Living with sarcoidosis, the good, the bad, and lots of in between.
Demons appear without any warning
They stare at me like in mourning
All those noises are silently heard
Much preferring the early singing bird
Try my bike knowing I can’t play
Best go for a walk looking for Rose’
Keeping active is such a cover up
Look at Stu he’s such a crazy nut
On a guitar is it just a show
Me myself and I, we say no
27th July 1964
Until when, I don’t fucking know
Stay away
Free my day
Talk to me
Let me free
Today is again, it’s just a gain.
Volume 11 live at Delius Bradford, this original track is simply brilliant, a young band simply going through the learning process to bigger better things, keep it going guys…
http://youtu.be/E0yejVmqWpw
And a great version of Take Me Out;
Early years and teenage times, but at what point do I mention those times – now! I started hanging around with teenagers when I was about 5-6 years old, running with those guys and missing a turning and falling what seemed like 6’ onto the old railway tracks, amazingly I landed on a mattress, they came back and I can remember them saying “he’s not moving is he ok?” I opened my eyes and up and off we went – I had fallen some way over the wall and landed on a mattress… I so wanted to be a teenager!
Continue reading ‘To be a Teenager‘.
I just had to do it, having £10 in Boots vouchers to spend, Lynx had this offer on for the manwasher, I finally used it as advised and used the showertool to make my skin an equal pink all over, very nice but I just could not reach some areas… offers from nice and gentle females welcome!
Well well, these new fruit juice cartons of Tesco’s that they claim to be easier to open, not so im afraid, tried a few times and failed terribly, but could it be my overly strong thumb?
After pulling it up quite softly I ended up giving it a really good tug, and yes, the easy opening pulled off quite easy!
And so I reverted to the best knowledge I could and stabbed a few holes, this worked a treat, Tesco fruit juice containers, yes I will be passing on the message to them!
Simply raindrops all coming together, forming this torrent, immensely impressive, not to step to close though!!! This is approximately three miles down stream from Bolton Abbey and The Strid Wood, a gorgeous part of the Wharfe Valley.
Today I got news that my chest is improving, substantially it seems, so, all round it appear’s my fallen apart body its finally pulling together again! I must really say that all the walking I have been doing must have been helping, next is to get on my bike and get some cycling fitness again. Exercise sarcoid, it really can help, feeling quite happy, living with sarcoidosis! Bring on that appropriate employment.
This last corner entering the finishing straight is not for the faint hearted, the video is a little deseiving as to just how fast they are travel, and a great win for local rider Scott Thwaites, second claim member to my club the Ilkley Cycling Club.
A superb evening with fantastic atmosphere, I was very happy to be involved with the marshalling.
So I have now gone from Employment Support Allowance to Job Seekers Allowance, job centres are superb places, how ‘healthy’ folks stay unemployed for life is a little beyond me, I guess its simply part of that cycle, and next Monday its my personal job helper or whatever. A job by the Autumn should be a decent target for me, silly me thought companies had to take on a % of folks with illness/disability, but, as its been pointed out including this morning its only those companies above a 250 workforce and I would need to be registered. Not to worry, Autumn is a decent target.
Sarcoids can work but we can be a little limited, for me none starters could be; healthcare – illness needs to be avoided best possible, manufacturing/engineering – fumes need to be avoided best possible, plumbing/construction – dust needs to be avoided best possible. Though I was very good in the Lean Manufacturing environment, maybe a warehouse, retail, work from home? need £16k gross to get by…
A nice eye to sign on with!
It went unbelievably one sided, this is now my response;
Hello.
Where do I start…
Well, I believe I can appeal the tribunal decision if faults are found within one month, I have already found fault with the initial tribunal report.
I have wrote to ask for a copy of the judge’s hand wrote ‘statement of reasons’ as loads is wrong, for example I was in the room for about 45 minutes, I was told it would be no longer than 25, it was only about the last 10-15 minutes they actually started to go into a small detail of my sarcoidosis inc eyes, all the other time was spent going over ‘mental’ health problems, that I was completely unprepared for, ‘do you carry a crises card’ well in-fact I do and showed it, yet I was at the tribunal because my then – 2nd June 2011 works doctor (DR Smith letters), GP, and chest consultant all said as of 2nd June 2011 I was not allowed to work due to sarcoidosis and the Prednisolone, I lost my job, yet Atos and your government system say otherwise. The tribunal are hugely at fault. If I had known it was going to take so long I would have taken someone with me for support.
Just one of the fault’s is this; (tribunal 1) they say my eyes only bother me for 30 mins in a morning, that is roughly what they are like now, but for a minimum of 30 minutes, it can be anything up to three hours, last June 2nd 2011 I was on the back end of Bilateral Uveitis, my eyes could take all morning to start functioning OK-ish, this is when the tribunal is supposed to be based upon, other stuff too, the 11th Feb 2011 eye test with Atos was later in the day, my eyes had started to function OK-ish by then.
Have a good look at the attached eye photo (10th June 2012 eyes) as for today – 10th June 2012 is a typical look, my eyes blow blood vessels pretty much daily, can feel like pins being driven into them, so this is the present, uncomfortable, painful, cosmetic, but I can cope, last June it was very different.
I felt fully intimidated and under pressure, I felt I could not get my 2nd June 2011 circumstances across, by the time they had finished interrogating me about mental health I was completely at a loss of where I should have been explaining about my sarcoid and subsequent loss of employment.
This is a massive lack of reasoning, its very simple, on the 2nd of June 2011 I was not allowed to work, I was quite ill to say the least.
I will visit the Keyhouse drop in centre, I am also seeking advice on which media direction I can now take this, don’t forget Paul Burstow (PB2) ‘we are committed to improving services for people with this (sarcoidosis) and other long term conditions’ and then his departments next response is that it is not their department huh…
You all seem to forget, though much of me have improved, my lungs and lymph nodes are now in a worse condition, but thankfully appear stable…
The tribunal was a complete farce; the whole system is a disgrace, and the grotesqueness to those who are honest, with facts and genuinely ill is unbelievable, but now I certainly believe what a bizarre system it is.
I trust you will now contact who ever you need to contact on my behalf, I have been completely mistreated throughout this.
Stuart Briggs.
