Saving Grace

Recently, someone wrote to me, responding to my earlier blog posts to suggest that my attitude towards life and my condition is not a positive one. Whilst I completely appreciate and welcome any comments about my blog, especially from those who are going through the same things, I wanted to put it straight that I am, in fact, a very positive person in my opinion, given my situation.

Yes, I may make sarcastic comments and moan about a few aspects of living life with RA, but on the whole I believe I cope with day to day life pretty well and my outlook on the future is one of hope. I suppose what I am trying to say is I apologise if reading this you have been under the impression that life with RA is awful. I am afraid it’s not, well not entirely anyway. Yes, there are lots of negative aspects of living with chronic disease, but on the whole I wouldn’t change a single thing about my life. I am the strong, ambitious and optimistic person I am today because of what I have been through. I know that without experiencing these not so nice things I would be in a very different place in my life right now, a place where I didn’t and don’t want to be. I am proud of who I am today and what I have been through has only encouraged me to try harder and hope for the best.

My ‘negative’ comments are simply shedding light on some of the not so nice things we sufferers go through to make it easier for non sufferers to understand the challenges we face. The truth is, I am pretty happy with my life, the things I suffer with only get easier as time goes on and you know what to expect. My reader who wrote and suggested that I be a bit more positive for the sake of younger readers who may fear the future is probably right. I agree it’s good to set a positive example to young people who may read this and worry about what to expect but isn’t it also important to tell the truth? Because, if nothing else, I am completely honest about my experiences and I don’t sugar coat anything because it’s my life. It’s what I am going through. It doesn’t mean to say you will face the same things; you may have a total different experience to mine. But on the whole we sufferers know that unfortunately, RA is not a nice thing. It’s hard and it’s frustrating, but the point I try to make is that life does go on. It may change course slightly, but life does go on and things do get better. Much better in fact, as you learn to cope with your condition and the limitations it presents. Of course, you might not see it as limitations, simply obstacles that may mean you have to do things differently than others or how you did them before.

I apologise to my readers if I have given you the impression that doom and gloom is all RA adds up to. I never intended to project this through my writing and I hope the majority of you see that. I am simply a person, retelling my story, in the only way I know how... honestly, openly and with a few sarcastic and light hearted sentences thrown in. That’s how I generally live my life anyway so I wouldn’t want to be fake and pretend to my readers that everything is glorious all the time. It’s not, and let’s face it life is not like that for anyone (apart from some very lucky buggers). I don’t want to preach and start banging on about life affirming or anything so I simply tell you how it is. I tell you what I do, how I do it and how I feel. If you are a young person, which I consider myself to be too, then hopefully you will ‘get’ where I am at. I am still trying to figure it all out myself to be honest so I hope you won’t judge me for having a bad day and ranting about it in a negative way. Sometimes that’s all the therapy I need, to just write it all down and move on. The difference is the things I write are left there for you to see. How you take them is down to you and I never read back through my posts because I don’t necessarily want to remember what I said or what I’ve done. It may bring back memories of things I have moved on from. Maybe one day I will sit down and read my own life story, or the last couple of years of it anyway, and be surprised or outraged by what I have written.

But as long as I know I have been honest and open and if one single person can relate to what I have said and know that they are not alone, then I have done what I set out to do.

(I just want to point out that this is not an attack on the person that wrote to me, just a response to why I think I am not a completely negative person as they suggested. I totally respect their opinion and understand where they have picked up on negative tones in my writing... but I know there are positive tones in there too. I am just not fearful of telling the truth because when I think back to my diagnosis I was scared and alone. If I only had an idea what to expect from an actual person who was actually honest rather than trawling through devastating internet sites and then getting the total opposite life affirming happy, smiley chat rooms where ‘everything will be OK’ then I might not have been so scared. I would know that there would be both good and bad times but I would get through it, and I’d be a better person because of it.)

Commitment Issues

It’s 5.42am and once again I lie awake considering whether to admit defeat and get up after another restless night or try my luck for another hours shut eye. I can’t stand this. Probably one of the worst things about RA... the massively disturbed sleep pattern. I have had it probably since I was diagnosed and if I’m not awake because of pain or restlessness in my joints, I am awake because I am thinking about it. My wrist seems to be the main issue at the moment (and the ravin’ mad arms I spoke about last time).

I have got a lot on my mind at the moment I suppose. Work is top of the list. I am struggling because of my wrist and, as ever, worried about my finances and the future. I would like to look at the possibility of settling down a bit, getting our own furniture and home one day would be nice. At the moment that seems so far off because surviving off one wage is very difficult. I appreciate that my partner is so supportive of my condition he opts to cover the main living costs we incur from living together but it frustrates me that I can’t pay my own way. I always knew that starting my own business wouldn’t pay for the first year or so and I was willing to accept that but times just seem to get harder and harder. Everything’s going up and wages are not... well obviously mine is nonexistent but my partners wage hasn’t reflected the increase in living costs.

I know lots of people are in the same situation when one half of a couple are living with disease. They rely on the other person physically, emotionally and financially. It’s not fair but in most cases it can’t be helped. I have considered several times trying to seek some extra money through a little part time job but the truth is I don’t know what I would do and I am frightened about employment again. Working for myself means I don’t have to take time off for doctor’s appointments and all the other things that come with RA. I don’t have to explain to my boss why I am off sick for the four hundredth time in two years. I hate to let people down and that is what worries me the most. Committing to a job, even part time, means exactly that... you are committing your time to your employer on a regular basis and even if they did consider taking me on with my condition (as I don’t think I could lie about it or leave it unsaid) I am not sure I can commit to that. I never know how I am going to feel from one day to the next. If I wake up feeling bad or if I am in pain with what I currently do, I simply take a few hours to get right and work my schedule around my condition so that my work is always done, just at random times. I have to consider the possibility that I know further surgery is along the road somewhere, which means taking a large amount of time off if employed (probably with no pay either) and I am always scared of other things going wrong or unexpected flare ups or crumbling of joints (as I unpleasantly learned with hip gate).

How do people do it? How do you make the choice and the leap to return to work and be ready to commit to an employer? It’s such a difficult time to even find a job in this country but I know that if I was an employer I would prefer to take someone on that I can rely on rather than someone with a chronic disease so if I unfortunately feel like that then employers would too, right? It’s so frustrating when I hear that people are struggling to find work because I know there are jobs out there but its stuff they don’t want to do. The fact is, those jobs are things I physically can’t do. Part time jobs such as bar work, cleaning, manual stuff etc would be physically challenging for me so there is no point in me applying because I know I would struggle. But people who say they are desperate for money would go for these jobs to tide them over right? Well it seems not everyone wishes to go to this level to earn a living. I think I’d be quite happy doing a little bar job if nothing else came along, a sociable job that furthers your skills in customer service is how I see it. The kind of part time job I would love just never seems to be available (because the majority or roles I want to do are all full time). I love to write, be creative, organise events and many other things but you have to be willing to work long hours to get a job like that, or in the case of writing doors never seem to open for me.

I know that not everyone has a job that they enjoy doing, most people work to live and spend all week waiting for the weekend. I don’t want a job like that; I want to love what I do. I didn’t go to university for four years to end up doing something I hate every day. There should be more help for people with chronic disease, disabilities and any other health issues to give them the support they need to get back into work. The help is simply not there at the moment. The only ‘support’ people seem to get is letters telling them to get off their arses or their benefits will be stopped. Not much encouragement then.

The state of work and benefits and government support in this country makes me sick. It makes me physically angry that it is so messed up. Of course there is no one to blame, it’s all our own faults as we are told but who is going to answer to the situation of people who really want to succeed in life and earn their keep but they are not getting the help they need to do so? Simple steps to help are all it would take too. A little encouragement, maybe some form of scheme in place that supports the fact you may have to take time off so that employers are not left without your help and more physical support (adaption’s to equipment that are EASY to implement, I’ve been through the current system and its appalling, takes forever and costs employers a lot of money).

Anyway, rant over for now. Feels good to let it out, we really need to help each other and stick together I guess in these tough times. Or more people need to eat cake so I can eventually do my job full time and get paid a shed load and never have to worry again. I can dream I suppose....

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.