20 Mar 2013

Lupus & all its friends

Wednesday 20 March 2013

Lupus and all its friends

I woke up this morning with really painful joints (it’s usually a lot worse in the morning) I opened my eyes and thought ‘Oh no’.  

I tried to move my legs and I could hear my joints going ‘HELL NO!’  ‘HELL FREAKING NO BEEETCH!’ (said in the voice of Samuel L Jackson for some reason, apparently that’s how my joints speak).  I tried to move my hands and they too said ‘No’.  So I just laid there for a few mins trying to move slowly and eventually was able to get out of the bed.

The shower is always a fun.  It’s like an obstacle course.  I get in and most mornings find it very difficult to use my hands so squeezing the shower gel out can be a bit of a task.  I usually end up using both hands and squeezing it on to my leg.  Washing my hair is fun too – it usually makes my arms ache so much like when a normal person does weights or something.  Sometimes, Sami has to wash it for me when I’m too weak.  Luckily this isn’t too often.  Sometimes he has to help me in and out of the bath which feels a bit embarrassing – I’m 27 not 97!  But he is so lovely, when I’m all achey he always runs me a nice, hot bath.
Then I then have to brush my teeth and this too hurts my arm.  My muscles are so weak.  Maybe I ought to try and do something about that…Hmmm.
After blow drying my hair I’m knackered and ready to get back into bed but I’ve got the whole day ahead yet…
So after my obstacle course morning I went and had some blood tests (results due Friday) please God, don’t let there be MORE wrong with me.

As a result of today's blood tests I couldn't go to the carvery last night.  My best mate rang me to say she was at the Toby Carvery right next to work and asked if I'd like to join her, my little eyes lit up and my mouth watered at the prospect of roast potatoes, I said 'yes please!' Then I remembered I wasn't allowed to eat or drink for 12 hours before my blood tests today so had to ring her back and say no, I'm going home.  I walked home with the hump, which was stupid because I then worked up an appetite! Oooops!
I’m not sure how many of you are aware but as well as Lupus and Hughes Syndrome I also have Sjogrens syndrome and Fibromyalgia.  I’ll put a link to the websites that explain what they are. 

Sjogrens is basically an autoimmune disease (like Lupus) that affects the salivary glands and tear ducts.  So my immune system attacks these and it causes dry eyes and dry mouth.  This syndrome can also cause joint pains and organ damage.  I’m not sure if it’s Venus or Serena but one of them has Sjogrens Syndrome and suffers with joint pains.  I just get dry eyes.  Sometimes I can barely see because my eyes are so dry and scratchy.
Fibromyalgia causes widespread pain, IBS and difficulty sleeping.  I haven’t officially been diagnosed with Fibro but I’m pretty sure I’ve got it.
It’s quite common to have these along with Lupus but you can have them on their own too.  Lupus likes to bring its mates along to join the party.
As if Lupus isn’t bad enough!
I mostly talk about Lupus as these other conditions are secondary to the lupus and the lupus is what causes most of my problems.  Plus I’d be here alllll day if I moaned about EVERYTHING!

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