Dear Diary

Dear diary,

We’ve all tried to keep one of you, and we’ve failed. Vowing as a little girl when I opened up a “Girl Talk” magazine with a free diary (the one with a lock that you could “keep everything safe away from prying eyes” when in all reality your little brother could open it with a hair clip) that I would keep one of you forever.
Well, now I have the chance to make a helpful diary, one that I promise not to fill with i’s dotted with little hearts, and a list of guys that I secretly (or not so secretly) have a crush on. I promise!

18th December 2013.

Dear diary,

I’ve kept my promise to keep you updated!

In other news, on Monday I spent 5 hours in Accident and Emergency, at the hospital. Getting to hospital at 10.30pm and not getting home till 4am… Fun.

Why was I at A&E?
For those people who know me, they are aware that I am incredibly clumsy and have broken my limbs many times and I may as well have permanent residence at hospital, but this time the visit was Lupus induced.
Yes. The bloody disease was really getting the better of me on Monday, if there was a day that I could’ve done without Lupus, it was that day. Lupus disagreed and decided to play hell with me.

Around 5pm, after a very long day my left foot started to ache. I’ve never had lupus in my foot before, unless it’s in my toes, so I thought nothing of it given that I was in flat shoes all day and sat down a lot.

6pm came… The pain was getting worse. It felt like I had previously been sat in an awkward position and my foot had gone to sleep or been strained.

7pm: I’m playing with my niece, she accidentally steps on my foot. At this point I realise how painful my foot is. Then I notice the rash, that’s the big give away, hello Lupus!
I’m a fairly stubborn girl, so I was refusing to let it get the better of me and I just carried on playing “stop touching the baubles on the Christmas tree” with a toddler. (Toddler won)

I got home and I was limping. I could walk though, on the condition that I walked with my foot turned to a side a little I could walk with little pain and I spent the rest of the evening relaxing my foot, taking it easy.
Usually when I take it easy with a flare up, I am the one in control to a certain extent. If I relax and move long distances only when I really have to, it’s manageable, I can usually fall asleep too – the Lupus flare ups exhaust me, but if I can sleep through it I usually wake up feeling a little better.

I sat playing video games with my brother, which is a rarely seen sight:

1) because we are siblings and being in the same room without parental control for longer than 2 minutes is a dangerous thing, world war 3 is about to commence.

2) because when I have a flare up and I want to relax and immerse myself into the gaming world to forget the painful reality, I usually can’t because the flare up affects my hands.

This time I just had the rash on my hands, no pain or swelling, much to my surprise.
An hour passed and I was in increasing pain. I sat with a hot water bottle on my foot, as my foot started to swell. I couldn’t move it. I couldn’t walk. I couldn’t even rest it on my bed in any number of positions. I don’t like taking the emergency steroids that usually work for pain relief (they’re anti inflammatory steroids, prednisolone) as they reduce the swelling, but I knew I had to take them. I took my dose recommend by my doctor for “emergencies only” and waited… And waited… And waited… I kept checking the time. “They’ve usually worked by now” – I was still in so much pain. Completely incapable of walking now.
I sat sobbing for a good 20 minutes, I felt so sorry for myself, I’d had such a hard day, I wanted to be in bed all snuggled up, relaxed, I just wanted to fall asleep and the day would be over. Lupus had other plans.
Even though I am more than aware that crying wasn’t going to help, and that it would possibly make it worse, I couldn’t help but have a good cry! I felt better for having a good cry, I felt so upset that my pills hadn’t worked, that I couldn’t walk, I knew how bad it was from then.

After waiting a very long time in hospital I was finally seen to. “We’ll give you pain relief and anti inflammatories, then we will pop back in 30 minutes to see you and ask how you feel” … With that, the nurse went away and returned with a dose of painkillers and told me to take another dose of steroids.
Her return: “any better?” – yes, a little, but I still hurt like hell!
“I’ll be back in a minute”
And she came back with more painkillers.
“Take these. Back in half an hour to check on you”
At this point I’m pretty sure I’m going to rattle and that I’m the sole reason the hospital will have a shortage of pain relief pills, and I’m feeling rather drowsy, mixed with the fact it’s 3am now, I feel horrible, give me my bed!
Doctor comes in – I’m feeling much better now.
Doctor walks off and returns with some more steroids in a box for me. “Six of these, once a day, for three days, on top of your normal medication” (don’t do this because you’ve read it UNLESS you’ve been told to by a medical professional, you nugget…) SIX tablets. I definitely rattle now. I’m taking 9 pills a day?!

Having taken the dose today, I’ve not had one single problem! I’ve been able to move my right wrist – I have no use to very little use of it on a good day at best normally, my foot is a normal size again, I’ve had no rash. I’ve felt great. I’ve felt normal! Exhausted because that’s my side effect of all these pills, however. Boo.

Obviously, this is only short-term relief till I can finally go home in the new year and see the specialist and make him aware that my current medication isn’t working anymore.

This is a tough battle, Lupus. One that I intend to win!

Wednesday 11th December,

This week has been, and will be a tough week. I sadly lost an important person to me, it has caused upset and stress, which flares up the stupid disease that I have.
Going back to one of the very first posts that I made, I recall mentioning that the use of my right hand/wrist has become a problem since I was first diagnosed with Lupus, this is a huge issue when you’re a righty, not a lefty!
I don’t think people realise just how disabling this illness can be. So I’ve made a YouTube video to emphasise just how much I physically cannot move my right wrist in comparison to my left. You’ll also notice that I’m having a flare up, you can tell by the rash along my arm. My right wrist is constantly limited to movement, flare up or no flare up. That is what makes Lupus a disability for me.
I was actually left very upset, I was told that I was making it all up, that I am just lazy and I don’t have a disability. So what, people actually a believe that I want to live like this? You actually believe that this disease is optional?
I think we as a society forget that people can have disabilities that we cannot physically see for ourselves. Disability extends further than someone in a wheelchair. So the next time you’re asking me or somebody else “why I or they deserve your seat on the bus?” When you’re sat on seats that state “please give up these seats for the elderly, pregnant or less able” please ask nicely, without snarling at us. There are liars in this world unfortunately, but give us the benefit of the doubt, I’ll happily explain my condition to you if you give me the chance. I’m one of the better off people, I am by far not suffering the worst. I hate to think of what others worse than me go through.
End of diary input for this week, shouldn’t have pushed myself to write anything, silly me. Where are the emergency steroids!? I need pain relief, FAST. (That’s another thing I have to do, learn to know my limits in regards to joint pain and when it’s time to quit… Pace yourself, not push yourself!)
Please note, my left wrist is the wrist moving most freely, it is the wrist closest to the pink painting in the background of my video.
My right wrist is the one that moves less freely, closest to the stars on my jumper.
(Side note: I have really cool pyjama pants… Thanks mum!)

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