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I know this condition varies so much, but I was wondering if many of you experience periods where your body functions normally and you are able to travel or take part in sport? Or even spend time socialising without payback for days later?
I have had this condition for about 8 months now, and although there has been some improvement from the beginning (which I am very grateful for), the thought of remaining like this scares me.
I've had a few occasions where I thought I was over the worst of it, but then I get worse again. I realise this is the nature of the illness, but I was just hoping to find some stories of hope! Thank you for reading :-)
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I have had chronic ftigue for about the same time as you, and also have improved gradually since the beginning. I would say in my case it is quite mild, and I have been able to keep working, though mostly struggling and also having quite a lot of time off. As I work in a FE college, luckily we have frequent holidays off, and of course a long summer break, and this has helped enormously. So has having an understanding boss.
However, on the days when I feel more normal, it is so tempting to do a bit more in the joy of having more energy, that I invariably get worse again. And generally that is just after a small increase in activities, not a full day. So I too will be reading this thread in the hope of success stories.
I do know of one person who got CFS around ten years ago, she had to give up her job and move back with her family, but is now completely well, She says she used pacing, and also a course of homeopathic treatment which her family paid for as it was expensive. She still has bad days and sometimes need to take a day off work, especially when she is overtired or has a cold or something, but I would say she has made a very good recovery, although it that took her several years.
Thank you for your reply it's great to hear you have good days, along with understanding people around you. I'm definitely the same in that on the good days I maybe do too much and suffer afterwards, but I think it's those days where I haven't done anything over exerting and yet I feel dreadful that I don't understand!
That definitely gives me some hope that you know someone who did recover, I think if there are good periods along with the bad I would cope better. Before I got this I was planning to do the Inca trail-maybe one day
Hope you contine to recover, and enjoy the summer holidays!
What first triggered your illness? It's really good to hear that you do have periods of being OK! My nephew is 4, and spending 30 minutes with him completely wipes me out! The fact that you can do all those activities at the moment really does give me hope. I think at the moment I'm really scared that I won't ever be independent again, I'm 33 and have had to move back in with my parents-they are so lovely, but I don't want to end up being a burden to them!
I'm definitely learning that plans don't go well as the illness can be so unpredictable, you seem to have a really positive outlook
Thank you for all your advice You have given me some hope
But my friend has recovered and several others have improved, so I take it I just need to learn to be very patient with myself and not expect miracles, rather taking 1 step at a time. What aggravates my condition most is any emotional upheavals - negative or positive. So I work on maintaining calmness as much as it is with this condition humanly possible :-) The most important - Don't give up, thing often get better in time ;-)
Regarding acupuncture - it was helping me befor my cfs/me got worse, as it would help me to sort of level my emotions, but lately I had to stop, as I started to have adverse reactions even to the acupuncture. Instead of helping me, it actualy made me feel even worse!!
I am now taking every day Aloe Vera gel LR (FLP company is also quite good quality aloe). ALso I take Enterosgel daily (another rather expensive thing) - enterosorbent
My friend has recovered and now is back to her full-time job, but is still cautious of not to over-exert herself.
She said her GP gave her advice to divide a day in 3 8-hours lasting parts. When you do some more difficult activity in 1 part, then you are supposed to give yourself a rest for the 2 other 8hours parts.
She says it helped her. However, she did not have a very serious condition - her symptoms we mild to moderate only.
My symptoms are moderate to very severe, so for me this advice is not very helpful, as I need to do my pacing a bit different. - I take a shower, and rest, have a breakfast and rest, often rest even during having a breakfast as often even chewing or raising my hand with the spoon towards my mouth is painfully exhausting. (not always that bad though)
What worked for me the most was to leave London UK where I have spent almost 9years of my life, and I have moved to a small quiet town.
What I find very important is to become aware of any forms of my own denial as to the seriousness of my condition which leads me to over-exertion and then terrible crash.
Also I have to learn to be more patient with myself, to adjust my own attitude, find ways in which I can still be useful to others, to be able to appreciate things I still CAN do and not to cry over the things I can't do any more.
Feeding my spirituality is the most important thing to me - it makes me strong inside and more resillient.
All the best to you, things often improve over the time. Even if not our health condition, but at least our own attitude towards it can change to more helpful.
Never lose hope!!! ;-)
Sorry to hear that your symptoms can be so severe, it sounds like you are coping so well with it all. I think the attitude adjustment is something I struggle with. I am positive most of the time, but when the symptoms become more severe I just lose hope! A lot of it is denial over how bad it is, and again with acceptance - I accept for a while, then hit a point a being fed up, then start again!
Spirituality is something that I have been trying to practice, and it definitely helps to a degree. Thank you for sharing your friend's story and your positivity
your question is very interesting, and for a long while I wondered about it myself. I mean, how can I sometimes keep on without crashing for a week or longer while I'm normally ill after just a bit of exercise like walking briskly home from a bus stop. This was until my doctor pointed out the typical pattern in milder forms of CFS, where you can keep on exercising and socialising for a while, for example, during holidays, and then you crash the next day after coming home, or after starting working. Even in these cases it is exercise/activity that provokes the crashing, but in high spirits away from home/worries you'l be able to keep going longer than usual. Eventually your body reaches the limit, and activity takes its toll.
Does this kind of pattern sound familiar to you?
I know some people will say 'get your husband to cook the evening meal', but to be honest, he works very hard all day (I sometimes have to come home from work and sleep), he does plenty around the house (ironing, DIY etc.) and he can't really cook, so I don't feel that it's fair to put that pressure on him.
I think as long as you are getting a few good meals in a week it's a start, and if you take supplements too. How long have you had this condition for? Do you know what caused it?
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