Hiiii - (said in a dreary and sad way) today is a bad day. This is basically what happened:
Knock knock
'Who's there?' I ask
'Its meeeeee' replies Lupus. 'I'm here to fuck up your day and make you wish you were never born.'
'Oh right, ok come in...'
So here I am, lying in my bed at 2.44 pm with my laptop, still in my pj's. I am actually too exhausted to have a wash. I woke up at around 8am, managed to stay awake for an hour or so, fell asleep until around 2 and I've been awake since. Yey me! That's my biggest achievement today.
I've had an awful nights sleep consisting of not being able to sleep until around 2am mixed with itching skin, joint pain and night sweats which informs me a flare is imminent so, as you can imagine, I'm pretty rotten at the moment. Gosh if anyone could see me...I will try and paint a mental picture for you because aint no way in hell I'm showing y'all a picture....OK so I'm wearing one of Sami's shirts which is a little wet from all my sweating, my hair is a scraggy, slightly wet, slightly greasy mess, I have no make up on and for some weird reason my bottom lip is swollen and bleeding? I've come to the conclusion I must have bitten it in my sleep. Or Sami punched me in the face. But I doubt the latter very much.
I intended on going swimming today but obviously that aint happening. The only swimming I'll be doing will be in the bath....If I can muster up enough energy to get in the damn thing, which is all good but then I need to energy to get back out! Even talking about it is nearly sending me back to sleep. The sheer effort of moving is too much for me to take....and hoiking myself out...Oh dear...is hoiking a word? You know what I mean though...it's all too much.
Days like today remind me just how tough living with chronic illness and constant pain can be. Some days I'll be in agony but I manage to put the pain to one side and get on with it and other days it consumes me, like today. I can't seem to think of anything else other than 'Ouuuuch' and, 'Fuck this shit!'
Being in bed all day sucks as well because you feel like you've wasted a day of your life. I'll never get today back - 'The day that pain stole'. I've been robbed by Lupus. Or Fibromyalgia - I don't even know which one I'm suffering from at the moment.
I am going to be strong and get in the bath and then I will put on some lovely clean PJ's, make myself a tea (I haven't had anything to eat or drink today) and I shall get back into bed and wait for Sami to come home and cook dinner. I always do the cooking but after I have a bath I'm pretty sure I won't have any energy left whatsoever so Sami will have to do it this evening. He won't mind. He looks after me he does. We look after each other.
I just sat here for about 5 minutes staring at the screen blankly. Wow I really am a mess today. I also forgot how to spell 'minutes' its mad what a flare up can do to your cognitive function...sometimes its scary, I've even thought I might have Alzheimers before. That's how I usually know a flare is looming, when I forget simple things or can't seem to concentrate. And the night sweats. God the night sweats. I feel like a freaking menopausal woman. I'll be fine all day and soon as I go to sleep I sweat like Lee Evans doing stand up. Ok maybe not THAT bad.
Even if I have a nap on the sofa, I'll wake up drenched in sweat. The sweat comes out of my head, behind my knees, my neck, EVERYWHERE. I hate it because then I wake up shivering and have to change my clothes and sometimes the pillow case. Grossy gross gross. Sometimes I wake up 6 or 7 times shivering and soaked. When I had to go to work it was horrible because I'd be knackered on top of having Lupus fatigue. Life sucked then. I'm SO glad I decided to give up my job. I really have no idea how I coped.
I'm not portraying a nice image of myself today am I? Lol! You must be reading this thinking 'ewwww, yuk!' Yep, I'm a sweaty, scraggy, manky mess with no brain - imagine someone off the Jeremy Kyle show and there you will have the perfect image of me today. That's Lupus for you - destroyer of souls and looks!
I spent about half an hour reading positive quotes online before I decided to blog. I was feeling rather down so thought I should read some positive stuff to get me in a positive mindset. It kind of worked as I do feel slightly better. I found this one which struck a chord....
And this one just made me laugh because its so true...
If you're reading this and feeling down and shitey I can recommend reading inspiring or positive quotes, or failing that just go to sleep like me. That way you don't have to think.
That's enough from me today. I'm too tired to think now....sjfoaeruoauipsdaondoshvoaujeiugpairpfaspkfasjdgalfndlajflsjd - that's what my brain is like at the moment.
Good night - even though it's only 15.21 I so know I'm going to be asleep in the next hour.
xxxx
Knock knock
'Who's there?' I ask
'Its meeeeee' replies Lupus. 'I'm here to fuck up your day and make you wish you were never born.'
'Oh right, ok come in...'
So here I am, lying in my bed at 2.44 pm with my laptop, still in my pj's. I am actually too exhausted to have a wash. I woke up at around 8am, managed to stay awake for an hour or so, fell asleep until around 2 and I've been awake since. Yey me! That's my biggest achievement today.
I've had an awful nights sleep consisting of not being able to sleep until around 2am mixed with itching skin, joint pain and night sweats which informs me a flare is imminent so, as you can imagine, I'm pretty rotten at the moment. Gosh if anyone could see me...I will try and paint a mental picture for you because aint no way in hell I'm showing y'all a picture....OK so I'm wearing one of Sami's shirts which is a little wet from all my sweating, my hair is a scraggy, slightly wet, slightly greasy mess, I have no make up on and for some weird reason my bottom lip is swollen and bleeding? I've come to the conclusion I must have bitten it in my sleep. Or Sami punched me in the face. But I doubt the latter very much.
I intended on going swimming today but obviously that aint happening. The only swimming I'll be doing will be in the bath....If I can muster up enough energy to get in the damn thing, which is all good but then I need to energy to get back out! Even talking about it is nearly sending me back to sleep. The sheer effort of moving is too much for me to take....and hoiking myself out...Oh dear...is hoiking a word? You know what I mean though...it's all too much.
Days like today remind me just how tough living with chronic illness and constant pain can be. Some days I'll be in agony but I manage to put the pain to one side and get on with it and other days it consumes me, like today. I can't seem to think of anything else other than 'Ouuuuch' and, 'Fuck this shit!'
Being in bed all day sucks as well because you feel like you've wasted a day of your life. I'll never get today back - 'The day that pain stole'. I've been robbed by Lupus. Or Fibromyalgia - I don't even know which one I'm suffering from at the moment.
I am going to be strong and get in the bath and then I will put on some lovely clean PJ's, make myself a tea (I haven't had anything to eat or drink today) and I shall get back into bed and wait for Sami to come home and cook dinner. I always do the cooking but after I have a bath I'm pretty sure I won't have any energy left whatsoever so Sami will have to do it this evening. He won't mind. He looks after me he does. We look after each other.
I just sat here for about 5 minutes staring at the screen blankly. Wow I really am a mess today. I also forgot how to spell 'minutes' its mad what a flare up can do to your cognitive function...sometimes its scary, I've even thought I might have Alzheimers before. That's how I usually know a flare is looming, when I forget simple things or can't seem to concentrate. And the night sweats. God the night sweats. I feel like a freaking menopausal woman. I'll be fine all day and soon as I go to sleep I sweat like Lee Evans doing stand up. Ok maybe not THAT bad.
Even if I have a nap on the sofa, I'll wake up drenched in sweat. The sweat comes out of my head, behind my knees, my neck, EVERYWHERE. I hate it because then I wake up shivering and have to change my clothes and sometimes the pillow case. Grossy gross gross. Sometimes I wake up 6 or 7 times shivering and soaked. When I had to go to work it was horrible because I'd be knackered on top of having Lupus fatigue. Life sucked then. I'm SO glad I decided to give up my job. I really have no idea how I coped.
I'm not portraying a nice image of myself today am I? Lol! You must be reading this thinking 'ewwww, yuk!' Yep, I'm a sweaty, scraggy, manky mess with no brain - imagine someone off the Jeremy Kyle show and there you will have the perfect image of me today. That's Lupus for you - destroyer of souls and looks!
I spent about half an hour reading positive quotes online before I decided to blog. I was feeling rather down so thought I should read some positive stuff to get me in a positive mindset. It kind of worked as I do feel slightly better. I found this one which struck a chord....
And this one just made me laugh because its so true...
If you're reading this and feeling down and shitey I can recommend reading inspiring or positive quotes, or failing that just go to sleep like me. That way you don't have to think.
That's enough from me today. I'm too tired to think now....sjfoaeruoauipsdaondoshvoaujeiugpairpfaspkfasjdgalfndlajflsjd - that's what my brain is like at the moment.
Good night - even though it's only 15.21 I so know I'm going to be asleep in the next hour.
xxxx
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