Saturday, 18 April 2015

Strangers

Years have passed since my last post, and for that I can only apologise and hope that I haven't left readers short of further answers to a life with RA being less complicated and painful. In truth, life took over for a while. It seemed I needed more experience of living this life with RA before I could continue to write about it. So much has happened since my last note, both positive and negative experiences. Rheumatoid Arthritis has received mentions in the news and perhaps people have become more aware of the disease. But you can never be fully aware of anything until you experience it yourself, right?
I am now 28 years old, its six years to the month that I was diagnosed with RA. That time now seems so long ago and almost a different life. Most of the time during the early stages of my disease are a blur. A very real blur of emotions and pain and change, but a blur nonetheless.
It would probably be helpful for those of you in those early stages of RA to hear from me that six years on I am miraculously recovered and living the dream, but this sadly isn't the reality. Whilst I have dealt with my pain, grown with it and began life on a different path, a full recovery is not the case and I am sure if you know enough about the disease you understand there is no miracle cure. Living with RA is not necessarily about a cure, just attempts of finding the treatments and tweaks to your lifestyle that help you manage it. I believe that in the six years since my diagnosis I have slowly stumbled across things that have helped me, and made life a little easier. The main thing that I believe truly helps you cope with this dreadful disease is understanding. That means having the understanding from the people around you of what you are dealing with. I don't expect my family and friends to fully understand, and they probably never will. I still find it frustrating, even now, having to explain why I might not be myself one day or why I don't feel so great. Sometimes it takes all my patience and strength to not scream at people 'I am living with a debilitating and painful disease that has not been cured since the last time I saw you!'  But then I remember, those people around you don't know what it is like and it's not their fault they don't get it. Perhaps I should explain a bit more when I am having a 'bad day' but that in itself is painful and time consuming and would probably bore them. I bore myself sometimes with the explanations i prepare when someone asks 'How are you?' because in my head the answer is often 'I feel awful, exhausted and low because I haven't slept for days properly, my body is aching, my joints are clicking and grinding when I move, I am struggling to concentrate with the pain killers i have taken...' etc etc.
 Communicating how you feel is not an easy task for anyone, but when you have a disease you are battling long term, its even more difficult. I mean, how do you put into words 'arghpghffffjzsbsk' cause that's the only expression that comes to mind sometimes. It's a kind of non feeling that a word hasn't been identified for yet. It's beyond tired, beyond pained, beyond fatigued. And only those who are on this RA journey will understand that.
 I can say that at this point in my life, I am very lucky. I have a wonderful support base from my boyfriend who is remarkable at making me feel happy even at the worst of times. He too understands what it is to live with pain due to his own battles with a condition affecting his body and maybe that's what makes this relationship work. We can both appreciate each others 'bad' days, cheer each other up and ultimately understand each other without having to explain. He knows when I am low, knows how to help (through nights where only a hot bath at 3am will ease me to rest or an afternoon nap may interrupt a day out) but it leaves me comforted and happy that I don't have to feel anxious in saying I need some help or a rest. He knows that I would, and have, done the same for him when needed. I am not saying that everyone suffering with RA or a disease should be with someone who suffers the same, but it makes all the difference if your partner is understanding of it and doesn't pressure you to do things you cannot or don't feel up to.
 So where am I now? I am in a good place. After trying my hand at running a business for a few years, which I will tell you about some other time, I now am back working in a full time job with an employer that supports my condition (again another great way of coping with my disease is having that support, that people at work know I have limits and are kind to me and understanding of 'bad' days). Being part of the team at work has done wonders for my confidence and I feel like I have a purpose in life. Whilst some times are hard, and yes I do struggle and get tired, waking up and knowing you matter and are needed somewhere is preferable to waking up on benefits with very little to keep you going in life.
 I have had both hips replaced, a few years ago so I may have already told you this, but currently I am three weeks away from my next surgery. Yes, ladies and gents, I will have a new shoulder to match the new hips in a short while! Its been a long time coming I think, I have had pain in my right shoulder for a while but it has worsened (and worsened) over time to the point now this is my only option. Everything else has been tried and tested to prevent a replacement (which has risks of course) but I am of the belief, as I was when my hips were replaced, that why hold out till I am older for fear of the unknown whilst I could have a better quality of life now? Now is my time, now I am still young and able to enjoy the things I might not be able to in years to come. I don't want to miss out on any more of life.
 With my upcoming surgery and recovery time I am sure I will be with you again soon. Stay happy and keep pushing for understanding from those around you and life will seem a little easier.

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.