11 Nov 2013

Knock Knock

Knock Knock
'Who's there?'
'Hi Faye, it's me Lupus.  I'm here to ruin your day and maybe your week'
'Fuck off '
'Sorry, Faye I can't as you have no cure for me remember?  I'm here to destroy your mind, body and your soul'
'Oh yeah. I guess you'd better come in then'

Knock Knock
'Who's there now?!'
'Oh hey Faye, it's me, Sjogren's syndrome.  I haven't paid you a visit for a while so I thought I should come along and join the Lupus party'
'Fine.  Come and ruin my day too'

Knock Knock
'Oh for fucks sake who's there?'
Hi Faye, it's Fibromyalgia, I may as well come along too?'
'Fine, just sit in the corner quietly'

After a lovely weekend that's what I've woken up to.  Great.  I had a really chilled weekend, stayed in Friday night with Sami, chilled most of Saturday daytime, went to a friends house on Saturday evening and chilled most of yesterday so why and how have I woken up today in absolute agony?  After 3 years I'm still not used to the unpredictable and downright crazy patterns of Lupus/Fibromyalgia.  I don't think I could ever get used to this.

I opened my eyes this morning and they were all stuck together, dry on the inside but gooey on the outside (lovely) they felt really swollen and sore and straight away I realised it must be the Sjogrens syndrome. I haven't had a sjogrens flare for a long time so I suppose I'm due one!  My sinuses feel swollen too which I think is also a sjogrens thing. For those that don't know Sjogrens syndrome is another autoimmune disease where the immune system attacks the saliva producing glands and tear ducts causing dry and sore eyes and dry mouth.  It also causes joint pain, fatigue and muscle aches.  It's very common to have Sjogrens together with Lupus but it can be a disease on its own too.

As I came round I thought to myself, 'Shite! if I move it is seriously gonna HURT' and I wasn't wrong.  Jesus Christ, the pain under my arms - it feels like I did a few hundred press ups before bed and woke up with that muscular pain in your arms and underneath.  I could barely get in the bath and getting dressed was fun - I must've looked like a right weirdo practically dancing into my top.  I couldn't wash my hair so I've just tied it up in a skanky bun. I haven't put any make-up on because it seriously kills to lift my arms and I'm not sure much can fix my mash up face so I'm just sitting here looking rather trampy which I hate as I always make an effort with my appearance.  Oh well, I'm sure one day off is OK.

I also had the added delight of a nose bleed this morning.  For some reason I always get them when I've been on steroids a while, it must be some kind of side effect.  Or perhaps its a symptom of the Sjogrens? Who knows.  It wasn't bleeding loads but it wasn't very pleasant.  God I'm so glad I didn't have a job to try and get to this morning.  Can you imagine? Turning up for work with no make up, unwashed hair, unable to move my arms and a bleeding nose?  I'm very lucky to be able to stay at home.

I'm currently trying to drink my tea and it's not easy!  I cannot believe how much pain I'm in.  I was crying with the pain earlier which is unusual for me.  I think I was feeling a bit pathetic! A bit 'poor little me-ish' I just let it happen and thought I must be entitled to feel like this occasionally? Yes, yes I am.  I soon dusted myself off.  But then I was crying again for a totally different reason.  I was watching 'This Morning' and they had two war veterans on telling their stories about the second world war.  All the soldiers were so brave.  It made me cry to think about what they did for us. Incredible.

I received the new Lupus Group Ireland book 'Living with Lupus' on Saturday morning.  It's a book with 20 different stories from Lupus sufferers and includes my story! Yey!

Here's my belfie (book selfie)

You can buy it here - http://www.lupusgroupireland.com/shop.html Its really good (obviously I would say that) but its really interesting to read other people's experiences with the same disease.  I am very proud to be a part of it.  You can see in the pic I've added my hair extensions (I'm so vain) but I was feeling a bit shitey as I've put on quite a few pounds since going on the steroids so I  thought I'd tart myself up a bit which did make me feel better.

I'm writing this with my laptop in bed.  I've got the electric heater on full blast, a hot water bottle and a huge duvet plus a cup of tea.  I am so warm and toasty and feeling quite happy now - no more 'poor little me' behavior'. wow typing the letter 'q' hurt like hell! It must have been the angle my hand went at (my hands are hurting a lot now too).  I'm just going to keep snuggly and warm today as the cold definitely makes me joints hurt more.  Again, I am so grateful for the fact I don't have to go outside.

People warned me before I gave up work that I might become bored and depressed and I was prepared for it but I haven't felt bored or depressed at all, if anything I'm happier.  I have a better life balance now.  When I was working it was work, sleep, work, sleep and the weekends were spent recovering from the week. Whereas now I have a life, I see my friends more, I am able to keep on top of the housework and I can rest when I need to. When I was working if I had a flare up it would seem to last forever because I had to work through it whereas now I can rest when I need to. And not feel guilty about it.

I don't get bored because if I'm unwell I'm asleep or resting which I have finally accepted I have to do and when I'm well, I go out or keep myself busy with housework/cooking.  Blogging keeps me occupied too and now I have a wedding to plan so I spend hours looking up flowers/decorations/invitations etc.  So I can honestly say I have not felt bored at all.  Obviously I have days (or mornings like today) where I get down but that's because I'm ill or in pain not because I'm not working.

Maybe if I was a negative person then depression could easily take hold, especially when you're on your own all day and feeling ill but I think my positive outlook on life keeps me going.  Like now for instance, I'm in pain (well agony actually) but I'm happy because I'm all snuggled up and grateful that I'm not at work. Rather than concentrating on the pain I concentrate on feeling content in my cosy bed.  And after this I'm going to spend an hour or two looking at wedding shoes.  Shoes always make me happy!

I shouldn't be moaning at all today with what all those poor people in the Philippines are going through.  I just saw a bit on the news and it really is horrific.  I wish I could go and help them in some way.

I'm going to stop typing now as it is getting quite uncomfortable.  Catch y'all later.  Have a good Monday and remember how luck you are. xx


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