I understand that I am not the easiest person to live with . I live every day in the past , going over and over things I have done wrong . Wishing so hard that things in the past had never happened , I wish I had the strength to overcome the hurt and the pain.
Our home used to be filled with music, from the minute we got up the radio was on . It was on in the background when we cooked dinner . Now it’s very rare that I listen to music and I know people will think that is silly but so many songs evoke so many memories, memories of good times and bad . Songs can take you to a place you don’t want to be . I don’t want to feel like this anymore , I don’t want these songs to hold so much power of me anymore .
Every day is a battle I’m locked in a prison of my own making , I know that . I’m scared , terrified of letting this emotion get the better of me.
I hear comments and rumours of what others think of me, things that hurt like a knife to the heart . I give others so much control and I know it has got to change . My life is tough enough without that . What gives them the right to judge me. I don’t know a single person on this earth who is perfect . I just don’t fit into there lives anymore. See my friends and family come together in social situations which involve drink , normally lots of drink and that’s ok . I am more of a cup of tea feet up in front of the Tv , well lay in the bed with the IPad on as I can’t make it to the front room. It’s just different and sometimes different doesn’t fit anymore , I know I don’t fit anymore .
My life was once lived for the weekend and now it’s hard to get to the end of the day . My wardrobe was full of dresses to go out in , gowns for balls . Beautiful dresses for black tie events .
There was a time when I would go to The Conti on a Tuesday , Paradox on a Wednesday, Fridays and Saturdays would be the bars in town normally ending in Plummers on Hardman St.
I must say that I worked full time too . Life was good , friends and drinking pals everywhere .
Now it’s so different , I can’t even go the bathroom without help . My bathroom is 8 steps from my bed. This is what other people find hard to accept because they think that I should be able to get through this , that I should fight it . How do you fight against something that doesn’t fight clean .
How do you fight something that every Drs appointment, blood test. Hospital admission shows something else . If I could get up and about I would , think about this for a minute. If you lay in bed all day every day and you can’t move your muscles what do you think happens? Does your body just spring back to what it was or do your muscles start waisting away ? If I pick up something now most of the time I drop it , I have dropped and smashed most of the things in our home . I use a plastic cup with a straw to drink from now. It’s not through choice .
What would you be able to do if you couldn’t use your hands?
Firstly I can’t pick anything up , I use speech recognition to type . I use speakerphone to speak to people on the phone because I can’t hold the phone. I need help going the bathroom. I use an electric toothbrush because I can’t brush my teeth . I can’t brush my own hair , my daughter does that . I can’t cook or clean ( that’s a bonus ) . I can’t dress myself or wash myself in the shower . I eat a diet of cereal , yes things like rice crispies , cornflakes .
On a very good day I can walk with a stick , well until my hands got this bad I could walk with a stick . So I sent off for some fab sparkly crutches , if the weight is distributed over two sticks with the additional support at upper arms it really does help and obviously it means less falls . Woo hoo.
I know I need an operation in the new year but I am desperately trying to block it from my mind.
I think I am at the stage now where I want to pass on any medical intervention . I know tomorrow I could have a miracle and this awful disease could disappear , statistically I know that won’t happen .
I know that every blood test recently has led to another test and then bad news . Do I really want to go through things like a liver biopsy again ? If anyone tells you that they don’t hurt they lie ! I screamed and then you have to lay still for the rest of the day , my place was just in the corner of a hospital ward . Still and in silence.
My last admittance to hospital involved laying in a room on my own with a big sign outside my room stating that I was an infection risk , hospital staff had to wear specific clothing to enter my room and they had to bin it as soon as they left. The nurse gave me a pamphlet about my risks and they included washing my clothes separate from the rest of my family . That I should not share towels or washing items.
I had to have a CT scan which showed a problem which needs further investigation.
So how do you fight ?
How do you smile through all of this ?
Yet is it up to anyone elseplace to judge me ?
I don’t judge anyone . Unless you spend every single day with someone you know only what people choose to show you . Yet look who is still by my side every day and night , My darling Husband and beautiful Daughter .
They know exactly what this illness is and how it effects me and our family . Yet they are there for it all .
They said the sweetest thing when I was in hospital they wanted me home because home isn’t the same without me . My little family is amazing . They judge me with their actions. They are my rocks .
So maybe that’s my win. The most amazing Husband and Daughter and to me that makes me the richest person in the world x