I didn't plan to comment on this topic, but you have come back to it and I applaud you for that. When I had a bad attack that put me in hospital for 5 and a half weeks, a number of things came to a head. Firstly, my working days were over so I was no longer the bread winner. Secondly, because of the first factor my wife left and demanded half our assets. I applied to trigger the insurance policies that had been in place for decades so, naturally, the insurance company wanted to deny my payout. In fact they accused me of lying about having MS for over 20 years and said the policy was thus void. When that was solved, the superannuation fund that held my policy tried to slash it's value by 60% on the basis that they had made a mistake calculating its worth over a decade earlier and, of course, it wasn't their fault and I should have known. In the end, I took them to the second highest court in Australia and the problem was solved. All this happened while I could barely think straight, my employer turned feral, my wife had walked out and I was trying to learn how to walk again.
As part of my health insurance (different from the other stuff) I was offered psychological counseling. I took it as I felt it would help support my legal cases, not because I believed it would benefit my soul. Throughout the rehab and the psychological process I felt like I was living in an asylum where the lunatics were in charge. No one was interested in how hard I was trying to recover, they just expected me to do things that had to be retaught. Every few days, I sat opposite the woman who kept yabbering on about 'mindfulness' and wondered how I could shut her up.
One day, the 2IC of the rehab place said "I just can't keep writing letters to your employer, you'll have to go back". I knew that meant rising at 5:15 each morning to be in the office at 7am and dealing with highly complex transactions that were now beyond me. I could barely stand at that stage.
The psychologist was my next appointment and she said something that reinforced her lack of understanding. My response was very dark and I won't repeat it. Suddenly she was very alert and it seemed the penny had dropped. In her answer she said "we want you to be safe".
That was something that no one had ever said to me. And she had articulated the key issue- I wanted to be safe and I was tired of doing it all on my own. Of course, I still do it all on my own but now I knew what I was missing. It wasn't companionship, or financial security, or a recovery, or anything else. I now knew that I wanted to be safe.
Too often, medical people and our social contacts send the message "Off you go". But go where, do what? MS brings with it a heightened sense of abandonment. There is no shared journey.
Ask that man if he feels safe enough to put down what he is carrying. If he tells you yes, he is probably lying. If he goes quiet and reflects on it, then you may have made a start.
Andrew, you have articulated what many of us feel so well. Unsafe in a world where we have no idea what's going to happen to our physical bodies let alone society which seems to distrust, disbelieve and then discard us.
Andrew, I am sorry for what you went through. It is trauma beyond trauma. i hope you feel safe now. You have made a salient point: when we are physically and emotionally lacking safety, we become exhausted just trying, every second, to avoid a catastrophe. It is a feeling beyond just being tired of life. I do what I can to feel safe, but with a spouse who is still physically present, but absent and resentful for my disease, "ruining his life" there is no safety. I am pretty sure a significant minority of those of us with advanced MS are in the same leaky lifeboat.
I'm all good now. That episode was 10 years ago. However, being told that someone wanted me safe was a turning point. Up till then I had years of advice I didn't ask for, a lot of condescending commentary, an unforgiving workplace and no one ever said a genuinely kind word. When all that legal stuff blew up, it was a pile-on. A genuine case of 'kick him while he's down". What disappointed me is I knew I would never treat people they way I was being treated. When I was told they wanted me safe it came from someone in the system and I knew, at least, they would finally back off. That's when I asked myself if I could be hurt after all this. I decided the answer was 'no' and my mindset changed.
So many people are threatened by the enormity of what has changed in us. Because they are threatened, they attack without meaning or intention. Often their goal is the opposite of what they do. They convey rejection when what they want is to control the narrative. They don't know how to say they want the best for you. Working with someone with MS is damn sight more productive than trying to control the narrative.
Hellooo Andrew, I’m glad you survived it. I had a similar situation as breadwinner. I was amazed at the utter lack of any compassion by anyone in the system. This was almost 30 years ago. I lost everything. Sometimes I still shake my head. Sending empathy to you..
When I was diagnosed, I started reading articles and became a member of several FB groups. As well as understanding that the disease is incurable, I was also struck by the isolation and loneliness of many pwMS with some level of disability. Nobody likes the sick in general. People don't want to take the time to listen to you when you're talking slowly, or go for a walk with all the logistics of a wheelchair. When you're not yet severely disabled, you live a "nuclear" life between work and home and don't really need a wider circle of contacts. And when disability makes us vulnerable, we no longer have the strength and opportunities to create social links. That's why I've taken a critical decision. I'm going to leave full-time work. The time that will be freed up, I'm going to invest in becoming a member of various associations, I haven't yet decided which ones:). For me it's an investment in the future and an attempt to prevent social isolation, which I've indeed identified as a major problem I may face.
I have recently taken ill-health retirement for this very reason. I had been working part-time as a teacher since my diagnosis in 2014, and gradually my life had shrunk to 'work' and 'recovering from work'. I am now more able to do the yoga I need to stay as mobile as possible, go more regularly to the choir I am in, and my time with my family is so much more positive. My husband, also a teacher, will soon be at an age where he can take early retirement, and I am encouraging him to do so. I am aware that in 10 years time I may be in a very different state, (a lot of my disability is cognitive) and I want to make the most of the life that I have. I had breast cancer 5 years ago, and that pushed me towards this decision too. None of us live forever, and I want to enjoy what I have, before I too get 'tired of life'. Otherwise what is the point?!
Can’t remember it ever being asked by any healthcare professional let alone my neurologist. Would there be enough time in your allocated 10/15mins to even go there? As for early retirement Prof G, it’s a good idea to start planning it if you want to go travelling whilst still healthy enough.
Spot on - this article and the last. I saw my partner fall 'into tired of life mode'. It happened only when HCPs stopped having time for him/ started saying they didn't know what else could be done. It directly correlated with losing hope. Another interesting angle is to consider knock on effect on partner/spouse of pwMS being allowed to drop into 'tired of life mode'. The effect is similar they lose quality if life and often simultaneously experience social isolation, feelings of loneliness from a relationship altered/challenged too. Any HCP that goes to the trouble of persevering with signposting PwMS out of 'tired of life' mode should know they often save 2 lives not just one!
I've never been asked if I'm lonely by a neurologist. And Dr. G, I love you, appreciate you and think you're a gem of a human being and a real gift to us who are living with MS and the MS and medical world in general. That being said, go live your life travelling and enjoying life with your wife while you're still able to. The universe is so fleeting. If not now, when?
You and me have both had serious accidents with broken pelvis’ therefore know how quickly it can be over- I would say take a sabbatical for 3 months without pay and get a feel for travelling. I done this in the uk from teaching to travel australia. I then moved to Australia where we get paid long service leave where we are encouraged to use it and take weeks or months off at a time (paid) to travel etc. I guess fewer teachers burn out with having time off ? Why don’t you take a semester off work?
Wow. There’s a lot in this newsletter and your questions.
I think the questions on loneliness are very poignant in our divisive world and within our country given the political climate and the way poverty creates isolation and loneliness. I think people with disabilities are once again finding themselves sidelined and judged by a certain element of society. Personally I find the younger generation are very inclusive and I hope this will bring about change for the future. Hence less isolation.
Loneliness. Recently I’ve started trialling FES. It has meant that when I go out with my husband I can walk a short way and be on his level, and even link arms or hold hands. I have felt less lonely in my relationship. I hadn’t realised how much we’d stopped the walking / talking. When I’m in a scooter / chair, it’s hard to walk together, pavement width etc and I can’t hear him well when I’m lower etc. Little tweaks can make a difference.
As for discussing with Neuro, generally the appointment is rushed, sometimes after a 3 hour wait over appointment time, I’ve forgotten what I’m there for, what’s really pressing, is the 1 or 2 most important things physically.
Yes plan retirement and travel. I miss my loss of a sense of adventure, another thing many MSers struggle with. It too can bring loneliness. I’m fortunate that my adult children are explorers. So I follow their exploits. Seeing them climb the Summits and Peaks is sad, ( personal loss )but rewarding. I helped teach them, we always called my daughter Dora the Explorer. She certainly is.
Yes, it’s the fatigue. It’s hard to socialize when you’re exhausted. I admit, I jettisoned the annoying people, but even the minimal time spent with people I like sends me back sleeping!
As for the neuro asking me, that was more about general wellbeing and depression and anxiety rather than straight up loneliness (possibly less obvious question for someone who still works fulltime).
My mum wants to work forever, I think. My Dad's death coincided with her retirement. She went back to work briefly to hand over and in that time received two job offers. Ten years on, she now works on a zero hours contract in a library. Some weeks this means full time. It means she has the freedom to travel to see me when she wants and to go on other trips closer to home (we are on opposite sides of the globe).
As for depression, I had it when I came down with glandular fever. The doctor said she was fairly sure I had it so rather than wait for the result of the blood test she prescribed steroids, antihistamines (I had come out in a rash), paracetamol for the fever and she handed me a leaflet about glandular fever. I read what it said about depression being one of the symptoms and immediately felt relieved that there was some rational explanation for the soul draining way I felt.
I have felt like this twice since, I think due to MS fatigue. I'm lucky that I don't experience fatigue often, not to the level of being unable to get out of bed anyway. When it happens it is very upsetting, I catastrophise and imagine I'll never feel well again. But I'm able to look back on the times it happened before and remind myself that I got better then, why should this time be any different?
Glandular fever kicked off acute panic attacks that persisted in one form or another for 15 years before MS turned up 10 years ago. Strangely, my intense health anxiety mellowed once I knew what there actually was to fear - I’m still terrified, but at least the bogeyman has a face…
Never been asked . Consultant appt only 15 minutes, had 2 in the last 18months , last appt last June, appt this June was cancelled & rearrange for next year!
I would say I was lonely . Had to give up work in the NHS after 36 yrs . I do go to groups & try to keep myself active . I would say to you retire now while you can & do the things you both enjoy before it's too late for both of you.
It’s a hard one- even when I read the post I was thinking that it’s your responsibility as his neurologist to keep trying to get him help and not give up on him. For many of us we don’t want to openly accept help but do need it and with supportive care will/may start to accept help. I didn’t comment on the first post but that’s how I felt myself.
I meant to add, that you have definitely earned a youthful retirement. I have known too many people that wait a bit too long and don't get the opportunity to enjoy one after decades of hard work. Selfishly some of us, myself included, may not want you to entirely step away - there would be a huge void - but you undoubtedly deserve it. A true mensch.
I can feel lonely during a relapse, during viruses with prolonged recovery which I seem to catch easily over the last 2 years. I have contact at these times with any one. My family ring to check on me, yes. But I cannot go out and about. I turn to watch NETFLIX to numb until I start to feel a bit stronger and can walk a bit in the garden and then the slow recovery until I can go out into the big wide world again. It feels an uphill struggle and more familiar the older I get.
I think you are amazing and much appreciated my long and comprehensive appointment with you some years ago . However since that time you have had a serious accident and you are obviously older . You have spent years advocating for MS and your commitment is unwavering . I think your wife is right and that to travel together while you are still younger and able to do so would be great!
I didn't plan to comment on this topic, but you have come back to it and I applaud you for that. When I had a bad attack that put me in hospital for 5 and a half weeks, a number of things came to a head. Firstly, my working days were over so I was no longer the bread winner. Secondly, because of the first factor my wife left and demanded half our assets. I applied to trigger the insurance policies that had been in place for decades so, naturally, the insurance company wanted to deny my payout. In fact they accused me of lying about having MS for over 20 years and said the policy was thus void. When that was solved, the superannuation fund that held my policy tried to slash it's value by 60% on the basis that they had made a mistake calculating its worth over a decade earlier and, of course, it wasn't their fault and I should have known. In the end, I took them to the second highest court in Australia and the problem was solved. All this happened while I could barely think straight, my employer turned feral, my wife had walked out and I was trying to learn how to walk again.
As part of my health insurance (different from the other stuff) I was offered psychological counseling. I took it as I felt it would help support my legal cases, not because I believed it would benefit my soul. Throughout the rehab and the psychological process I felt like I was living in an asylum where the lunatics were in charge. No one was interested in how hard I was trying to recover, they just expected me to do things that had to be retaught. Every few days, I sat opposite the woman who kept yabbering on about 'mindfulness' and wondered how I could shut her up.
One day, the 2IC of the rehab place said "I just can't keep writing letters to your employer, you'll have to go back". I knew that meant rising at 5:15 each morning to be in the office at 7am and dealing with highly complex transactions that were now beyond me. I could barely stand at that stage.
The psychologist was my next appointment and she said something that reinforced her lack of understanding. My response was very dark and I won't repeat it. Suddenly she was very alert and it seemed the penny had dropped. In her answer she said "we want you to be safe".
That was something that no one had ever said to me. And she had articulated the key issue- I wanted to be safe and I was tired of doing it all on my own. Of course, I still do it all on my own but now I knew what I was missing. It wasn't companionship, or financial security, or a recovery, or anything else. I now knew that I wanted to be safe.
Too often, medical people and our social contacts send the message "Off you go". But go where, do what? MS brings with it a heightened sense of abandonment. There is no shared journey.
Ask that man if he feels safe enough to put down what he is carrying. If he tells you yes, he is probably lying. If he goes quiet and reflects on it, then you may have made a start.
Andrew, you have articulated what many of us feel so well. Unsafe in a world where we have no idea what's going to happen to our physical bodies let alone society which seems to distrust, disbelieve and then discard us.
Andrew, I am sorry for what you went through. It is trauma beyond trauma. i hope you feel safe now. You have made a salient point: when we are physically and emotionally lacking safety, we become exhausted just trying, every second, to avoid a catastrophe. It is a feeling beyond just being tired of life. I do what I can to feel safe, but with a spouse who is still physically present, but absent and resentful for my disease, "ruining his life" there is no safety. I am pretty sure a significant minority of those of us with advanced MS are in the same leaky lifeboat.
Sandra - Yes, a spouse who is present, yet not a support is worse, in my opinion than being alone.
How are you now?
I'm all good now. That episode was 10 years ago. However, being told that someone wanted me safe was a turning point. Up till then I had years of advice I didn't ask for, a lot of condescending commentary, an unforgiving workplace and no one ever said a genuinely kind word. When all that legal stuff blew up, it was a pile-on. A genuine case of 'kick him while he's down". What disappointed me is I knew I would never treat people they way I was being treated. When I was told they wanted me safe it came from someone in the system and I knew, at least, they would finally back off. That's when I asked myself if I could be hurt after all this. I decided the answer was 'no' and my mindset changed.
So many people are threatened by the enormity of what has changed in us. Because they are threatened, they attack without meaning or intention. Often their goal is the opposite of what they do. They convey rejection when what they want is to control the narrative. They don't know how to say they want the best for you. Working with someone with MS is damn sight more productive than trying to control the narrative.
Hellooo Andrew, I’m glad you survived it. I had a similar situation as breadwinner. I was amazed at the utter lack of any compassion by anyone in the system. This was almost 30 years ago. I lost everything. Sometimes I still shake my head. Sending empathy to you..
When I was diagnosed, I started reading articles and became a member of several FB groups. As well as understanding that the disease is incurable, I was also struck by the isolation and loneliness of many pwMS with some level of disability. Nobody likes the sick in general. People don't want to take the time to listen to you when you're talking slowly, or go for a walk with all the logistics of a wheelchair. When you're not yet severely disabled, you live a "nuclear" life between work and home and don't really need a wider circle of contacts. And when disability makes us vulnerable, we no longer have the strength and opportunities to create social links. That's why I've taken a critical decision. I'm going to leave full-time work. The time that will be freed up, I'm going to invest in becoming a member of various associations, I haven't yet decided which ones:). For me it's an investment in the future and an attempt to prevent social isolation, which I've indeed identified as a major problem I may face.
I have recently taken ill-health retirement for this very reason. I had been working part-time as a teacher since my diagnosis in 2014, and gradually my life had shrunk to 'work' and 'recovering from work'. I am now more able to do the yoga I need to stay as mobile as possible, go more regularly to the choir I am in, and my time with my family is so much more positive. My husband, also a teacher, will soon be at an age where he can take early retirement, and I am encouraging him to do so. I am aware that in 10 years time I may be in a very different state, (a lot of my disability is cognitive) and I want to make the most of the life that I have. I had breast cancer 5 years ago, and that pushed me towards this decision too. None of us live forever, and I want to enjoy what I have, before I too get 'tired of life'. Otherwise what is the point?!
Good luck. 👍
Can’t remember it ever being asked by any healthcare professional let alone my neurologist. Would there be enough time in your allocated 10/15mins to even go there? As for early retirement Prof G, it’s a good idea to start planning it if you want to go travelling whilst still healthy enough.
Spot on - this article and the last. I saw my partner fall 'into tired of life mode'. It happened only when HCPs stopped having time for him/ started saying they didn't know what else could be done. It directly correlated with losing hope. Another interesting angle is to consider knock on effect on partner/spouse of pwMS being allowed to drop into 'tired of life mode'. The effect is similar they lose quality if life and often simultaneously experience social isolation, feelings of loneliness from a relationship altered/challenged too. Any HCP that goes to the trouble of persevering with signposting PwMS out of 'tired of life' mode should know they often save 2 lives not just one!
So true.
I've never been asked if I'm lonely by a neurologist. And Dr. G, I love you, appreciate you and think you're a gem of a human being and a real gift to us who are living with MS and the MS and medical world in general. That being said, go live your life travelling and enjoying life with your wife while you're still able to. The universe is so fleeting. If not now, when?
I echo what Me -KL Burke says, every point :)
💕
You and me have both had serious accidents with broken pelvis’ therefore know how quickly it can be over- I would say take a sabbatical for 3 months without pay and get a feel for travelling. I done this in the uk from teaching to travel australia. I then moved to Australia where we get paid long service leave where we are encouraged to use it and take weeks or months off at a time (paid) to travel etc. I guess fewer teachers burn out with having time off ? Why don’t you take a semester off work?
That is where you see the value of social prescribing and the importance of a holistic approach in health care
Wow. There’s a lot in this newsletter and your questions.
I think the questions on loneliness are very poignant in our divisive world and within our country given the political climate and the way poverty creates isolation and loneliness. I think people with disabilities are once again finding themselves sidelined and judged by a certain element of society. Personally I find the younger generation are very inclusive and I hope this will bring about change for the future. Hence less isolation.
Loneliness. Recently I’ve started trialling FES. It has meant that when I go out with my husband I can walk a short way and be on his level, and even link arms or hold hands. I have felt less lonely in my relationship. I hadn’t realised how much we’d stopped the walking / talking. When I’m in a scooter / chair, it’s hard to walk together, pavement width etc and I can’t hear him well when I’m lower etc. Little tweaks can make a difference.
As for discussing with Neuro, generally the appointment is rushed, sometimes after a 3 hour wait over appointment time, I’ve forgotten what I’m there for, what’s really pressing, is the 1 or 2 most important things physically.
Yes plan retirement and travel. I miss my loss of a sense of adventure, another thing many MSers struggle with. It too can bring loneliness. I’m fortunate that my adult children are explorers. So I follow their exploits. Seeing them climb the Summits and Peaks is sad, ( personal loss )but rewarding. I helped teach them, we always called my daughter Dora the Explorer. She certainly is.
Arguably all of these symptoms are MS symptoms too.
For me it's damn well the fatigue that is isolating but then again most people annoy me anyhow, so I don' suffer from the isolation all that much.
Yes, it’s the fatigue. It’s hard to socialize when you’re exhausted. I admit, I jettisoned the annoying people, but even the minimal time spent with people I like sends me back sleeping!
As for the neuro asking me, that was more about general wellbeing and depression and anxiety rather than straight up loneliness (possibly less obvious question for someone who still works fulltime).
Never
In fact, when I make references to my MH, the neurologist who I suspect sees my cPTSD dx before he sees me said “that’s not my department I’m afraid”
My mum wants to work forever, I think. My Dad's death coincided with her retirement. She went back to work briefly to hand over and in that time received two job offers. Ten years on, she now works on a zero hours contract in a library. Some weeks this means full time. It means she has the freedom to travel to see me when she wants and to go on other trips closer to home (we are on opposite sides of the globe).
As for depression, I had it when I came down with glandular fever. The doctor said she was fairly sure I had it so rather than wait for the result of the blood test she prescribed steroids, antihistamines (I had come out in a rash), paracetamol for the fever and she handed me a leaflet about glandular fever. I read what it said about depression being one of the symptoms and immediately felt relieved that there was some rational explanation for the soul draining way I felt.
I have felt like this twice since, I think due to MS fatigue. I'm lucky that I don't experience fatigue often, not to the level of being unable to get out of bed anyway. When it happens it is very upsetting, I catastrophise and imagine I'll never feel well again. But I'm able to look back on the times it happened before and remind myself that I got better then, why should this time be any different?
Glandular fever kicked off acute panic attacks that persisted in one form or another for 15 years before MS turned up 10 years ago. Strangely, my intense health anxiety mellowed once I knew what there actually was to fear - I’m still terrified, but at least the bogeyman has a face…
Makes sense to me. My diagnosis took so long it was a relief to finally have one.
Never been asked . Consultant appt only 15 minutes, had 2 in the last 18months , last appt last June, appt this June was cancelled & rearrange for next year!
I would say I was lonely . Had to give up work in the NHS after 36 yrs . I do go to groups & try to keep myself active . I would say to you retire now while you can & do the things you both enjoy before it's too late for both of you.
It’s a hard one- even when I read the post I was thinking that it’s your responsibility as his neurologist to keep trying to get him help and not give up on him. For many of us we don’t want to openly accept help but do need it and with supportive care will/may start to accept help. I didn’t comment on the first post but that’s how I felt myself.
After reading your posts, almost every time I am so grateful for the time, energy and dedication and compassion you put into your work.
I meant to add, that you have definitely earned a youthful retirement. I have known too many people that wait a bit too long and don't get the opportunity to enjoy one after decades of hard work. Selfishly some of us, myself included, may not want you to entirely step away - there would be a huge void - but you undoubtedly deserve it. A true mensch.
Well put!!
I have never been asked this question.
I can feel lonely during a relapse, during viruses with prolonged recovery which I seem to catch easily over the last 2 years. I have contact at these times with any one. My family ring to check on me, yes. But I cannot go out and about. I turn to watch NETFLIX to numb until I start to feel a bit stronger and can walk a bit in the garden and then the slow recovery until I can go out into the big wide world again. It feels an uphill struggle and more familiar the older I get.
I think you are amazing and much appreciated my long and comprehensive appointment with you some years ago . However since that time you have had a serious accident and you are obviously older . You have spent years advocating for MS and your commitment is unwavering . I think your wife is right and that to travel together while you are still younger and able to do so would be great!