disease.... great for weight loss apparently

I am sad to say I have had another pretty pants week. After some bloods came back abnormal and my disease activity hit the roof last week, I was admitted to hospital. Boy I love hospitals! The idea is that I could be examined, my medication would be reviewed and I could generally get some bed rest and recoup. However, when I was admitted the specialist detected another problem.
Now, I have never been a particularly "large" girl, i've gained and lost a few bits of timber over the years especially through uni (when drinking every day was a social requirement). But since I was diagnosed I guess I have noticed my few curves disappear. Not so much instantly, but over time as the tiredness, pain and medication nausea took over (your appetite tends to decrease). I know its a different story for some people, they say you can gain weight by not doing very much in terms of exercise but it has been the oppostite for me. For women, weight is a massive issue in general but when you have so much other stuff going on its the last thing you tend to think about.
It turns out that over the past year I have lost just over 3 stone. woo hoo some may think, but with that weight I have lost muscle, energy and strength and I want it back! The specialist at the hospital referred me to a dietician for "disease related malnutrition". This was slightly scary as I didnt really know what to expect but its quite simple really... My body has put all the energy from the food I eat into fighting my disease and has had no reserves left to keep a healthy weight. This means I need an extra intake of calories, vitamins and minerals to stay healthy. "Great! More doughnuts!" I thought, but sadly this isnt the case. I have now been put on some special drinks that contain all the extra nutrients my body needs. Frankly, they taste like crap and I have to drink 2 a day along with 4 shots of concentrated solution that I can only describe as like drinking shampoo.
I know it will be good for me but I cant help thinking, god where will the problems end! A week later and I am out of hospital. They have managed to get my situation under control with steroids, conversion of tablet methotrexate into injection form and of course the dreaded drinks. I must say i am feeling much brighter and hope to continue despite the fact that I am exhausted from lack of sleep. Not sure about you but I can never sleep in hospitals... especially when cleaners are hoovering round your bed at 6.30am! (No joke). But I am back in my own bed now and glad to be home. things are looking up and im feeling a lot more positive... for now.

Benefits... benefitting who exactly?

As I briefly mentioned in my last post my employment and support allowance was recently suspended (for those of you who dont know, ESA is for people who cant work due to medical conditions). The anger is overwhelming! My medical report stated I can do things I cant even on a good day. Believe me i would love to bend to the ground from standing or carry heavy bags (would make shopping easier!) but I cant! So where do you get off saying I can do these things without difficulty when most days at present I cant even get out of bed? mmmm? Of course my doctor and specialists have fully supported my appeal. I think its truly disgusting that people like me are deprived from receieving what is actually a measly £50 a week to live off. That is the little luxuary and independance I have left. I know there are hundreds of people out there who know how to swindle the benefits system in this country and they get away with it. Hundreds of pounds when there is NOTHING wrong with them. Yet when you really need help, you have to go through the ridiculous and degrading process, laying bare your very soul almost to get a lousy £50!!!!
I have literally filled out loads of paperwork, had to get medical notes and letters to support my story, been prodded and poked at a medical exam and also ran a ridiculous phone bill calling the idiots to then be told im not quite "ill" enough. Tell me then, what needs to happen to me to qualify for this pocket money? Because being disabled, in constant agony, and on 25 tablets a day obviously isnt enough. Its a joke. If anyone else is having these problems please let me know. The thing that annoys me the most is that I would rather be out at work earning my own money with a career at the age of 23 than essentially begging for money from the government. Swines.

There's nothing more tiring than... doing nothing

The past few weeks have been pretty slow. Every day I wake up hoping I will miraculously feel better... obviously it hasn't happened yet. Since my treatment I have noticed the tiredness is overwhelming sometimes. Ill be out with my friends having dinner and ill suddenly feel the need to have a nap in my dinner, (hasn't happened yet but close to it!). I have to get up and go home for a lie down as I havent got to grips with how to control it. It's funny, the more I do the more tired I am and the less I do the more tired I am... work that one out. I am trying my best to get out and about as much as I can and when I feel well enough though. The thing I would love the most is to wake up, have a full day out with friends or something and not feel the need to sleep. I used to take so much for granted, we all do. Its just not possible for me to do that without using all energy and making myself in pain but I am hopefull any day now the meds will sort it all out.
I spoke to my doc about fatigue and got no help whatsoever, what are they employed to do again? It's stupid getting the same answers over and over again but I know many other sufferers feel this frustration too. So the best way to deal with it is to sleep when im tired and do stuff when im not... simple huh! It has however been great the past couple of days as the sun has been shining and bbq's have been on the agenda so everyone else has been "lazing" around just like me!
I have had some bad news though, well I say bad I mean infuriating!, my benefits have been stopped. I receive employment and support allowance for my condition while I cannot work, and believe me as soon as I am able to work I bloody well will!, and the results from a "medical" I had 3 months ago suggested that I was perfectly capable to work.... ermmm WHAT?! More about this next time...