Tuesday, 15 June 2010

relationships... essential for dealing with arthur

For the first time in a very long time I feel like myself again. Obviously the drugs and hospitalisation had something to do with that and I am now pumped up on steroids for a short term fix while the rituximab kicks in. However, I truly believe the thing that gets me through the bad times, and the really bad times, are my relationships with friends and family. It really is true what they say that in times of bad luck and hardship you find out who your real friends are. I was lucky to find when I was diagnosed that all my friends are an amazing and supportive bunch. Some friends I have known all my life and others for a few short years but each and every one of them has had a part to play in my recovery.
Thats why you can never get too down about living with RA and even if you do, dont shut out the people that care for you. At first its difficult to explain to friends youve been partying and getting up to mischief with for years that health is your main priority. I found it incredibly lonely when trying to pretend I could do as much and struggled through endless social events with a smile on my face when crying with pain inside. That is not the thing to do, as much as I wanted everyone to think I was ok and nothing had changed, it had. Eventually it makes things worse, or it did in my case. Pushing myself to do things that left me in pain and used all my energy left me exhausted and didnt do my disease any favours.
Learning to accept your fate is a hard thing for anyone, lets face it none of us know what is going to happen in our lives. Unfortunately there is no guarantee we will all be healthy and happy forever but thats what life is about right? Its how you deal with things and adapt your life to your situation that counts and will ultimately let you lead a much happier life. When I finally spoke to my friends about what was really going on, it took me a while, I tried to explain that I was still the same person just that I needed a break now and then. Everyone was very understanding and I know that I am very lucky but the sense of resentment often rears its ugly head when I have to miss out on things because of my "condition". This doesnt happen so much anymore as I start to get my RA under control and my friends tend to do things that I can be included in so I dont feel so left out! Bless them.
Nothing can make you feel any better than a good laugh with your friends. Its like medicine in itself for me and has got me through my darkest times when all I wanted to do was give up. Battling against RA is not a fight you want to be in alone but when you let people in you see how much they can help, all in different ways. For instance, the friend that brings you a massive bar of chocolate in hospital when you are sick of eating "healthily", or the friend that takes you to the cinema instead of a bar when you cant drink and especially the friend that calls right when you need one most.

Wednesday, 9 June 2010

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.

Tuesday, 1 June 2010

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.