20/11/2011

Dear Diary,

Today I should be flying with my mother and son, on my way to the beautiful Island of Jamica.  Unfortunately I was so illl that I could not even move and things just got worse.

My mother had put so much heart and soul into presenting CJ and I with a fantastic christmas present of going to Jamaica for two weeks.  However the last two weeks my health started to deteriorate, I;m not sure whether it was the increased stress from inconsistent care, feeling unsupported by health professionals, financial worries, feeling like a burden to my family, or the change in weather all a combination of everything?  

I feel guilty of how she must be feeling going to Jamaica alone right now, without CJ and I.  She could have taken her husband, but instead she chose to give such a beautiful gift to me, and again this curse of living with Fibromyalgia and PTSD has managed to effect my family.  

As I had cancelled my care my son also had to stay with me.  Things got worse after I had to go and have my jabs to go on holiday, there are significant side effects, joint stiffness, kneck pain etc.  To have these on top of the added pain I already go through was just too much and it was exhausting I just cried and cried.  I was not even able to get up the stairs to go to bed or even be touched to change my clothes for bed.  I slept on my small 2 seater sofa where I have been sleeping for the last week as the bed I have feels too hard and hurts me to sleep on.  Crazy how I have loved my bed all these years but now it causes me pain to sleep on it.

Trying to explain to my parents how ill I was feeling was quite difficult, "...of course I want to go to Jamaica...how will I cope in this much pain doing the journey to Gatwick, then being on a plane then travelling from the Jamaican airport to our destination and being in pain recovering from the travelling..." on top of the pain I am feeling now I just could not cope with more pain not knowing when the pain will end.

Now I have ruined things for everyone, and just want to shut myself off from the world for a while!

28/11/2011

Dear Diary,

I have not written here for a long while because I have been afraid to!

One of the care agencies I was assigned to reported me using social networking sites and threatened me with legal action.  But now I just don't believe it's a good thing for me to be quiet and keep taking all that I have to deal with in silence.

The systems that are in place, educational institutions, certain healthcare government agencies feel like they are in place to just tick the boxes, dot their i's and cross their t's.

For example care plans that are put in place for clients how well or often are they adhered to?

Do people really know if Care Agencies really care of if it is about the money at all times?

I am grateful for the little help I receive which is better than nothing at all, but what compromises do I have to make to receive this help, how much do I have to suffer in silence, how much do I have to take?

People in authority positions of power, people with money they get away with what they want I have witnessed this with my own eyes.  There is no justice for people like me, like my son, nobody cares, nobody is interested, a friend told me "...stop fighting everyone...choose your battles..."  So now I'm done fighting!

I'm getting my son out of this country before his education gets ruined, he has been so disappointed in the systems they have slowly taken pieces of his spirit.  Watching me with my disability is frustrating for him.  Truly he has lost his sympathy at times, and just mocks me for crying, by saying "stop being a baby" but if only he knew the burdens I bare truly, trying to go to college in pain, trying to do buses in pain, trying to walk up and down hills with my sides and hip feeling like I have a open wound someone is shoving their fist in.  Being in college in all that pain and being judges by Tutors who have no clue of what I am feeling the frustration of not being normal, being afraid, standing out like a sore thumb because of how I look.  I tick every equal opportunity box, female, black, disabled.  Struggling financially to catch taxi's home, worrying I may be late for carers.

then there is the memories of accidents gone by being afraid whilst in carers cars while they drive being behind lorries and feeling fear, remembering when I look out of my window I was assaulted there and no one did anything to stop it.  Living with painful childhood memories, I know other peoples lives have been worse but I feel like the cards life has dealt me have been so unfair.

Then I see the light, I see the blessings God has bestowed upon me, my writing, my Radio volunteering job, my beautiful son, my lovely mother, my home, my dogs and life is not so hard to deal with after all, I have to live to fight another day and try to get over my self pity!

Diary of a Black Woman Living with Fibromyalgia 50