“Suffering does not only insulate. It drops its victim in an ocean desert where he sees men as distant ships passing. I not only feel alone, but very far away from you all.” ― W.N.P. Barbellion
Thank you as always, Prof G. Tonight's newsletter has prompted me to think of my own social isolation and to consider some of the positive changes I need to make, including spending more time with loved ones.
My social isolation is deliberate due to my difficulties in conversing and other's understandable lack of comprehension of it. It's hard to form responses during conversation, my brain can't listen and think at the same time, I speak but they are not considered words which is stressful and makes me feel vulnerable. Poor memory and word finding are added issues. Speaking to hcp's is a problem with the time restriction. I identify with the quote, I have always thought of it as being stuck in the Arctic without the tools to survive and navigate. On the upside I have plenty of hobbies at home to keep me occupied. After much research I've lost 3 stone so far on the carnivore diet (4 months in and blood tests all normal) and my brain fog feels improved so I am hoping for some cognitive neuro plasticity activity if that is a thing.
Personally and professionally I think the majority of the scales and validated measures are not suited to people living with complex conditions. They are very negative in tone and fail to consider how the person completing them may feel afterwards? We need more compassionate scales which can still, by default, determine the answers.
I like the idea but I am not sure how practical it is and seems a huge ask of people. It’s making yourself very vulnerable and then what ? What will the hcp realistically be able to do to help? Likely nothing and the pwms will just be really embarrassed and avoid being vulnerable in the future
I hadn't heard of ‘The Journal of a Disappointed Man’, I might try to read it, but wow it sounds depressing. I lived the same life, in modern-day Yorkshire, with no way to access an MS diagnosis or treatment through the NHS. Tbh, it's depressing reading 'patients should be able to self-refer to social prescribing', not, patients should be able to self-refer to neurology.' If one is going through the absolute trauma of not having access to healthcare, either because it doesn't yet exist, as in the case of Bruce Cummings, or due to socioeconomic predudice and medical negligence, as in my case, nothing else matters.
Thank you Gavin, thought provoking as always. I think the Lubben scale may identify people who are isolated but don’t see it as a problem. However, the UCLA loneliness scale definitely warrants intervention. It identifies that the person sees their social isolation as a problem. I would ideally refer them to an MDT of Occupational Therapy (I am an OT), Social Worker, Physiotherapist, Speech Language Therapist and Psychologist. An initial assessment would identify which professionals would be best suited to help. I know that this is unlikely currently but we may as well strive for the best possible solution!!
I teared up a bit reading the excerpt from the book. I agree that social isolation doesn’t happen overnight. Some isolation is my own since there’s a part of me that is a loner. But I have missed working terribly and I’ve found that over the years, friends and even family members want that “old me” back. Meeting with others in a group is so difficult due to sensory issues, as I think someone else pointed out. But I have a terrific therapist. One of my best friends is an irreverent 91 year old woman who’s had a stroke. I’ve known her and her family for over 40 years. Fantastic sense of humor! That said, I simply became too much trouble for many of my old colleagues and family. (And, I love hearing “you look great!” I suppose if you can overlook the speech, tremor etc. Cue eye roll.) As always, you hit on a good one Prof G. But it’s one I don’t enjoy facing, and lots to ponder. Thank you.
Thanks for another informative newsletter Prof G. I ordered the 'The Journal of a Disappointed Man’ on Amazon, after I read your mention. Seems like a nice light summer beach read. (joking). Sometimes I really prefer to be alone, and other times I feel quite isolated. Some friends have stopped inviting me out over the years and I have lost a romantic relationship due to having MS. I am very fortunate and grateful though to have many of my family members living close by, and the ones that are far away keep in touch regularly. There seems to be an abundance of isolation and loneliness in many populations, especially after the pandemic. Other pwMS besides myself do seem to experience it, but it comes in waves.
You have some excellent points. Family support (husband, parents, aunt etc) is what kept me going all this time. Few years ago, we seriously considered moving to EU, but even though I would have better healthcare and many benefits which I do not have here in Bosnia, I couldn't stand thought of being alone (i.e., just the three of us: me, husband and my daughter). I realize that many people live just like that, but I was raised "as part of the tribe", and I need this connection with my family. I think that all PwMS would benefit from healthy family relationships
A bit frustrating...referrals are not necessarily a solution. The local Social precribing team is trying to help me find a bit of support to go swimming - to keep fit and maintain mobility and all those good things as well as for pleasure. It's outside the pool I need a bit - but not a lot - of help but so far it's proving too difficult.
Thank you Prof G - we all feel SIL - often at work sorouned by collegues- at these times we receive confort from our patients -through their stories -being reminded that we are all the same and best medicine to each other
Good to focus on other aspects of life that are affected by those with MS. Thanks for providing the scales - will try them out later. Important to emphasise how important positive mental and emotional wellbeing is besides looking after our physical and medical needs.
Thank you as always, Prof G. Tonight's newsletter has prompted me to think of my own social isolation and to consider some of the positive changes I need to make, including spending more time with loved ones.
I hope you are well.
My social isolation is deliberate due to my difficulties in conversing and other's understandable lack of comprehension of it. It's hard to form responses during conversation, my brain can't listen and think at the same time, I speak but they are not considered words which is stressful and makes me feel vulnerable. Poor memory and word finding are added issues. Speaking to hcp's is a problem with the time restriction. I identify with the quote, I have always thought of it as being stuck in the Arctic without the tools to survive and navigate. On the upside I have plenty of hobbies at home to keep me occupied. After much research I've lost 3 stone so far on the carnivore diet (4 months in and blood tests all normal) and my brain fog feels improved so I am hoping for some cognitive neuro plasticity activity if that is a thing.
Personally and professionally I think the majority of the scales and validated measures are not suited to people living with complex conditions. They are very negative in tone and fail to consider how the person completing them may feel afterwards? We need more compassionate scales which can still, by default, determine the answers.
I like the idea but I am not sure how practical it is and seems a huge ask of people. It’s making yourself very vulnerable and then what ? What will the hcp realistically be able to do to help? Likely nothing and the pwms will just be really embarrassed and avoid being vulnerable in the future
I hadn't heard of ‘The Journal of a Disappointed Man’, I might try to read it, but wow it sounds depressing. I lived the same life, in modern-day Yorkshire, with no way to access an MS diagnosis or treatment through the NHS. Tbh, it's depressing reading 'patients should be able to self-refer to social prescribing', not, patients should be able to self-refer to neurology.' If one is going through the absolute trauma of not having access to healthcare, either because it doesn't yet exist, as in the case of Bruce Cummings, or due to socioeconomic predudice and medical negligence, as in my case, nothing else matters.
Thank you Gavin, thought provoking as always. I think the Lubben scale may identify people who are isolated but don’t see it as a problem. However, the UCLA loneliness scale definitely warrants intervention. It identifies that the person sees their social isolation as a problem. I would ideally refer them to an MDT of Occupational Therapy (I am an OT), Social Worker, Physiotherapist, Speech Language Therapist and Psychologist. An initial assessment would identify which professionals would be best suited to help. I know that this is unlikely currently but we may as well strive for the best possible solution!!
I teared up a bit reading the excerpt from the book. I agree that social isolation doesn’t happen overnight. Some isolation is my own since there’s a part of me that is a loner. But I have missed working terribly and I’ve found that over the years, friends and even family members want that “old me” back. Meeting with others in a group is so difficult due to sensory issues, as I think someone else pointed out. But I have a terrific therapist. One of my best friends is an irreverent 91 year old woman who’s had a stroke. I’ve known her and her family for over 40 years. Fantastic sense of humor! That said, I simply became too much trouble for many of my old colleagues and family. (And, I love hearing “you look great!” I suppose if you can overlook the speech, tremor etc. Cue eye roll.) As always, you hit on a good one Prof G. But it’s one I don’t enjoy facing, and lots to ponder. Thank you.
Thanks for another informative newsletter Prof G. I ordered the 'The Journal of a Disappointed Man’ on Amazon, after I read your mention. Seems like a nice light summer beach read. (joking). Sometimes I really prefer to be alone, and other times I feel quite isolated. Some friends have stopped inviting me out over the years and I have lost a romantic relationship due to having MS. I am very fortunate and grateful though to have many of my family members living close by, and the ones that are far away keep in touch regularly. There seems to be an abundance of isolation and loneliness in many populations, especially after the pandemic. Other pwMS besides myself do seem to experience it, but it comes in waves.
You have some excellent points. Family support (husband, parents, aunt etc) is what kept me going all this time. Few years ago, we seriously considered moving to EU, but even though I would have better healthcare and many benefits which I do not have here in Bosnia, I couldn't stand thought of being alone (i.e., just the three of us: me, husband and my daughter). I realize that many people live just like that, but I was raised "as part of the tribe", and I need this connection with my family. I think that all PwMS would benefit from healthy family relationships
A bit frustrating...referrals are not necessarily a solution. The local Social precribing team is trying to help me find a bit of support to go swimming - to keep fit and maintain mobility and all those good things as well as for pleasure. It's outside the pool I need a bit - but not a lot - of help but so far it's proving too difficult.
Thank you Prof G, I've just read your post while I'm getting my Tysabri infusion.
It's an interesting read as usual.
Karen
Thank you Prof G - we all feel SIL - often at work sorouned by collegues- at these times we receive confort from our patients -through their stories -being reminded that we are all the same and best medicine to each other
Nice piece Prof G.
Good to focus on other aspects of life that are affected by those with MS. Thanks for providing the scales - will try them out later. Important to emphasise how important positive mental and emotional wellbeing is besides looking after our physical and medical needs.
Lots to consider, thank you.
I have read JOADM several times over a few years. I can never get over how relatable it is to today. Thanks for sharing.