GLITTER

Monday 4th March 2013 - GLITTER

My year so far...

After a very bad week with a lupus flare I now have a kidney infection.  It's so cool being me.

To say it's been a tough so far would be quite an understatement. ..

At the beginning of the year I was told i have tested positive for antiphospholipid antibodies or Hughes Syndrome to you and me.  It basically means my blood is thick and sticky so I am more prone to blood clots and it also caused problems in pregnancy.  

This news literally felt like a punch in the face, I've barely got used to having one serious illness and now I've got another one.  

I only went along to the hospital for a chat with a doc about pregnancy and lupus - we're not planning on having a family yet but I knew having Lupus could be a problem so I just wanted all the facts and the doc comes out with that little nugget of shite information.  The worst things was I was on my own as I thought it would just be a chat so wasn't worried.  How wrong was I.

So that was in January, lovely news for the start of 2013.  I left the appointment after having a load of blood tests as the doc wanted to check how severe it all is and I was walking along Waterloo bridge when I came over all queer.  I thought I was going to pass out and it felt like the bridge was moving.  I had to hold on to the wall at one point and a passer by asked if i was ok.  I went to the shop and got a sweet drink and just sat down and waited for my train but I felt really weird and dizzy all day, I just put it down to the amount of blood I'd just had taken.  

I got home and had to tell Sami my news.  Which was devastating.  No one wants to to tell the person they plan to have kids with one day that you might not be able to.  Sami was amazing and said just because things don't turn out the way you planned it doesn't mean you wont be happy.  Got to love him.  Always makes me feel better.

Basically with Hughes Syndrome because the blood is sticky it means that oxygen doesn't always get to the fetus so the risk of miscarriage is extremely high.  And as a person with Lupus as well, I'd be classed as a high risk pregnancy.  So we decided that perhaps we would try naturally and see what happens and then we'll cross the bridge when we come to it.

So anyway this dizziness just went on and on so i went to the docs and it turned out I had an inflamed inner ear (due to lupus).  The doc prescribed some anti-sickness tablets but they didn't work so I just got on with it and drank wine to give me a reason to be dizzy!  however, it got worse and worse to the point where I was at work and I genuinely believed I was having a stroke.  The room was going round and round, my head was pounding and then my left arm went numb and i couldn't feel my hands - i was looking at them and it felt like they weren't mine.  I couldn't breathe and it was just awful.  Zoe who I work with took me home bless her, well to my Mum's house and I realised I'd had a panic attack.  FFS.  So now i can add anxiety to me ever increasing list of ailments.  I'm ashamed to say that I didn't really believe in panic attacks before.  I thought it was an attention seeking thing, but I can tell you, they are very real and very scary.

Anyways, so after 4 weeks of dizziness and 4 days off work, I thought I was better.  But no, I got a cold, which is fine i can get on with that without complaining  but then! Oh yes there's a fecking then! I had another flare up.  I was in AGONY for a week, all my joints and muscles were inflamed and painful and it was very unpleasant.  I ended up having more time off work and under docs orders had to take shit loads of steroids and antibiotics as my ear was inflamed again and possibly infected.

Now I have a kidney infection, been waking up about 4 times a night to pee so now have more antibiotics.  Currently on 29 tabs a day.

I actually find this  quite funny because even tho I've been ill all year so far, somehow I'm not unhappy.  I've got a wonderful boyfriend (Sami) who really is an angel.  I live in a nice flat (owned by Sami) I've got a relatively stress free life, my jobs alright - it pays for shoes and wine so I don't really feel like I can complain.  All that's wrong is my health and unfortunately there's no cure for the illnesses I have so it's very important to stay upbeat.

People ask me how I cope and I really don't know the answer to that  question.  I guess you don't know how strong you are until you are tested.  I've got the attitude of well, I could fall down in a heap and never get back up (and believe me, i do feel like that sometimes) or i can appreciate the small things, enjoy the good times and smile through the pain.  I choose the latter.

I heard someone say once that they knew an elderly lady who was too frail to dust away the cobwebs so she just threw glitter in them instead. 

http://www.hughes-syndrome.org/index.htm