A Clarity Moment With A Long Explanation!

Wednesday 23^rd October 2013

I was just sat contemplating my navel (excuse me but I am too honest for my own good I am told) on the loo having a painful experience, breathing better than it has been all day. I was thinking about the past few days, the long run up of being so ill I was sat in the kitchen crying and shouting please help me, God please help me. I'd been making a bacon sandwich and scalding myself while making my flasks for by the bed. I don't usually ask for gods help that way, I am not one to pray that way. I felt better than I had for weeks that night in hospital after oxygen and lots of kindness shown to me and a hug from my daughter before the ambulance.

I had the usual argument with the doc who had the say so in whether I was admitted or not about steroids and what I have learnt about them, what I have also heard about increased risks of brittle bones and glaucoma. How they affected my immune system and how they gave me severe cystic acne, which has to be seen to be understood. I looked like a burns victim, I showed the pictures in hospital and to the carer Monday. The doctor wearing the black uniform took a really detailed history, which is a long story and contains much added stress from the way I have missed out on care and been mistreated by the benefits system.

She was lovely called me sausage quite a lot and said at one point about how I know my body best. That was so wonderful to hear, to be treated with care, respect and dignity. She kept saying sorry sausage as she had a few goes at getting the arterial blood sample. She only got a bit and it was looking like I would get the right wrist done as well, which I was already having the weak wrist pain in and had forgotten my wrist brace. The nurse hadn't been able to get a cannula in either and had a really difficult job getting blood out of me. She did say at one point as I went to eat the overripe banana I had, that I had high potassium levels in my bloods.

I cried at one point because I am not always used to being treated with kindness in the health system either. Apparently diagnosis of CFS and mental health issues can have that effect, some dismiss us as needing to pull our socks up or something. The worst thing about that is sometimes pulling my socks up is actually too much effort for me to be able to safely do it. Oxygen and being treated kindly both had a beneficial effect on me and I was feeling better than I had for weeks. My peak flow before going in had been 90, after coming out it was 200. Oddly for the first time ever I wasn't asked to do one the whole time I was in there.

I was put in the ACDU and the doctor really went to town on selling me the need to take the antibiotics. I asked if it was a viral or bacterial infection. He looked at me with almost a look of alarm and confusion. Then told me about how he has seen other people with bronchiectisis (sp? I really will have to learn my new label!) get breathless just moving their heads. I have been that bad. He talked of the damage being done to my lungs. I reluctantly gave in and took the antibiotic after an hour or so deliberating it. Knowing the balance between the damage antibiotics do in the short term awful ibs and the long term further reduce the bodies capacity to fight infection alone and best kept for times it is the last option. I knew really in this instance it wasn't that drastic.

In the morning, when the consultant told me that I was at the tail end of the infection and my body had fought it off, it was like music to my ears. He said it wasn't really going to make a difference in recovery time if I took the antibiotics so it was up to me. I decided against it and rather kicked myself for being pressured the night before but forgave myself at the same time. I was so much better and sent home, which felt good. I had felt safe and had been supported, empowered by the experience. Of course I find my own empowerment, it seems it was reflected back to me. The more I experiment with the idea of feeling safe equalling being safe and listening to my body and soul, the more I find it playing out in my life. It is often a challenge to feeling safe when conditions of your body can mean you feel closer to death than safe. In a way I suppose the fact that I am pretty sure I have a new adventure waiting when I do leave this body and its earthly bounds, means I am less afraid of dying than living in pain. I would like to live though. I think I have stuff to do. I would love to live with at least manageable pain and far less need for help from others to have a quality of life. I am willing to live with that if it is the only way I can.

Anyway the point started out with the clarity that came while I was in the act of omphaloskepsis whilst having yet another stinky poo since coming home. It may not have been necessary to take the antibiotics but maybe just taking that one causing a thorough purge of my gut wasn't such a bad thing. I don't know. I do wish that they would treat us holistically and help us appropriately as individuals. Talk us through the results of our blood tests properly and what foods would be best for us to eat, suited to our tastes and proportions for maximum chance of well being. We all respond differently to treatment and stress affects us all in various ways. I am sure I would be healthier in an environment that is dust and mould free, with support to get better. Little by little it has been coming to me as I work through all my fears. 

My dreams have been another tangent of my recent story. It seemed so clear as I sat there I need to write my story. I know it will be cathartic and I don't know if it needs to be a novel. There are things that are not mine to share, but I can share all that is just mine and some of the snippets of where my dreams, visions and inspired writing. I don't know, but I do know how it feels when the muse flows through me, I have no other choice but write or type or record what feels the need to be shared or simply aired for my own eyes or those who get to see my journals for whatever reason with or without my blessing. Even writing a private journal is a risk I keep choosing to take. I have a bookcase full when I finally gather them all together.

23.45 Wednesday 23rd October 2013

What led me to write the blog... someone asked if anyone had managed to come off prednisolone* and about DLA...I used to get high rate DLA but when I renewed 2008 I only got low rate...I was not coping well with the fight for benefits at the time and didn't fight it. I refuse prednisilone as it caused major cystic acne in 2004 that was so bad someone I know who was training as a nurse was worried I would get septicaemia. It also affected my moods badly and I am sure it was a major contribution to my immune system going on holiday and refusing to come home!

I did agree to them last year after a lot of pressure from doctors in the hospital when I was admitted last June. I had a different response mood wise because I have worked through a lot of my fears and pain from past abuse etc and as it was a positive experience being in hospital and I had an audience who enjoyed my upbeat mood. I came out of hospital in a state of mania. 

One of the things I noticed with different courses of treatment was that my emotions were the leading erm oh god can't think of the word...well underlies all the problems. If I feel unsafe and unsupported my symptoms get worse and when I feel safe I can have what appear to be miraculous remissions...if I am feeling emotionally low and upset my allergies are more easily triggered and if I am feeling loved and secure I can even cope with someone wearing perfume in the same room...

this is the rest of what I shared there...I wanted counselling but was not given it as it is not available from my surgery. I did have 2 years of it after being raped in 1994 and later starting an art college course, which was a therapy in its own right, exploring my creativity. The counselling was (free) at college...I am editing as I didn't make that clear. I had my first course of pred at the start of the art course but I am half sure the combination of counselling and art and the opening up of my life kept me back to staying a mild to moderate asthmatic. I went on to do my BA in art and trained in various healing techniques including Reiki. Then a year of post grad cert of education to teach in colleges but I wasn't keen on the politics and didn't finish that. I went on to do some counselling skills courses, which encouraged journalling which I continued to do after as my life fell apart around me and my health deteriorated along side, each affecting the other as such.

An allergic reaction to hair bleach in 2003, high dose of pred and then lowered immunity is what led to an unfortunate series of events that I have still not managed to get over enough to have stable health yet...partly due alos to the benefit system keep declaring me fit for work when I am not even fit to self care...

good luck hon...I hope you can find the best way forward for you to find your best well being that you can find...

*I love that they are known as 'devils tic tacs' they do help in some instances but for me they lead to even worse health to follow....this bit I added when I added this to the end of the blog for those who don't know the background to my life story.

http://en.wikipedia.org/wiki/Omphaloskepsis one of my favourite words...smiles