21 May 2013

Life with Lupus

Feck me! I am in fecking agony today.  My whole body is aching and it feels like my muscles are a lot tighter than usual.  I've got sharp, shooting pains going through my arms and legs, I've got spasms in my back, my head feels too heavy for my neck, my knees feel like they belong to an old lady, I'm hobbling around as I can't really walk and to top it all off  I've had a crap nights sleep.  I woke up about 12 times, each time drenched in sweat.  Nice.  I was supposed to go into work today but after the nights sleep I've had I thought it best not to and  when my alarm went off I could barely turn over to turn the damn thing off.  I was fine yesterday and now today I feel like I've been beaten up in my sleep.

Its now 2pm and I'm still not dressed and I don't care, I don't have the energy to wash let alone care.  I've been in and out of sleep all day, I just can't seem to stay awake for longer than half an hour.  All my energy has been stolen by Lupus and it's army of soul destroying soldiers.

I need to be OK by the weekend as Sami and I are going to see Muse at the Emirates stadium.  It's his birthday present from me.  I can't wait.  So I'm really hoping Lupus doesn't try and come a long with us.  Hopefully if I take it easy all week I'll be OK.  I think that's one of the hardest things to cope with is how unpredictable this disease is.  One day you're fine, the next you're in bed and can hardly move, then the next you're jumping around like nothings wrong. WEIRD.  So we'll have to wait and see what happens.

People say to me 'Would you like to come to this party in 3 weeks time?'  I have to say, 'Yes, I'd like to but I might not be able to so we'll see'  Luckily most of my friends and family are understanding and they know I'd always try my best and  quite often will go somewhere even when I'm in pain.  I just try to get on with my life.  

I think I might have to go back to sleep - AGAIN! Oh well, sometimes you just have to give in.  I can't stay awake and continue to be in this much pain, its getting worse and worse and  quite frankly I'm quite close to downing a bottle of gin.  I think I'll take some tramadol instead.  That's probably the best option.

I'm still waiting to hear back about whether my claim for DLA (Disability Living Allowance) has been accepted.  It's been about 3 months.  So frustrating.  I hate the idea of being on benefits but I have a genuine reason and I've worked full-time since I was 17 so it's not like I'm a dosser or something.  My Mum has been medically retired from work now, she was diagnosed with a heart condition called Cardiomyopathy 2 years ago.  She was diagnosed after suffering a series of mini-strokes.  She had a heart operation and is on loads of medication but she still carried on working until recently she realised her health has got to come first.  She was rejected for DLA.  I can't believe it after everything she has been through.  It's because the government can't afford any welfare anymore.  They effed up big time a few years ago when anyone could apply and get it without any medical evidence so now people who really do suffer and do need it to get by are told they can't have it!  Grrr.  

If you're reading this and are fortunate enough to be healthy, please don't take it for granted.  Just take a moment to think about how lucky you are.  Dealing with chronic illness is seriously hard,  I feel like every day is a struggle.  I struggle with the pain, I struggle with decisions as my mind wants to do something but my body doesn't always allow me to, I struggle with sleep, I struggle with my emotions, trying to remain positive as I don't want to make it any harder for those around me.  I struggle with the guilt and I struggle with worry.  There are so many layers to deal with.  It doesn't just effect me, Lupus effects Sami, my friends, my family, and my colleagues so when you have to let someone down because you're unwell it's hard not to feel shit about it.

I didn't realise how lucky I was before. My life has been turned upside down but it's really made me realise what and who is important to  me and I appreciate all the small things.  If I'm not bed bound tomorrow I will make the most of it instead of taking it for granted. And if I am bed bound like I am today, then I will complain, possibly cry, eat a lot of chocolate, watch crap TV and hope the next day is better.  That's life with Lupus.

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