In case someone somewhere reads it and can actually relate. Don’t get me wrong, I am so privileged to have such a caring and considerate group of friends, and my family are incredibly supportive, but none of them understand. What goes on in my head and what I let people see are two totally different things. I don’t let people see the person who I am right now. Right this very second –in bed early looking at high heels I know I can’t walk in and maybe never will. Why would I want people to see me like this? I even told my own dad not to feel sorry for me. Don’t pity me. Don’t even tell me everything’s going to be alright with that face, just please tell me things are shit at the minute, but they will look a lot less shit one day. The operative word being look, maybe things will always be this shit, maybe shitter, but when I have a happy head on, they won’t look so bad.
For two and a half years I’ve been living with quite an aggressive and unpredictable form of rheumatoid arthritis; a rare kind which not only affects my joints, it affects my heart, my liver and my lungs. My condition is actually called Adult Onset Still’s Disease but as it’s rare I will just use the term RA. Since living with RA I’ve also developed Anaemia and I am calcium deficient –along with a number of minor problems which come and go- which are consequences of the medication I take every day.
You can guarantee every year, bang on time, this time of year, I get really low. It hasn’t been proven that cold weather heightens the symptoms of arthritis and RA but –after chatting with my favorite nurse- I found out that Rheumatology clinics and hospitals do seem to have a lot more patients to deal with at this time of the year. A lot of people who have no problems with their joints do say they can feel a little achy during the colder days, so it is understandable that for RA sufferers it can be a little more uncomfortable.
RA is a very up and down illness; you go through your good days and you then unfortunately have to endure your bad days. Which for me are occurring at the minute. My good days however, are when I’ve had a fabulous steroid injection jabbed into my backside. It’s the best feeling of my life; I feel so normal. On top of the world even; it’s amazing how much I can do during these 6-8 weeks of steroids. No wonder old people love them so much; steroids are so amazing, they have an instant effect on my body and I have never felt a love for a drug so much in my life –haha. I’m getting carried away no just thinking of the summer time when I can get my next jab.
Steroids do have huge complications if used long term so unfortunately, RA sufferers only get jabbed during a really bad phase and are used mainly at the beginning of a medication increase to help kick-start the drugs. These drugs are my life, if I miss a week, I’m set back for 4 more. I’m on the highest suggested dose of Methotrexate, a drug described as a disease controller. It does not fix my problem, nor does it help it go away, it just hides it. Like Tippex.
On average, I take around 10 pills a day. On my ‘big pill days’ I take around 20. I’m on two types of strong painkillers every single day; without those, I’m in pain, every second, of every day. Which begs me to ask the question, when will I stop increasing my Methotrexate? With the painkillers, I get around 4-5 hours a day of relatively pain-free joints.
On an average day? My feet hurt regardless of what painkillers I take, I cannot put my shoes on without a shoe horn –vom- and I can’t run comfortably anymore. People will see me and just assume I’ve got some dodgy blister on my foot or I’ve sprained my ankle, they don’t realize I limp every day; be it a tiny limp at 11am or an excruciating one at 5pm –that’s the thing with RA, symptoms are heightened early morning and evenings, what a shitter. I can’t use my wrists the way I used to, now I hear you ask, ‘What the hell does that men?’ but, when you pick your plate up with your Sunday dinner on it, the pressure of the plate is taken by your wrist. When you pull/push open a door, the same pressure is there. My dad puts my plate onto my forearm as I cannot pick them up, I open doors with my arms/elbows/whole body even. I cannot bend down, I cannot cross my legs, I cannot help myself up, I cannot lock my door sometimes, I cannot moisturise sometimes. I often use my legs to get my shampoo/conditioner out the bottle; will companies ever make bottles/containers/jars suitable for old people!? Because lets face it, my outer exterior is 21, my inner however, probably around 61 I’d say. Getting there.
So here I am, looking at some high heels I cannot walk in, seeing my friends going out and having fun and generally feeling sorry for myself. But every now and again are we not entitled to feel sorry for ourselves if something is getting in the way of the person we want to be? We all have our problems, large or small, and I’m not saying my problem is the biggest in the world, because I know it’s not, but sometimes you just need people to say ‘Yeah, it’s shit for you at the minute, have some ice cream and a good cry.’ There is no quick fix for bad days, but I get through them; if your feeling crap and low, just be crap and low. I’ve learnt to just feel what I feel.
