12 Sep 2013


Thursday 12 September 2013

......Continued from yesterday

I've had to give in and take steroids because this flare is too much, its strong and relentless in its quest to destroy my day and my life.

For those of you with Lupus you'll understand why I hate the fact that I've had to go back on the steroids and for those that don't understand, I shall explain...I do actually have a post titled 'Steroids' which goes into their side effects a lot more than I will now but basically they are evil and must have been created by the devil himself. They help with flares and get them under control quite quickly but they mash you up in other ways.  They cause havoc with moods (I've been known to get a bit 'hulky')

they give you the appetite of a beast and just because you're not fat enough from all the beast like eating, they also make you retain fluid and where does this fluid hang out? Well your once slim face and belly so you look like a bloated mess.  Oh and there's more, they cause heart palpitations, insomnia, nightmares and if you are unfortunate enough to have to take them long-term, they can also cause osteoporosis and obesity and we all know the separate issues obesity causes. So, to sum them up they're bloody awful but at this moment in time, I've decided the flare is worse than all of the above and hopefully I'll only need to take them for a week but I'm still not happy. If steroids were a person I'd beat them up. And then I'd hug them.

Today the pain has been awful. Its been the worst day I've had since I gave up working. I am in so much pain I literally haven't been able to think. The only thoughts I've had are, 'ouch' and 'fuck!' I've slept a lot of the day but I'm sure I was dreaming I was in pain so I don't feel like I've had a break. The pain has varied from short, sharp stabbing pains (the kind that makes you yelp out loud) to just general aches but my WHOLE body aches. Literally from my head to the tips of my toes. The worst pain, randomly, is coming from just below my shins so walking is quite the challenge. Hence why I've been lying down all day! 

I seriously hope tomorrow is a better day - this pain is intense! I can't believe what I am going through. I actually can't.  On a scale of one to ten, one being standing on a piece of Lego and ten being ohmygod I've lost a limb and my heads fallen off, I'd say I'm at a seven today.  
I think the fact that the pain lasts all day long probably makes it feel worse than it really is, I don't know. Sometimes I'm in agony for weeks; you just don't know how long a bad day will last which also makes it difficult to cope with. 

People often ask me how I cope. The truth is, sometimes I don't cope. I have days when I cry and wail and wish it wasn't happening and I say things like 'Kill me! Someone just friggin' shoot me!' But strangely, sometimes when I'm at my most unwell is when I'm also at my most positive. Today for example, I haven't cried or Why Me'd or anything. I've just had a laugh taking the piss out of daytime TV, eating chocolate and although I've had a whinge on my blog, I'd say I'm generally in a good state of mind. How? I have no idea.  I wish I could tell you its down to this magic potion or a tablet but its not. I am fully aware of the shitness my illness brings to my life but I also have a lot to be grateful for and I guess I must just focus on those more than the pain etc of lupus/fibromyalgia.

I say this kind of shit to myself all the time:

I am a bit pissed off today but only because I like to get out and I've been stuck in the flat for 2 whole days.. and its a mess. I love it when its all clean and dust free and I can go for a walk. Obviously lying down all day gets a bit boring and I get that guilt feeling for sitting on my arse all day. But as I was writing that I said to myself, 'Well tomorrow is a new day and you might be able to get out and about.' That's what I do, if I feel or say anything negative I then say something positive to myself i.e. 'Urgh I'm in so much pain and today is really crap.' Then I'll say 'But tomorrow I will go for a walk and see my Mum' or, 'But there's a new episode of The Big Bang Theory on later' and I feel slightly happier because I have something to look forward to. I guess I am lucky I have a positive demeanour and outlook and perhaps that's what it is that keeps me going. 

Pain does wear you down and I think I lost a little part of me over the past year but I'm starting to come out of the other side now and I'm learning how to cope better. I feel more like me again. The good me that is, not the worn down, deflated and rubbish version I had started to become. For some odd reason I feel a lot more confident as well, like much more comfortable in my skin and with who I am. Its weird. I think I've got my mojo back. Lupus did wear me down but I've come back stronger. Lupus O-2 Faye. 

Mu har har har!! If Lupus was a person I would look at it, do a little dance, put my middle finger up and in a Chinese accent say, 'Fuck you, Mother fucka!' Then I'd walk away with my held high and leave it standing there feeling like a wanker. Lupus would feel embarrassed. Then I'd blatantly have to lie down because all that dancing knackered me out.

I'm a bit waffley today. I'm literally just writing as I'm thinking so this is probably a bit all over the place today - plus this is my second blog of the day?? What am I doing? Just think of it as being inside my head. You are actually in my head right now. 

I usually write all my shite and proof read and edit it but I'm just gonna post this one. Its like its raw. #nofilter  

I've taken a lot of pain relief today which might go someway to explaining why I'm sounding a bit crazier than usual. Hmm co-codomol and tamadol is the  good stuff.  I've heard weed helps chronic pain sufferers. Lol smoke some chronic for the chronic pain. Not sure how I feel about that. Maybe I'll give it a go and see! Or maybe not. I don't wanna be addicted plus I'm unemployed. I'm not sure I should be spending my benefits on drugs.  Anyway, I think I'm going to go to bed now. I'm not even making much sense at the moment. 

G'night my loves. Xx 
Please feel free to send me a message if you ever have any questions or if you just need someone to talk to.  I like helping people. Xx


The good news is I'm feeling slightly better, I'm still in pain but it's not as bad.  Hopefully I'll continue to improve as the day goes on.  

Sami was so sweet this morning and brought me a cup of tea in bed on his way out to work,  I even had to do a Facebook status about it because I thought it was so lovely.  It's the little things in life that make a big difference.  I feel all emotional this morning! How weird, someone come and slap me with a wet fish!

My plan for today is to clean the manky bathroom, change the duvet covers and hoover.  To a normal person that doesn't sound like a lot but to me that is a lot, I'll need a 20 minute nap after each chore.  I could ask Sami to do it but he doesn't get home from work until around 7pm and by then he's knackered.  At the weekend he helps out and when I'm poorly he does the washing up but now I'm not working I do the majority of the housework (when I'm well).  We have quite traditional roles really.  Oooh he ironed some shirts the other day - Sami NEVER irons! But to me (and this may sound controversial) I think its right that he doesn't.  Even when I was working full time I was responsible for all the ironing.  Sami wouldn't ask me to change a tyre or go out and fix the leaking roof on the garage and I wouldn't ask him to do the ironing.  It's just the way we are which might be a bit backwards but it works for us.  I'd love to be a proper little 1950's housewife!  Bit sad really that my only ambition in life is to be a housewife and have lots of kids! And a pug.

I've been using Estee Lauder Night Repair Serum for the past month and I must say it is seriously amazing.  I'm only 27 (and 11 months) so I don't have loads of wrinkles or anything but my eyes were starting to get a bit wrinkly and since I've been using the serum I have noticed a difference and my skin just looks better in general.  It's amazing and I highly recommend it.  It's pricey at about £45 but it works.  I love everything Estee Lauder, their foundations are exceptional and their mascara does what it says it does.  Just thought I'd let y'all know!

Ok, I had better  get some breakfast and start my chores.  Wow, I must be feeling better as yesterday I couldn't even conjure up the energy to go and make a bit of a toast!  Bad times.  I must not overdo it today though as I need to be feeling good tomorrow - it's mine and Sami's anniversary.  6 years he has put up with me for! We are going to go out for dinner somewhere nice, not sure where yet as it will probably depend on how I'm feeling and if I'm feeling really bad we will postpone until next week and the week after that we are off on our hols to The Maldives!!!! OMG its finally nearly here.  I am beyond excited.  Its so lovely to have something to look forward to.

Right I really must get going now.

Catch y'all laters xxxx

This hammock has my name on it......

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