- Messages
- 15
Thanks Mary, I'm off to buy some pantothenic acid online just now! Really appreciate your advice on that, and thanks for the link 
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Crash has just knocked me off my feet
- Thread starter ladybug_uk
- Start date
Hutan
Senior Member
- Messages
- 1,099
- Location
- New Zealand
Hi Ladybug, how are you feeling?
I was thinking, coping with grief while pacing is a particular challenge. When sitting or lying down for most of the day, unoccupied by other things, it is easy to get in to circular feelings of sadness. If your brain fog allows, maybe a novel will allow you to be somewhere else for a while? I am enjoying podcasts too.
You asked for advice on pacing. Probably you have found some of the good advice on that here in PR already.
My beginner's take is to pick a heart rate (there is a formula based on age but from what I can see 90 beats per minute is probably a good place to start for many). Then try to keep your heart rate under that. Monitor to see if you get PEM; if so, reduce your heart rate limit. If not, then you could cautiously increase it.
Having a continuous heart rate monitor with an alarm sounds to be very helpful - I'm aiming to get one. Someone suggested monitoring your resting heart rate when you wake up - if it is higher than normal for you, then you know to have an especially slow day.
From your kind responses to everyone here, I can tell you are a lovely person. Being a bit concerned about keeping a nice house is admirable and normal (even if it is an instinct that has to be squashed down when you are sick). I don't think that makes you OCD.
And wanting to be quietly on your own for much of the time is a consequence of this illness. If you enjoyed the company of friends and family before becoming ill then I doubt that you are a particularly socially anxious person. I think most people can look quite confident on the outside while sometimes worrying about what others think of them.
(Of course, if you are actually OCD or socially anxious, well, many amazing people have been too! Flaws make for interesting people.)
I was so pleased to hear that you have your husband with you. I guess this is a hard time for him too.
My suggestion to get help for specific tasks did include paying someone to do those tasks if that is a possibility. I know it is difficult to have a stranger come in to work in your house. I have a cleaner for 3 hours a week and my first one was annoying. But the cleaner I have now is lovely.
But I was mostly thinking of mobilising friends and family. Often people would be very willing to help if they are asked to do something specific that fits with their talents and availability of time. With what you are dealing with, you deserve help. People feel good when they help others - so think of it as you doing them a favour as much as them helping you!
(Actually, I read somewhere (and this was a finding by psychologists so it may not be true ) that people like you more after helping you. Something about the helper justifying their actions to themselves retrospectively 'I helped this person, so I must like them).
(Ha, giving advice is easy! But I need to listen to the idea of asking for help more myself. Having a better understood illness like MS maybe would have people offering help rather than us needing to ask. But perhaps if we keep approaching the world with the attitude that we deserve help, the understanding will come.)
Best wishes to you and your husband.
I was thinking, coping with grief while pacing is a particular challenge. When sitting or lying down for most of the day, unoccupied by other things, it is easy to get in to circular feelings of sadness. If your brain fog allows, maybe a novel will allow you to be somewhere else for a while? I am enjoying podcasts too.
You asked for advice on pacing. Probably you have found some of the good advice on that here in PR already.
My beginner's take is to pick a heart rate (there is a formula based on age but from what I can see 90 beats per minute is probably a good place to start for many). Then try to keep your heart rate under that. Monitor to see if you get PEM; if so, reduce your heart rate limit. If not, then you could cautiously increase it.
Having a continuous heart rate monitor with an alarm sounds to be very helpful - I'm aiming to get one. Someone suggested monitoring your resting heart rate when you wake up - if it is higher than normal for you, then you know to have an especially slow day.
From your kind responses to everyone here, I can tell you are a lovely person. Being a bit concerned about keeping a nice house is admirable and normal (even if it is an instinct that has to be squashed down when you are sick). I don't think that makes you OCD.
And wanting to be quietly on your own for much of the time is a consequence of this illness. If you enjoyed the company of friends and family before becoming ill then I doubt that you are a particularly socially anxious person. I think most people can look quite confident on the outside while sometimes worrying about what others think of them.
(Of course, if you are actually OCD or socially anxious, well, many amazing people have been too! Flaws make for interesting people.)
I was so pleased to hear that you have your husband with you. I guess this is a hard time for him too.
My suggestion to get help for specific tasks did include paying someone to do those tasks if that is a possibility. I know it is difficult to have a stranger come in to work in your house. I have a cleaner for 3 hours a week and my first one was annoying. But the cleaner I have now is lovely.
But I was mostly thinking of mobilising friends and family. Often people would be very willing to help if they are asked to do something specific that fits with their talents and availability of time. With what you are dealing with, you deserve help. People feel good when they help others - so think of it as you doing them a favour as much as them helping you!
(Actually, I read somewhere (and this was a finding by psychologists so it may not be true
) that people like you more after helping you. Something about the helper justifying their actions to themselves retrospectively 'I helped this person, so I must like them).(Ha, giving advice is easy! But I need to listen to the idea of asking for help more myself. Having a better understood illness like MS maybe would have people offering help rather than us needing to ask. But perhaps if we keep approaching the world with the attitude that we deserve help, the understanding will come.)
Best wishes to you and your husband.