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Hi everyone, for all those in the dark as what exactly has been happening, I decided to write to the Guardian "Experiences" with the following:

 

"From the age of 17, apart from my years at University studying music, I had always worked.  And then at 42, I developed a permanent condition known as 'Primary Lymphodoema Tarda' (cause unknown) and had to give up work. This debilitating condition causes my legs to retain water and swell from the feet upwards.  It is very uncomfortable and extremely inconvenient because I have to lie horizontally with my feet elevated at every spare moment.  However, the worst symptom is that it leaves me extremely vulnerable to cellulitis, a fatal disease that is treatable with antibiotics.  In the last five years, I have been admitted to hospital as an inpatient for IV antibiotics at least once a year, and have often had it treated at home with oral antibiotics.  It is a very painful disease, and after the infection has been neutralised, I have always been left with a series of ulcers on either one or both legs.  These ulcers are horrendously painful, and can only be treated with compression bandaging that makes the pain even worse.

In October of last year, after one particularly vicious strain of cellulitis, the ulcers created in the aftermath of this disease caused me to suffer the most excruciating pain I have ever felt.  I have a history of opiate dependency due to several bone fractures over a period of years when alcohol got the better of me (I don't drink at all now) and I was prescribed with very strong codeine/dihydrocodeine tablets for long periods of time.  This has also brought on a tolerance to such analgesia.  At the time I was being treated by local addiction services with a reduction regime of buprenorphine (an opiod type drug that relieved my withdrawal symptoms and blocked the opiate receptors in my brain so that any more medication of this nature would be ineffective). Therefore, when I was in this horrific pain, I could only be prescribed with anti-inflammatory painkillers and nerve painkillers such as gabapentin and pregabalin, which were so weak, I hardly gained any relief.  All I could do was lie down with my feet up to lessen the suffering only slightly.  I couldn't keep a clean house.  I couldn't prepare cooked food.  I certainly couldn't stand at the sink for half an hour and wash up.  The most I could do was get a bowl of cereal, or grab a cup of tea and a sandwich, and rush back to bed.  The housing association to which I am attached applied unsuccessfully for social care.  My neighbours (the best next door neighbours anybody could ask for) would often bring round a hot meal.   Even my personal hygiene started to suffer.
I tried everything I could.  I wrote to my MP, who had helped me in the past, to try and be admitted into one of the training hospitals in London.  He was very sympathetic and put me on to the NHS Trust who then recommended that I contact the local dermatology unit.  However, I had already seen them, and all they did was truss it up like a Christmas turkey with compression bandaging.  In all fairness, if I could have tolerated this even more acute pain, the ulcers would have become smaller.  As it was, I was in enough pain already, and the ulcers were getting larger every week.  Finally, after contacting the pain clinic who liaised with my GP and my addiction doctor, it was decided that my reduction regime should be put on hold whilst I was suffering like this and my addiction doctor prescribed a faster reduction of buprenorphine, and introduced pure morphine into my system.  This was a very slow process, so my GP helped it more by prescribing dihydrocodeine and diazepam. 
However, it wasn't until about August of this year that the pain had just about become tolerable.  Therefore, for about ten months, I had been suffering for about 9 or 10 months without any respite.  The pain was like having red hot metal pressed under my skin.  It was very acute and unrelenting, and became so bad that I would hallucinate.  I became claustrophobic and afraid of the dark.  I am 47 years old and have not actually wept from physical pain since I was a child, but here I was, ringing up my elderly parents in the middle of the night and crying like a baby.  Suicide was never far from my thoughts, although I never mentioned it to anybody, and I probably wouldn't have had the guts to do it.  However, if somebody had told me I had an hour to live, I don't think I would have cared much by that time.
Meanwhile, the ulcers on my leg had trebled in size.  By now, I was being prescribed 300 mg of morphine, 300 mg of dihydrocodeine, 175 mg of diazepam, plus all the other painkilling drugs, prophylactic antibiotics and anti-depressants every day.  So now that my pain was being managed at a tolerable level (I have never been completely pain-free), I turned my attention to the growth of these ulcers and used the 'choose and book' system to secure an appointment with the Queen Victoria Hospital of Plastic Surgeons at East Grinstead.  Upon arrival, the consultant very abruptly informed me that there wasn't enough blood reaching the surface of my skin to heal the ulcers and skin grafts would be necessary, otherwise I would have to have my leg amputated.  He then said that there was a small chance of the grafts actually holding and pre-booked me for an operation in October, a whole year after I had first contracted the disease that had caused these ulcers.  So now, having reached the stage where I could tolerate the suffering, I had to contend with a possible future with one leg.
I am pleased to say that apart from one or two complications (another infection), the two largest ulcers have been successfully grafted and are getting smaller.  However, I am still having problems with the ulcers on my toes, but thanks to my medication, I am able to tolerate dry dressings now which are more effective.  Nevertheless, it is essential that I lie on my back with my legs elevated whenever possible.  However, that it is a minor inconvenience compared to the terrifying and agonising ordeal that I suffered during the months beforehand, and it will haunt me for the rest of my life."
Hopefully, you'll have some idea what's been going on now.
Feeling a bit better now,
Cheers,
Simon

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Comment by Calle Edlund on February 17, 2012 at 2:40am

Pew.. I'm glad you're doing better. Have you looked into your diet? I'm not an expert but I think the body can do wonders when it has all the resources it needs. If you haven't already go study some nutrition and check out raw foods. Not that I'd recommend a 100% raw food diet but I think there is much truth in the concept.

Comment by Simon Godden on December 10, 2011 at 4:55am

Thanks.  I'm sorry about your father, and I have to say that some pain just cannot be described and to suffer for seven months and then pass on, just leaves me speechless.

Comment by Olivier Glissant on December 9, 2011 at 12:40pm

My father left this world this year after seven months of excruciating pain. I saw him cry for the first time in my life on his hospital bed, at the age of 82.

I'm so sorry brother, but I'm glad you're on the way back, and I hope you only get better.

Comment by Simon Godden on November 29, 2011 at 11:58pm

Yeah, it was pretty horrible.  You know when you accidentally put your hands in nearly boiling water, and you whip them out immediately.  For one microsecond you'll feel this "tizz" of excruciating pain that you quickly recover from.  Well, I felt that "tizz" for 10 months.

Comment by Adrian Allan on November 29, 2011 at 3:12pm

wow, that's pretty heavy stuff to say the least. Hope you make good progress from now on - no one deserves to suffer that much.

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