A long-standing friend and member of PR has died through lack of medical support

[Hip]

Edited to add that it is possible that Hip will know his forum name as M talked a lot about his posts and I know that he tried his recommendations. It is quite likely that he Pm'd him.

I have 26 pages of past Conversations, totaling to around 500 Conversations, so if he did PM me, it won't be that easy to find his username, even if we know the full name (unless they are the same name).

Would you happen to know roughly which year he joined PR, and when he might have PM'ed me, so that I can look at that time period in my past Conversations?

 

[Countrygirl]

I have 26 pages of past Conversations, totaling to around 500 Conversations, so if he did PM me, it won't be that easy to find his username, even if we know the full name (unless they are the same name).

Would you happen to know roughly which year he joined PR, and when he might have PM'ed me, so that I can look at that time period in my past Conversations?

500!

Hip he spoke a lot about your posts and I think he said that he PM'd you. He joined earlier this year. Possibly February/March. I am sorry I can't be more precise.

 

[Hip]

500!

Yes, I get quite a few members PMing me to ask various questions.

Hip he spoke a lot about your posts and I think he said that he PM'd you. He joined earlier this year. Possibly February/March. I am sorry I can't be more precise.

Looking at my Conversations from late 2015 to present, the only people who are male or unspecified gender, joined the forum this year or late last year, and have little or no forum posts are:

@asymmetry — joined PR on 11 May 2016, PM'ed me on 23 July 2016. He asked me about th1/th2 immunomodulators, and about N-acetyl-glucosamine for anxiety. He gave his first name, which begins with I.

@Phoenixcat — joined PR on 24 Feb 2016, PM'ed me on 26 Feb 2016. He asked me about NT Factor (very brief Conversation).

 

[Comet]

@Countrygirl I have been thinking of you and your friend since reading this thread last night. I am so sorry for your loss.

 

[Sushi]

Looking at my Conversations from late 2015 to present, the only people who are male or unspecified gender, joined the forum this year or late last year, and have little or no forum posts are:

@asymmetry — joined PR on 11 May 2016, PM'ed me on 23 July 2016. He asked me about th1/th2 immunomodulators, and about N-acetyl-glucosamine for anxiety. He gave his first name, which begins with I.
@Phoenixcat — joined PR on 24 Feb 2016, PM'ed me on 26 Feb 2016. He asked me about NT Factor (very brief Conversation).

Please don't get worried about these members--neither seems to be the one we are looking for.

 

[Hilary]

Hi @Countrygirl - I'm so sorry to hear about your loss and the terrible time your friend went through. A friend of mine took her own life a few weeks ago - I am in no way comparing losses (what a horrible thought anyway) as I had known her for only a few years and she was not such a close friend, but it is a terrible way to lose someone, knowing that they have been in such a dark place. She also suffered from FM and, although that was only one problem amongst many for her, I know that over the last few months it was causing her unrelenting pain. I'm still finding it quite unreal.
You have clearly been an exceptional friend and did all you could. I hope you are taking care of yourself -please know that I (and of course lots of others on PR) are thinking of you.
H x

 

[Countrygirl]

Hi @Countrygirl - I'm so sorry to hear about your loss and the terrible time your friend went through. A friend of mine took her own life a few weeks ago - I am in no way comparing losses (what a horrible thought anyway) as I had known her for only a few years and she was not such a close friend, but it is a terrible way to lose someone, knowing that they have been in such a dark place. She also suffered from FM and, although that was only one problem amongst many for her, I know that over the last few months it was causing her unrelenting pain. I'm still finding it quite unreal.
You have clearly been an exceptional friend and did all you could. I hope you are taking care of yourself -please know that I (and of course lots of others on PR) are thinking of you.
H x

Hello @Hilary I am so sorry to hear that you too lost a friend in a similar way to this horrible illness. When it is a case of suicide too, of course, there are so many other painful factors at play and it makes grieving much more complex. It is also a terrible shock when some one dies in this manner......especially when it is as a result of medical negligence at some level.

I am haunted to some extent by my friend's pleas to let him move into my spare room as he felt that he would have a better chance of improvement if he were in my home. I am just too unwell myself to cope with this and explained that I just could not agree to it. He was desperate and my refusal must have hurt him, but I would be of no use to anyone if I can't be left to manage this illness and pain in the best way I can. Maybe if I had he might still be alive today............but I might not be. I searched everywhere to find a suitable place for him to be cared for, but there was just nowhere. The few places that did exist have closed down.

I phoned the coroner this morning and left a message. They are going to contact me. I will post more when I have some information.

 

[Hilary]

Hi @Countrygirl - it sounds as though you did the right thing. One thing I learnt very early on in my illness was that I had to take care of myself as a priority - otherwise I just couldn't do anything for anyone else (I had small children at the time). The same still applies twenty years or so later. It can be so desperately frustrating for many reasons but is unavoidable.

I think after the death of anyone close we tend to ask what else we could/should have done, but of course especially so after a suicide and I guess it's human nature to home in on the things we didn't do, rather than to remember all that we did do - and it sounds to me as though you were a very committed and supportive friend. You did the very best you could in impossible circumstances. It's others who should be hanging their heads in shame, most definitely not you.

 

[Chrisb]

@Countrygirl Whatever you do, don't feel guilty. You can only do what you can do. It should not be left to the seriously ill to provide assistance to the seriously ill. Things might not have turned out any better had you acceded to the request.

 

[Countrygirl]

I haven't mentioned that M over the last 20 years has been visiting severely ill ME patients who are isolated. He also did voluntary work with the mentally disabled and taught them new skills. At Christmas (he had no family to speak of) he worked in homeless shelters. He had such a good heart and when I can release his name we can commemorate him on a memorial thread.

 

[barbc56]

@Countrygirl

Do you have contact with his family? I would ask them if they want his name published. Maybe they would agree to initials or a pseudonym. Apologies if you have thought of this, but just in case as you have to be under tremendous stress.

Take care and remember this is not your fault. You were so gracious with your support.

 

[mermaid]

I am so sorry to hear that there is permanent damage. Mermaid. You have enough health problems to deal with without that. I really am sad about that.

(I must admit, without my glasses, I can't even see the board let alone read even the largest letter on it.)

Well there you are, CG, I said mine wasn't too bad then! I guess it's just the loss and feeling of vulnerability, having already had macular hole in the other though thankfully that made a good recovery.

I have a friend who tried to support a woman in his block of flats who had a diagnosis of fibromyalgia. It seems she was coping until she became affected by food intolerance, and it became very severe and no one knew how to help her with this. She was actually taken into the local mental hospital for a while, but I believe she had just been discharged and then took her life. He was very upset by what happened, made worse by the fact that his closest friend (also my friend) took his own life some 14 years ago, and he had tried to prevent that also.

 

[Countrygirl]

@Countrygirl

Do you have contact with his family? I would ask them if they want his name published. Maybe they would agree to initials or a pseudonym. Apologies if you have thought of this, but just in case as you have to be under tremendous stress.

Take care and remember this is not your fault. You were so gracious with your support.

Hi @barbc56 ,

M effectively had no family. There is a brother who he saw just occasionally in his life and a sister the other side of the world. They weren't close as they were separated when M was only two.

 

[bertiedog]

@Countrygirl This is such very sad news, our country can be a disgrace at times. I understand why you have to try and keep a cool head because of the necessary statement for the Coroner but it must be so difficult with such difficult emotions that you must feel.

You always come across as such a kind and wonderful soul that I am sure you friend had been comforted by you on many occasions.

Lets just hope that all this great biomedical research will eventually change things in the UK and elsewhere but I realise it won't help people like your friend.

My very best wishes for you at this horrible time.

Pam x

 

[Gingergrrl]

You always come across as such a kind and wonderful soul that I am sure you friend had been comforted by you on many occasions.

Agreed 100%. @Countrygirl, I am certain that your friend died knowing that you were there for him and your kindness toward others shines through in everything that you post.

 

[anniekim]

I'm so sorry for your loss @Countrygirl. Did your friend have Lyme tests on the NHS which came up negative and that is why they wouldn't treat lyme? (I know there are a lot of false negatives with NHS Lyme testing).

 

[Countrygirl]

@bertiedog and @Gingergrrl You make me blush! Thank you for your kind words, especially today. ( It is the anniversary of my mum's (very recent) death today, so it is a sad time for me. My last close relative (my aunt) who lived next door has also very recently died ..........while she and I were having a conversation. Suddenly in mid sentence. Big shock! Now my long-time friend has gone. I seem to be packing in far too many funerals and I do wish my friend hadn't done this. Hard times.

 

[Countrygirl]

I'm so sorry for your loss @Countrygirl. Did your friend have Lyme tests on the NHS which came up negative and that is why they wouldn't treat lyme? (I know there are a lot of false negatives with NHS Lyme testing).

@anniekim Hi Anniekim, yes he had one Lyme test on the NHS but it was negative. I was encouraging him to send his blood to Germany, but he felt just too overwhelmed with what was happening to him to do that.

He read me out a letter about three weeks from a psychiatrist which said that he suspected that he had Lyme disease. His GP was unhelpful and did not want to go down that route. She probably just didn't know what to do. Two weeks ago he changed to a new practice, but he wasn't hopeful. He just couldn't cope with the horrible brain symptoms anymore and he knew from visiting housebound people with ME over the last 20 years that he would suffer a similar fate.

I have now spoken with the police and they have recorded my comments. I am now waiting to learn whether I am too be given a more formal interview.

 

[mermaid]

@bertiedog and @Gingergrrl You make me blush! Thank you for your kind words, especially today. ( It is the anniversary of my mum's (very recent) death today, so it is a sad time for me. My last close relative (my aunt) who lived next door has also very recently died ..........while she and I were having a conversation. Suddenly in mid sentence. Big shock! Now my long-time friend has gone. I seem to be packing in far too many funerals and I do wish my friend hadn't done this. Hard times.

((hug)) CG. I hadn't realised that your aunt had died too, though I remember that she was ill. What a lot of sadness for you, today in particular, and hope that the kind words from friends on here is helping.

 

[anniekim]

@anniekim Hi Anniekim, yes he had one Lyme test on the NHS but it was negative. I was encouraging him to send his blood to Germany, but he felt just too overwhelmed with what was happening to him to do that.

He read me out a letter about three weeks from a psychiatrist which said that he suspected that he had Lyme disease. His GP was unhelpful and did not want to go down that route. She probably just didn't know what to do. Two weeks ago he changed to a new practice, but he wasn't hopeful. He just couldn't cope with the horrible brain symptoms anymore and he knew from visiting housebound people with ME over the last 20 years that he would suffer a similar fate.

I have now spoken with the police and they have recorded my comments. I am now waiting to learn whether I am too be given a more formal interview.

Thanks for your reply Countrygirl. It's so terribly sad and an indictment on the poor quality Lyme testing used by the NHS. I am so sorry he was so badly let down by his GP who was unwilling to consider all avenues.