Dedicated To Stuart
The Stuart of the Past
The Stuart of the Present
The Stuart of the Future
But
Most of all to
The Stuart inside of Us.
On March 24, 2009
We received the following post.
I’ve been very depressed recently. Well for about two years, since I had to give up working (strange as I despised working anyway). I have been in a lot of chronic pain (for which I wear fentanyl patches, which don’t seem to do anything, and take loads of oxycodone, which makes me high but doesn’t do a lot for the pain except make me forget about it for an hour or two I guess). This is interspersed with episodes of excruciating agony, which in a strange kind of way is quite a nice change, as I get to go to hospital and have pretty nurses give me lots of drugs… In fact I despise hospital and always take a huge stash of Valium with me to get through it, but still it is a nice change from the tedium of my “life”. At least I can administer a dose of endorphins by simply trying to stand, before screaming in agony and collapsing.My life consists of lying in bed, taking drugs and sleeping. The highlight of my day would be watching a re-run of top gear that I’d only ever seen four or five times before. Every movement hurts, so I don’t move. Because I don’t move, I hurt more.
I am so fatigued that I can’t move much anyway. One day, about three weeks ago I left my darkened room because I had a doctor’s appointment (which needless to say was hopeless). I was so knacked I could hardly stand. Perhaps it is finally time to accept that there is nothing that modern medicine can do for me? I’ve tried all the drugs, all the ANTI-TNFs. Nothing works anymore. Perhaps it is time to make that ultimate decision – do I want to live like this anymore?
I find no enjoyment in anything. I used to be a bit of a foody, but now I have no appetite for anything. I used to love to drink; now I can’t touch a drop without gagging. I used to love smoking cannabis, but now half a joint leaves me sick and psychotic. I have no libido whatsoever. I have no friends that I am still in touch with. I left my girlfriend because I felt guilty about F-ing her life up and I don’t expect that anyone would ever want to love me again. I am so lonely. I don’t speak to anyone for weeks at a time. I leave my room only for the excruciating task of going to the toilet. I will never be able to fulfill any of my dreams. I will never be able to have any fun again ever. I will never amount to anything. I will never have any success again. I will only experience pain and depression. I don’t even want to try anything anymore. I always said that I would never consider suicide but I don’t want to live anymore.
All I am is a f…..d up, depressed junky, lying in his own filth, never doing anything or speaking to anyone, only ever experiencing pain, overwhelming fatigue or depression. Usually all 3 at the same time. I never do anything for anyone, all I do is fuckup everyone else running around after me.
That’s no way to live is it?
His pain affected a lot of us in many ways. We all came together to show him that he was not alone. Our post showed him that we all cared and would be there for him.
Later on Stuart posted the following.
Hi Guys,
I really want to thank everyone here for your time, your thoughts, your support and your messages. I only just checked the message board again yesterday and was really absolutely blown away with all the responses. Thank you.
I guess we all have our struggles and I just hope that maybe someday I can help support some of you guys as well as you have supported me.
I was a bit overwhelmed yesterday and just couldn’t face writing a reply. I’m really very sorry if I’ve caused people to worry. I didn’t intend to or in my wildest dreams expect that I would have done so. As I said I’m not really into the whole suicide thing and when those thoughts come into my mind, as they have been doing recently, I try to dwell on them for the least amount of time as possible.
But it has been 2 years of not really enjoying this kind of non-life that I’m experiencing. So, I mean, how long do you give it? Another 2 years? Ten years? I’m only 27. I could be in for an another 60 years of this unpleasant experience that living has become. That’s why I wouldn’t “Rage against the dying of the light” if I happened not to wake up one day.
I also wanted to make sure I read each and every reply properly before replying.
I am on antidepressants – currently 150mg sertraline per day and amitriptyline 50mg before bed. The amitriptyline I have only just started taking and will probably go up to 75mg shortly as it helps me sleep a bit better and does seem to help with the pain somewhat. I’m not sure what, if any, anti-depressant benefit I get from it though.
The sertraline I have been taking for about a year I guess and although the dosage has been increased – 50, 100 then 150mg – it doesn’t really seem to be doing anything. I did try a different sort before that which also didn’t seem to do much. Both were/are SSRIs I think, well they are the same type anyway.
I am having an assessment with the mental health guys in a week or so, so things are in hand I guess you could say. I do know that it isn’t right to be feeling the way I am, and I do want to get better. But it’s a daily slog that’s been going on for 2 years now and occasionally I have a day or 2 when things are… OKish, but usually not.
Although I appreciate every reply, I am unfortunately not religious, so I have a bit of a problem with the “God knows it all/Jesus is with you” kind of idea. I have always said that I really wish I was religious, I’m sure it must be a real help in times of despair, but I’m just not. I’m generally a very logical person.
But I really want to thank you all again for each and every message of support. This message board is a rare place of understanding and support when there’s no where else to turn and your messages of support and understanding have given me a boost when I needed it.
So, I guess I’ll hang in there and wait to see if the mental health guys come up with anything in a week or so.
Thank you everyone.
Stuart
P.S. Big thank you to the guys who messaged me directly. Again, I’m amazed but very grateful that you would take the time for someone you have never even met or know. Thank you guys.
Father pays tribute to IT whizz son
By kgardner
A HEARTBROKEN couple cut short their trip to Spain after their son was found slumped dead over his computer.
IT whizz Stuart Ray, 27, had written to doctors days before his death pleading for help in dealing with the rare illness he was battling.
His father Paul Ray, 61, has paid tribute to his ‘fun-loving son.’
“His illness did not stop him from carrying on with his life,” he said. “It was only recently that it had flared up again and he was in a lot of pain.”
Just days before his death, Stuart wrote: “My life is bordering on intolerable”.
Stuart, of Wye Road, Borough Green, was a former employee at Chartland Associates in Bradbourne Road, Sevenoaks.
Diagnosed as a teenager with ankylosing spondylitis, a chronic, inflammatory arthritis and autoimmune disease, it was only in recent years he had been unwell, suffering bouts of excruciating pain.
Stuart, who grew up in Borough Green and Platt, was found on September 16 by a family friend who came to work on the house. His parents think he might have died the day before.
His death is being investigated and parents, Paul and Jill, have spoken of their shock and grief. Mr Ray said: “He was sitting at his computer. I think he must have just stopped breathing.”
The Rays had persuaded Stuart to return home from Somerset last autumn after he was refused medication strong enough to ease his pain by health authorities there.
At the time of his death he had swapped his opium-based drugs for morphine.
Mr Ray said: “He usually coped well, but he had lost a very good job because his back had flared up again and he had split up with his girlfriend.”
The former Sevenoaks Prep and Sackville pupil was a talented IT consultant, gaining his Microsoft certified service engineer qualification at 17.
Mr Ray said: “As a kid we would buy him a computer and he would want to take it apart to see how it worked.”
He started his career at Chartland Associates in Sevenoaks, worked in The City and later moved to Somerset.
Able to earn £1,000 a day, Stuart, a vegetarian who enjoyed writing poetry, enjoyed the finer things in life such as cooking, fine wine, expensive restaurants and travel. He went to Glastonbury music festival every summer and last year took an open-top car from Memphis to Las Vegas and the Grand Canyon.
His illness was similar to rheumatoid arthritis and meant his bones fused to his spine.
“When his back flared up he needed strong painkillers,” said his father.
“He knew if he took opiates that he would be addicted and would need to come off them again, and it was the same with morphine, but he had a daily prescription so he couldn’t abuse it.”
The Rays and their surviving son Andrew, 31, are waiting for a toxicology report.
An inquest has been opened and adjourned.
Stuart’s funeral will be at 11.30am on October 16 at St George’s Church, Wrotham. All are welcome.
I (Cookie) remember this like it was yesterday, today is May 7, 2011 World AS Day.
With every word I type I feel his pain and mine. I feel his loss and mine.
I don’t have the answers but I do have the questions. I don’t know the facts but I do know the truth. I may not have the education to type the words correctly but I do have the passion to be heard. Let this be a reminder to us all on this day. That the reason we had World AS Day, AS Awareness month, Spondylitis Association of America, Ankylosing Spondylitis Awareness Project, Spondyville, Hurting But Hopeful, Hope and Apples, and Walking on Time Square is because each and everyone of us, has a part of Stuart in us.
It doesn’t matter if you create a town, it doesn’t matter if you blog, it doesn’t matter if you raise money, it doesn’t matter if you face book, twitter or blog, it doesn’t matter if you chat on line, talk for hours on the phone. It only matters that you do it. It only matters that each and every one of us has an important part in having our voices heard
Remember
Every role or part you contribute to this cause is all equally important.
To all of those who are able to
Stand Tall
And
Make your voice heard.
Remember someone sits quietly
In the background offering
You whispering words of
Courage, hope and wisdom.
Dedicated to Stuart
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