In the last 3 months have seen hint of recovery, but these have only been dashed by a return of symptoms and reduced functioning. This is a quick update on what has been going on.
@poppiana I used to do the 4 hour drive Wales, as a passenger, when my son was at university. The journey used to wear me out too. We didn't do much when we got there, but i enjoyed the break from being at home all of the time. I hope you have a good time and don't suffer too much for it.
Lovely to hear you are doing ok. I'm moderately affected too and have some good days, but as you say still limited in what I can do on them.This weekend I am going to Wales to see my daughter. It's a 4 hour drive there and back, and the car journey will really wear me out so I will probably relapse early next week.
Good to catch up with you again, Paul. We first "met" on the Limboland forum back in '07. Interesting you've got a dx of ME - I was dx'd with it in Oct 07. I do not suffer so many symptoms as you or so severely but am a part-time wheelchair user and walk with crutches in the house. Hope you continue to do better, and manage to cope with your symptoms OK. I agree about drs - they can't do anything and we just have to manage the condition ourselves. Take care, Shoshi.
Hi Paul, Nice to hear from you- your voice sounds so much better now. Most of March has been pretty good for me too and I have mixed feeilngs about it cos' on the one hand, I know I can experience a setback and relapse at any moment but on the other I can't help but wonder "Is this it?", in other words, is this the time when I turn the corner and get better? I have to hold back the enthusiasm to stop me getting too hurt WHEN (not IF:S) things start to get worse again. Cynical? Moi?
@canawerms Thank you. I am so thankful I am not bed bound. I really feel for those who are. I have been able to sit in the garden and enjoy the sun for a while today. It's small things like that which makes such a difference. Even if my body isn't working, at least it gives me a boost psychologically.
Paul All tho I wish your video would have been better news,inregards to how you are doing, it was nice to hear from you. I understand cherishing the good days that we do get. Plz reconsider pain meds. It is more wearing on your body to fight it. take care
@ironbith You are right - we are the lucky ones. I seem to have had more of these good periods since last summer, but I can go months without having them. We just have to enjoy them while they last and try not to et too despondent when the crash comes.
I am good friends with a Lyme doctor who treats Lyme Disease and it could very well be that you have Lyme. An easy thing to test considering all that you have been going through, is to find ANY doctor that would be willing to prescribe Bicillin LA twice a week IM shots. If you have a reaction to it after a couple weeks then you know that you have Lyme. Interestedly Lyme sufferers and misdiagnosed with CFS and then get treated with antibiotics and almost magically get better in a couple months!
@deadgirldreaming Whether the burning and tingling is caused by the ME or the diabetes is hard to tell. I have had burning and tingling before when I was not diabetic. The droopy eyelid can vary from day to day. I'm not so good at the moment so it is quite bad. I think it is just due to the muscle weakness ME causes. Myasthenia gravis can cause this symptom too, but I am sure I have been tested for that.
@poppiana I used to do the 4 hour drive Wales, as a passenger, when my son was at university. The journey used to wear me out too. We didn't do much when we got there, but i enjoyed the break from being at home all of the time. I hope you have a good time and don't suffer too much for it.
Lovely to hear you are doing ok. I'm moderately affected too and have some good days, but as you say still limited in what I can do on them.This weekend I am going to Wales to see my daughter. It's a 4 hour drive there and back, and the car journey will really wear me out so I will probably relapse early next week.
Same here! So frustrating! But I am grateful for any good days anymore. You & I are some of the lucky ones for sure!
Good to catch up with you again, Paul. We first "met" on the Limboland forum back in '07. Interesting you've got a dx of ME - I was dx'd with it in Oct 07. I do not suffer so many symptoms as you or so severely but am a part-time wheelchair user and walk with crutches in the house. Hope you continue to do better, and manage to cope with your symptoms OK. I agree about drs - they can't do anything and we just have to manage the condition ourselves. Take care, Shoshi.
Hi Paul,
Nice to hear from you- your voice sounds so much better now. Most of March has been pretty good for me too and I have mixed feeilngs about it cos' on the one hand, I know I can experience a setback and relapse at any moment but on the other I can't help but wonder "Is this it?", in other words, is this the time when I turn the corner and get better? I have to hold back the enthusiasm to stop me getting too hurt WHEN (not IF:S) things start to get worse again. Cynical? Moi?
@canawerms Thank you. I am so thankful I am not bed bound. I really feel for those who are. I have been able to sit in the garden and enjoy the sun for a while today. It's small things like that which makes such a difference. Even if my body isn't working, at least it gives me a boost psychologically.
Paul All tho I wish your video would have been better news,inregards to how you are doing, it was nice to hear from you.
I understand cherishing the good days that we do get. Plz reconsider pain meds. It is more wearing on your body to fight it.
take care
@ironbith You are right - we are the lucky ones. I seem to have had more of these good periods since last summer, but I can go months without having them. We just have to enjoy them while they last and try not to et too despondent when the crash comes.
I am good friends with a Lyme doctor who treats Lyme Disease and it could very well be that you have Lyme. An easy thing to test considering all that you have been going through, is to find ANY doctor that would be willing to prescribe Bicillin LA twice a week IM shots. If you have a reaction to it after a couple weeks then you know that you have Lyme. Interestedly Lyme sufferers and misdiagnosed with CFS and then get treated with antibiotics and almost magically get better in a couple months!
@deadgirldreaming Whether the burning and tingling is caused by the ME or the diabetes is hard to tell. I have had burning and tingling before when I was not diabetic. The droopy eyelid can vary from day to day. I'm not so good at the moment so it is quite bad. I think it is just due to the muscle weakness ME causes. Myasthenia gravis can cause this symptom too, but I am sure I have been tested for that.