years, but this could be coincidence with all the other things my body is fighting. I should add I have had the M.E. and Crohn's for a while it was just 18 months ago when I pushed myself into the ground trying to get through my medical degree.


Concerning the seizure like episodes, when I did too much either sit up too long/concentrate too long, get too hot/cold or when I would take a medicine/food which didn't agree with me etc...I would collapse. My speech would very between slurred and absent. My eyes would either be blurred or frozen shut. I would either be able to move a little or be completely paralysed. Then I would get these myoclonic jerks, which are very violent and I have damaged things including myself and hit other people - or I would throw myself out of my wheelchair onto the floor etc. I would recover within 5 mins to 3 hours if lying down and not doing anything. The slightest touch or sound would make me collapse again.

The past few months the most I have managed to sit up was for about 30 mins at the most before this would happen. At the worst I would not be able to sit up at all.

I have been going to a private hospital for environmental illnesses, and my family has paid thousands for my treatment for the past 10 months. The government has no treatment for M.E. here, and although they treat Crohn's it was the private hospital, which eventually figured out I had this illness and have provided part of the treatment which is above what the NHS gives for Crohn's. I had improvements, which came and went over these months. Each time I started a new treatment it would make me worse, as I was so ill, before it helped. However, these past few weeks I have felt better, yet every time I sit up for more than a few mins I would collapse, which would render me in a zombie-like-state for the rest of the day.

Yesterday, half way to the bathroom, I collapsed and had jerks. This time I decided to force myself to stay upright and see if eventually they would stop by themselves. I spent 2 hours upright like a zombie in and out of jerks. Then I slept. Yesterday evening I tried again. 2 hours 45 mins I sat upright working on the computer feeling not quite right but not a zombie and no jerks.

This afternoon I tried again. I spent 4 hours upright. Went up and down the stairs 3 times. Worked on my laptop and managed to concentrate. Went outside and walked around the garden, sitting in places to take photos with my digital SLR camera. Then I had my nap. This evening I sat up for 1.5 hours before having a bath. And so far an hour since having the bath.

I have gone from almost bedbound to the level of health I was at last May before the seizure-like episodes started in 2 days. I had managed to get outside and lay in a chair about 4 times so far this year, one in December and before that it was September. So my life has been so limited. Now if this lasts, I can go out in my wheelchair, go shopping, go to the cinema, see friends and so much more. I am not reduced to lying on my friend's sofa's the few times I have been well enough to go out.

Granted every muscle I have aches, as it is has not been used and it is going to take me a long time to build up my strength. Also I don't knolw quite how well I am yet. Some of my illnesses will nver be cured so I am never going to be normal. But if I can manage a near normal life in 6 months or a year, that will be amazing. I may be jumping the gun here. Before, if I did too much, I would relapse and spend months trying to get back to where I was. And that may still happen, so I must be careful and not rush, but so far my aches feel normal. Apart from the neuro symptoms i have all the time like pins and needles, maybe they will go, maybe not but they are not the end of the world :) Maybe I should have waited before raising everyone's hopes, but I couldn't help it! I am so fortunate that my Grandparents have paid for me to have these treatments, which few can afford, and that they have looked after me for these 18 months.

I need to get good posture cause I have back-ache lol! And this wooden chair isn't doing anything for my legs and bum, but hey ;) Thank you for all your support. Now back to my editing!

Oh and my motivational speech - don't give up! You are stronger than you think. And you will be surprised how strong you can be if you have to be.