I have started another blog - Johns Background & Personal Thoughts.
I wanted to share the experience & lessons I have learnt personally as a result of starting this blog & website. The "journey" of my personal growth. I hope it inspires.
It is a place for the information not directly relevant to the DLA review. On that score, I will always post here.
However if you want to know why I started the blog, what motivates me regarding this etc.. this blog covers that.
I am a great believer in empowerment. Of encouraging and empowering people to deal and take ownership of the issues they face. I understand that not everyone can do this. Thats partly why this site exists. But where they can I hope this site helps.
If this inspires one person with the confidence to deal with their own issues than I will have achieved my goal.
The reality of the situation is. With funding being cut. With existing services completely stretched. It maybe that you have to rely on yourself more as time goes by. Channel your feelings, fear & frustration, into empowering yourself & others. You will feel better & it is very rewarding. It will certainly improve your personal well-being.
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I have emailed this to Positive Nation.....just an account of an average 'good' morning in my life.
I would like to give you just a small sample of a day in my life as an long term HIV man on medication. 17 years of medication trial & error.
7am:
I wake , anxious, after a fitful night of vivid dreams & nightmares. I feel tired, agitated & not in the best of moods. My body & mind ache as the medication from the day before has done its bit & now worn off.
7.30 am:
I wake my partner, who is negative, put on a strained smile, to let him know I'm Ok really, just another one of those bad nights & I don't want to spoil his day ahead.
He works hard in a manual job that doesn't pay well so hence after 22 years together we cannot get 'married' & in no way will he be able to support us both. ( I could never get health/life insurance so our home would be at risk). The bills not paid.
8am:
I see him off, I'm now alone.....filled with guilt that he should go to work & slog a full eight hours day to help make ends meet. I go through a slow ritual of tidying up dreading having to force myself to eat something because its that time, MEDICATION TIME. Almost all foods I have tried have the same reaction so I put it off for a while longer. Oh get it over with.
8.30am - 9am
A small bowl of cereal & SEVEN tablets in front of me, boy am I a lucky one, ONLY SEVEN! & only once a day.
Down it all goes. I gag at every tablet & then the after taste lingers. A bitter pill.
9.20am
Right, now I can get on. Phone calls, home business, partners business admin. Writing to do lists, things that have to be done, getting my life back on track. Have a goal for the day. I feel GOOD!
10.30am
The pain begins. Searing stabbing pains across my stomach, doubling me up. Opps quick, quick up the stairs, I feel an 'accident' about to happen. The diarrhoea has started in ernest. I feel sick, my stomach feels like a blade has just slice through it. My head starts to ache from the top of my spine up and over to my eye brows, a deep throbbing pain.
On & on it goes, up & down the stairs, bathroom visit after visit.......................................I have an dental appointment today, I tried to make it an afternoon appointment but couldn't so try to get myself together. Washed & dressed I try to leave the house. I get to the corner, OH NO! here we go again. Run back to the house up the stairs on the toilet again. I give up, phone the Dentist & cancel once again. I have to lay down the pain is easing but now the guilt has returned...pull yourself together mate, get out there. Just give me half an hour I know I'll feel better soon. I fall asleep exhausted.
12.30 am
I wake, cold sweat dripping down my neck & chest.
Right I have nothing more to 'pass' The headache pills have eased the throbbing, the sickness pills have stopped me retching. I can leave the house. I hope I look ok, don't look ill, do I? I don't want anyone to 'see' my illness, GOD FORBID there's enough homophobia outside my front door to add to it.
1pm
I'm off , side effects are wearing off thank god, my day begins. ;-) I have hope, I look around me at the people going about their work life longing for paid employment knowing that any job would put more money in the house hold purse, but who wants me? A 45 year old man with out any years experience & with this ritual 'BAGGAGE'.
Tell me who wants me? God knows I've tried & will still try, come what may I'm alive & that's all that matters right now STILL ALIVE.
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As a matter of interest just think how more disruptive this scene would be if I took my medication the night before. I can't as a bowl of cereal for dinner isn't going to keep me going & spending half the night on the bog won't give me a better start in the morning. At what point if I was in employment do I conduct my work from the confines of a toilet cubical, let alone have to explain to anyone WHY!!
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