21 Jan 2014

All is well.....for now

Tuesday 21 January 2014

Well hello! Sorry it's been a while - about 3 weeks since I last blogged.  We haven't had a laptop and I've got a new phone which I can't really type on so I haven't been able to write.  Sami bought a new laptop at the weekend so all is back to normal.

I haven't been up to much - January is a quiet month isn't it? January is a rubbish month! Cold, dreary, quiet and boring! Actually I say I haven't been up to much but it hasn't been THAT quiet.

It was my bestie's birthday on 4th January so she had a little gathering at her house.  We all had a really nice evening and drank way too much prosecco! At one point we were doing piggy back races (as you do) and I fell off the person's back I was on, landing on a plug.  To say it hurt would be an understatement.  Luckily I was quite intoxicated so didn't feel the pain as much as I should have.  When I woke up the next day I could barely move and I'm not exaggerating.  I must have badly bruised my coccyx - I was in pain for about 2 weeks after and even now still get little twinges when I change position.  I was so annoyed with myself because I've been having a really good spell and then go and hurt myself.  I could hardly walk for about 4 days and not because of my illness but because I stupidly fell over whilst drunk!  I'm just destined for a life of a pain (get the violins out) anyway I'm fine now so I'll stop whinging.

So the last time I blogged I was telling you all how I'd been well over the  Christmas and feeling good.  I'm pleased to say I'm still feeling good (I've had a few minor blips) but generally I've been like a normal person.  It's quite unsettling as I keep thinking when will Lupus come and get me? I'm trying to make the most of it but that thought it always lingering.

I say I've been well and by well what I actually mean is not as bad as usual.  I've had lots of skin rashes - some that are painful and others just weird and when I go to work (one day a week) it really takes it out of me.  I enjoy going in but by the end of the day my brain is all fuzzy and I feel absolutely exhausted.  The next day is pretty much a write off too but I really like going to work - it makes me feel like I'm part of the world again and like I have some kind of contribution.  I thought I'd be ready for a full time job again by now but I've realised one day a week is enough.

I can now add Migraines to my list of Lupus symptoms - I've been ok for the past week but for a couple of weeks before, I was having a migraine every few days.  Really horrendous ones that made me feel sick.  I couldn't open my eyes and needed to just lie in a dark and quiet room.  I was trying to work out why I was having them as migraines is not something I've ever suffered with (except when I'm on a high dose of steroids) and I figured it was actually withdrawal symptoms from my painkillers.  I realised that because I've been well I haven't been taking them so that's what the cause must have been.  I felt like a druggy -  I was trembling, feeling sick and suffering with terrible headaches. Not good what they can do to you which is why I usually have a few glasses of wine instead of taking pain killers - it works and surely it must be better for you?

Anyway, It was my sister-in-laws hen do at the weekend which was really good.  We went to The Shard for drinks and it was stunning - if you haven't been up there I highly recommend it! After The Shard we went for dinner at a restaurant in London and a few drinks then we all went back to a hotel and stayed there the night.  Oh and we got a hummer from the hotel to The Shard which was an experience! The wedding is in 3 weeks - I can't wait! I'm a bridesmaid for the first time and I'm so excited! I can't believe it's only 3 weeks away!

Blurry pic of the Hummer

Me in The Shard

The View

So yeah, I guess I lied when I said I haven't been busy!  Sami and I had a date night last weekend which was lovely.  We went for dinner to a nice Turkish restaurant and then to Happy Days the musical which I loved.  I love musicals! 


I decided to make some changes to my lifestyle this year.  I'm getting married in October and would like to be slimmer so rather than trying to lose weight like a maniac a few months before the wedding I decided to change a few things so that by the time the wedding comes around I'm fit, lean and look how I want to look.  I've cut down on alcohol (Sil's birthday party was an exception) and I'm aiming to do 30 mins exercise everyday.  Nothing too gruelling - some days I go for walks, other days I do yoga, some strength exercises and when I've been up to it I've gone for power walks. I also do hula hooping which I'm addicted to! I've never really had a bad diet but I've cut down on my portion sizes.  I started around 5th Jan and I've managed to lose 5lbs.  I'm hoping to lose about a stone overall and by changing my lifestyle I'm hoping it stays off.  I really enjoy exercising but obviously I'm not always able to which can be frustrating but I'll just do it when I can.

I couldn't do anything yesterday - I was in bed for the whole day as I couldn't keep my eyes open longer than about 10 minutes.  I'm not sure what happened but I was exhausted, not the normal tired that normal people feel, it was that Lupus fatigue feeling when even lifting an arm makes you feel so tired you need to sleep! It's really awful and I haven't felt it for a while so it really knocked me for 6.  I tried to fight it as I had lots of house work etc to be getting on with but in the end I just gave in and went to bed where I stayed all day. I felt like I'd wasted a day of my life but I don't get too upset about it now as I've come to terms with my illness and accepting my limitations.  No point in crying about it as it won't change it.

I've got a hospital appointment on Friday (my quarterly check up) where I will be sent off for a million blood tests, well maybe not a million but I usually have about 10 different ones and as a person with a fear of needles it's quite traumatic! I'm slowly getting over it though -  I don't really have a choice do I?
I'm looking forward to this appointment as it feels like I haven't been for ages!  The appointments can be slightly depressing though as when I was first going he was trying all different meds to try and make my life easier and now we've tried most things I'm pretty much stuck with what I'm on so now I go there knowing he can't really help me any more than he already has and I know there won't be a cure any time soon so the appointments aren't exactly satisfying.

I'm looking forward to next Friday as we are going for a meal at The Hawksmoor - it's a restaurant in Covent Garden I've been dying to go to for ages and we are finally going! I'm going to have the steak AND the lobster! I can have one night off from the diet!

So yeah, that's it really.  I'll let you all know how The Hawksmoor is! 

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