I’m not feeling too great at the minute.  Still.  My joints hurt so much, my wrists, hands, ankles, shoulders, hips… the pain is like a gnawing ache, and it moves around, floats from place to place in my body.  Isn’t that odd?

The tiredness is terrible.  I can’t wake in the mornings and then fall asleep all day, it’s the fatigue that is so hard to deal with.  The exhaustion makes me feel useless and like a sick person, it sucks out all energy, not just physically but mentally and emotionally.

I saw my GP this week and had some blood tests.  He suggested it could be a flare up of Ulcerative Colitis.  Isn’t that a joke! I thought removing my colon got rid of this bullshit but it turns out it’s all these ‘extra intestinal manifestations’ (I know this sounds like a ghostly poo but it means when the disease affects other parts of the body).

My eyes are so dry that I can’t open them in the mornings and they itch all day, my mouth is constantly dry no matter how much I drink.  My skin is dry, my legs are white with the skin coming away.

I’m going back next week for the results, if my inflammation markers are up then I potentially will have to have a course of steroids and go back under the gastro team at the hospital.  He also tested for Rheumatoid Arthritis to see if that is what is hurting my joints and so I just need to wait and see what he says on Wednesday.

Im not a great person to be around right now.  I don’t want to talk to people, I don’t want to go out.  I make myself do the things I have to do, but really want to just be hiding in the duvet cocoon.  The problem is because I talk so much normally (read: I’m a gobby cow), that when I feel hurt and sad, I go quiet and this worries those closest to me.  There’s a phrase on that TV series 24 when an agent turns off communications usually for their own safety or for the safety of those around them, it’s called ‘going dark’.

Going Dark: When an individual disappears or suddenly become unavailable or out of reach for an undefined period of time, generally for security reasons.

This describes me right now.  The only place I can deal with sharing at the moment is on my blog.  I know this can seem difficult for my husband and friends but it is all I have at the minute.

I feel so sad.  I thought all these surgeries would make me feel better (and I have to keep reminding myself that I AM better than I was) but it is hard to still be a sick person.  It’s silly because I always knew there was no cure for Ulcerative Colitis and that it is a life long chronic illness, an auto-immune disease that means my body is fighting itself.  But after everything I have been through, I just want a break.  I don’t want to be fucking ill anymore. I bloody hate being a poorly person.  I despise the burden I become to those around me.  I can’t stand that my lovely boy, the best person in my life, my husband Timm has to, yet again, bear the weight of my illness.

I’m sorry this post is so miserable.  I sometimes feel that I made a rod for my own back in being so god damned positive all the time!!! I feel I am letting people down when I feel sad.  But in a way, it helps.  I’m reading back all that advise that I give to others and remembering that I need to take it myself.

And so with that, I am going to try and treat myself a little better, sit in the sun, paint my nails, read a book.  Do the tiny things that I can manage that will ease my mind and warm my soul.

Thanks for reading

Sam x