please can anyone advise what i can try to lead normal life

Hi Amanda,

It sounds like you have a difficult situation. I suppose you've have a book or two on ME/CFS and pacing. I've had ME/CFS for 17 years with minor improvements (or crashes) over the years. I find it difficult to set up a pacing schedule since my cognitive functioning leaves something to be desired.  The best I've managed to come out of a relapse is 20-30 minutes up, 20-30 minutes sitting or bed.

Wishing you the best.  

Hi Amanda-can you tell me how you were diagnosed?  I can't find any doctors who bevieve ME/CFS is real her in my state of Texas.  I looked it up and it is considered real by our CDC and AMA and Dept of Human Services now but anytime I see a doctor they don't seem interested.  Maybe because I have so many other issues.  Cancer or not I believe my ME/CFS is a seperate issue that needs addressing by my physicians if for no other reason that validation that for 10 years they said there was no csuch a disease

I am so sorry your husband walked out on you when you needed him the most. The more you read the more you realise there is no quick cure. I can only say what I have done. I have stopped beating myself up. If I start  losing the plot I try to get a grip by talking to my self. Someone could be a millionaire if they found a cure. Which I could say something that would help just stick in there, People do get over this but there is no time frame. I hope you do have someone to look afer you. My wife has been terrific, I try not to effect her life any more than I have to.

Accept that it's going to be difficult Amanda, I guess you are in your late thirty's so it is at a time when life should be at a peak.But you no this so I am probably not helping. I have found this forum helpful n the sense I am not my own. Good Luck  

yes-you are not alone

I suffer from pain in leg muscles. I take a magnesium and CoQ10 and a baby dose (5mg) of amitriptyline at night. This enables me to stay out of bed an have some mobility. 

Hi, Amanda. I'm so very sorry you have such a severe case of ME/CFS. It's terrible that your husband left you. Guess he didn't believe in the "for better or worse part" of marriage. I suggest you might want to read an article in the New Yorker written by author Laura Hillenbrand: "A Sudden Illness." (Laura wrote "Seabiscuit" and "Unbroken," both of which were made into movies. Her article is available. She write in a very moving way what it's like to have severe ME/CFS. From what I've read, she seems to be a lot better these days, though she still has the illness. I think her words and her battle are inspiring. Especially since she still managed to write two books, even though having severe vertigo. Unfortunately, there's no magic cures that I know of, only the concert of managing the illness through pacing, and getting lots of rest. How long have you been ill? Your symptoms may well improve over time. Also, there's a lot of new, exciting research being done, so there is hope. I wish you well.

Really sorry to hear about your situation. I was lucky as my husband stuck by me but I did lose a lot of so called friends when I became ill as I was no longer able to go out and do much. I've had ME for 21 years and lost my job through ill health. Have been bed bound at points too but am to go out for short periods now. Regarding the ME the best thing to do is get plenty of rest and eat as well as you can. Regarding feeling isolated you could possibly see if they are any of local self help groups (not just ME ones) which could help you. I contacted one near me and they were able to send someone to my house to do a positive thinking course from home with me. When I improved a bit I mangaged to go out and attend part of another one of their courses where I met someone who is now a good friend. There might also be a befriender scheme where a volunteer could come to your house and spend time with you or a counselling service where someone would speak to you at home. A lot of these services are free. There are a lot of nice people out there and your condition could improve a bit through time so please don't give up hope.

Look after yourself

Should really be in bed now - body shattered but mind not switched off yet. Meant to say a good place for getting a dive on help would be your local library. Also was thinking about your walking

Should definitely be in bed pressed wrong button. Was saying with your walking I think you might be trying to do too much. After I was bed bound I struggled to make it down the path to the car. Was given advice at hospital about walking. Was told to look for things outside to use as goals to walk towards (such as distance between two lampposts), REST halfway and walk back again and to have rest days in between walking to let my muscles recover. I followed this advice and managed to build up to walking for 30 mins most days and on really good days 40mins - had to lie down when I got home but I did it! It took me months to build up to that but it might be possible. I would suggest you maybe try walking for 5 mins, then rest for a few mins,preferably sitting - is there a bench,wall,bus stop you could sit on? Then walk back and rest when you get home. Only try the walk again when your muscles calm down and try an increase the length of to time vey gradually. You might also find relaxation CDs useful as if you feel stressed a lot you are using mental energy too. Hope this helps. Definitely ready for bed now,!!!

Amanda's thread -

I was just re-reading the posts and want to comment on how many thoughtful ideas have been exchanged. If you can't find a support group locally look at what you came up with here.  Wishing you well.  Karin

Hi Amanda,

I know how hard it can feel to do so little, when I'm guessing, like most people on here myself included, you were very active before? The guidelines are to do small amounts of activity and rest. And its hard, I know . When I first got this, and I had an injury also with it, I was told to swim and felt so embarrassed by my 5 min swim that I'd try harder. I ended up in alot of pain and realized this wasn't a good idea.I had to start it all again. At present, I too am in bed alot of my time and on bad days it can feel lonely and sad but, I can manage to get out of this.mindfulness is a huge thing for cfs/me and living in the moment can really help I've been told plus, as mentioned elsewhere here, relaxation and pacing. I also really believe that being gentle with oneself helps. Your husband leaving won't help, its hard when we have to battle on alone but, see this as a strength. Find support from friends and family if you can. also, it doesn't mean you're "done" just because he chose to leave and its not your cfs/me that did that. He chose that path. Relationships ending can make anyone feel like "if only" eg. I were thinner,more beautiful etc and in our case-had more energy. Try not to focus on this. if you feel you would like another relationship, there's nothing to say you won't have another one.

One step at a time Amanda, and in our case, small steps, is the way forward. Others have put good ideas re cfs/me groups, reading others recovery etc. Maybe even see if physio could help with the pain?

Also, have things around you that cheer you up or used to cheer you up. Photos that make you smile, silly captions/cartoons, flowers,smells you might like,the odd chocolate/sweet,favourite music (for me it would have to be turned low) even a low key massage.Things that give your senses a treat. Be good to yourself.

Right I'm done! Eyes going,brain fog and hand tired : ) hope your day goes well.

Best wishes

Beverley