14 Aug 2013

The Lupus Hole

Wednesday 14th August 2013

Lupus is being a bully today. My muscles are spasming so violently it looks like they are trying to jump out of my body. My head is pounding, my hands are stiff like rigor mortis is setting in, my whole body is aching and burning & I can't seem to stay awake longer than half an hour at a time. I'm like some sort of narcoleptic.

Living with Lupus is tough. Really tough. Everyday is a battle. You wake up not knowing what kind of day its going to be. You can go to bed feeling fine, have a good nights sleep and still wake up like you've been beaten up. Its mad. 

Today is particularly hard because I feel so ill, I'm in a hell of a lot of pain and the fatigue is IMMENSE, I'm struggling to keep my eyes open writing this. I've had two baths to help with the joint pain - being in the bath is the only time my joints don't hurt! But its a major effort to get in and get out. When you have lupus, everything is an effort. Even getting up out of a chair or walking to the kitchen from the sofa. 

The fatigue is just horrendous. Imagine walking around with weights in your shoes - that's what its like. I feel like I have to drag myself everywhere. I prefer to be hungover than feel like this. Imagine your worst hangover, well that's not even a patch on a bad lupus flare up.

I don't wanna sound like I'm moaning and being all poor me but this is how I feel and it really is this awful, I'm not even exaggerating.  I cried brushing my teeth because my hands hurt so much. You see, everything is such an effort even something as everyday as brushing your teeth. 

I've had lupus for around 5yrs and I'm still shocked by the pain and fatigue it can unleash on my unsuspecting body.  I still can't comprehend how cruel it can be. No one deserves to be in this much pain. Today the pain has been constant, I don't even know how I haven't been crying all day and feeling sorry for myself. All that's going through my head is 'Just get through this. You've got through bad flares before, you can get through this one.'

I can sit here and cry and wallow in my self pity, or I can think ok, this is shit but lupus is shit, you've got it, there's nothing you can do about it and you've got to get on with it. Sitting here crying aint gonna change anything and will probably make me feel even worse, so today I've gone with the 'get on with it' attitude. Mind you, I'm not sure how long that will last as chronic pain has a habit of slowly wearing you down and chipping away at your positivity until eventually you can't take it anymore. Today I'm gonna try my damnedest to stay strong and positive. 

I was gutted earlier as I had plans to go to the park to meet up with Sami and his sister, sister in law and her gorgeous little boy Em-J but I had to cancel because I couldn't physically get out of bed. Its times like these when Lupus really does get me down because whether you like it or not, Lupus interferes with your plans and your day to day life. Lupus is cruel and it does not give a flying shit about you or your plans. 

There's a little thing I call the Lupus hole which is a dark little place that Lupus takes you down from time to time.  You go there and think about about all the negative aspects of Lupus, such as the pain it causes, the fatigue and the worst thought that I hate having the most; the fact that there's no cure and you have to live like this for the rest of your life, not knowing how you'll be from one day to the next but knowing that you'll live with some degree of pain every single day. That's really difficult to live with because there's no end in sight....One day at a time and all that.

I have to be careful not to go down the Lupus hole too often because that hole is a sad and very lonely place. Thankfully I must have been born with some kind of 'happy gene' because its not often I feel sad or down in the dumps about my illness. Despite being in pain most days and battling immense fatigue I somehow avoid depression and I actually don't know how. People contact me after reading my blog and they ask how I stay positive. I never know what to say because I don't know the answer. I guess I'm lucky. 

On a lighter note, Ela just text me to say our bridesmaid dresses have arrived. Yey! Can't wait to go and try it on. I'm so excited to be a bridesmaid and I'm a bridesmaid twice next year!  Next year is going to be awesome!

I'm falling asleep again so I'm going to say goodnight now (its only 8pm!) I've actually been writing this on and off since around 1pm - that's how long its taken. Never mind - tomorrow is a new and hopefully much better day. G'night my lovelies. Xxx

Courage doesn't always roar.  
Sometimes courage is the little 
voice at the end of the day saying,
'I will try again tomorrow.'

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