My recovery story, in case anyone is interested

[james7a]

I understand your frustrations Justy, CFS is unfair. When you have kids with something like CFS that makes it even more difficult, you have them to worry about aswell. I know my advice is very difficult, and i understand your point of view entirely. One thing i would like to say is in regards to your point on carbs. If you're a mother with CFS and worrying about kids, you need more calories(carbs) than anyone else. If you're sub 2k calories a day and you're under so much stress that is going to hinder you ability to handle stress, let alone recovery. I would just like to mention that most of my calories come from carbs (bananas, potatoes, sweet potatoes etc). I also don't eat meat. I put aside my beliefs at one point which was very difficult for me and had a few weeks of eating meat. My body didn't react negatively however I didn't feel i was getting anything I was missing from it.
I'm sorry if I've made out that you're at fault. Of course your not. there are people out there that eat nothing but shit, get hammered at the weekend and still feel better than us. I suffered cystic acne for many years whilst eating a far healthier diet than any of my friends.. yet they had perfect skin. It's unfair but suffering for so many years I've had no choice but to do what I've done. I didn't want to live anymore, so living this way is easier in comparison to the severe depression i've previously felt.

P.s. I would recommend anyone to see a chiropractor to be check over for muscle knots, tense muscles etc. Even if it's for one appointment. I think that's something that would be helpful and is possible under your circumstances?

 

[ukxmrv]

I wonder if more younger people recover (at least in my experience from belonging to support groups etc) is that there is family support through finances and personal care? Their parents support them and there aren't the problems some adult PWCFS face.

Just reading Justy's post reminds me how many adults there are with ME struggling by themselves with no one to cook, shop etc and maybe with young children to look after.

 

[james7a]

I just wanted to add something else that I do not want to talk about in my videos incase my mother ever watched them and that is during my parents divorce in 2010 my mum later developed a mental illness(2012~). If she I ever saw me write this she would kick me out, hence the reason why I wont be saying it in a video. That was the most painful experience I've ever had and it made my cfs far worse. I would wake up in the middle of the night to her talking to voices, I would wake up to her slamming the door under my bedroom repeatadly (shaking my room). She would scream in the garden at the nieghbours beliving they were plotting agaisnt her. My body was fried from stress and was in a constant wired state. She believed I was working with the CIA to keep tabs on her on some occasions. She isn't currently living at the same address as me, which added to my recovery. My CFS was at its worst during this time, I started developing all the POTS symptoms etc. I might delete the post later on if i don't feel comfortable sharing the information, i hope you will understand

@ukxmrv yes I would agree. i didn't have to worry about food money which was a relief. I didn't have a very support family unit other than that.

 

[justy]

Hey James - so sorry to hear about the stress from your mother's health problems - im sure that would really not help. I also had a long period of very wired symptoms that would be unbearable and caused constant anxiety for about 3 -4 years. My startle reflex was so severe that even my husband breathing at night set it off on every breath he took - it was appaling. Mine was set off by a severe reaction to an SSRI antidepressant given by my doctor who was under the mistaken belief that M.E (I do not have CFS) is some kind of mental illness. At the time my family life was great and I was the happiest I had ever been with lots to look forward to.

I have seen a chiropractor many times in the past - unfortunately while the treatment initially helped with my anxiety initially it eventually caused severe pain and crashes that lasted weeks so I stopped (he was a very good chiro, just I am sensitive).

Anecdoatlly, like @ukxmrv I ALSO NOTICE A LOT OF YOUNG PEOPLE ON FORUMS WHO RECOVER - WHICH IS GREAT (oops sorry caps lock not shouting)- they also seem to be mainly young men.

Would also like to mention that I have Bartonella and Chlamydia pneumonia that are messing with my immune system - cant imagine I am going to get any improvement until I can treat them. For now though my Mast Cell issues are precluding any medical treatment.

You mentioned weight lifting earlier, which is great to do when you are well enough as I believe that kind of exercise, rather than something like say an aerobics class is great for building mito energy. Dr Myhill has stuff about 'the right kind of exercise' for people who are at or very near recovery on her webpage.

http://www.drmyhill.co.uk/wiki/exercise_-_the_right_sort

 

[james7a]

I can relate so much to your startle reflex.. I was like a scared mouse for years.

Yeah justy, I took onboard what people have said about not pushing it(xrunner, snowleopard etc) and I've decided to replace the running with just walking. But I will keep the weight lifting in, I want to lose this excess weight and I am not doing it through diet because that always ends up failing. thanks for the replies! in regards to chiropractor justy, did he push down on muscle knots or did he only do the neck clicking etc?

 

[justy]

He was a McTimony chiro so they do something quite unique! I also cannot tolerate any kind of massage - it makes me really ill for weeks afterwards and CAUSES pain that wasn't there - so I have learnt to leave well alone for now. I have reflexology sometimes which is really lovely and relaxing, but even that has to be gentle and 'subclinical' as she calls it for me.

 

[EtherSpin]

In my Misc video for people that can not watch them I state that I changed everything down to:
wearing no perfumes or deodarants. (I had 2 lumps under my armpit from blocked lymph nodes which is a really bad sign)
Playing no video games
watching no intense television shows or movies (watching very easy to watch programs like family guy instead)
because I noticed these hindered my bodies ability to be calm. Video games/movies/tv shows that were intense kept my body in the 'wired' state I was in for years.

I can recommend grand designs for uncontroversial, mildly pleasant and at times fascinating entertainment - nothing horrible to get the adrenaline going , just people working on their dream homes. I do play games of late ( I used to not allow myself that because i believed I didnt deserve to spend a penny on any indulgence for myself now that I wasnt earning a wage for my wife and 2 kids) but got a nintendo for it so i can be resting on the couch and so that by virtue of the platform there are plenty of non violent , innocuously themed games of a slow pace.

 

[EtherSpin]

I imagine that many of the interventions you mention would help greatly in supporting a tired adrenal system and in many other ways - perhaps allowing your body to fight Lyme by getting it in an optimal state? (you mention a tick bite). I know some of Dr Myhills patients have recovered to a large degree by the kinds of intervention you mention.

For me I imagine that this kind of lifestyle would mean I would have to leave my family, live alone and pay for a full time carer to cook for me etc. I have a family, children, am too ill to spend a lot of time sorting out food, also on a very low family income - at times I just have to eat whatever is in the house that I can eat quickly and easily. Right now am trying low histamine diet as my mast cells are over active, I have also been diagnosed with EDS type III recently and neither of these issues can be cured with lifestyle changes im afraid. (other than the low histamine diet, hwicch isn't a cure, but slightly controlling symptoms)


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This is not to judge anyone here - I just find this advice depressing for me personally.

I can relate, recent EDS diagnosis (and my first born child as well ) but not type III ( borderline classic, hard for specialist to tell at moment) two young children, in Australia with only my meagre disability pension to keep us fed and clothed etc - Im going to try to incorporate whatever I can from James though, whatever it is should help,taken on slowly and without incurring extra stress - I hope you get some form of extra help from where you didnt expect it, something to take a load off.. we recently started getting help from local council, 5 dollars for a once fortnightly clean of all our floors and one bathroom - big help. all the best to you

 

[justy]

My husbands pretty good, does nearly all the housework and works and runs kids around and takes them out, attends school events without me if needs be etc.

The issue is if you have family and kids, you cant keep nice and calm all the time - daily life is too full to allow that. My kids have homework to help with, exam pressure, their own illnesses to take care of, Drs appts, haircutting appts, friendship problems, school issues, bickering among themselves, disagreeing with me about things I think they should do. I have a dog that runs off regularly and comes back always covered in mud - then have to argue with the kids about who's going to wash him! They have friends come over - 4 tonight for a dance rehearsal! I also have two grown up children who are always ringing me up with things they need support with - they cant pay there rent, their girlfriend left them, they didn't get the job, my daughter is also sick and recently had a serious lung infection - she was ringing me up in the middle of the night crying and needing her mum. Then my husband drove a 10 hour round trip to go and get her and bring her here to be looked after - by me. I had to take her to the Dr's (I cant usually take myself, but you push yourself for your kids)then I had to make sure she took her medication 4 times a day, made her food (she couldn't get out of bed) kept her company even though talking was exhausting me, this went on for three weeks recently.

I challenge anyone to stay calm and not tax their adrenals when they have 4 children to think about and a mother showing signs of dementia and all the other things that normal life entails for middle aged people.

And yet despite all this I am one of the calmest and happiest people I know.

 

[james7a]

I hope things work out for you justy, you have alot of your plate despite having cfs. good luck

 

[justy]

Thanks James - got a bit ranty there - not at you though!

Good luck to all of us on our journeys, however we decide to get there.

 

[allyann]

@james7a I am a lot better too when I minimise my stress. I have downsized my house, and moved to a quiet country town. My stress revolves around family. I can relate to @justy, especially around stress of daily family life. I have a 3 yo son with Autism and I worry a lot about him, too much in truth, but I would say a lot of that is being a mum. It predisposes you to feeling you need to do everything right to bring your children up right. How I reduce that stress I am still working out.

 

[james7a]

@allyann I've had dreams of having a child of my own and in those dreams i amsick with worry. I can't imagen how it is for you. Defiantly don't limit your calories is all I can think of, sorry ! good luck

 

[allyann]

Haha, my Endocrine specialist suggests Coffee, Chocolate and salt to help my POTS symptoms lol. It does work for me. My brain fog lifts slightly after coffee, and I faint less when I increase the salt in my diet. I have always eaten relatively preservative and additive free. I eat bread made without bread improver, lactose free milk, fresh veggies from my garden and meat direct from an old fashioned butcher. If I start eating junk, or in particular anything with Soy lectin in it, my symptoms are considerably worse. Interestingly my son is allergic to egg and soy so we don't have much of that in our diet. I also make my own chocolate, as I haven't been able to find a commercial brand that doesn't have soy.

 

[maddietod]

Haha, my Endocrine specialist suggests Coffee, Chocolate and salt to help my POTS symptoms lol. It does work for me. My brain fog lifts slightly after coffee, and I faint less when I increase the salt in my diet. I have always eaten relatively preservative and additive free. I eat bread made without bread improver, lactose free milk, fresh veggies from my garden and meat direct from an old fashioned butcher. If I start eating junk, or in particular anything with Soy lectin in it, my symptoms are considerably worse. Interestingly my son is allergic to egg and soy so we don't have much of that in our diet. I also make my own chocolate, as I haven't been able to find a commercial brand that doesn't have soy.

http://www.vitacost.com/green-blacks-organic-dark-chocolate-85-3-5-oz-4 This is what I eat.

 

[allyann]

Yes @madietodd, I have had that one for my son. It was a bit too bitter for him. When I make my own I add peppermint oil to it and it is really yummy

 

[brenda]

@james7a 's method has been mine. I came to the realization that my body could heal itself, if only I removed the things that are stopping it. I did not have to spend thousands on a doctor or on supplements. The doctors moreover, would only be giving me antibiotics or anti virrals, neither of which would prevent a further decline in health at a later date, if I did not fix the terrain. I also knew that those sort of treatments were out of the question for me due to being so fragile after many many years of sickness (since early childhood worsened each time I had an environmental assault) and being a universal reactor..

The basis of the healing I believe is gluten dairy and sugar free, but as James has said, this is only the beginning and cannot be thought of as the one thing that will heal us. As well as these things, I also believe that stimulates are important to exclude and that means caffeine and alcohol and perhaps what we watch and read. Once we have a basis of a clean diet and enough clean water (organic and filtered water) and have the confidence that our own bodies have the intelligence to guide us, we can build up from there. I have also excluded many other things that I believed were not good for me.

One thing to overcome I believe, is the seeking outside of ourselves for help and especially for medical help. If we are young and have not been sick for too long, and have enough money, then perhaps medical help will be successful. This has not been an option for me. But now I am pleased that I have had to do it myself and not just rid myself of my present illness, but get down to the root of it and bring about deep healing.

Now at 65 years of age, my body is healing and I have gone from not being able to take supplements to being able to tolerate them. Selective ones that is and mainly b vitamins. However, I believe that I will be be needing them less as I have begun diatomaceous earth which scrubs the digestive tract so that we can absorb better. I am sleeping at night and improving in energy all of the time, even though i have not recovered like james yet. It will take me a few years I think. So I can confirm that James' methods do work and not just for the young or those who have not been sick for too long.

My diet includes superfoods in a dried form and I soak seeds grain and nuts before eating them. I am not perfect, my social isolation puts a great deal of stress on me and leaves one in a worse position I think than when one is living with family and not coping alone. I sometimes eat something that is not good for me like home made chocolate from raw organic ingredients sweetened with coconut nectar but that is not often.

Justy I am sorry for your situation where your children are not pulling their weight through understanding just how sick their mother is, and if you do not make them understand and be willing to give up their foreign holidays and whatever else, and support your healing, then who else can?

 

[Misfit Toy]

I agree with @justy. I have said this before but back in 2001 I did A yeast free diet and eliminated sugar wheat and gluten and even milk. I started eating goats milk yogurt and I started feeling better. I took 100 mg of Diflucan every day. It wasn't a cure, I was still sick but I was feeling so much better. My head was clear.

I started working, I wrote for a newspaper about health issues, and I worked at Pottery Barn. I had a social life and I was able to get out and have a good time. Part of me was coming back to life.

Then I went to the dentist and he needed to remove an amalgam and it cracked and I swallowed half of it. He didn't use a dental dam. After that I became deathly ill. I continue to try the diet that I was on with no luck. Everything I had worked for had going up in smoke. I was convinced it was due to my amalgams in my mouth and having swallowed that amalgam.

I bought a juicer I started juicing, I continue to take yeast medication and eat well. It was like the floor had dropped out from underneath me. The very tooth that the amalgam was removed out of, I lost. Over a two-year. I had all my amalgams removed I did chlorella and I was so into detoxing to the point of detoxing too much and I felt no better. Today it's showing I have no mercury in my system, or very little mercury so that is not the issue.

It was awful. So, I changed my diet, I felt better and then this incident happened and I went right back down.

I don't feel that the underlying issue is our diet. I feel that our diet can help our situation but something caused this problem for all of us. And it wasn't our diet. Our immune system is at fault.

I am right now on an anti-sugar diet. I've been off of gluten for two years because I have Celiac and I don't drink milk.

Many people here know what I have going on, but after developing CFS or ME I've developed EDS.

I'm giving up sugar, I gave up gluten, and I gave up milk a while ago and only because I have such bad pain that I'm hoping giving up sugar will help me. I will soon find out.

To me there is no cure with diet with this thing for "me." I just want some relief and if I get any difference, I'll be so thrilled. And like Justy, I have so many reactions to supplements medicines and just everything. It's crazy.

The hardest part is all the food preparation like you said Justy. I can't just go out and order a big Mac. I have to go somewhere with just salads and it becomes quite boring. And all of the food preparation is exhausting.

 

[justy]

I came to the realization that my body could heal itself, if only I removed the things that are stopping it

I am sorry but I have to disagree that this can and will help all people with M.E. I spent many years eating super healthily, meditating, yoga, affirmations, courses, retreats, no chemicals in my environment -I even trained as a healer. None of this stopped me from having a really severe relapse 7 years ago that I have never recovered from.

One thing to overcome I believe, is the seeking outside of ourselves for help and especially for medical help.

I have a real illness, not a lifestyle problem and there is no reason why I shouldn't seek expert medical care, nothing I have done for myself in the past 7 years, diet, meditation, de stress, cleaning out my environment scrupulously has made any difference to my health - I have only got worse. It is these kind of statements that I object to - people with AIDS aren't told to stop seeking medical care and take responsibility for curing themselves by changing their lifestyles and I don't see why I should be continuously bombarded with this message either.

Justy I am sorry for your situation where your children are not pulling their weight through understanding just how sick their mother is, and if you do not make them understand and be willing to give up their foreign holidays and whatever else, and support your healing, then who else can?

I'm sorry Brenda if I gave a false impression of my family situation. My children are all lovely human beings and great kids doing the best they can in a difficult world. They understand my situation perfectly well - my eldest daughter has been very ill herself, at one point being bedbound and missing the last year if school. I didn't mention foreign holidays - we are going to Belgium for me and my daughter to see my M.E doctor.

I was trying to present what normal family life is like with 4 children! I am lucky that I have such great children, and a loving husband to look after me. I feel so sorry for them that their lives have been so blighted by my illness - my youngest daughter doesn't remember me being well and i cant take her out for shopping trips or to the cinema or to the beach or just to walk the dog. My husband has to come everywhere with us to push my wheelchair and drive us and he has a lot on his plate with a full time job!

 

[james7a]

I would just like to clarify that I do not believe a restrictive diet is the cure for CFS. I believe it is just the foundation to build upon toward recovery. @Misfit Toy that's awful, I actually said earlier in this thread about urging people to be careful when seeking a dentist to remove fillings as i've heard similar stories before. I hope you get remission again