It's been all about the uc lately. Everytime I think I feel awful the next day I'm like 'pah! yesterday was nothing. compared to how terrible I feel today'. Still, I am a great believer of everything happens for a reason and instead of thinking about how awful this disease is. I try and think about how nice it is to curl up in a blanket with a cup of hot chocolate, watch some animated batmans and really enjoy the time I'm not on the loo!

I've had this disease since I was 14-15 so that makes it 9 or 10 years I've dealt with it. I won't deny that I sometimes feel like nothings changed since that first year. I still find my body so unpredictable and making plans for things like leaving the house and trusting that my UC won't play up seems near impossible. I'm also terribly tired of medications working for a couple of months to help then things getting worse again. The consultant's and blood test and threats of another Stigmoidoscopy. Not to mention the accusing looks from the doctors when you don't get better. Like I've done something wrong.

Then again. I was reading Michael J Fox's book about parkinson's disease and saw that he referred to Pd as a 'gift' because it lead to so many new experiences and changed his perspective on things. That got me thinking, as hard as it seems could UC be a 'gift'?
    What have I got out of it? Well first off me and my sister are so incredibly close now. Before I went in to hospital we would yell and bicker both of us nearing our teenage years, we couldn't be in the same room without arguing. I could never back then imagine we'd be sharing everything now. Living together, money, A dog, drawing, Supernatural, Batman, House, Mentalist, Books even clothes! We hardly ever argue now and when we do it's because of concern. You could say that might have happened anyway without UC. No. She has looked after me since the day the doctors admitted that there might be something wrong.

I remember being in hospital and how terrified she was seeing me there. When I got out of hospital I was so exhuasted I would just lay in a cover on the sofa all day between running to the loo. she'd always be there fussing over me. She still does it. In school some stupid boy a few years older than her said something like "Did you hear your sisters Dead" and she punched him! Square on the nose. Lol! My parents were called in to the school and everything.
Later she quit college for me. She gave up her dreams for me. She never ever has held that against me. She has never ever called me a burden. This uc experience has made me see how much She, my little sister, the little brat she was changed so quickly in in to someone who is always there, who takes care of me. Who on Monday came home early from work taking the rest of the day unpaid because she wanted to take care of me. Run me a bath, make me something to eat, hold my hand while I fell asleep and stop me crying. She's only 21 and I think she is amazing. If this was a parallel universe where she was the ill one I hope so much that I'd be as caring as her....I doubt it lol, but I can hope.

Uc has also made me realise that normal is good. I am so happy that I have a house we rent, a great relationship with Mum her husband and my Dad, and of course Mandy. I handle our money Okay, we don't have loans,credit cards or store cards. The best days for me are drawing, watching a bit of Tv, listening to some music having a nice dinner and being up all night not because of uc but because we're on our laptops sending each other music files.

Ramble of the sleep deprived.

The cons.
Oh dear. A bad night. Thanks colitis. woke up at 11.30pm having gone to bed at 11 and spent then until 3 30ish running to the loo. Then even when I don't have to use the loo anymore the pain in my stomach means there is no way I will get to sleep. I'm going to ignore all the blood because I am so rubbish at taking my medication and I know it's my own fault.


The pro's.
I have an awesome android app called 'the pulse' and I literally spent the whole night reading every article from all the papers linked on it. I learnt an awful lot. Like Did you know Rastamouse is voiced by Reggie Yates? Trust me, at 4 in the morning that's just the most fascinating thing. lol.

   Also my dog was making me laugh by scratching at the bathroom door. Usually he does this out of concern but last night (this morning!?) he just seemed more peeved that I was up. Sometimes it's like living with a parent. If me and Mandy are up real late he will sit by the stairs and stare at us until we go to bed.

anyways...I best try and sleep. Really I'm just gonna watch some more Batman:brave and the bold. Which is the must trippy, funny and fantastic Tv show I've seen. Love him.

Oh my God she went out of the house!!

This. An appointment to my Doctors. No big deal. Well you should have seen how upset I got by this.

Me and Mandy were out wondering round town (she makes me go out at least once a week) doing a little bit of shopping. I just couldn't stop thinking about all the mess in the house and how we should be cleaning instead. My sister said how we'd sort it later but I got myself very upset over it. Then it happened! She stormed off. I texted her to come back. She told me I was "Out of control". Referring to the fact that my worrying and anxiety was overtaking me, I guess.

Well she did come back. She gave me this. She says that the shock and hurt on my face made her feel really mean.

An appointment. This is to see my doctor and ask to go on some anti-anxiety medication. I'm so suspicious of doctors. I had a theory that they gave people cancer or other diseases if they get bored of them. Like an underground network. I don't trust the medication they give me. Rationally me and my therapist talked that through one session. Still I can't help slip back when I see a doctor or consultant. I spend so much effort trying to calm myself down. It's just a huge stressful thing.... Plus if there is a network who is to say my therapist wasn't a part of it and trying to cover it up.

So yeah you can get why I see an appointment as punishment. We came home and I went straight to the sofa and cried my eyes out. I felt really truly betrayed. Like I said to her, she's okay to go to the doctors as punishment if we have an argument. If she argues with me I don't have the luxury of calling her out of control and getting a doctor to sort it.

Now I'm calm and rational I see that my worrying is getting worse. I just can't stop it. I won't trust the medication as far as I could throw it but I am sure I will take it. Just to please Mandy. Make her life a little bit more comfortable. I'll see if I really go tommorrow.

In other news. I went out!!!

The Secret Egypt exhibition launch at the Herbert. I went with Mandy, Mum and John. I was so nervous. We got to Coventry and I got out the car and started walking but suddenly it felt like a movie. All the cars, and Lorries, and People and the noise. The lights were blinding. I just felt everything wizzing and I couldn't catch my breath. A panic attack. CONTROL YOURSELF JO! And I did. I remembered that I needed to stop the adrenaline. Breathe normal, carry on. Distract myself. My therapist's voice pops in my head 'self soothe' 'don't catastraphize'.

We made it to the gallery and it's beautiful and so many people were there and I was wearing a dress(!!). The artifacts were amazing. I love Ancient Egypt. I have so many books on it. I probably spend half my life watching documentaries on pharoahs. I have become somewhat of a fan-girl for Akhenaten. They had Akhenaten stuff there. Just awesome. In the true sense of the word.  They had replicas which is explained in the exhibition, and real stuff including a real Mummy. All the tiny jewelery was amazing.  Fantastic. Really enjoyable. I learnt a lot. What I still can't get over is just how amazing it is to have something from 2,000 to 3,000 years old here, now, being admired. Wow!
We're going to Birmingham to see what Egypt stuff they have soon. Hopefully that will be just as great. Spoke to Dad on the phone and he said we should go to cairo. How amazing would that be.

We came out of the gallery and Coventry Cathedral (which was opposite) had the bells going. The others wanted to go and see. All I could think of is how much I needed the loo. That familiar panic set in. I thought fuck it! This is a great moment and my illness has already ruined so much and it will not ruin this!. So we saw the bell ringers. Then we admired the statue of Lucifer and St Michael which in the dark with the bells and the rain is the most scariest amazing thing. A proper fantastic, remember for ever moment.
  Mum and John dropped us home and I was buzzing. I had seen all these amazing relics. I had overcome panic attacks, I had stood amongst normal people. I had even worn a dress. I had experienced these amazing moments and I didn't even have an accident. Great evening.