Life's pretty crazy at the moment. Ever since my shoulder replacement surgery (which eventually happened in June) I don't really know where the time has gone. I'm happy to say that my surgery was a success, and has made a massive positive difference in my life. For the first time in years I can actually use my right arm without feeling like I want to cut it off due to the pain. I can brush my hair again. I can was my hair again without too much difficulty. That's an amazing feeling (especially for a female). I can't believe the difference and I can honestly say I can't wait to have the other done! Fingers crossed this will happen early next year as the doctors don't really like to do the surgeries within 6 months of each other. I am now sporting two artificial hips and an artificial shoulder with another one on the way and all before my 30th birthday. Not many can say that, and I feel lucky to have been given the chance to have a slightly better quality of life.
Following my surgery I was offered a great new job opportunity, actually working within clinical trials (an area of huge interest to me, obviously) and although a full time job is tough, really tough some days, I am enjoying the feeling of living an independent life and being a contributing member of society. Living on benefits has never been an aspiration of mine, I should imagine that stands for the majority of society. Not that there is anything wrong with it because I had to have the support for a while and appreciated every penny that helped me whilst unable to work. I just hated the feeling that as a young person I should have been out there working. Every day that slipped by whilst I physically couldn't work were days where I wasn't building the future I wanted, earning the self respect I craved and gaining a sense of achievement. I felt useless and a detriment to everyone, and there was pretty much nothing I could do about it until my body decided to play ball.
I hated those days, so empty and miserable.
I have been working hard, probably too hard most days, and this is taking its toll. I don't want people to think it's easy to commit to full time work with such a debilitating disease because it's not, far from it. I still have bad days, in fact this week I am having a series of them. My right leg has decided to swell up to the size of a tree trunk and I'm dragging it around like a dead weight. All I can do it get though the days at work and then try to stay off it in the evenings. This doesn't create a great work life balance, if I want to work sometimes I have to pay the price and suffer the consequences of pushing my body to its limits. This means sacrificing my social life and everyday activities outside of work until things get better, which sucks (to put it mildly). But I hate letting people down and I've committed to a job and will be there unless I absolutely can't do it. They are supportive in letting me work from home on the odd occasion, like the other day where I physically couldn't get out of bed. This is really important and a massive support to me because it means I don't have to let people down if it's a mobility issue, and I urge those of you who are struggling to really seek out the support your workplace can offer of its a job that can be done remotely.
There are some days when the alarm goes off at 6, I've had barely any sleep due to pain or discomfort and I think to myself what the hell was I thinking? I can't do this. Then I take it one step at a time and drag my ass into work and slowly the day gets easier and I feel a sense of achievement.
There are other days where the fatigue and exhaustion take over and I honestly don't know how I push past it. That feeling where I just want to lie down or slump in my swivel chair and sleep. But I get through it, by munching away on high energy foods, and caffeine! I don't think many people realise that my daily routine incorporates a minimum half hour nap, I just can't get through the day without it. It makes all the difference in being able to stay awake past 7.30pm if I have a proper rest and sleep after work. I then get a few extra hours of energy to be able to do things in the evening with my friends and family (I'm still nodding off by 9.30pm most evenings but better than falling asleep in my dinner!)
I don't say these things for sympathy, it's simply an honest account to raise awareness of this awful disease to those who see me and think I must be OK, or the famous 'you don't look sick'. I've made it pretty clear in my posts that just because someone looks like they have it together on the outside, you have no idea what is happening on the inside. I tell you these stories in hope that someone suffering the same fate as me may realise they can do it. They can have whatever life they chose with RA if they are willing to compromise and do things slightly differently. It's never going to be perfect and I'm never going to be 'better' but I can make it work. Don't deny your body what it needs.
Anyway back to my 'tree trunk' leg... I need an ice pack, STAT.
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