Merry Christmas to the good the bad and the survivors

The Christmas session. It's the season of giving. It's the season for caring. Inside me something stirs. Anger. It creeps round rumbling like a smoking volcano. These years it's bearable. Well at least identifiable. I aware there are many kids out there who are not in the same place I am. I'm now 41. I write this on their behalf. I write this in the hope that possibly I can explain to you what they won't be able to for many years to come. I'm presumtious, arrogant but I don't care.

As an angry toddler, child, teenager, young adult etc etc, anger was my most common company. It could be relied apon, it was a feeling that never left. It was something ever present to be managed.

Anger made me "let myself down" anger made be "ruin things" and anger made me "hurt people".

I'm sure you are all aware from various angles of what I'm saying.

Then bloody Christmas come along with all its happy niceness. I was always aware that this holiday was not really for me. It was for nice kids, happy kids, kids who could be cuddled kids and kids who could sit still, kids who would like wearing posh cloths, kids who looked like they were part of a nauseating wholesome perfect family. They were a great threat to me as they exposed all my short comings with total unawareness.

So let me tell you not only did I despise those "nice kids" I would kick and want to hurt them. Make them pay for being so able to be loved and so able to be adored and so able to say the right fucking thing at the right bloody time.

Some times the rage in me when those nice kids arrived or we visited them was instant. Just the look of them and their stupid innocence would making me lunge in thier general direction before a word had even been spoken. Before they could show me up I'd sort them out. I wanted to be better than them, I wanted to show I had control over the situation because I knew Christmas was nice. I was not nice.

I am of corse now sorry for my behavior but back then they just represented everything I wanted but was to ugly and rubbish to have. They and Christmas just made me more aware of the the gulf between me and the rest of the world. They and Christmas just made me feel so lonely and disconnected.  My sadness was only bearable dressed up in anger.

So if you have a carwen I want you to know however bad the behaviour the letting down the side has been, we really just feel very exposed raw and vulnerable. I'm sorry anger may be the only thing we have to use that's safe. I promise you you are loved by your carwen and I ask yet again for you to still love us even though that's the last thing we deserve. I also say sorry to you on your Carwen's behalf because I'm sure that I they could they would want to say that to.

Merry Christmas everyone the good, the bad and the survivors.

Goodbye body therapy

Dear Karoline,

Sorry it's taken longer than I thought to get this email too you.

After our last session when we worked with my arms and I new I had sort of reached the end of what I could manage. I guess with all the things going on in life some places are to distracting to go near. I'm aware this will leave things inside me but I kind of feel it's for the best.

It wasn't an easy decision to make I was so angry with 1-8 and number 9. I couldn't work out what it had all been for if the process was going to be left unfinished. 

Then on the Monday after our last Wednesday the `boat` I had inside me erupted and I had to go to A and E. As it was 3:30 in the morning Gareth couldn't come with me because of the kids. I faced A and E on my own and once I was on a trolley they wouldn't let me walk around so I had to face that, but with the work we had done on the table I was able to and kept on my left side. It turned out I had a stone caught in my biliary tract and three huge stone were found in my gallbladder. My liver was and still is very upset. 

But as people came and went and I was asked a thousand questions I knew how to answer (by sitting up so 1-8 could talk) I knew how to scan my body when there was a quite moment so when the next person came I could tell them how I was `feeling`.

I had drips put in my arms and I new to expect the arm twitching (even if they didn't). I had doctors put stethoscopes down my back and feel under my chin and ears and prod my tummy!!! And I just kept imagining being in the therapy room. Later I was on a ward as they want I monitor my liver and oxygen levels and I knew I needed to have space so asked for the curtains to be drawn.

I'm sure your getting the picture. It was as if all we had done in the year we worked together just came together for that crazy 24hrs in hospital so I could feel safe. All the way through it I kept thinking 'I want this to be positive` don't fall in helpless mode, keep identifying, keep thinking "what you need to do to feel safe". And of corse all the way through I kept picturing you and your liver and the crazy fact that we had talked about that just mad me smile. I can't thank you enough for all you have done to help me get to a place were I am. I've been through that experience and in no way feel disempowered, and managed to communicate and stay my age.

So since that half term week I have also experienced ambulatory care, blood tests every few days, two different GPs, consultants, medical teams, surgical teams, it's been full on!! Tomorrow I have an MRI to check there are no stones stuck they couldn't see on the ultrasound.then they will operate to take my gallbladder out. My LFT's are not getting better so they now want test for autoimmune stuff.

But it been so weird I honestly have no idea how could have done any of this a year ago, it would have been impossible. It's lovely as well for my kids to see me go through this and me still be able to stay connected to them as mum, they have not see me scared. I just say to them 'this is why mummy did body therapy'.

Anyway I know I've said it already but THANKYOUUUUUU!!!!!!!

Keep going with all that you are doing in the field of body work it's so important. I think I the end it will be seen as weird that the body was ever let out of healing!!!!! I hope you and your fabulous liver are doing really well and you enjoy Poland next week. It was a privilege to walk with you this last year and I smile as I know you will walk with many others and help them to.

Joanna

Sent from my iPad

Gallstones

Early Monday morning  I faced something that I thought would be one of my biggest fears. At 3:30am I new I needed to go to A and E. Making the situation even harder was the fact I was going to have too do this alone (my husband needed to stay with the kids). As an autistic adult I knew that there would be a lot on things I might not understand, there would defiantly be triggers, sensory overload and new situation/people anxiety.

My experience at north mid was incredible!

The reception staff were clear and helpful when I arrived unable to talk.

An assessment nurse took time, I gave her my note explaining what was wrong.

The security staff stood near me as a fight broke out in the waiting area making me feel protected and seen. A doctor helped me through to a bed behind the assessment area, telling me what would happen, she told me I was her last patient.

I got introduced to a nurse called Sam, he explained how I should behave (I had no idea what was appropriate or expected), he said that I didn't need to sit up and that I should "be relaxed and be looked after today". A lady took my blood. Another doctor with a headscarf and blue handbag came into the cubical speaking very calmly, she ordered me a scan at 10:45am. She talked to me about a walk for cancer she had done.

I met Rome (sorry I hope I have your name right) the amazing  porter with 14 grandchildren and great grandchildren. Rome likes rum. He took me on the trolley to my scan and helped me to get over wanted to hide my head under my coat.

In the scan room Daniel an (Alex Brooker look alike ) talked about "where's wally' being on his Dentists ceiling. A quiet but solidly confident  man in a blue top looked at all my organs. Daniel also said not to look at doctor Google he is usually wrong.

Rome to my surprise also came back to take me to a ward. AMU. On the ward I met "room 12" Tracey who talked to me about how the drip equipment worked (I love learning things). Then  there was another doctor with a silent lady who held clipboard, a healthcare assistant, a lady from pharmacy, a food lady and a guy who was going to empty the bin, but didn't cause it was not full enough. He mopped the floor and  cleaned so well! (I am  cleaner so I admired how he even did the silver bottom of he doors). Later he noticed when I had moved to bed 22 and said hello.

In bed 22 I saw lily in the bed next to me the lady opposite me who liked ham sandwiches and another who groaned a lot.

 Next came a tall nurse with a  small ponytail. I heard how he helped  the other patients when their curtains were drawn around their beds he as dry kind.

Visitors invaded our ward but we're not allowed to take over control even though they were very loud. Shift changed and a new nurses came, he also looked after the old ladies with compassion kindness and calm. Then came another doctor, a surgical team, another pharmacist, pain relief arrived without me having to ask. The curtain got shut when plucked up the courage to ask.  (I needed to have a break from all the sensory overload). All the other things I was worried about not being able to ask for because I often can't speak when stressed kept appearing, food, tea, water, the heating would come on before you could get cold.

Now mulling over my experience I have nothing but gratitude for all!!!!! Thank you so much!! I thought I was coming to hospital alone.You were all there, ready to step in so that I was anything but alone!!! Your compassion kindness and communication were so good. I always knew what was happening and what I should do. MASSIVE MASSIVE THANK YOU!!!!

Joanna Hawkes