Where Would I Be Without You?

My Mum is the best friend you could ever have. I have no doubt I wouldn’t be where I am today without her. Throughout my life she has always been there for me. Her only wish in life was to have a family and she has a great one at that (if I say so myself). Seriously though, she has brought me up to face problems head on and her strength has encouraged me to make the most of life. Support for someone living with RA is vital and I could not do this without her.

I remember when I first became ill and she was devastated. Everyone wants to have a healthy child who can live a normal life and it must have been a massive blow to her aswell as me when I was diagnosed. But her support and encouragement not to give up has got me through my darkest hours. I am grateful I always had a place to call home, no matter what situation I was in. Knowing that someone is always there is a wonderful thought. She is not there to simply pick up the pieces when things go wrong but to celebrate when things go right.

It’s her birthday this week and it’s got me thinking about how I could have coped without her. The simple answer is, I couldn’t. She was the one who pulled me from my bed when I hit my all time low (not literally but you know what I mean). If she hadn’t have told me to pull myself together I’d probably still be in my bed now dwelling on everything. I am so thankful that she dragged me out of my state of self pity (not that I was happy about it at the time, I would have been happy to continue in self pity and loathing of my life). I hope she knows how much I appreciate her. I also hope you are lucky enough to have a Mum like mine because life would be really crap without her. If it’s not your Mum maybe there is someone else in your life to inspire you. Having someone to look up to is vital. They show you the way without having to lead you there and make sure you know you are not alone. I have never felt alone through this because of her.

I want those of you who are suffering to remember to thank the person who makes you breakfast on a bad day, carries you when your ankles are fat and washes your hair when you can’t lift a shampoo bottle. My Mum is a great help in my daily life. She helps me make my bed (which is kind of embarrassing at the age of 24 but try putting a duvet cover on when you can’t lift your arms). She makes me dinner when I haven’t the will to eat (shed be the first to admit her cooking hasn’t always been great but has got better over the years!) But most of all, she took me in when I fell apart and I had nowhere else to go. So this is to you, Mum, Happy Birthday and thank you for all you have ever done for me.

My Old Life

I am pretty much adjusted to my new situation now. After a couple of years of feeling pretty much rubbish I now know to make the best of it. Every now and again though, I get that niggling feeling that I miss what I call my ‘old life’. My ‘old life’ refers to life before RA. This was the life where I was successful in my job and starting out on my career, socialising with friends on endless nights out drinking like there’s no tomorrow and doing pretty much whatever I felt like. That life isn’t possible anymore. I don’t get the freedom, majority of the time, to do what I please. My career feels like it’s disappeared into the distance, especially with the nonexistent job offers coming in. I can’t drink like there’s no tomorrow, not that I even feel like it or would be able to handle the aftermath anymore. And I can’t shop till my arms fall off because government benefits don’t quite allow a shopping addiction to flourish.

The feeling generally occurs when I am bored, which at the moment is pretty much every waking moment. I have the odd thing to do with my fundraising, writing, seeing friends etc but the structure and routine of having a job and separate ‘free’ time is really lacking in my life. I miss having a purpose to get out of bed in the morning more so than ever. I hate those limbo days where I don’t really know what to do with myself. I like to be a busy bee and in my previous life was always on the go. I get bored very easily and as I am currently waking up at about 6am every day, there are a lot of hours to fill. I don’t really know how to solve the situation other than to wait for a job to come along. (I don’t expect one to fall out of the sky and I am applying for things constantly). It is frustrating and upsetting that I have had no responses from my applications at present. I wonder if it’s because of the massive gap in my CV from when I had to leave my last job? Maybe they think something is wrong with me. I ponder over the equal opportunities questions on applications, you know where it asks if you consider yourself to have a disability?

Now, if I answer yes, is it likely to affect their decision? Or if I answer no and then explain my condition at a later stage will I be classed as a liar for not declaring it sooner? Decisions... decisions. I find as the days go by I am becoming short fused, angry and irritable even about the smallest things. I am trying my hardest not to take it out on those closest but it’s getting more difficult to mask my worsening mood. I am not sleeping well, which is down to worry about money, not being worthy enough for a job and never getting back into a career I enjoy. Lack of sleep only makes things worse and because I am tired, even when I am bored I don’t have the energy to do anything anyway. Oh the spiral of crap continues.

I am much more comfortable in my ‘new life’ in the respect I am not burning the candle at both ends whilst trying to cope with this illness. I take things easy and don’t feel pressured by anyone to ‘keep up’ but things need to speed up a little before insanity sets in. My adorable cat can only entertain me so much during the day when people are out at work, and I think he’s overworked and underpaid.

Comedy Comforts

It’s funny what little things we devise to cope with pain. Everyone copes with things differently and often the way you cope with things change as you get older (or wiser). When I was first diagnosed my way of coping with the huge change to my life was to lock myself away, hide my suffering and cry into a pillow. There is nothing wrong with that, in a way it was grief I was succumbing to. Grief for the loss of my life as I knew it. Once the grief faded, general sadness and self loathing took over for a while. This was also a difficult period. One where I was mad at the world and everyone in it for not having to be me. When I realised this was selfish and confronted my sadness and anger things started to become clearer.

Pain is a funny thing. People handle it differently and some have higher thresholds for pain than others. My pain threshold was never really that high before, well nonexistent to be honest. I hold my hands up to being a drama queen over stubbed toes and knocked funny bones. But when I really experienced true pain, it was a whole different ball game.

Now I know how to cope with the pain I feel a bit better, and there is no easy way of learning this it’s just simply getting used to it over time. I have found other things that cheer me up when the long nights await me and the stiff mornings (no jokes please!) arrive. It may sound silly, that is generally the point, but I seem to be watching an awful lot of comedy these days. I have a routine of watching stand up and comical shows that give me comfort. I literally don’t feel ready to sleep at the moment until I’ve had my comedy fix. Maybe it’s because it makes me forget the rubbish things that are going on and helps me sleep easier. Amongst my favourites are Alan Carr, Lee Evans and Michael Macintyre (you may not have heard of them if you live outside the UK).

The comfort that laughter brings is amazing; it really is my best cure for pain. A smile really does go a long way when you have RA. If you are able to smile, then you’re halfway to living a normal life. I believe this because I have been through so much that has made me cry and the fact that I can smile again shows I am back to being who I really am. Small things make me smile now, the rush of caffeine from my first coffee in the morning, opening the first page of a new book and most importantly being able to climb the stairs two at a time (it rarely happens but when it does I feel like a kid again!)

I hope that any little things bring a smile to your face. The days are much easier when you can laugh and try and enjoy things (I heard once it takes more effort to frown anyway). If you haven’t found a way to cope with your pain yet, it will come, just give it a little more time.

The Adventures of Rheuma Girl

I mentioned previously that I had written a book about my experiences with RA. Whilst my work has been credited for its 'literary merit', it has been deemed not quite commercial enough by some publishers at present. I am still waiting to hear back from others so fingers crossed...
So I thought, as a little treat, I would share with you the opening few paragraphs from the book so you can decide for yourselves if you would like to read more. Here goes...

Monday, 22^nd March 2009

 I gripped the cool metal of the chair arms and stared through the dusty blinds into the surgery car park. I waited for the words to sink in. The woman spoke slowly and softly. Her wiry hair constantly falling in the line of her sight, she brushed it away to make eye contact. ‘Do you understand what I am telling you Miss Roberts? It’s just you seem a little distracted?’

 I nodded, feeling that I didn’t completely understand but I wanted to reassure her I was listening. I wanted to run out of that room as fast as I could. Rewind to the morning when I was hopeful. Hopeful of something, anything, other than this. I switched off as she passed me leaflets and mentioned something about my family and friends.

 ‘Most importantly, you need to discuss this with your employer. I understand you have had significant time off recently and this may help them understand why.’

 ‘Yes of course,’ I nodded again. ‘What is it that I need to tell them exactly?’ I hesitated.

 ‘You need to inform them of your diagnosis, Kerrie. This is very serious. You may feel a lot worse until we can get you on the correct treatment, and that may mean more time off work, and you will need support from your family. Your family live in the area, is that correct?’

 ‘Actually no, I live with my partner and some housemates. My family are about two hours away… Is that going to be a problem?’ I was aware she was flipping through my notes trying to establish some background on me.

 ‘Well, not a problem exactly Kerrie, but it is important that you speak with them about this. I would recommend that you don’t go through this alone.’

 I felt like I had just been given six months to live. It wasn’t that bad surely?

 ‘Kerrie, Rheumatoid Arthritis is not something you will recover from. This is a long term condition unfortunately. I am not trying to frighten you, but you need to take this seriously.’ She looked concerned that I was not paying attention but to be honest I wasn’t. I wanted to leave the dark, dreary room to call James.

 With her request that I make another appointment for in a couple of week’s time, I thanked the doctor and staggered through the door. Daylight hit me like a cold shower. How long was I in there for? It suddenly dawned on me that I didn’t know where to go or what to do. I was due back at the office in the morning but how could I possibly go back now?

 I rifled through my bag trying to find my phone. I didn’t know who to call or what to say, so I held it tight in my hand as I walked slowly through the car park towards the bus stop. The pain in my legs made me limp slightly and I wished it would subside so I could get home faster. As I stepped onto the bus, a wave of anxiety hit me. I suddenly felt incredibly hot and overwhelmingly nauseas. The driver asked if I was ok, ‘You look a tad pale love…’ I rushed towards a seat feeling the colour drain from my face. ‘I’m fine,’ I replied politely, grateful of the seat taking my weight as I watched the remaining passengers get on.

If you would like to read more, please let me know... the adventures of Rheuma Girl await

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.