Tuesday 28th May
Well I was supposed to go to work tomorrow but I've sent my boss a text to say sorry but it aint happening. I've technically left but I said I'd help out a few days a week until he gets a replacement for me but sadly I can't go in tomorrow. I just feel too unwell. My head is all over the place and my body is aching like hell.
I can't describe how I feel. I know its lupus brain fog but I don't think I've ever had it this bad before. I feel so strange. All floaty and spaced out. Its almost like I'm high. Its probably not safe for me to be at work at the moment anyway. My bed is definitely the best place for me (and for the safety of the public).
I'm becoming really frustrated because I want to work off these extra pounds I've gained (thanks steroids) but I can't because I'm too exhausted and in too much pain. Its making me depressed which is making me want to eat! But I don't want to eat because I'll get even fatter!
Some people with lupus lose loads of weight as a symptom. Not me though. I gain it. For feck sake. I've been thinking about cookies all evening. My mind is saying yes. My double chin is saying no. I'm not used to depriving myself of food as I'm not used to weighing this much. This is all new to me. But I'll be strong, strong like lion. Why can't I just wake up a stone lighter? Feel like I've started to look old as well. Shit, I'm gonna have to live on lentils and start using 'Oh shit you're old' cream. Hmm maybe I've had too much time to think of late. See, being in bed all day everyday is not a good thing.
Wednesday 29th May
I've woken up today covered in sweat. These night sweats are so weird because I don't sweat during the day and when I'm in bed watching TV I don't sweat but as soon as I fall asleep I sweat like a beast. I don't get it. It happened when I was in hospital last year, the nurse took my temperature and it was normal. I've asked my lupus doc about it and he said its just one of those lupus things. So I'm just going to have to live with it. Thanks Lupus.
I'm not feeling as bad today. I'm aching all over but I feel slightly more 'with it'. I might even do a bit of housework. Just some gentle bits like polishing. I hate sitting around doing nothing. Its depressing. I like tidying and being busy. Laying in bed might sound great but its really not. Its shit. Problem is, if I over-do it I'll end up in bed for another week so I've got to be careful. Booo Lupus boooo.
Ok so I thought I was with it but I'm really not. Here are some examples of what lupus brain fog has done to me today:
I was convinced I'd ironed a shirt for Sami to wear for work. He looked in the wardrobe and said, 'No you haven't'. I was adamant I had. Said shirt was in the ironing pile. So weird. I must have dreamt I ironed it.
I put some washing on and forgot it was in the machine....By the time I realised, it was nearly dry and had that horrible smell. I then ran myself a bath and completely forgot about it. It was freezing by the time I realised.
It does freak me out sometimes. Sometimes I can't string a sentence together and I worry I've got alzeimers or something! Apparently its caused by the blood vessels in the brain becoming inflamed during a bad flare up.
I've just had a little cry - out of pure boredom. I'm going to have to get up and do something. I can't lie here all day again getting fatter by the minute. Right I'm going to get up and go make a poached egg and try and do some housework....
Well I started having a sort out of my wardrobes and drawers (wow I have a lot of shit I don't wear) and I wish I didn't because I'm knackered now! Wow. Oh well must soldier on.
Look at all this stuff...
I have sorted out all my handbags though.....ahh I love it when things are neat and tidy. My brain feels a bit better now.
Sami's sister is coming to get me in a min, she had some Alicia Keys tickets that she wanted to so sell on so I've managed to sell them to my school friend, Emma so we're gonna go and meet her and then Ela is going to take me to Waitrose to get some bits for dinner. Thank God for Ela because I would not have had the energy to make it there myself!
Catch ya laters x
Thursday 30th May
Feeling better today but still feel like crap. Aching all over and feeling tired after another night of waking up in cold sweats every hour. I love my life.
It's Sami's birthday tomorrow and we are going out for dinner so I'm hoping I won't feel like death. I'll take it easy all day tomorrow and then I'm sure I can drag myself out for a steak ;0)
Sami and I watched the England v Ireland match yesterday. I felt so confused. I'm English but my Dad and my Mum's Dad are Irish. So I feel love for Ireland too. I sent this pic to my Dad to wind him up....
He replied, 'Traitors will be hung'. Lol!
Was meant to go to Bromley with my Mum today but I'm not up to it. I'll get there and fall down in a heap and need to come home! So I think I'll give it a miss for today. We might go tomorrow instead. We'll see.
Right I'm going to go and sort out all my shoes now....I have too many. Yes I actually said it, 'I have too many' so I'm going to make some room for some new ones....