Ravin' Mad

I have some strange symptoms and goings on at the best of times but this takes the biscuit. The thing is, I can’t figure out what is causing it and why it’s started all of a sudden but it’s been going on for a few weeks now... every night. Also, I’ve started to grind my teeth so all in all I’m not getting the best night sleep (and I can’t be that easy to sleep next to either... sorry Josh). I haven’t changed my medication recently or had any other significant changes I can think of so the mind boggles. I have been getting pain in my wrist but that doesn’t explain the other arm going at it all night.

I don’t sleep at the best of times, for one reason or another. Whether its pain and discomfort, most nights, or things on my mind, the rest of the nights, I cannot remember the last time I had a decent night’s sleep. Probably about a year before all this started happening (so I haven’t slept properly for about 4 years... perfect). I have had to try and catch forty winks in the afternoon occasionally but the amount of caffeine I drink throughout the morning so that I can function on barely any sleep keeps me buzzing through the afternoon making it hard to relax. Maybe the caffeine has something to do with the raving mad arm syndrome, vicious circle though as without sleep I need some sort of caffeine fix to join reality each day. I do need to curb my caffeine addiction though, I think I am relying on my red bull cans and cups of tea far too much at the moment and it doesn’t really help because I’m still tired I just have a strange constant stream of energy buzzing through me (so really it’s like sleep walking). I’m pretty sure I resemble a zombie at present (nowt changes there then).

I received some results today from the x-ray I had on my left wrist, it’s pretty knackered. There are some signs of change in the bone, down to RA no doubt so it’s probably only going to get worse but with the major surgery on my hip already done this year, my doctor is reluctant to make me go through more surgery unless it’s absolutely necessary. I appreciate that but I don’t know how much longer I can put up with this limp, lifeless, aching thing attaching my hand to my arm. It’s not really doing anything or of any use to me at present which is making my job difficult (try rolling out icing to cover several wedding cakes with a knackered wrist). But I suppose it saves me having to have more work done at the mo (I can’t really deal with any more time out in recovery, six weeks after the hip op was bad enough).

So, on I plod, with my dodgy wrist and raving mad arms. All I need now is a constant twitch and to start shouting things at random and my transformation to complete weirdo is complete!

Keeping My Head Above Water

Just when you manage to keep your head above water for a little while, a massive pigeon comes and craps all over it. Well, that’s the case in my life it seems anyway. I have been struggling desperately with my financial situation for a while. Not being able to work because of being so poorly, trying to find work, unsuccessfully when I felt a bit better only to come to the conclusion that no one wanted to give me a job, only the jobs I couldn’t do because of my condition.

So I took a stand, worked bloody hard and set up on my own, a business which I could manage and working for myself means I can work as and when I am well enough to. I still cannot afford to take a wage, that will come eventually, but that’s the gamble I had to take if I ever wanted to try and gain some independence and get back into working life. So I find it incredibly hard to swallow that a letter landed on my doorstep from those buffoons in government today telling me I might not be getting any more financial help with my condition because the whole system which is supposed to benefit people who need help, like me, is actually not going to benefit anyone. The whole law is being changed and it’s been coming for a while. Many discussions have been had about what to do with this country’s welfare system and to be honest it's such doom and gloom and there has been so much uncertainty I hadn’t bothered to pay much attention.

I don’t understand or frankly I don’t wish to understand why they think taking money away from those who really need it in order to try and live a normal life as possible is fair. I know it is down to the selfish lazy idiots who reap in the joys of taking what they are not entitled to and the government are trying to make it harder for them but it also makes things harder for us, the people who rely on the measly change we get handed out. The fact is, if I could work a normal job, where I got paid and I lived independently of the government’s hand outs, I bloody well would, and I bloody well did for the years I was healthy before my diagnosis. I paid my taxes, I worked three jobs at a time to get me through uni and I managed to get a bloody good degree. Now I just feel let down. It’s not enough that I’ve had my career prospects and future taken away from me because of this long term disease, but now I fear I will get nothing to help whilst I struggle to make ends meet.

I am in constant fear that because of my condition various aspects of my future will be affected, such as being able to afford a house of my own, or start a family but now I will be in more fear that these things may never happen because I am not quite disabled or suffering enough. How disabled do you have to be to qualify for spare change these days? The last time I looked having to have a hip replaced at 24 was reason enough to think I perhaps need a little help. How much pain and suffering do you have to be in before you are deemed pathetic enough to get a few quid that may mean the difference in being able to pay for your prescriptions? (Oh yes because for some unknown reason someone with a long term CHRONIC condition such as RA that needs medication every day still doesn’t receive free prescriptions) I experience pain and suffering every day of my life. Every single day in one form or another. My whole life has been turned upside down by my diagnosis and all I want to do is to try and stand on my own two feet and be positive about my future. How can I be when I constantly being made to feel like I’m not entitled to help to let me live?

Living in fear and stressing about finances should not be something people with chronic and long term illnesses have to worry about. Is it not enough proof of our ailments with countless letters and evidence written by our doctors in support of our claims? Is it not enough that I spend half my sodding time at hospital appointments or collecting prescriptions or injecting myself or filling out bloody applications for help that you are telling me I am not quite pathetic enough to receive anymore?

This country is going to pot. There is no support for the weak and vulnerable. Only penalisation which is affecting the wrong people. Almost makes me think I should give up, succumb to my pain and be destroyed by it so that I might just be able to afford some shampoo once in a while. But I try, I keep on fighting and people like that should be rewarded and helped along the way for trying to give back to their country. Shame on you the scumbags who sit at home and play on a fake illness so they don’t have to work for a few months and take every penny they can get. You’re alright to sit down the pub all day, though, aren’t you? Where is the people who abuse the systems sense of community or remorse for taking what isn’t theirs? I am grateful for every penny of help I receive because it helps me live from day to day but now things are about to change I wonder how many will be left in poverty or very ill or unable to treat their conditions because of lack of money for medication and a decent quality of life?

This whole issue sickens me to my stomach. I find it hard to sleep at the best of times but with this added financial burden on top of me I worry just what will happen next that targets the vulnerable people in our society.

Best Day Ever

Do you ever wonder what it would be like to wake up in a different life? Not necessarily a different person, just things in your life would change. I often wonder what it would be like to wake up RA free. I don’t wish to win the lottery or live in a mansion or anything, just to wake up one day without the instant feeling of pain and knowing that it may never change. Obviously some days it gets better after waking, but I instantly know from the moment my eyes open for the first time. I am constantly reminded when I wake of a condition I know I will still have by the end of that day. It would be lovely to know that feeling of not worrying what struggles lie in the day ahead. It would be nice to know that I can do everything I want to do, without hassle or pain or difficulty. To wake and know that today, like always, can be a good day. To have that control back would be truly amazing.

I don’t wish that I never had RA; in fact I think the experience of living with it has made me a stronger person and I am much more aware of peoples suffering now. I think it has made me mature as a person, think about others more and try to live every day to the full. Those revelations I will always treasure from living with RA. It’s not until you know suffering yourself that you can understand what others may be going through. I don’t miss my naivety and sheltered life. I believe I was a selfish person before all this happened, some might say I still am but I hope not. I try to consider others before making decisions, make time for my friends and family and make sure they know how much they mean to me. I want to help others in my situation, because if I don’t you can’t be sure someone else will who truly understands.

I often daydream of a life without suffering from now on. I imagine that tomorrow I will wake up and a miracle will have happened and my body just returns to normal, without the need for drugs or to try new treatments. RA vanishes and leaves behind a more confident, ambitious and considerate individual. Wouldn’t it be nice hmm? Well day dreaming seems to be one thing getting me through this week. It’s been tough and I am fed up. Completely fed up if I’m honest. Some days I just get so frustrated. It started today with not being able to turn on the tap. After struggling for half an hour and just about getting to the end of my tether I managed to loosen it and run my bath. The bath went to waste anyway because I couldn’t actually bend down to get in it, and there was the fear that I wouldn’t be able to get out. I was home alone. I cried sat on the edge of the bath. Then I felt stupid and had a shower instead. I really wanted that bath, though.

I couldn’t open a jar of jam at work, or lift the boot of my car open and then I went to queue up amongst about a thousand pensioners for my flu jab. Each and every one of them starred at me, probably trying to figure out why I was there. ‘A young person, look!’ I could almost hear them chant. That made me angry. You’re not the only ones entitled to a flu jab you know. I wasn’t feeling the best anyway so to be on my feet for half an hour whilst the nurse whittled her way through the sea of grey didn’t make me feel much better. When it was finally my turn, of course, I was asked why I was there. I almost wanted to say just for a laugh, thought id pop in and get jabbed for no reason at all. But obviously she didn’t know my history or anything so it was hardly fair to be rude to her.

My arm bloody hurts. Luckily they jabbed me in the same arm where my wrist is now dropping to one side after weeks of being in pain. My shoulder on that side is also grinding and causing me to nearly pass out when I try to lift my arm up. Brilliant stuff. I suppose I have one ‘good’ arm at least. Not that it helped the jam jar or car boot situation.

When I finally completed the things I needed to do today, bake several cakes, do a little bit of shopping, get petrol (again, all very difficult with the use of only one arm) I collapsed on the sofa at home at 2pm. I had many things I could be doing, but couldn’t, and I was mad because I was bored. I starred at the TV for a bit and decided it was a great time to clean the house. Of course there is no great time to clean the house but boredom and frustration set in and I couldn’t just sit there anymore. Of course I made things worse and tears and anger followed as I tried to vacuum the stupid carpet with one arm and bashed my bad knee. I gave up. There was no way I was getting the sodding thing up the stairs anyway. I did the dishes, forgetting my wrist splint was on which then got soaked. I only have one wrist splint so now, hours later, I am still sat here with a soggy splint irritating my skin as I have no means of drying it and can’t take it off because my wrist hurts so much.

There are many other things I could tell you about this stupid day, but I won’t bore you with the details. I did throw a few things and the cat was quite scared at one point but you get the gist. To sum up, I am annoying myself and there is pretty much nothing I can do about it. Oh and to top it off my hip hurts. Yep, the hip I had replaced to solve all my problems. Problems not solved. Have a lovely day.