Living with sarcoidosis, the good, the bad, and lots of in between.
What a pretty good and welcome start to the football league 1 season for Bradford City, a huge win over Carlisle, Yeates with a fantastic drive, Wells with an incredible tight angled shot, Hanson using his wrong foot and Jones beating the goalie towards us!
A good few pints before the game went down very well.
I were not going to say but that chapter now needs to close. 13th August 2005 I met someone in the Harrogate Blues Bar, knew her for a few months, and then its a typical middle aged story; messed up minds, crap divorces, meeting crazy people, but, although she went back to an ex something really was about her. She comes and goes in my thoughts and this year I decided to send a valentines card (someone from Harrogate actually recommended that I should), and so its now not a secret as I have decided to share the card.
It is difficult when you think of someone in a manner, they probably do not think of you?
My hand writing has always been terrible. Back in 2006 it was decided that when her youngest was 18 contact would resume, well, its been and passed. No, my life was not on hold, lots happened since then and slowly but surely I am progressing, it would have been great to have had a relationship with a nice honest trusting woman to have helped me through.
The following song I wrote for her, its mainly based on text messages that she sent, and so these pages are now turning.
3. TXTs
Elaine Robinson, it was a pleasure knowing you. Sometimes we are grateful of meeting someone, I just could not remain friends with someone I really liked, I guess others also understand.
So, its the first time in a while, a very long while and onto zero Pred, tomorrow back up to five, then day after its zero, 5mg, 0, 5mg, 0… we do this for a month. Consultant spoke with me yesterday, he really believes my sarcoid is not active (I think it is slightly) and he wants me off the Prednisolone as soon as possible, its confirmed I am now at high risk of bone fracture, and that the osteoporosis is carrying on. My load bearing joints can be very painful, mainly ankles, hips and neck, and so its going to be more scans and consultants, but we can see the light!
Well, its like, this is the first time in my life I have had a redundancy notice. One thing is for sure, my life has mainly been full of a very many hard knocks, these past few years or 10 have been the worse, im not a bad man at all, im kind and considerate, trusting and honest, have great humour with fun, yet, maybe all those combined are my problem, one will never know.
It has been mentioned that other positions might become available, I was trying to think I could progress, oh well, lets keep anything crossed eh.
I’m thinking a bumpy few months to years are again approaching, oh well, I had a few weeks of remembering what it was like to feel relatively normal! This time the ankles are gaining dots rather than blemishes?
The other morning these two pigeons were having a right fight, quite viscous really, a little unclear but they would open their wings right out and then launch their feet at each other, or maybe I was wrong and they were having a mating session?!
Well, the banding of my ‘piles’ failed, and so they decided to give me these, the doctors said that they should be used after each movement, and so, I moved to the bathroom, then moved to the bedroom and then to the kitchen, hmmm, feeling a bit on the full side with these Uniroid-HC suppositories…
Its the first time iv opened a post in that manner. Last week, when last years acupuncture dots appeared on my ankles, I knew the sarcoid was raising its shit head again, in remission for two months and a steady reduction of the ‘Pred’ simply brought it on, proper fucked off.
Also heard I had not achieved the measurement technician position. Upon applying it was mentioned that they need 12, I should have walked it, obviously I didn’t, two rejections in a week, although the first I was way too informal, the second I tried…
Im on £6:60/hour, £13.7k/year, I work so hard, don’t fuck about, great for team moral and humour, huh… Very happy to have been given that chance to get back into work through Leeds Remploy, but the reliance on tax credits is also a major factor, the credits are due to drop early 2014, hence I would hope to progress within the structure, most are on a substantial amount greater than me. I know im worthy of a living wage and not a surviving one, still a few months, yet the sarcoid is here too.
It is so difficult explaining to folks it has returned, I knew last week but dare not say, once I say so then I get folks saying I might be wrong, it might be in my imagination, wait and see, chin up, fight the fucker…
As Bernie Mac said ‘I’m now tired’ in his hospital bed with pneumonia through a chest infection. I had a chest infection and needed anti-pneumonia tablets, still and though im tired, I will push on, I know most mean well, but please do not patronise me, sarcoidosis is a serious shit that causes death.
This is just as dirty as blues can get, never mind the southern states, this is an unknown from West Yorkshire, absolutely awesome (buzz word I know!)…
Hmmm, researched, revised, rehearsed, and readied myself, thinking I have lost my spark for interviews to progress within? used to be terrific. Supposing the last few rough years can count as being pretty hard, then a massive positive of gaining employment through the Leeds branch of Remploy, then further positives of the sarcoid going into remission and slowly getting off the ‘drugs’ allowed me to think about progressing in work.
Over the years I have always advanced within my employment, a little annoyed at myself why I now mess up, the first interview I knew I weren’t good and that I was just happy to get it, this interview I did what I used to do as it would be my ideal, half in the office and half on site, the work itself I know im capable of, but, I struggled to get answers out – that I knew – and so…
In a nut shell, I enjoy what im doing, I work hard, I like the whole group, its just that, in a few months my tax credits will drop, and then, its going to be a proper struggle, a proper struggle brings worry, worry can bring on the anxiety, which in turn can eventually cause my sarcoid to raise its ‘shit’ head, I just need to live and not survive, but it might all be in my mind or am I really a shadow of my former self, rejected?
