22 May 2013

Holding On With Dear Life

Holding on with dear life. 

I hate lupus. I want it to go away and never come back. 

I've been in so much pain lately - I'm wondering how I'm supposed to continue living like this, its been 6 months and I've had about 5 good days. I almost feel like I'm being punished. I must have done some pretty awful shit in a previous life to deserve this torture.  

Me:  Oooh I'm actually feeling good lately
Lupus: 'LOL! One sec

I read an article earlier about someone who committed suicide after suffering years with chronic pain. I haven't had any thoughts like that for a while but I'm sad to say I have had those thoughts so I can understand how that guy must have felt.  Dealing with pain everyday is seriously tough and sometimes you do feel desperate. Sometimes you can't imagine ever not being in pain its like you can't remember what it feels like. 

There was a time about a year ago when I'd been in absolute agony solidly for a couple of weeks, the pain was unbearable. I was at my lowest ebb and I remember sitting in the bath, unable to get myself out because of the pain, all the water had drained as I'd pulled the plug, I was freezing cold, shivering and crying like I've never cried before. I was there for a good hour and towards the end I was thinking about ways I could end my life. I knew I'd never actually do it but I was just so desperate to find a way to stop the unbearable pain. I know it sounds extreme but I'd just had enough.  Sami got back from football, came in the bathroom, got me out of the bath and he hugged me. I told him how I felt, he said 'you mustn't think like that. I'll always be here for you'.

That was definitely my lowest point. I rang my mum the next day and she said its normal to feel depressed when you live with a chronic illness and pain  and she just made me feel better about the whole situation. She made me realise that it will get better.  

I've never actually opened up about that before. I guess I kind of feel ashamed because people always think you cope so well and actually there are times when you really don't.

Luckily I have an amazing support network around me so I always have someone to talk to. I talk to my mum everyday. She understands more than most as she too suffers with a chronic illness and she knows what its like to have good and bad days. And she's my mum so of course she understands me.  Sami always listens to me and I can talk to him about anything. My friends are amazing always checking up on me, reading my blog and just being there for me. Sami's family always ask after me and I know they are there for me so I'm very lucky to have all these wonderful people who love and care about me. I've also built up a support network of people with lupus so we often compare symptoms and have a good old rant. So if I ever feel that low again I know there are people there to talk to. 

I'd say I'm mostly positive and when I have a good day I make sure I take advantage and enjoy myself so its not all bad. Lupus is the only thing I really have to complain about and I'm hoping that my doctor will find some medication for me that gives me a better quality of life. 

I can't imagine there will ever actually be a cure but hey, ya never know. I'm gonna hold on to that hope with dear life.

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