I Want Candy!

My decision to get a bit fitter and healthier in 2011 is proving harder than I thought. I decided to try and loose a few of my wobbly bits that have presented themselves since I was put on steroids and treated for malnutrition. I decided to try and loose a stone, which some of you may think is mad because I am at a healthy weight now, but the majority of this extra stone can come off my hamster face if it wants. Initially eating healthier is not that big of a challenge, I just wanted to make sure I replaced crisps, chocolate, cake and chips with things called apples and salad. Simple huh? Well the thing is my body thinks it’s now in a constant state of starvation because of the appetite increase the steroids have kindly given me. I am not starving, I am eating well, but if I don’t eat every five minutes the steroids crave sweets and all things calorific.

The exercise is also proving difficult. I was fairly fit before my diagnosis; trips to the gym occasionally and generally being very active kept me in tip top form. However, not only do I have to endure the physical challenge of exercise but I now have to endure the painful aftermath with swollen, agitated joints and achy muscles. For a normal person, you can expect to feel a little sore after a good session in the gym. But I am not having gym sessions, just walks, about twenty minutes on a static bike and a few of the wii fit games. It’s hardly asking my body for much, but it thinks I’m training for a marathon or something. So when it comes to doing a little exercise the day after, it’s kind of off putting because of the pain.

I am frustrated. I want to just do a little exercise for crying out loud without feeling like I’m climbing Everest! All I think about is cake and sweets and sleep and kebabs (well not so much kebabs but you get the point!)

On top of my trials and tribulations in the world of fitness, I have made the decision to start looking for work. I think I am mentally ready to return to employment after nearly two years out of the game. The decision is based on sheer boredom, frustration of living on the poverty line that is measly benefits and mainly the fact I need a new challenge. I need focus and goals and I believe employment will give me that drive I desperately miss from the workplace.

Here comes the moaning again.... Finding a job is a ridiculously hard process. I had forgotten just how hard it is to bang out CV’s and cover letters, scour the millions of advertised jobs on the internet and then find something I actually want to do. The problem is I am looking for part time work, I don’t think I am capable of full time just yet (I don’t want to run before I can walk). The only part time jobs that are out there are in cleaning (which I can’t physically do), bar or waitressing work (which I can’t physically do) or telesales (which I can’t physically stand). So my idea is to send out speculative letters (or begging letters as I like to call them), pleading with companies that I would like to work for to consider me for any jobs that come up or create a role for me based on my ‘excellent’ experience. (One can only hope). It will be interesting to see how employers respond to the fact I left employment in 2009. Inevitably they will question the gaps in my CV and then I will have to discuss my disability. While employers have the right to know about my physical health, I wouldn’t be asking for the job if I thought my condition meant I couldn’t physically do the job. So now I enter the world of potential discrimination because of my condition. I will be waiting for the phone to ring and offer me £100,000 for sixteen hours a week in a fantastic and friendly company that will let me go to doctors appointments and have time off as and when needed.... Hmmm.... somehow I don’t think it’s going to happen but I’ll keep my mangled arthritic fingers crossed!

Little Knocks

You would think I am used to knock backs by now. Little bumps in the road to recovery are to be expected and I have prepared myself for most things. However, I found myself once again in disbelief at my situation when a letter landed on my doorstep this week from the benefits office. Well, actually, two letters. The first stated that after once again filling in forms, collecting evidence from my doctors and specialists that prove my unfortunate situation, my Disability living allowance money has been halved. Yes, halved.

The benefit that was pittance before is now loose change for living in this hell. I don’t usually like to discuss money, but I feel it’s important to educate people about the dire financial situation you can be in when living with a disability which means you cannot work. I now receive £18 a week from the government to help with costs for living with a disability.

On top of this devastating news, I then received another letter about the only other source of income I receive, my employment and support allowance. It seems after battling for months with an appeal last year to keep receiving this benefit, I now have to prove myself once again. More forms to fill in, more evidence to collect for a further £80 a week. When you combine the two amounts I receive, I am expected to live off about £300 a month. Now, I am lucky that I have a family who can feed me and support me when needed, but if I lived independently I would be severely in the ‘crap’ right now. Why do I have to keep proving myself when my condition is not going away? It’s not curable, and yes there is hope that it may improve but I would inform them of any changes (as I am constantly reminded to on any correspondence they send).

So now I am in a situation which is forcing me back into employment if I have any hope of a future living independently. I was hoping to go back to work this year anyway but I don’t want to be in a situation where I have to take a job I physically cannot do just to keep some money coming in. It really is the most frustrating and demoralising system. I am fed up of fighting for what I deserve. No doubt I will be called up for another pathetic medical exam, lead by a ‘professional’ who has no knowledge of arthritic conditions and will inevitably judge that I am perfectly fine (because sods law means I will probably be having a good day when the examination presents itself).

I find myself in constant state of ‘silent screaming’ (this is when you are screaming at the top of your lungs in your head but no sound appears from your mouth). I know many others will be silently screaming too. And with the situation only apparently going to get worse with the government reforms on benefits, where does this leave us? Stressed, anxious and in a constant state of worry that’s where. And this on top of a distressing disease is enough to drive anyone insane. It’s no wonder that the majority of people with chronic illnesses are depressed, we really have too much to deal with. I don’t expect or want pity, just some help from the system that is supposed to support those who are genuinely ill and in need. It is obvious the few selfish people who cheat the benefit system when there is no reason for them to not be in work, are spoiling it for everyone else.

On a lighter note, I am concentrating my efforts on supporting those in need with my fundraiser. Organising this is going well, I have received loads of support from local people and as a result tickets are selling fast! So if you can make it on Saturday 19^th February and are in the mood for some great live music, champagne, winning some amazing raffle prizes and watching some gorgeous models strut their stuff in the catwalk show then contact me to get your ticket. All this for only £6, now that’s a bargain. All proceeds go to Arthritis Care UK.

Fighting Back

Firstly, I hope you have all had a great start to the New Year. I have not been so fortunate. It seems my body decided I had to choose between having either a good Christmas or New Year and wouldn’t allow me both. I have come down with terrible flu (not a simple cold) over new year but still enjoyed myself and made a swift trip to Wales (although shorter than planned). My body did make the right choice as I still got to have the great Christmas with my loved ones I really wanted.

 Secondly, some of you may have seen the recent article in the Daily Mail about me and after some frankly ridiculous comments were made online in response to the article I feel it’s only right I respond and fight my corner. Once again, I did the article for one purpose only, to make people aware that arthritis is present among young people and it can be triggered by something as simple as having a viral illness. Several people have made comments about what was written and suggested that contracting RA because of a cold is ridiculous... not true. Obviously the journalist picked up on and emphasised the fact my arthritis started after having what at first seemed like a bad cold and, as we as a society like to read about the extreme, this point formed the headline.

 I was generally happy with the story, although not entirely factually correct as it stated I was 23 when diagnosed (I was 22) however, it did portray what was a very, very difficult period in my relationship in a different light to what I experienced. I only say this as I know that many of you have or will go through difficulties in your relationship because of your disease. Both my boyfriend and I went through a horrendous time and our relationship broke down as a result. The article only highlights the good parts of our journey, that now we have resolved our issues and moved forward but it wasn’t entirely correct to suggest that we were together and happy through it all. My family and friends were the people that supported me through my darkest days. I now have the support from the person I love but this has only come through soul searching on both our parts about what is really important.

 Also, some idiot made a comment about how I could possibly be a ‘high flying executive’ at such a young age.... where do I start with this? Well, firstly, does it actually matter? Has he not read the story and had anything else to comment on? The main points were there idiot man. Who reads a story about a young person suffering and thinks the most important response to make is on how something so pathetic is worded? READ the story idiot man. The point the journalist was making, and those who know I well will agree, is that I was a success story at such a young age. A graduate fresh out of uni, working hard to achieve my dream job, which I was very good at, and on track to get a promotion. Some others have suggested that I would be branded a benefit scrounger... is that just another way of saying that YOU think I am a benefit scrounger? I am fed up of defending myself on this point. I have been SERIOUSLY ill for a very long time and only now recovering from various problems my disease has caused. Recovery doesn’t happen overnight and until I am ready and fully capable of committing myself to an employer I will continue to be on benefits. I have paid my taxes and I genuinely am ill so why should I be made to feel guilty? Do you think I want to be in this position? I desperately want a normal life, to be able to work and earn my own money, buy the things I like and not have to worry that I may never afford my own home etc.

 So this has been a bit of a rant and I apologise but I feel the need to fight back on a few things. The last point I will make is that I have noticed a lot of competition in things people have said over who is worse off than whom. It’s not a competition to decide who is the most ill, we all have our own thresholds of pain and suffering and should just support each other, not complain that ‘whatever you have I have it worse’.

 I hope those of you who have been offended by comments made about my story, or comments perhaps made towards you, will find some peace in this blog. Feel free to vent yourselves. Happy New Year... here’s to getting your facts right in 2011.