Everything you said. True for me. Not telling you what to do but I would never go back to that cardiologist again. In the 6 yrs I’ve had LC, there are at least several doctors on my list that i never went back to for similar encounters. I am soooo very sorry that happened to you, Paul. That tightrope is real. I had something to leave the house for EVERY DAY last week & when today hit - I’ve been in bed all day. Living alone, I’ve gotten up for coffee (can’t live without it) and easy food to prepare to eat. 3 doctors appts in one week, even tho 2 of them are tried & true & help me, the new Neuropsychologist i had a phone consult with wore me out with squeezing my life story into 45 minutes (necessary, i realize) & it will be 2 months before i have a 2-4 hour visit with him. I’m usually better at planning than last week’s went but sometimes, esp with doctors, it’s unavoidable. I salute you for taking care of yourself, be it with mobility aids, meds or whatever else helps you at least have somewhat of the life you used to have. Thank you for sharing this & i am praying that your next appt with a medical person is much more smooth & the person YOU are paying has more compassion & knowledge about your condition or at least is willing to investigate it & learn more about it if they are continuing as your doctor. It will also help other people that dr treats in the future. Appreciate you sharing so much, so sorry that happened, i do know the feeling, & wish you the miracle of better health & healing every day. 🙏🫂❤️🩹🌈💝
Thank you so much Beth, the thing is I expected it to happen which is why I delayed it for so long. I really appreciate your support. It’s amazing that we can be there for each other as a community from around the world 😊
Thank you for sharing this. I'm so very sorry your cardiologist treated you this way. I find it so perplexing and bewildering why after a pandemic and resulting Post Viral condition, that medical people continue to not be versed with Long Covid and with postexertional malaise. In the past I tried to explain Long Covid to my few friends, but they all think im malingering. Except for the one friend who is supportive by visiting me; but recently she told me I need to stop thinking I have Long Covid and instead think healing positive thoughts that my cells are healing. I hardly ever mention Long Covid. Again bewilderment. And hurt. Thank you for the reminder not to feel guilty. We need to use everything, including mobility aids to make our lives more liveable. You are seen. Our struggles are real. Bless you Paul.
It’s very hard. It took me over a year to come to terms with knowing I needed a wheel chair. The freedom it gave me quickly outweighed my psychological discomfort. I hope your mobility aids improve your quality of life. That, after all, is most important isn’t it?
It is, I need to remember that! And I really get that , it took me about a year as well. I am now trying to find a vehicle to transport my chair more easily!
Ugh, it is so frustrating isn't it? I too have gained more weight than I would like (5stone!!) since getting MECFS and use a powerchair to get around, walking with a rollator when I can, but the amount of times a doctor has told me to 'just exercise' is unbelievable, no amount of telling them that I can't seems to work, so I just don't go now unless I really have to, and I take that so called advice to exercise with the tiniest pinch of salt!! Keep smiling 🧡
It really is! There has been increased awareness around ME/CFS and Long Covid here in the UK, but it is still a constant battle. I am so sorry you are in the same situation - we need to stick together!
Yeah, the awareness is growing but it isn't quite filtering through properly imho. A constant battle is right, and whilst we may be absolutely knackered most of the time, together we are mighty!! We're all in this together! 🧡
This response from doctors is very familiar to me. I've stopped trusting doctors with my struggles, now I don't try to get them to understand. I only go if I need something practical like a referral or prescription, and I try to block out their judgement to protect myself
Sorry to double dip but I wanted to share….the day after I read this, I voice texted (with those whose cell phones will cooperate with mine, the others i texted) the last 5 sentences of what you wrote, introducing you to them and then sharing how it was the kindest, truest & most accurate way to describe what I have been going thru for 6 years (some of them still don’t “get it”). For me those 5 last lines explain it all. “Doing less than someone else expects……you are not walking it alone.” And thanked them for not making me walk it alone. The responses I got were more heartfelt than I expected & I think it opened their eyes to not just the pain portion (for me, it can be extreme as it started with Trigeminal neuralgia, rare & up at the top of the pain scale with kidney stones & childbirth & not many with Long Covid have it, thank God) but to the other half I developed, the fatigue, label it what you will, PEM, ME/CFS, my doctors still can’t agree on that - but i figured since that was in print, so to speak, hopefully you wouldn’t mind me sharing that with my dozen or so closest friends (I’m single & childless). It very much put the debilitating challenge it can be even if “you don’t look sick” in the usual way we’re all so used to in a much different light to them & I appreciate those words of yours to ME & the rest of us walking that tightrope, that I don’t think people without Long Covid even are aware of, more than i can put into words. Thank you thank you thank you, praying for your healing always (& all others as well), and so grateful for you. God Bless You
for the LIght you Shine. (Probably already told you my paternal Grandfather’s name was Paul & he was a Lutheran minister/missionary to China where my mother was born, my uncle was named Paul as well after his father & also a Lutheran minister/missionary to Japan, & my nephew’s name is Paul (but he’s a musician lol). And growing up - my best friend’s name was Paula & she is my best friend still after 7 decades lol. Great name) 🙏❤️🩹💝🫂
Beth, thank you so much for taking the time to write this.
Knowing that those last few lines helped you find words for something so difficult—and that they opened the eyes of the people closest to you—means more to me than I can say. As writers, we always hope our words might help someone feel a little less alone. Reading your message reminds me why I keep writing.
Thank you for trusting me enough to share those words with your friends, and thank you for sharing their response too. I’m so glad they met you with understanding and compassion.
And I smiled at the wonderful roll call of Pauls in your family! Perhaps it’s a name destined for encouraging people. 😊
Thank you again, Beth. Your kindness has encouraged me today more than you know. ❤️
I love the smile on your face but I love Maisie’s smile even better. Dogs are much better physicians than most out there. I can’t find a good one here in the United States who will truly listen to me. It is all about the next drug they want you to take these days.
I am sorry for the LC and all the problems it brings you but I’m also grateful for it as without it I would have never got to read your thoughtful articles. God is doing something special through you to reach people that would not have been reached if you were healthy.
May God bless you and give you more love, joy, peace and patience in the days to come (And increasing wisdom in writing articles!).
Thank you for those kind words Daryl, it means a lot. I am sad though that it sounds the same where you are. I think if they can send you away with a drug they consider it job done !
The thing is I expected it, and was even half joking with my daughter about how they will 'fat shame' me. When it happens, it always gets to me though.
Everything you said. True for me. Not telling you what to do but I would never go back to that cardiologist again. In the 6 yrs I’ve had LC, there are at least several doctors on my list that i never went back to for similar encounters. I am soooo very sorry that happened to you, Paul. That tightrope is real. I had something to leave the house for EVERY DAY last week & when today hit - I’ve been in bed all day. Living alone, I’ve gotten up for coffee (can’t live without it) and easy food to prepare to eat. 3 doctors appts in one week, even tho 2 of them are tried & true & help me, the new Neuropsychologist i had a phone consult with wore me out with squeezing my life story into 45 minutes (necessary, i realize) & it will be 2 months before i have a 2-4 hour visit with him. I’m usually better at planning than last week’s went but sometimes, esp with doctors, it’s unavoidable. I salute you for taking care of yourself, be it with mobility aids, meds or whatever else helps you at least have somewhat of the life you used to have. Thank you for sharing this & i am praying that your next appt with a medical person is much more smooth & the person YOU are paying has more compassion & knowledge about your condition or at least is willing to investigate it & learn more about it if they are continuing as your doctor. It will also help other people that dr treats in the future. Appreciate you sharing so much, so sorry that happened, i do know the feeling, & wish you the miracle of better health & healing every day. 🙏🫂❤️🩹🌈💝
Thank you so much Beth, the thing is I expected it to happen which is why I delayed it for so long. I really appreciate your support. It’s amazing that we can be there for each other as a community from around the world 😊
Absolutely 🙏🫂💝
Thank you for sharing this. I'm so very sorry your cardiologist treated you this way. I find it so perplexing and bewildering why after a pandemic and resulting Post Viral condition, that medical people continue to not be versed with Long Covid and with postexertional malaise. In the past I tried to explain Long Covid to my few friends, but they all think im malingering. Except for the one friend who is supportive by visiting me; but recently she told me I need to stop thinking I have Long Covid and instead think healing positive thoughts that my cells are healing. I hardly ever mention Long Covid. Again bewilderment. And hurt. Thank you for the reminder not to feel guilty. We need to use everything, including mobility aids to make our lives more liveable. You are seen. Our struggles are real. Bless you Paul.
Thank you Leonie, it is such blessing to have this community and remember that we are not alone 😊
It’s very hard. It took me over a year to come to terms with knowing I needed a wheel chair. The freedom it gave me quickly outweighed my psychological discomfort. I hope your mobility aids improve your quality of life. That, after all, is most important isn’t it?
It is, I need to remember that! And I really get that , it took me about a year as well. I am now trying to find a vehicle to transport my chair more easily!
Ugh, it is so frustrating isn't it? I too have gained more weight than I would like (5stone!!) since getting MECFS and use a powerchair to get around, walking with a rollator when I can, but the amount of times a doctor has told me to 'just exercise' is unbelievable, no amount of telling them that I can't seems to work, so I just don't go now unless I really have to, and I take that so called advice to exercise with the tiniest pinch of salt!! Keep smiling 🧡
It really is! There has been increased awareness around ME/CFS and Long Covid here in the UK, but it is still a constant battle. I am so sorry you are in the same situation - we need to stick together!
Yeah, the awareness is growing but it isn't quite filtering through properly imho. A constant battle is right, and whilst we may be absolutely knackered most of the time, together we are mighty!! We're all in this together! 🧡
This response from doctors is very familiar to me. I've stopped trusting doctors with my struggles, now I don't try to get them to understand. I only go if I need something practical like a referral or prescription, and I try to block out their judgement to protect myself
I get that completely, Rosemary!
Sorry to double dip but I wanted to share….the day after I read this, I voice texted (with those whose cell phones will cooperate with mine, the others i texted) the last 5 sentences of what you wrote, introducing you to them and then sharing how it was the kindest, truest & most accurate way to describe what I have been going thru for 6 years (some of them still don’t “get it”). For me those 5 last lines explain it all. “Doing less than someone else expects……you are not walking it alone.” And thanked them for not making me walk it alone. The responses I got were more heartfelt than I expected & I think it opened their eyes to not just the pain portion (for me, it can be extreme as it started with Trigeminal neuralgia, rare & up at the top of the pain scale with kidney stones & childbirth & not many with Long Covid have it, thank God) but to the other half I developed, the fatigue, label it what you will, PEM, ME/CFS, my doctors still can’t agree on that - but i figured since that was in print, so to speak, hopefully you wouldn’t mind me sharing that with my dozen or so closest friends (I’m single & childless). It very much put the debilitating challenge it can be even if “you don’t look sick” in the usual way we’re all so used to in a much different light to them & I appreciate those words of yours to ME & the rest of us walking that tightrope, that I don’t think people without Long Covid even are aware of, more than i can put into words. Thank you thank you thank you, praying for your healing always (& all others as well), and so grateful for you. God Bless You
for the LIght you Shine. (Probably already told you my paternal Grandfather’s name was Paul & he was a Lutheran minister/missionary to China where my mother was born, my uncle was named Paul as well after his father & also a Lutheran minister/missionary to Japan, & my nephew’s name is Paul (but he’s a musician lol). And growing up - my best friend’s name was Paula & she is my best friend still after 7 decades lol. Great name) 🙏❤️🩹💝🫂
Beth, thank you so much for taking the time to write this.
Knowing that those last few lines helped you find words for something so difficult—and that they opened the eyes of the people closest to you—means more to me than I can say. As writers, we always hope our words might help someone feel a little less alone. Reading your message reminds me why I keep writing.
Thank you for trusting me enough to share those words with your friends, and thank you for sharing their response too. I’m so glad they met you with understanding and compassion.
And I smiled at the wonderful roll call of Pauls in your family! Perhaps it’s a name destined for encouraging people. 😊
Thank you again, Beth. Your kindness has encouraged me today more than you know. ❤️
I love the smile on your face but I love Maisie’s smile even better. Dogs are much better physicians than most out there. I can’t find a good one here in the United States who will truly listen to me. It is all about the next drug they want you to take these days.
I am sorry for the LC and all the problems it brings you but I’m also grateful for it as without it I would have never got to read your thoughtful articles. God is doing something special through you to reach people that would not have been reached if you were healthy.
May God bless you and give you more love, joy, peace and patience in the days to come (And increasing wisdom in writing articles!).
Thank you for those kind words Daryl, it means a lot. I am sad though that it sounds the same where you are. I think if they can send you away with a drug they consider it job done !
This response from doctors makes me so angry. I’m sorry you have to deal with this. They always seem to think they know more than you.
The thing is I expected it, and was even half joking with my daughter about how they will 'fat shame' me. When it happens, it always gets to me though.