In Vogue

Here’s a sneak preview of next month’s Vogue cover. Jokes. It definitely isn’t fashionable is it? I don’t like to share pics of me having treatment usually but something struck me yesterday when for the 1000^th time I got the death stares as I parked up in a disabled spot and managed to get out of the car without falling over. I could tell what they were thinking, exactly what every other narrow minded person thinks when they see a ‘disabled’ person with no visible disability, ‘There’s nothing wrong with her’, or ‘The cheek of her parking there!’, or ‘She must have borrowed someone’s blue badge how disgraceful’.

I wish I could carry a big sign around my neck to explain my condition to people so I didn’t have to put up with those looks of disgust but frankly there wouldn’t be a sign big enough that I could carry and to be perfectly honest, its none of your God Damn Business. So this is my attempt to show the reality of arthritis.

Not an old lady with a walking stick, not someone’s grandmother needing help opening a jar... but a young woman strapped up to machines in hospital. THIS is the reality of arthritis for some people. It’s not always visible unless you are in this position being fed meds through a drip. This is what we have to go through time and time again, not only in hospital with the help of kind nurses, but in our own homes as we self medicate with injections and tablets and hot and cold packs every day of our lives.

If you have ever frowned upon someone you think has no visible sign of disability using a parking space or getting special privileges in an airport (always remember the time I got wheelchair assistance to my flight and the gasps when I miraculously got out of my wheelchair and walked onto the plane), it’s OK. To be honest, it takes something like this illness to happen to you or a loved one to understand and appreciate that not all disabilities are easily seen. I suppose I have always wondered what is wrong with a person when they get ‘special privileges’ for no apparent reason, although I can’t see how parking a bit nearer to the shop door is really that much of a privilege anyway. Are these people jealous because they are so lazy they want to park 2 feet nearer to their destination? Or are they so bored with their own lives they are constantly on the lookout for someone to argue with?

Next time you see someone who claims to be ill and has a disability, disregard your cynical thoughts for a moment and remember this photo. Perhaps that person has been strapped up to machines the day before or had to take a load of tablets that morning or has had the most awful night sleep because they are in so much pain. They might not look like it now but arthritis and other conditions don’t affect you all the time. The pain and symptoms can come and go. Walking around a supermarket might induce that severe pain we go through so why deny someone the chance to take a few less painful steps back to their car by parking a bit closer to the door.

Open your minds cynical people, don’t be disgraced by something you know nothing about I beg of you. Meanwhile, I’m still waiting for the call from Vogue....

Round Three

So Friday will mark the beginning of my third session of Rituximab. My thoughts on the drug are quite positive so far, although I still can’t decide if it’s the high dose of steroids I’m still on that are making the difference. It will be interesting to see, as all being well I will be able to reduce the steroids again after this treatment.

As I’ve mentioned before, pain has come back barging its way into my life recently. Don’t get me wrong, it’s not quite as bad as when I have been at my worst. But it’s still there. Niggling away at my knees and wrists and hands and ankles and shoulders and hips at three am. The nights are becoming a drag to be honest. I’m exhausted but can’t sleep well because of the pain, so I get up at the crack of dawn to keep moving my joints but by mid morning feel so tired I cannot see!

As frustrating as it is, I made the decision to start a business that suited my level of work and is something I enjoy and I am determined to make it a success. So pain will just have to keep niggling away as I’m too busy to give in to it right now. I just wish my body would give me a break and let me get on with my life and make a go of things. I am trying so hard to do something, be someone that I am proud of but this sodding disease just wants to hold me back when anything important comes along. Ever have that feeling when you’re lying awake in the middle of the night where you just want to scream at the top of your voice? I seem to be having that feeling every night at the moment.

It’s annoying me and its annoying my loved ones. I have to get up when I wake as the stiffness makes things worse so I creep around in the dark trying not to wake anyone. I deprive my boyfriend of lie-ins at the weekend with my six am burst of energy then want to sleep again by eleven am. God I annoy myself even thinking about it.

Anyway, maybe my body knows it’s coming to the end of the treatment cycle and is craving more. You see, the problem is I can’t find much information about repeat treatment of Rituximab and the third cycle specifically because it’s so new. Not a single person I know of is this far along in Rituximab treatment, even my doctor admitted I am the furthest patient along that she knows of in the whole of the midlands. So I guess I am playing guinea pig from now on. Wait and see is such an appropriate term for RA don’t you think?

Here’s hoping that round three will have an even bigger improvement on my miserable state at present and allow me to do the one thing I want most in the world... finish what I started all those years ago at uni where I vowed to make something of myself.

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.