Amazed & Grateful

[wolfie]

I hope there's a sequel Dennis, on whatever subject, but I also have a copy to lend for a charity close to my heart. Anyone who wants to loan the book them just PM me, though Meg did get in first.

[Onelife]

I'll be happy to loan my book out for a large donation to the onelife cruise appeal. ......a charity close to my heart

[Silver_Shiney]

I can't lend my copy as it's the Kindle version. Besides, it was so good, I want to read it again.

[Dennis The Menace]

Thanks, Dennis, we'll have to see what the Lady C's work schedule dictates.

No problem Alan, I'm sure we will sort it one day - even if it means me popping down to Flatley Broke during a good spell

[Dennis The Menace]

[/quote]

I'm happy to lend out my copy in exchange for a HUGE donation to St Christopher's Hospice[/quote]

Cheers Meggles If I get any such enquiries from suitable sounding applicants, I'll point them in your direction

[Dennis The Menace]

I hope there's a sequel Dennis, on whatever subject, but I also have a copy to lend for a charity close to my heart. Anyone who wants to loan the book them just PM me, though Meg did get in first.

Don't you worry Wolfie, I had a pigeon fancier from Ellesmere Port enquiring about the book just the other day

I'll give him your details

[Dennis The Menace]

What a good cause, plus enjoyed reading the book.

Thank you on both counts CD

[Dennis The Menace]

I'll be happy to loan my book out for a large donation to the onelife cruise appeal. ......a charity close to my heart

Hey, if it's the Onelife cruise appeal we're talking about, then even I'll pay to borrow one - and I've good half a dozen well-thumbed copies already

[Dennis The Menace]

I can't lend my copy as it's the Kindle version. Besides, it was so good, I want to read it again.

Oh Schucks

[Manoverboard]

Hiya Menace,

Having purchased a Kindle version of your book from Amazon on May 14th 2014 ( it was a Monday ) I thought it would be polite to tell you that I finally got round to reading it during our recent Adonia cruise. It was a fascinating account of events and very interesting but to be absolutely honest with you I was hoping that you would tell us more about the way Mandy was feeling, and indeed coping, with everything that you were going though ... but never mind eh.

I want to tell you what I believe to be a true story, if I may, and to ask you if you stumbled across anything quite like it during your own research into ME.

It was way back in 2005 while we were on holiday in the Azores. It was a beautiful day and we were strolling along with another couple from our tour group. The topic turned to ME, no idea why, and we seemed to agree with each other that it was widely believed to be a ' Shirker's Charter ' and a perceived easy way of getting early retirement on full pay.

My opinions on this complex issue ( hangs head in shame ) and total knowledge of the subject were based on one person who was a member of staff within the same organisation that I worked for and she was aiming to retire on ill heath grounds because of having ME, the general consensus was that she was lead swinging. My new found chum in Sao Miguel said that he was, or more accurately would have been, of the same mind. He turned out to be a retired Doctor, he explained that he had met up with an ex senior colleague some place recently and that the two of them had also discussed ME. The senior Doctor revealed that his own scepticism was rife up until the point when he became inflicted with the condition himself.

During his research he happened upon a report that told of how the human body can harbour other species within itself, I guess worms are a prime example, and that such occurrences can result, albeit rarely I dare say, in a chemical / hormone imbalance within the host ... could this explain, he surmised, the symptoms that he was presently experiencing. It was the month of July, rather than April, I noted to myself when he told me the follow up.

After undergoing a considerable number of tests and exploratory procedures the culprits were identified, removed and he subsequently recovered completely and with no further problems. Wait for it ... he was hosting a colony of miniature bats.

Just trying to be helpful
.

[Silver_Shiney]

I, too, once thought that, Moby, but since reading "Sicknote" and meeting my young colleague, who suffers from it and is one of the hardest-working young ladies I've ever had the privilege to work with, I now know different.

[Dennis The Menace]

Hiya Menace,

Having purchased a Kindle version of your book from Amazon on May 14th 2014 ( it was a Monday ) I thought it would be polite to tell you that I finally got round to reading it during our recent Adonia cruise. It was a fascinating account of events and very interesting but to be absolutely honest with you I was hoping that you would tell us more about the way Mandy was feeling, and indeed coping, with everything that you were going though ... but never mind eh.

I want to tell you what I believe to be a true story, if I may, and to ask you if you stumbled across anything quite like it during your own research into ME.

It was way back in 2005 while we were on holiday in the Azores. It was a beautiful day and we were strolling along with another couple from our tour group. The topic turned to ME, no idea why, and we seemed to agree with each other that it was widely believed to be a ' Shirker's Charter ' and a perceived easy way of getting early retirement on full pay.

My opinions on this complex issue ( hangs head in shame ) and total knowledge of the subject were based on one person who was a member of staff within the same organisation that I worked for and she was aiming to retire on ill heath grounds because of having ME, the general consensus was that she was lead swinging. My new found chum in Sao Miguel said that he was, or more accurately would have been, of the same mind. He turned out to be a retired Doctor, he explained that he had met up with an ex senior colleague some place recently and that the two of them had also discussed ME. The senior Doctor revealed that his own scepticism was rife up until the point when he became inflicted with the condition himself.

During his research he happened upon a report that told of how the human body can harbour other species within itself, I guess worms are a prime example, and that such occurrences can result, albeit rarely I dare say, in a chemical / hormone imbalance within the host ... could this explain, he surmised, the symptoms that he was presently experiencing. It was the month of July, rather than April, I noted to myself when he told me the follow up.

After undergoing a considerable number of tests and exploratory procedures the culprits were identified, removed and he subsequently recovered completely and with no further problems. Wait for it ... he was hosting a colony of miniature bats.

Just trying to be helpful
.

Hi Moby

Yes, it was difficult knowing how much of Mandy's feelings/coping I included in the book given that the book is essentially my diary where I recorded my own thoughts, fears etc. Also, as I found myself when Mandy's own health became so scary, you just don't share your feelings with each other in that situation as much as you might otherwise do, instead choosing to put a positive spin on everything in the hope that helps the other person somehow. Well we did anyway. In fact, it was only when she read early drafts of my book that Mandy found out how I truly felt during her original diagnosis in 2010. On the flip side, I hate to think what was going through her head when I had those two stays in hospital with doctors hinting at all sorts of horrible causes. Therefore, any attempt to try and encapsulate the feelings of someone so close at those times would almost certainly fall way short of the reality I think, but thanks for the feedback.

As far as scepticism and misunderstanding of ME/CFS is concerned, don't worry you are not alone. Even today - donkeys years since the World Health Organisation recognised it as the neurological illness it is - a vocal minority still refuse to accept it and there are dozens of anecdotes even more ridiculous than the hosting of bats story you recount above. Whilst initial triggers can be varied (as can be seen from your unfortunate bat colony friend) these are just that - the trigger, that in some then leads on to ME/CFS. Unfortunately for most sufferers, the removal of this initial trigger/bat colony from the equation rarely leads to an end to ME/CFS because this is an illness it's own right which, for some reason, turns an often quite innocuous trigger into a long term life changing illness. For that reason, the man you met on holiday who had a former colleague infested with a bat colony can count himself very lucky if his symptoms ceased - in fact, I'm clearly no expert, but to answer your question, my own research of ME/CFS would suggest that the medical issues this person suffered as a result of the bat colony were exactly that - I.e. Purely down to the bats and that maybe he didn't have ME/CFS at all, particularly given his apparent swift and total recovery on removal of the bats!

Not sure if all that makes sense, but hope I addressed your points and thanks for giving my book a go.

DTM

P.s. Moby, Now my book has hopefully re-educated you on the subject, if you ever run into your former colleague with ME, I hope you'll ask how they are doing and apologise for the fact that the consensus of opinion amongst your (presumably non-medically trained) colleagues was that she was swinging the lead. In fact, given that no uk pension scheme is able to retire someone sick on full pay as you suggest (uk pensions are limited to a maximum of 2/3rds of salary and an ill-health pension is nearly always significantly less), why don't you buy the poor devil a cup of coffee

[Manoverboard]

Hi Moby

Yes, it was difficult knowing how much of Mandy's feelings/coping I included in the book given that the book is essentially my diary where I recorded my own thoughts, fears etc. Also, as I found myself when Mandy's own health became so scary, you just don't share your feelings with each other in that situation as much as you might otherwise do, instead choosing to put a positive spin on everything in the hope that helps the other person somehow. Well we did anyway. In fact, it was only when she read early drafts of my book that Mandy found out how I truly felt during her original diagnosis in 2010. On the flip side, I hate to think what was going through her head when I had those two stays in hospital with doctors hinting at all sorts of horrible causes. Therefore, any attempt to try and encapsulate the feelings of someone so close at those times would almost certainly fall way short of the reality I think, but thanks for the feedback.

As far as scepticism and misunderstanding of ME/CFS is concerned, don't worry you are not alone. Even today - donkeys years since the World Health Organisation recognised it as the neurological illness it is - a vocal minority still refuse to accept it and there are dozens of anecdotes even more ridiculous than the hosting of bats story you recount above. Whilst initial triggers can be varied (as can be seen from your unfortunate bat colony friend) these are just that - the trigger, that in some then leads on to ME/CFS. Unfortunately for most sufferers, the removal of this initial trigger/bat colony from the equation rarely leads to an end to ME/CFS because this is an illness it's own right which, for some reason, turns an often quite innocuous trigger into a long term life changing illness. For that reason, the man you met on holiday who had a former colleague infested with a bat colony can count himself very lucky if his symptoms ceased - in fact, I'm clearly no expert, but to answer your question, my own research of ME/CFS would suggest that the medical issues this person suffered as a result of the bat colony were exactly that - I.e. Purely down to the bats and that maybe he didn't have ME/CFS at all, particularly given his apparent swift and total recovery on removal of the bats!

Not sure if all that makes sense, but hope I addressed your points and thanks for giving my book a go.

DTM

P.s. Moby, Now my book has hopefully re-educated you on the subject, if you ever run into your former colleague with ME, I hope you'll ask how they are doing and apologise for the fact that the consensus of opinion amongst your (presumably non-medically trained) colleagues was that she was swinging the lead. In fact, given that no uk pension scheme is able to retire someone sick on full pay as you suggest (uk pensions are limited to a maximum of 2/3rds of salary and an ill-health pension is nearly always significantly less), why don't you buy the poor devil a cup of coffee

Thank you very much, Menace, for responding.

My posting was of course intended to be about your experience rather than such-a-company's pension scheme but you are of course correct, full pension ' rights ' would have been a more accurate description on my part.

Almost as soon as I started reading your book I did wonder if it would be centred on your own fears and feelings and that Mandy would barely get a look in. I didn't think that way because I had you down as a self centred bar steward, far from it as I know you to be a better person than that. I actually wanted, even willed, you to do what I had myself failed to achieve when faced with a terminal condition in 2003. Also, unbeknown to me at that time Mobietta had been diagnosed with skin cancer but said and even did nothing about it until well over a year later once I started to recover.

It is strange that people, well, we two at least kept such things under wraps not being able to find the words or is it wishing to protect one's other half from the grim reality. Mobietta and I both laugh now but many a time when the pain became almost too much to cope with I used to tell ' Teddy ' what I was going through, he knew more than my wife of 40 years standing

Like I said, or tried to say, I wanted you to be more of a man / human being than I was and to be able to empress within your book the way Mandy felt at that time. if only because I may have better understood the way Mobietta felt ... the feelings are only truly there at the precise point in time and cannot be fully appreciated retrospectively or so we have found anyway.

Cheers.

[Dennis The Menace]

I think it's human nature Moby, to try and to protect those closest to you by not revealing the full extent of your fears or anxiety levels - especially when those fears are about the health of the very person you are trying to protect. I think it's a strong and certainly selfless person who attempts to protect others in that way even when, from the point of view of their own mental and physical well being, it might not be the best thing for them. It sounds like we both got very lucky with the ladies in our lives.

Here's hoping that both you and Mobietta are doing better now.

[Lollie]

Fantastic thing to do. Well done.

[Manoverboard]

It sounds like we both got very lucky with the ladies in our lives ...

Now isn't that the truth .