Does chronic fatigue syndrome progress

Thanks Jackie, i will definitely start taking things more easily, and learning to relax more, thanks so much

Yes, but being calm, relaxed and centred enough to pace must be a crucial part of it and if someone with ME has high anxiety levels it's really difficult and almost a catch 22 situation. Because I find that the self discipline required puts more of a stress load on me and defeats the object.

Also I can't force mysellf to relax by telling myself to; it doesn't work. I just go to sleep or rest when I need to. An occupational therapist told me to have pillars of rest rather than my usual 2 hours sleep in the afternoon but that's just not the way my body works, or my mind, we're all different.

I agree with pacing but in our own individual ways and not by an overly stricly self enforced structure or doing it how someone tells us to.

I'm only speaking from my own experince of living alone and going through menopause. I hear such good results from a lot of people and it's clearly great for you dragon.  

I just feel guilty and a failure when I keep reading about pacing though because I can't do it. I have to do all of the things necessary for survival myself so it's what's necessary when necessary to do, as long as I eat and deal with things as they arise I sort of basically function, and rest and sleep when I can.

Hi Georgia

You are not a failure!

That's the awful thing about ME.

When you think you have got a handle on it suddenly it strikes again.

If it's any consolation, I am still persevering with the pacing, mostly on goodish days and brill days ( like you I sleep on bad days, it's easier) and That,'s after a year. I've had it for 3 years but only come to terms with it in my head about a year.

I think you will beat it .....when you become, like me, the warrior that we need to be. It is a fight but one your brain has to take control of.

It's a bit like getting to know yourself all over again but in miniscule detail; odd, I know but that's my perception of it. I don't think anyone beats it short term but long term, Yes, many do.......so there's hope.....

Let's hope we are among the thousands that beat it.

Jinny 💝

Aw thank you Jinny, you're reply's so heartwarming and wise. 

I've had it for 10 years and persevered and learnt a lot about herbs and diet. I have some of the symptoms under control now. A big reason why I'm not coping so well is that I used to have carers but that's stopped due to government cutbacks.

Thankfully I've kicked up a stink about that and I think I'm getting my direct payments back so I can find another carer. It's a lot easier to pace when someone is there to help with the physical things of life, otherwise you can go under however strong a person you are. 

So advice in case someone needs it is if you're struggling alone ask for help and fight for it if necessary!  If you're not getting the care you need speak to the care ombudsman.

Hi again

I am one of the lucky ones in life!

I have a hubby who is a wonderful man who thinks of me always.

He works funny hours so can be away at night so I am pretty independent of him. I try not to put upon him. If there's anything he can do in advance to help me, he will.

I have worked all my life so have a pension so don't look for financial support but I have wondered about getting a wheel chair just to have a bit of a normal life on weekends, days out (well,part days! ) even a trip to the supermarket would feel normal again!!! Sad eh ?

10 years is a long time but then someone else on this site will say ...I've had it for 20 years.....so there's always someone else worse off than yourself ...and it's thinking like that ......that gets me through life.

I am here to support you if I can do feel free to correspond.

I wish you well.

Jinny 💝💝💝

Definitely get an electric wheelchair, they're brilliant! 

It is a struggle to go out in one at first, well it was for me and other people have said that too. It felt like admitting defeat and there's a sense of feeling embarassed but an occupational therapist said it's not defeat; it's an empowering tool.

I can't think in the way of someone's better or worse off than me because  if I'm thinking of someone worse off it brings me down because I feel so sad for them, and if I think of someone better off same result, but I get down because I wish I was as well as them..

I don't see the point in making comparisons? We're in the situations that we're in and I don't know why or how to make it feel better by assessing them in varying degrees. Although a lot of people say it, you know, you should be grateful that you're not as bad as them etc, and suggest that it helps them it doesn't help me.

Perhaps I'm just odd but other people's suffering makes me feel worse! 

thanks dragontest, i have started to do activity diary now, i am quite shocked as to what drains energy, its quite eye opening, i always thought reading books and watching TV were relaxing activities, little did i know. But i do realise what i class as low energy will be high for others . But i am definately looking into the mental effects of energy consumption, which i actually think may bethe cause of a lot of my problems.Ii rarely switch off, and struggle to relax, I over plan things, including what to eat for tea, what food i will buy etc etc. i do tend to go overboard too, so i will have to watch myself.

I will definately try to be more aware of my mental activity. But with having anxiety, I do find this difficult.

this is where i too struggle. I wish i could switch off, i have anxiety, i am black and white thinker, i plan too much, i put too much pressure on myself, i over do things and take things literally. Sometimes it takes others to rein me in mentally!!

Even the meditation i struggle with, i have poor attention span and concentration, although i am trying to stick with 20 mins mediation in the mornings , am hoping i will improve on this.

I even drift when reading and cant concentrate for too long, am such a pain.

if i do things i tend to go overboard with them. I am sometime all or nothing. I have heard this is a common trait in people with ME, as they are high achievers??

I do hope you manage to get your carers back, its really not fair when your struggling as you do. There dosnt seem to be much support for people with ME???

One of our consultants where i work, thinks its in my head. He is old school, and thinks its all emotional. I am trying to get through to him, but very difficult. He can see how i get when i flare up Grrrr!!!

if it gets you out and about and enjoying your life as much as possible, then it can only be seen as a good thing in my eyes.

I also have to use a set of wheels to move about in when I’m bad with the ME. Unless you suffer from ME others (unless they are close to you) don't really understand how fluctuating the illness is... a broken bone in a cast they can see and perhaps understand, the difficulties you face with ME it’s a hidden illness for most of the time to 90% of the people around you. That is where I spend a lot of time and my energy trying to educate them to no avail at times.

I am also lucky to have a partner who understands my limits and weaknesses with my ME, it must be very hard if you’re on your own.

Kudos Nichola, I have anxiety at high levels too and so if I had to not watch programmes or read I'd be staring at the wall listening to the anxious voices in my head. Worring about this and that and basically not relaxing.

Nichola this is one area where I think pacing is exceptionally important; our emotions take up a lot of energy, especially negative ones. Don't waste your precious energy being stressed about an ignorant man. I've done that with my horrible neighbour and they're just not worth it. 

Thanks georgia, it did upset me to think he thought it was in my head, he then said i need to be on citalopram. Well i do take meds for anxiety and have done for many years, but i realise that he is just ignorant.

My friend who is a life coach has taught me to do a gratitude diary which i do every day now, and i think this helps. I did make the mistake of being over active to distract myself from anxiety and boredom too, and the house- i always see mess at home and get irritable and frustrated. I prob didnt realise this before now, but all these negative feelings, iritability and angst with kids and hubbie has prob been causing a lot of problems too. I would also throw myself into planning whatever, to keep my mind occupied and then i would not see the mess.

Its a catch 22 as you say.

Its somthing i have been trying to work on for last few months, and am reailsing now from reading these threads how important our emotions are in our lives. And how precious life is, i really need to focus on whats more important and enjoy life. xx

Sheesh I'll give him in our heads!!!!   

There is the amusing side of knowing that these so negative and horrible couldn't cope with ME for even 5 minutes.

Is anyone getting really peeved with the fb, twit and good images on the right that are really hindering editing? 

He he your so right , made me chuckle that one 😂

NO, not even noticed it . You should scroll up and down and the images stay constant but I am on a mac, so no impact here.

YES they are really bugging me!