Massive Fat Steroid Day

We ladies seem to continuously have ‘fat’ days. The days where no matter how many times you ask your family and friends ‘do you think I’ve put on weight?’ and they reply ‘don’t be stupid’. I seem to be having a collection of these days at present. I am not a particularly vain person, I like to look nice but I’ve never really cared about my weight before because I haven’t needed to. I have been blessed with a pretty good metabolism and don’t seem to put on much weight even after a few quarter pounders with cheese and chippy teas. However, since I began taking steroids last year, my weight has increased back to my ‘normal’ amount.

When I say normal, I mean the weight I was at before my RA ordeal began. I was a healthy weight, not too skinny, just slim, and when RA hit I lost a lot of blubber. I have mentioned before about my weight dropping to 6 stone before I was treated with steroids and had the help of a nutritionist. But it seems being back to better health has taken its toll on my backside. The problem is, when you’re on steroids, i have found no matter what you do or eat, you can’t seem to shift those couple of pounds or inches you gained in order to not feel in excruciating pain every day. It’s a catch twenty two, feel bit better and gain some timber, or feel like you want to die but have an enviable waist celebs would be proud of.

I seem to have a fear of photos being taken of me and placed for all to see at the moment. I fear that people will scroll through images of me from recent times and come across one of me from last year when my weight dropped and think ‘my, she’s put on a bit of weight’. I wish I could put a disclaimer on all my pictures saying, ‘the slightly larger bum, tum and hips and hamster face are due to steroid use, please don’t take this as actual representation of my normal self’. But frankly, that’s ridiculous.

So do we complain about the extra bits of flab we have gained in order to feel a bit human, or be thankful that the price to pay for decrease in pain only means people will whisper about how ‘healthy’ (I think this means fat)we look, compared to before?

Stupid salad.

Complete Madness

I can’t describe the pain and stiffness that comes the morning after redecorating. Yesterday, I painted some walls and this morning is hell. It’s funny because I’m getting pain in muscles and joints that I didn’t even know were there. I know redecorating is quite a difficult task for even a ‘normal’ person but I didn’t realise it would be so bad. I am reluctant to paint the ceiling as I don’t know if my arms will be stuck above my head.

I have taken on a daunting challenge to further my new business. I guess after 2 years of not working I’m trying to cram as much work as possible into the time that I am well. It’s amazing how much pent up energy and enthusiasm I have for work. I have utterly hated sitting around waiting to get better and not being able to have any structure that work brings to your life. I know many people would rather not work and live a life of leisure but it’s certainly not for me. I can’t and won’t do it anymore (not that my life was really full of leisure the last few years anyway). Achieving little goals is perfection for me. It makes me happy when I complete a task, even if I am in pain afterwards.

With the help of family and friends I am opening a little kitchen where I can bake my cakes. Preparing the unit for customers has given me that drive I desperately needed all this time. I am excited about the future and hopeful now I know I can achieve anything with support and some painkillers.

People may say I am mad, or can’t be that ill if I am doing all this but to be honest, I don’t care. I have lived my life in the shadow of other people’s successes for far too long to sit back and accept that I can’t do anything without even trying. I don’t want to be the girl with RA. I would rather be known as the girl who runs her own business and is very successful despite having RA. Isn’t that a better person to be? I know myself well enough to realise when I must rest, take more meds and generally slow down (although I don’t often take my advice).

I will push myself to the limits of what I can do because happiness to me is complete madness. A busy life means I don’t have time to sit around and think about the sadness that has haunted my life recently or the possibility that things will get worse in the future. I take one day at a time and that’s the only preparation you can really have for life with RA. I often receive emails asking how I do what I do, but there isn’t really an answer. You just do it... pick yourself up and get on with it as best you can and I strongly believe we are all capable of that.

That ceiling is really bothering me though... I know I shouldn’t do it but I can’t help starring at it and thinking if I just do a bit...

Forty Winks

I am feeling incredibly frustrated at the moment. My body seems to be packing up each bit day by day. Could it be just a flare up or have my joints decided it’s time for some more rituximab? (which I’m not booked in for another 7 weeks). Either way, it’s driving me insane. I have barely slept through the night for a couple of weeks. I think the lack of sleep is what is most frustrating. I toss and turn from around 3am then finally decide to get up around 5.30. I simply cannot lie and star at my annoying walls anymore. If I get up and move around sometimes it eases the pain. Sometimes it doesn’t. Either way I am awake at 5.30am with the whole day ahead of me. There is not much you can do at 5.30am, did you know that?

My neck is creaking, my shoulders are grinding, my wrists are throbbing and my knees swelling and there’s pretty much sod all I can do about it. Maybe having work to do is taking its toll after doing so little for so long. But there isn’t a chance in hell I’m going to let the pain deter me from working again. Despite the fact I want to throw myself in a whole several times a day, I am the happiest I have been in a while knowing that I have achieved something in my day.

As the clock strikes 6am, I am usually on my first (or second) coffee. I know it’s not necessarily recommended to drink coffee when you have RA, but really what are you allowed to do without criticism from someone who tells you its wrong or makes it worse? My morning coffee gives me a little caffeine buzz and in combination with the release I feel when the painkillers kick in, for a short while I feel ready to face the day. It’s frustrating being alone and awake at such an unearthly hour. I never really like being alone, I like to know there are people around or at least conscious.

I get to the point around 8am where I don’t really know what to do with myself if I don’t have work to do. My emails are already checked by then, clothes are already picked for the day and I am running out of tasks. I then create tasks to keep me busy until around 11am when I realise I am exhausted and have to return to bed to lie down. If I have things to do, this keeps me away from my bed. It’s very hard to ignore the calling of soft, comfy sheets and the chance to rest my aching joints when you have little else to do.

What I don’t understand is why you can only take painkillers every 4 hours... when they only work for around 30 minutes (for me anyway). I wait the long 3hrs 30mins for my next dose knowing that it won’t really make a difference. It’s almost like I take them for the sake of it just on the off chance it will provide some release. Bloody pills... That probably makes me an addict in doctors’ terms but I’ve got other things on my list to sort at the moment.(Plus they keep writing me prescriptions for the damn things).

The frustration of not having a normal sleep pattern is exhausting, and I feel sorry for whoever goes through this (for whatever reason). There is nothing worse than tossing and turning, knowing the night has ruined the following day before you’ve even got there. The more you think about it, the less likely you are to sleep as well. Then you get into a never ending argument with yourself to ‘just bloody sleep’. I try the usual things, reading etc but trying to read a book at 3am just makes me even more angry. Or I actually start to enjoy the book and can’t put it down, which defeats the object.

I do not wish to take sleeping tablets or anything else to knock me out; I just want to sleep... sleep when I am supposed to be sleeping. Not during the day or napping when I feel tired. Just a full eight hours a night would be dandy. If you’re listening subconscious, do me a favour and sort it out or else we will be having serious words soon...

High Price for High Heels

So my life has been pretty hectic the past few weeks, everything seems to be changing (for the better that is). My business is finding its feet (slowly) and it’s great that I have focus and a reason to get up in the morning.

Meanwhile, everything around me seems to be changing too. Friends are getting married, having babies and buying houses. I am staying put for a while. I have reached the point after 2 years where I am comfortable and finding my own feet. I need to let the dust settle on what has been a long road to recovery. There’s still a long way to go, but I am getting there.

After a Saturday night of enjoying myself at my friends’ engagement party, I am suffering for it. There is a higher price to pay for good heels when you have RA. I wore some fabulous heels, for the first time in ages may I add. I managed a couple of hours walking like bambi. I could feel my knees swelling by the minute but it was worth it to look and feel good for a change. Of course the days of suffering have followed that always follow a good time for me. I seem to be punished for enjoying myself on regular occasions. Why is that? It’s rather annoying. Being in a coma for a day is not a great outcome after a few drinks and wearing high heels but when I think of the alternative, missing out on having a great night with friends, I know what I’d choose every time.

It’s amazing to see all my friends thriving in life. It’s a lot easier to be overwhelmingly happy for them now I feel a bit better! It’s always difficult to celebrate the achievement of others when it seems like your life is falling apart but it’s true what they say, good things come to those who wait.

I have been asked to do a talk in front of my hospital governors about my condition and the importance of rheumatology services tomorrow. I am honoured that they would think of me to represent us RA sufferers and will do us proud (I hope). Although, I have to say I am a little nervous. I do always get this little part of me that is saddened when I discuss my condition. It brings back memories of the long road I have travelled since my diagnosis. My worst fear is balling my eyes out in front of them and making a complete tit of myself! (But I do that on most days anyway). So I will let you know how my speech goes, hopefully those movie buffs at the Oscars will be watching too (I’ve always fancied winning one, maybe next year).

I hope you are well my friends and making sure you are enjoying yourselves, even if a bit of suffering follows. Believe me, it’s totally worth it when you can join in with your friends dancing to ‘come on Eileen’.