25 Mar 2013

I've done my job

Monday 25 March 2013


Well after staying in bed all day yesterday I found the strength to go out for a meal with Sami.  We went for a curry and it was lovely.  I love going out for dinner, it’s one of those occasions where you really get to spend quality time together.  Quite often we have a ‘date night’ indoors where one of us cooks, the TV is banned and we just sit and chat.  It’s lovely.  We do always sit at the table for dinner.  We NEVER eat dinner on the sofa whilst watching TV.  I think it’s important to catch up properly at the end of the day.

After our meal I came home and went to bed.  I’ve been having really sharp ear pain that goes right down into my shoulder and I had a rough night again; lots of pain, especially in my knees – it honestly feels like I've injured them or something but Lupus causes inflammation and that’s what causes all the pain so I guess it’s similar to having an injury.

I woke up about 8 times with those pesky night sweats.  They're horrible because each time it happens I wake up shivering which doesn’t help with the aching joints and sore muscles.

Today I am in quite a bit of pain again. No, actually I don't need to play it down here -  I am in A LOT of pain.  My ear really hurts (the doctor said it’s inflamed, most likely as a result of lupus) my knees kill - this is what 90 year old knees must feel like and my shoulders, ohmyjesus my shoulders are AGONY. If I lift my arms up they feel really stiff - I can almost feel the joints creaking and saying in an old lady voice 'pleeeease help me'.  The surrounding muscles hurt too.  Its like I've slept funny but I can tell it is ‘lupus pain’.  I'm trying to drink a cup of hot chocolate put lifting up the mug is difficult.  Sami said I need a really long straw.  To top it all off I'm also experiencing chest pains...I'm unsure why but they are a symptom of lupus.  Sometimes I get Pleurisy and oh wow that kills.  I've seen grown men crying in pain with that.

Writing all this makes me realise how bloody ill I am!  This is shit.  Since starting this post I've probably said 'OOOOUUUUUCCCH' about 50 times.  Feck me sideways this pain is unbearable. Time for some Steroids me thinks.

I am really hoping I get a break from all this soon….It does get a bit much sometimes.  It takes over your life.  I don’t really have one any more!  This blog has been a god send.  It’s enabled me to get all these thoughts off my (ample) chest. 

I do feel like people don’t really understand what I go through and a close friend of mine said the other day, ‘People don’t understand because you don’t tell them everything’. 

That’s a fair point but if I told all my friends about everything I go through it would be all I talked about.  Also, when I see friends it’s a time to have a laugh not whine about how shit Lupus is.  At least this way people can choose to read about it or not.

On a more positive note I'm so glad this blog has helped others with lupus/chronic illness.  I’ve had some lovely messages from people saying it made them smile.  That feels amazing – if I can raise awareness and make people smile then I’ve done my job. =0)

Not sure I've made anyone smile with today's post but hey ho that's the way Lupus goes.

Steroids and bed for me - I've had enough for one day.

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