Hoping Recovery might Be Coming And Then It Not Materialising

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.

Category:

People & Blogs

Tags:

• Myalgic Encephalomyelitis
• me/cfs
• cfs
• chronic fatigue syndrome
• movement disorder
• neurological condition

[canawerms]

You vocalise our suffering so well and, believe it or not, it's a comfort. Thanks. And yes, not being bed bound something really to be thankful for.

[kaazoom]

@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.

[poppiana]

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.

[kaazoom]

@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.

[ironbith]

Same here! So frustrating! But I am grateful for any good days anymore. You & I are some of the lucky ones for sure!

[kaazoom]

@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.

[shoshiplatypus]

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.

[yomommaz1]

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!

[swifanickle]

Just a thought. I have been through all the tests for Gravis. What I have noticed is that when I have anything with oils, even nuts it is worse. The same for grains and cereals not to mention sugars. But the oils are strongly showing. Basically anything that puts a strain on my system trying to digest and break it down. When I keep to green smoothis and watch the rest of my diet, I notice a big improvement.

[neelubird]

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?

[HugsnJesus]

Paul, Precious Brother in Christ Jesus. I am continueing to hold you 'n yours close to my heart and in my prayer. Love n Hugs Always 'n Jesus 'n from me.

Jo Ann aka Great Granma Hug Attack: ) GGMHA

[2ladybughippies]

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

[Dawny789]

I have had a droopy eyelid as well. Was a lot worse a few years ago when I had a really bad relapse. Now it is almost gone but comes back a little when I have overdone it. All the doctor said was that it was muscle weakness. The only tests the doctor has ever done is the usual blood tests like celiac etc. That’s why I don't like going to the doctors because there is nothing they can do and they don't like to send you for more thorough tests.