The Irony

It’s been an eventful few weeks in the world of me. I successfully moved house, thanks to the help of my super boyfriend and family, my business is starting to build up nicely and I am very happy in my new home. It’s amazing how much more independent I feel living away from home again. Don’t get me wrong I loved being at home with mum but there comes a time when everyone just needs their own space and the ability to feel a bit more ‘grown up’. I certainly do feel like a grown up, I forgot how thrilling washing, hovering and food shopping is...

But seriously, with the support of my boyfriend we have become a tight little unit in just a short space of time. We work well together, he understands my need for support with things like shopping and gives me a break by doing his fair share of household chores. He even cooks which I know is a bonus! (not that I mind cooking but having someone cook for you or with you is kinda special don’t you think?) The new house works well with my condition too, having an en suite means it’s not too far to the bathroom when morning arrives and I struggle to get out of bed.  It’s amazing that I didn’t even think of that being an issue but it really helps! The house is easy maintenance cleaning wise, meaning less effort required from moi! And the sofa is super comfy (for those ‘can’t quite get off the couch’ days).

So with all this loveliness, sods law saw an opportunity and struck me down in my prime. I have mentioned on the facebook page about my ridiculous ‘granny hip’ giving me grief the past couple of weeks. It started with a bit of an ache and has quickly progressed into a full on, excruciating nightmare. I haven’t slept properly in days, I feel nauseas, dizzy, unable to walk and pretty much at a loss of what to do.  I can honestly say this is the worst pain I have felt since diagnosis. Being convinced it was due to my RA, I got on the phone to my specialist and she squeezed me in for an appointment today (for which I am incredibly grateful).

To my surprise, the pain I am experiencing may not be my RA flaring after all. Nope, something entirely different and a potential new one to add to the list. Turns out long term or overuse of steroids can cause something called Osteonecrosis. Yeh, I was stumped too. I know the dangers of using steroids long term and have been warned blah blah but the reality is I was in so much pain when they were prescribed that I would have tried anything to get better, and the steroids actually seemed to help. I hoped I wouldn’t be on them forever and was reassured that as my condition came under control I could gradually come off the darn things.

All has been going well with the decreasing of the dose, no added pain as such (touch wood this continues) until the damn hip started giving me jip. It’s a complicated condition (look it up) but Osteonecrosis is a disease of the bones which can cause death of the bone. Blood flow and tissue are affected around the hip joint causing the pain and if left untreated the bone can collapse. Bloody brilliant. I should have expected that the pain I had been feeling was slightly different to the usual RA flare. It’s not for certain that I have the necrosis-thingy yet; I am having tests urgently to determine if this is the case, however I am slightly concerned that treatment for the condition is none other than surgery. Now you can probably imagine that hip surgery and running your own business don’t mix well but I am terrified that I will have to be treated in this way if what the specialist suspects is correct.

So how ironic then that the very treatments that have made my RA improve drastically over the past year have ultimately messed up another part of my body that now may need fixing! I can’t comprehend the hilarious time my body is having right now trying to sort stuff out. My brain probably doesn’t know where to start. All I can hope is for the relief of this pain because it is literally driving me insane. I need sleep to function and I am starting to lose the plot for lack of it.

So, as we throw a new one into the mix, stay tuned for the results of Necrosis Factor 2011... In the mean time ill be hobbling around with a wooden stick. Yes, you read it right, a wooden stick. I am so bloody cool.

Home Sweet Home

After living back at home now for nearly two years, I have decided the time is right to move on and in with my partner. I have been well looked after by my amazing family whilst back at home and so grateful that I had their help through the darkest times of my illness. They took me in when I had nowhere else to turn, asking for nothing and I love them so much for that.

It feels like I’m back all those years ago preparing to leave home for the first time when I started university. There is a hint of anxiety as well as excitement as I cannot help but remember living away from home before, when my illness started. I have never wanted to feel that lonely again and leaving home reminds me of that. I will no longer have the company of my mum pottering around, endlessly helping me with things like washing, cooking etc. I will be starting my life as an adult again, gaining back some of the independence I lost two years ago. I am prepared to tackle adult life again; I know it won’t be easy. You always take the things your family do for you for granted when you’re at home.

What frightens me the most is anticipating another huge flare, where I cannot cope and have to rely on my partner for support. That is the main reason I returned home in the first place as it got too much for us both to cope with. I know things have changed, I am more aware of my limitations and my partner is more understanding and knowledgeable of my condition but I still can’t help dreading that it may all get too much for us both again.

I suppose what I have learnt is to take one day at a time. You can’t predict or be scared of the future because you just never know what will happen. Unfortunately, what will be will be. The only way I can prevent things getting as bad as before is by accepting when I need help (and asking for it), not doing too much so that I get tired and stressed which causes friction in a relationship anyway and communicating how I am feeling. For so long before, I locked myself away from the company of my partner because I was ashamed that I was no longer good enough for him, he deserved better, blah blah. I didn’t want to ask or accept help, I didn’t want to talk, I just wanted to pretend that it would go away and things would get back to normal.

Whilst it was devastating when we were apart, I know now that it was the best thing for us as we wouldn’t be as understanding of each other as we are today. My partner accepts me because I accept myself (if you get my drift). You can’t be in a relationship when you aren’t comfortable with your own situation as all those feelings of anxiety rub off on the other person. I am stronger than I ever have been before (mentally I mean!) and I am going to give this a bloody good go. After all, if you choose to hold back all your life because you are afraid you will never get anywhere right?

I still cannot believe that only a year ago I thought my life was as good as over. I was bed ridden, very poorly, jobless, boyfriendless, homeless (if it weren’t for my family) oh and let’s not forget penniless! But for all those who might be going through this now, please take something from my story that even though it takes time (often longer than you want it to) you will move on. Things will get better, perhaps even better than before.

Fighting A Losing Battle

I am so completely fed up today. For a long time now I had overcome my fatigue so that I was able to have relatively normal days, without the need for sleep constantly. However, since I had my last Rituximab (just over a week ago) the fatigue has returned, with a vengeance. The pain I can deal with, or at least pop a few pills for and hope for the best. But the awful thing about fatigue is that there is pretty much sod all you can do about it. There are no fuel type meds or tricks to give you that boost of energy you desperately need. It’s not a case of pull yourself together. And I stress that it is NOT tiredness. For those of you reading who may not have RA but know of someone who does, please don’t confuse fatigue with not having a late night or not enough energy to go to the gym. The only way I can describe it is like an all consuming, energy stealing cloud constantly fogging your brain.

You can’t think straight, sleep doesn’t help, your brain and body feel like mush warmed up and it stays with you despite ten cups of coffee or seven pints of red bull. Fatigue is, in fact, a disease itself. Many people suffer from it without having RA and it is, to put it bluntly, a living nightmare. The point is though, you don’t actually feel like you’re in the land of the living. You’re functioning, walking around, breathing and talking, but you don’t know quite how you’re doing it. Ever had those moments when you have a mind block when driving and can’t remember how you got there?

Getting fatigue under control is an impossible task. It’s not a case of having a nap or going to bed early. It just clings to you. You go to bed tired, you wake up tired. A never ending cycle of a complete feeling of uselessness. I got to a point a few months ago where I could go without sleeping during the day, I was still tired but I could cope. These past few weeks have been quite different. I literally get to a point where my body and brain give up and crave a rest. I guess it’s like ‘the wall’ when you run a marathon, except however hard you try, you can’t break through this one.

I am hoping that the wall will come down piece by piece in the next few weeks following my treatment as I am at the end of my tether. It makes you moody, agitated and irritable when you’re tired, but fatigue makes me an impossible person to be around (I’m guessing). I think it’s because I don’t know what to do with myself and I hate that I am trying to fight the urge to collapse but I’m not winning. I wish someone could come up with a cure for this ridiculous situation. Try as we might to fight RA, other things that come into the equation just take the biscuit.