16 Jun 2013

Is there a light at the end of this tunnel?

Hey everyone,

Well its a been a mixed few days since Wednesday. I spent most of Thursday on the sofa wearing my pj's feeling sorry for myself. Lexie came round in the evening armed with a whole load of chocolate and we sat and ate our way through most of it! I really fancied a glass of red wine but under docs orders I'm not allowed until I've been on this new medication for a couple of weeks so I was a good girl. 

I had a rough nights sleep - y'know the usual, night sweats and nightmares but surprisingly and oddly on Friday I felt fine. Not a lot of pain and I wasn't exhausted. I had a walk down into Beckenham and got myself a new hair dryer (I have the worst luck with these, I think I've had about 5 this year) and in the evening Sami and I went to our friends Matt and Jen's engagement party at a pub over in wimbledon. By the evening I was feeling a bit tired and as Sami didn't want to drive to Wimbledon I wasn't looking forward to the 20 min walk to the station and the hour long train rides to get there but it wasn't too bad. The pub was really nice and they had a bbq so we got some burgers and chatted with everyone there - we know most of them so that was nice. I did have a shandy but nothing else. We left about 10.30 which is so unlike us - we are usually the last ones standing but I didn't wanna be on the trains too late plus I was knackered and people were starting to get drunk which I wasn't feeling so off we went. Woke up Saturday feeling like I had the worst hangover ever! Pounding head, nausea plus aching all over. I thought what the feck? Did I get run over by a combine harvester last night???!! So Saturday was spent lying on the sofa in my pj's. Sami cooked us a nice curry and I was made to watch starwars. Sami is obsessed with getting me to watch It so I've finally agreed (only took him 6yrs). 

This ran me over in my sleep....I'm not sure which is worse this or Starwars?

Today I'm feeling like absolute shit. I am in a lot of pain and I feel really, really low. Another day on the sofa it is then. Well, I'm going to go and see my Dad as its Father's Day and Sami wants to take his Dad and Christine out for dinner so I might go along depending on how I'm feeling. Its days like today that make you think how lucky you are. I've been blessed with a wonderful Dad. He did so much for us growing up and he always had time for us. He'd never say go away I'm busy. He worked hard to provide for us and he'd spoil us when he could.  He is a great Dad. My Mum is amazing too she is such a great role model, she always worked so hard, managed to keep a lovely clean home and never complains. I am very lucky.

That made me go all teary.  I'm feeling so low and I don't really feel like seeing anyone which is unlike me. I want to hide under the covers away from the world. I'm struggling to see the light at the end of the long, dark tunnel at the moment.  I guess I'm not coping as well as I normally do. I think its because the pain has been so bad. Worse than usual and when you're in so much pain its hard to imagine or remember what its like not to be in pain and you feel like its going to last forever. It takes its toll mentally as well as physically.  Someone slap me with a wet fish!!! I need to get out of this frame of mind and sort myself out. I'm  not sure how?!  I think counselling might be necessary now. I'm finding it harder and harder to cope and the more I struggle the more down I feel.  Gosh today is not a good day! Let's hope I wake up in a better frame of mind tomorrow. Jesus I hope so! I've cried far too much already today. 

I shouldn't really complain. I have a friend in Australia who has Lupus and its attacking her brain. 3 areas showed up with inflammation. She is currently being looked after in hospital and she said she might not leave. I told her she can't give up as we need to go to Vegas when she is better so she said she won't. Its awful what this Lupus can do. She's only just turned 30. I hope and pray everyday that she will recover. She's so beautiful and has her whole life ahead of her. Keep strong Lisa!!

So you know I was diagnosed with Fibromyalgia on Monday? Well someone (somewhat controversially) has suggested that Fibromyalgia doesn't actually exist and its Lupus attacking the brain. With fibro the brain sends out pain signals to the muscles, other symptoms include anxiety, depression, memory loss, fatigue, night sweats and aches and pains - these are some of the same symptoms as Lupus. When I was diagnosed I initially thought that Lupus caused me to have fibro because I'm always in pain and it might have scrambled my brain and caused it to go all weird. But then I thought how comes fibro has all the same symptoms as lupus? Is it not just lupus? However, lupus shows up in blood tests but fibro doesn't and people can be diagnosed with just fibro and not Lupus. But this person was saying to me that its a misdiagnosis of Lupus. I said but Lupus would show in tests and this person told me that if Lupus is attacking the brain then it doesn't show up in
tests but would show up in an MRS scan. I find this interesting and will certainly speak with my rheumatologist about this. I'm not saying this person is definitely right but I think its food for thought.

Well I'm going to peel myself out of bed, have a bath and go and see my Daddy. Catch ya laters. X


  1. Hi there from a fellow Lupus sufferer. Believe it or not, many GPs not not a few consultants believe Fibro is a makey-uppy illness. Some will even smile in that condescending way if you mention Fibro.

  2. Hi Kevin,
    Its sad because for me it definitely exists! I can feel it everyday!