Monday, 13 August 2012

Cheers To That

So another year has passed in the life of Rheuma Girl. I suppose at least this year despite the ups and downs, I have something more to show for my nearly 26 years. I cant believe this journey started 4 years ago. So much has changed from that point. But in the past year I have at least established myself as a businesswoman (that sounds really weird!). I have ran with my ideas, and turned them into reality through hard work and determination. I want to look back on my life and not just be the girl with that disease or that condition that people take pity on. I want to be acknowledged for the type of person I am and what I have achieved. I think running a business at 25 is quite an achievement anyway.
Considering this year started pretty badly, I have once again picked myself up, dusted myself off and carried on regardless. I didnt anticipate being alone this year, but to be honest I have never felt more lonely than right now throughout everything. As much as I appreciate my family and good friends who have showed support, I cant help but feel left behind a little. I think its the challenge of going about day to day life, being proud or excited about things and not having anyone to share it with. I am so happy for friends who have grown up, found solid relationships and are looking to the future but at 26, my future still feels so far away. I cant help but wonder about having a family and getting in a serious relationship. I always thought I would have most of that covered by now. As a young girl, 26 always seemed so old! I figured I would have at least settled down, but things change, people come and go and you start to cross out all of the people that shouldnt really be in your life. Which ultimately means youre left with the good ones that will always be there.
What am I hoping for this year? Well, I know it cannot be forced but I would like to think I may find someone special enough to start thinking about a future with. Maybe I have already met them but not realised yet? I would also like to think my business will become more established, and continue to be enjoyable and realistic in terms of my lifestyle. At the moment I can manage but with help. So here's to being 26... and to the anticipation of something great to come this year.

Friday, 8 June 2012

Come Aboard The Yacht of Life

So here we go again. Tomorrow I face the daunting task of sitting in a chair for around 8 hours whilst I’m pumped full of drugs and poked at. Yep you guessed it, its Rituximab infusion number 5. I cannot say I am looking forward to it, did you guess? This time especially because of work. I didn’t have to worry so much about side effects when I had treatment previously because it didn’t matter if I felt like crap for a couple of days or weeks even. I had nothing to do anyway. This time it’s different. I have a job to do, a business to run, so feeling horrendous and having time off isn’t an option. I have allowed myself two days to recover(ish) as realistically I know I won’t be able to get up the day after an 8 hour infusion and do a full day on my feet... it just isn’t going to happen (and that ‘s not being negative, just sensible). On my second day off, I do need to get into some sort of gear and do bits of work from home and fetch supplies etc so it won’t leave much time for lounging around.  I am sure that other people do just fine... right? I know I wasn’t quite right for a while after my last infusion but I can’t say how I will feel returning to work because I’ve never had to do it before.
Anyway, the thought of it scares me a bit. Because I have put myself in the situation where I have to be ok. As you all know, the unpredictability of RA means you can never say anything for sure when it comes to how you will feel. It’s really frustrating trying to be prepared for something that you can’t predict. I still have sleepless nights where I imagine waking up and not being able to move for pain. The fear of not being able to walk as I try and get out of bed still haunts me, because I know that it could happen at any time... and there’s not a hell of a lot I can do about it. Living with RA is like one big wait and see game. You wish for a good day when you have made plans, but inevitably have a bad one and then good days can often turn into bad ones... etc etc.
So, back to the point... I just wish I could foresee how things will go, as I am sure we all do in some way (if you have RA or not). Not being able to tell the future is a part of life, it’s the same for everyone (unless you have magical powers, in which case please apply within). But for some people seeing into the future means different things. Some may wish to know if they will get the job they long for, get the girl of their dreams or even just be happy. But for me, the future is only tomorrow. Thinking any further than that seems near impossible because I just don’t know what this disease will mean for me in the next few hours, let alone years. This obviously makes work very hard, and in a business where I have to plan ahead, all I can hope for is that with enough help I will get through whatever I need to do. I worry I will push myself too far now I am working again, that I will use the excuse of having good days to do as much as possible in fear of bad days to come. But, inevitably doing too much brings about bad days anyway. Sounds confusing doesn’t it? If you are not living with RA but reading this because of someone you know who suffers with it or other chronic disease, I bet you didn’t realise the sheer volume of things we have to consider on a daily basis such as this.
My mind is a whirlwind of anticipation, eagerness to get things done whilst I am well, trepidation and sorrow for the things I haven’t and couldn’t have done since being diagnosed. I am more positive about the future now, don’t get me wrong, but I can’t help but dread being taken back to that dark place where I am not in control of my disease again.
Getting used to living a ‘normal’ life is taking its toll at the moment. When I say normal, I mean being back in the routine of day time work. I am putting every ounce of myself into it, not leaving room for much else in the way of a social life. But I knew that was the choice I had to make, because whether I started my own business or not, any job would have exhausted me and it’s better to be exhausted doing something you enjoy and love than just for the sake of it. Some days I do long for when I had no responsibilities which made bad days a little easier. But then I remember the emptiness of my life without purpose. The boredom and depression that came with those long, unfilled days was exhausting in itself. At least when I lie down to sleep at night, after a long day, I feel a sense of achievement and pride now. I try to ensure I still make the effort to do things outside of work too, and that will hopefully be more enjoyable now I have someone a little bit special to share it with (more details on this soon). I guess it’s all about balance between work, rest and play. When I have worked out this formula, specific to RA sufferers, I will let you know, from aboard my yacht...  as I will undoubtedly be a millionaire who has cracked the formula to a happy and healthy life for everyone.

Saturday, 26 May 2012

Drive By

I can't believe it’s been nearly three years since I got my first motability car. For those of you who don't know what that is, it’s basically like a contract hire scheme that means the money you get for having a disability doesn't come to you but instead pays for your car each month. For me, it’s a Godsend. I couldn't manage without my car; even on good days driving is a struggle let alone having to haul my ass to the nearest bus and train or whatever involving walking, carrying stuff, uncomfortable seats etc. Anyway the act of doing anything is tough when you have a bad day with RA but trying to get yourself somewhere with no transport is even worse.
So my car has pretty much meant I can have some level of independence, I wouldn't be able to afford one if it weren't for this scheme and I certainly couldn't rely on friends and family to taxi me around to work, drs appointments, hospital appointments and anywhere else I want to go. When I first got sick, I didn't have a car as I took the bus to work. At the time I had to start asking my partner to drive me to work as I couldn't bear the painful walk to the bus and then from the bus to work. It was a frustrating situation for us both and took its toll.
So I looked into the motability scheme and tried to sort it ASAP so I could regain some of my independence. I noticed whilst trying out cars the strength in my wrists, arms and shoulders was deteriorating and has done even more so up to this day so rather than trying to painfully change gear and mess up my knees even more with clutch control I went for an automatic car. This was the best thing I ever did as driving on my worst days is not such an unbearable experience. Getting in and out of the car is another thing... but can't really do anything about that other than having some kind of walk on vehicle (wouldn't that be great?!)
Anyways over the past nearly three years that little car has meant the world to me. It’s taken me everywhere and been with me on the journey through my first years with RA. It took me home to my family when I had to leave my 'former' life behind after my first heartbreak. It’s driven me to appointments where I was told treatment was unsuccessful and appointments where I was told treatment seemed to be working. It drove me to my friends when my heart was broken again after trying to make a relationship work. And it continues to carry me to my treatment days; with my mum in the driver’s seat on the return journey (driving after a full day’s infusion and all doped up is not a great idea!)
I love that car for so many reasons and what it represents, but it also triggers some negativity. For example, I've mentioned before about the infamous blue badge incidents where I've been shunned by people, shouted at for abusing the system (as apparently I don't LOOK like I need a blue badge - didn't realise that to qualify for one you had to look a certain way!) And I suppose jealousy. The jealousy comes from driving around in a nice car, when some people think I don't deserve it. I don't deserve to have a decent car if I am not paying properly for it.
But you see, I am paying, and I am paying in more ways than you can ever imagine or see. Firstly, I pay a fair chunk of money each month to have the car, yes I PAY for it. The pain, horrendous fatigue and every other symptom I feel daily is a high price to pay for something shiny with wheels. Frankly I'd swap you the car for a wheelbarrow if it meant not living with this disease. It’s one of the small 'perks' if you can call it that; I prefer to think of it as a 'support', that comes with having a disease that is disabling. I have two bloody new hips to show how disabling my disease really is. I have come to think I'd like to take the following around with me in the car; my medical notes (which now amount to about a million pages), the x-rays of my ravaged bones and joints, my two old hip joints nicely preserved in a jar, the wrist splints, walking stick, knee supports and the stacks of pills and injections and infusion bags and machines.. Just to prove how much I do qualify for the sodding car and the blue badge.  I don't actually think all that would fit in my car, but it would shut some people up who dared to question why I parked in a disabled space or why I got to drive round in a shiny car when I'm broke. Shut it. Just shut it, move on and complain about something else you don't have. I could sit here and moan all frigging month about the things I don't have and want, but those things don't include a shiny car, more like a decent night’s sleep, a day without pain, a knee that's not the size of my head, my own hips back etc etc (the list goes on but you get the point-they are not material things, just the basic desires of anyone to be healthy and to be supported).
So let me tell you jealous individuals who crave to have a car like mine or wish you could park nearer the supermarket doors... There is so much more to life you should be wishing for and I am sure if you swapped lives with me for one single day the car and the handy parking wouldn't make up for the life changing disease you have gained in return. Just think about that before you judge people for doing certain things or having certain things, what consequences do they have to face to have whatever it is they've got? And would it be worth it? My guess is no. I need to swap my car soon (as you only get it for 3 years and then have to change it) so I am trying to decide what to get bearing in mind the adaption’s and support I need from a car (so no a soft top mini that I can't get in or out of is not an option).    Whilst I look through the brochures and others get excited or a bit envious around me I can't help but drift off and think how the hell did I get here? How did it come down to this deal that the kind of thing I worked hard towards having all my life like a good job which meant good wages and the ability to buy my own very nice car now came to a compromise... A deal where all that hard work means nothing and all I had to do to get a nice car (but with limited options) is have a horrific, lifelong, incurable condition that will probably eventually cripple me so the only thing I’ll be driving is the soft top wheel chair I will be strapped to? Ok, ok so I'm exaggerating there slightly and making jokes but it’s kinda true. So I intend to enjoy my hunt for a new car, ignore the envy, and take from life what little pleasures there are amongst the pain.