Wednesday, 20 July 2011

The Business Of Recovery

Time is ticking away for me as a non-bionic person. In about 36 hours I will have an artificial hip. I am actually considering asking them to do some other work on me whilst I’m out cold, maybe a facelift, straighten those teeth out etc. What do you reckon?
I’m coming round to the idea now, to be honest I’m so sick of the pain and discomfort and endless sleepless nights that I just want it sorted. It hasn’t particularly felt like a big deal most of the time, and then I get giant, scary waves of fear that I’m having surgery, which is quite a big deal.
I have loved the fact that once again my friends and family have rallied round showing me their support. They are determined to help me with my new business by keeping the shop open and volunteering their help for free. I even have a few handy helpers to cook up a storm on the baking front, as I direct from a kitchen stool. So really I should have nothing to worry about and my hard work isn’t about to go to waste because of ‘hip gate’ and its unfortunate timing.
I can’t help but worry though that this replacement cycle will continue throughout the future and I hate to think of having to ask for help with running my business again. Maybe I did a stupid thing by taking a leap of faith and setting up my own company. I’m sure some people would say it is irresponsible of me to think I could run a business on my own with my condition. I’d probably agree with them right now. Maybe it was me trying to dream big and forget about the potential problems. But you know what, I went for it. I took a chance and did what I wanted to do for a change. I was, and still am, up for the challenge and I will fight to make sure my business is a success. If it fails it won’t be because I have an illness. I always strive to do my best and that will continue whether I am at home on crutches decorating cakes or able to do business as usual.
I do hope that people will read this and know that if I can do it, they can too. I have pain and suffering just like the rest of RA sufferers out there, the difference is I made a decision to not let it take over my life anymore. There will be bumps in the road, and things may not always be as easy as of you didn’t have RA, but you can still make something of what you can do.
So I am packing my bags for hospital now. It’s funny as every other time I have been admitted to hospital I haven’t had time to prepare and gather my things, but as this is a planned operation I know I can be more comfortable in my own clothes and with my books to read. It’s hardly like a holiday, but I am kinda looking forward to a bit of rest. It’s a wonderful excuse for a time out that I think I have needed for a while. I love my job and everything about my life at the moment but the whole hip thing has left me exhausted and it is starting to flare my arthritis up again. So it’s nice to know that I can go into the ward on Friday and not worry about anything, my business is taken care of, my family and friends are there for support so all I need to do is concentrate on my recovery.
I know I am very lucky that I don’t have to worry about much, but that only comes from a long time of ensuring my family and friends understand my condition and need for help sometimes. I want to thank those who have wished me well, I am sorry I can’t always get back to all of you but I want you to know I greatly appreciate your kind words and thoughts. I am going to miss my comfy sofa and bed for a while... it will be up on blocks and my bed will resemble a sun lounger when I return as they are sticking some plastic back on it to stop me turning in the night. Here’s to a speedy, yet uncomfortable recovery. I’ll be back next week, hopefully, to share with you my experience of surgery (not sure how much i'll remember with all the drugs but I will try!)

Friday, 15 July 2011

Do my knees look big in this?

I understand why people may look at me and presume I am just like any other person. Well, in a lot of ways I am just like everyone else... I am interested in style and fashion, I wear makeup (most of the time) and you can often catch me out and about with friends, family or my boyfriend. But underneath those things it’s difficult to see the real challenges I face every day. I often get frustrated when people say I look well or comment that it looks as if nothing is wrong with me. If I am having a particularly bad day, it frustrates me even more. Not that I expect sympathy at all... it would just be nice to maybe bump into someone and not have to explain that even though I look ok, I feel like crap or I’m in agony and I don’t want to stand around and chat. I don’t like to be rude and if there are no obvious signs that I am not feeling well, then why wouldn’t people think it’s ok to stand and have a chat in the supermarket (even though I was secretly hoping to sneak in, rush around to get the bits I need and then sneak back out very quickly to the comfort of my home).
I know I look like crap without make up, even when I am feeling well. I have never really been blessed with natural beauty and flawless skin (unfortunately) and I often consider not wearing any make up or not making an effort with my clothes when I go out so that people may see I’m not feeling the greatest and they may just leave me be. But that sounds horrible, and unsociable, and I don’t particularly like being out in public looking like something that has been raised from the dead and put in a track suit.
Some days, I really don’t have the energy to think about what to wear (even though it seems like a simple task). The thought of trying to put a pair of jeans with a top and then finding shoes that will go... then I realise I can’t wear those shoes because they make my knees hurt or my jeans might accentuate my swollen knees so I have to start all over again! I then can’t even contemplate using my sore swollen hands and wrists to put on makeup (not that I wear that much and it requires a trowel or anything) but it does take effort that I often would rather use to get up and go to work or make a coffee. How stupid that I sometimes debate for age’s weather to brush my hair or make some breakfast! Which is more important?!
I miss those days when getting up and getting ready for the day was effortless. Don’t get me wrong, it has always been a struggle to get out of bed but for very different reasons, like a hangover or lack of sleep because of too much work etc. I really did take for granted the ability to do such simple things when I was well because, well, why would I see it as a luxury? It’s just a daily occurrence that people get up and prepare themselves for public view with a bit of grooming.
Truth is, I’d rather look like absolute crap on a bad day to save the hassle of explaining that even though I look ok, I need help with my shopping trolley or I can’t carry my bags back to the car. If you ask someone for help when you look ‘normal’ they think you are taking the mickey or that you are just beyond lazy. Because they don’t SEE your problem, you can’t have a problem. So you are less likely to get help or sympathetic people. Maybe I should just get a wheelchair for the principal that most people tend to be kind and helpful if they think you are fully disabled. I don’t actually quite need it of course but it would save a lot of hassle in the supermarket. Or I could just go mad and strap up everything, wear an eye patch, get a Zimmer frame and a neck brace for the pure fun of it that then people would take notice. Do I look ill now? Shame on you, punk on aisle 7, who wouldn’t get the bag of sugar down from the top shelf for me. Next time, ill accidentally drop it on your head or break it. ‘This is a staff announcement... Clean up on aisle 7 please’.

Wednesday, 13 July 2011


So, I’m sat in this classroom today surrounded by people at least 40 years my senior and I couldn’t help but think, ‘How the hell did I end up here?’
I had to attend this class as part of the preparation for my hip surgery. They get a bunch of patients together who have upcoming hip replacements and a physio and member of the home care team talk to you about what to expect. It was actually rather interesting and informative, but it didn’t stop the embarrassment of having to sit there whilst practically everyone stared at me wondering what I was doing there. Perhaps it’s a little strange for older people to grasp that they are not the only ones who need surgery to replace dodgy joints. I almost felt as if they were thinking I had no right to be there, rather than passing me sympathetic looks. The same type of looks I get when I park in a disabled spot I guess. I do try and relate to these people but sometimes, like today when I’m feeling quite low anyway, I just want to scream ‘it’s none of your business what’s wrong with me so stop making me feel uncomfortable!’
I got the same confused and arrogant response from the receptionist when I booked in. I had no idea what the appointment was for and I wasn’t told it was a class so she stared at me and asked ‘Do you know who your appointment is with?’, ‘No, sorry’, I replied, ‘I think the secretary said hip clinic..?’
‘But that’s only for patients having replacement surgery’ she stared at me blankly.
‘Yep, that’s me,’ I corrected her. What is wrong with these people?!
I left feeling that the whole experience was a bit surreal. Even though I know this is all happening, it doesn’t quite feel like reality... maybe it’s the ridiculous amount of painkillers I am on right now.
I had a nasty reminder this weekend of why I cannot drink anymore. I had some of my very best friends come visit and it’s just sociable to have a drink, right? Well, one drink turned into quite a few and to be honest I was having a great time and found the whole evening hilarious. I sure as hell suffered for it. I was sick (a lot) and felt incredibly horrendous for the next couple of days (in fact I’m still feeling it now) but that’s the price I have to pay if I want to join in with friends these days (and to be honest it was kinda worth it!)
I have realised that I shouldn’t put my body through that, though, especially with everything that is going on at the moment. It was a bit of an escape at the weekend, having a drink to forget about all the crap that has come about. I do miss the days where the horrendous hangovers were fixed by the time I forced myself to eat a fry up (this isn’t the case anymore, it totally messes up my whole body and I feel like I have flu for about a week afterwards).
Anyways, after a weekend of fun and the few days of hell that followed its back to reality... and trying to figure out how to run a business with a new hip. Answers on a postcard please.

Wednesday, 6 July 2011

Body Shop

I’m not going to lie; it’s been a pretty tough couple of weeks. Turns out, the pain in my hip was, as thought, this bone disease which has caused it to collapse. It is very likely that it was caused by complications from using steroids to treat my RA. Not great news then. It’s so frustrating that the things I have been taking to get me back on track and get my condition under control have ultimately caused me more problems. Although, I’m not sure what’s worse? Should I have suffered continuously for the past year and not taken steroids? Or is enduring this severe pain for (hopefully) a shorter period of time the lesser of two evils? Jury’s out.
I am constantly reminding myself when I have had my extremely fed up moments recently that I knew this could potentially happen. Well, not that I knew this specific hip thing would happen, but I knew complications would arise from time to time because of my condition and I thought I had learnt to accept them. It is like a big slap in the face though when something like this knocks you back. I have worked so hard to turn my life around, dealing with my RA, dealing with my depression and anxiety because of my condition and starting my own business to combat the potential lack of jobs my condition presents. It just seems, sometimes, what is the bloody point? If things like this are likely to keep happening then why do I bother?
The simple answer is, because you have to. It’s just life. If we all gave up when shitty things happened then none of us would bother at all and the world would be chaos. I am still not sure how I feel about having a hip replacement (as that is what is going to happen any day now as I am an emergency case because my hip has collapsed). Am I ok with having an artificial hip at 24? Well, it’s not ideal is it? But then again, it seems the less of two evils as I am not sure how much more of this excruciating pain I can take. I am exhausted, the pain has kept me awake most of the night for 3 weeks now (more so than my RA ever has) and I am fed up with struggling to walk and do things for myself. I nearly caused an accident the other day when my hip wouldn’t move and my foot was stuck on the accelerator in my car... I mean for Christ sake! It’s just a joke.
So for once I am not actually writing about my RA as such, however I do have to mention that the consequences of all this stress and pain have caused a massive flare up in my knees and wrists (which is just fabulous on top of everything else) But to be fair it’s not a scratch on the pain in my dead hip. I am walking around constantly thinking, I am going to have a fake hip. I’m 24 and I’m going to have a fake hip. What do I say to people? Will they know? Do people who have artificial body parts tell everyone they meet? Probably not. Ridiculous as it sounds I’m just trying to make sense of what this means. What it ultimately means is further hip replacements in the future, as new hips don’t last forever. Plus, it seems the other hip is on its way out too according to the orthopaedic doc. I will probably have to have this one replaced at some point down the line too as osteoarthritis has set in already in both of my hips. Oh God what a mess. What an awful bloody mess my body is in right now. I can’t help thinking in 10 years time will there be any of the real me left? Will I have had knee and wrist replacements too by then? What is this going to mean for my future and being able to start a family and stuff if I’m constantly in the body shop having work done?!
Well, I’m not a car requiring spare parts. I am a person after all, with thoughts and feelings, ones of anxiety and fear right about now. I don’t like the thought of having an operation. I don’t like the thought of not being able to work. I especially don’t like the thought of having to rely on other people to help me do day to day things until I recover. I have been doing so well figuring out ways to do things without other peoples help. I don’t like being a hindrance to others or feeling week and pathetic and going back to asking for help up and down the stairs and in and out the bath is exactly that.
Enough of the negativity. I need to put my brave face on and, once again, face this head on so I can continue with ‘normal ‘life... just with the addition of a new hip.