16 Dec 2013

Party Hard, Suffer a lot harder

Monday 16 December 2013

I think I'm on the verge of a breakdown.  I have seriously had enough of this life now.  If Lupus was temporary I think I'd be able to cope but its permanent - I am going to have this for the rest of my life. Never knowing what one day to the next is going to bring, the only certainty being some form of pain.  I can't remember what a pain free day feels like.  I haven't had one for nearly 4 years and I've got the rest of my life yet.  How do you mentally equip yourself for that?  I'm trying my hardest not to cry because I'm indoors on my own and I'm scared if I start crying I might not stop, hence the feeling of being on the verge of a breakdown.  I don't want to sit here crying on my own so I'm trying not to start.  I just put Jeremy  Kyle on to help me realise there are people worse off than me. Lol! This poor woman is a drug addict and doesn't know who the father of her baby is.

On a positive note we had our engagement party on Saturday and it was wonderful.  I party hard and unfortunately I suffer a lot harder! So annoying.  I went shopping for my party dress on Thursday and on Friday I could barely get out of the bed, it was like my body just said 'No'.  This is why I'm so fed up, I have to plan a day of rest after any kind of active day and at 28 years of age that's a piss take.  Saturday I was fine after resting all of Friday and I was even fine on Sunday but today I woke up a train wreck.  Anyway, so yes the party was lovely.  We loved having all our friends and family in the same place, we really are so lucky to have such amazing family and friends, its so nice to have so many people to love who love you back. And of course I loved being the centre of attention! It was good wedding practice! Everyone commented on how lovely my parents are which is always nice to hear! They are pretty cool.  I'm glad the evening was a success.

It's such a shame to have such a lovely weekend then feel like this today.  The pain is almost unbearable. My whole body is burning like there's acid inside my bones and muscles.  The glands in my neck and back are swollen and so painful I couldn't even lie down in the bath.  My head is pounding, I've been sweating most of the day and I have stabbing pains in my knees and hands.  Plus I do not have a positive mental attitude today.  I tried to find it but it's not coming out to play.  Today's attitude is 'fuck this shit' and that's how it's staying.

My friend Graham said to me recently 'what would you do if there was a cure tomorrow?' it really got me thinking and I think my answer surprised him.  I said I don't know if I would be massively happy about it straight away.   The reason being since my diagnosis I've had to  completely change my life.  I've adjusted to being ill now and to suddenly not be would be weird.  I'd have to adjust all over again.  Since diagnosis I've had to slow my life right down, I used to work full time, go to the gym, go out at least 4 times a week and now I'm lucky if I leave the house once a week.  I had to give up my job, the gym and I had to learn to slow down and I'd say I'm used to that now, this is how it is.  Don't get me wrong I'd love to wake up and be cured forever but it's not as straightforward as it sounds.  Graham said 'don't you think about that all the time?' and I said, 'honestly no.'  I think you'd drive yourself insane because as far as I'm aware that's not happening anytime soon.  Maybe in the distant future but not right now so I don't like to tease myself with those thoughts.  I just try and take one day at a time.  Today is a bit different in that I am thinking more long-term and thinking how the feck am I supposed to live like this for the rest of my life but generally I don't think like that. It's just got to me today and it all feels a bit much to bear but I'm sure that's normal when living with a chronic and incredibly shit illness.

My mum just texted me to say how are you and I told her not good and I've had enough and as I pressed 'send' I felt guilty.  No mum wants to hear their daughter is suffering.  She told me off recently because I had a really, really bad day to the point where I actually couldn't get out of bed so laid there all day with no water or food and she said I should have told her but I don't like to because I don't want to upset her.  Sami had a huge go at me too saying he would have come home from work or taken the day off but again, I don't want him worrying about me.  If it was the other way round of course I'd want to know but I don't know how well I'd cope with worrying about him.  Everyone copes in different ways and for me I'd rather just be in a room on my own and not have people make a fuss.  Like today, I'm suffering badly but I don't want anyone here, I do just want to be on my own, in my bed.  I've got the curtains closed and I'm just shutting myself away and that's how I like it.  I wasn't going to write today but then I thought hmm maybe I should because I was feeling soooo down and actually it has helped.  I am feeling slightly less breakdowny! Wow the powers of writing.  I seriously recommend it.

I am gonna go to my parents house tomorrow though.  It's not healthy to shut yourself away like I have today.  I even turned off my phone so no one could contact me.  Mum said she will cook me dinner tomorrow so that will be nice.  Hopefully tomorrow is a better day.  That's all I can do really is hope tomorrow is not as bad.  

Right on that note I'm going to go and continue to hide away from the world.

I'll be back soon. xx


  1. I'm stuck in bed too with an infection and lupus attacking my lungs. Going to be admitted to the hospital if something doesn't improve by tomorrow. Lupus sucks. It totally changes you. I used to be the nicest, sweetest most patient person ever. Now I'm hostile and bitter and just pissed off from the pain all the time. Bah humbug.

  2. I feel for you Joy and I wish you a speedy recovery!!!