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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Not liking myself

Discussion in 'Lifestyle Management' started by jules78, Mar 19, 2014.

  1. jules78

    jules78

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    I've been bed bound now for a few months now. Before I got this I was very active, and was doing boxing classes and circuit training and dancing a lot.

    I was trying to get fit and also lose some of the weight I had regained over the previous year.

    Now because I'm inactive I have gained weight I've noticed, especially round my midriff area.

    I want to start trying to lose weight but I'm a bit stuck as to how.
    One because my fifteen year old daughter cooks for me of an evening. So I need to make sure the dishes are simple to make.

    But also I tend to be flat out in bed all day until my children return from school. Then I wake for a short while. I haven't the strength nor energy to get out of bed to make food.

    Sometimes I am that exhausted and weak I can't even reach out to get my drink on the bedside table beside me.

    Does anyone please have any suggestions of how I can start to try to lose some weight. One person suggested putting a little fridge in my room, which sounds like a good plan. As things will be closer to hand.

    I'm just wondering what types of quick, easy things I can have in the daytime, that don't require much effort

    My stomach is bloated so much. I have had ibs since I was 18 and knew what foods not to eat. But it seems like since getting this, everything I eat gives me a bad stomach.

    I've read you can develop food allergies, but I'm at a loss as to where to start. Because it seems everything is causing nasty bowel movements. Though some are far worse than others.

    Just feeling Fed up, fat and frumpy. I used to be pretty, and want to feel pretty again.

    Most of my trouble right now is come the evenings or weekends, I'm eating food that's no good for me like chocolate. But it's hard because right now it feels like....

    Food is the only pleasure I have in my life. I guess that stems from me feeling like my life's been taken away. I've only had this about nine months or so now.

    So am still adjusting x
  2. Martial

    Martial Senior Member

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    Have you gotten testing yet to see what could be the underlying issue? From before it looked like you had very lyme like symptoms, or possibly mold toxicity, mentioning nervous system and involuntary body movements. If you have Lyme or Mold Mycotoxins you would want to treat that ASAP. Also it may help to find what amount of your symptoms stem from POTS, and what else could be M.E. if you have it, or fatigue from another illness.. If you have POTS being bed ridden can make a vicious cycle and a further decline in autonomic dysfunction. Even raising the bed head by 6 inches, and trying to stay standing for more and more time can be helpful, as well as compression clothing. If you have an underlying infection you would need proper blood flow for the immune system to get to all the nooks and crannies of the body, using albium to clear out any viral, bacterial, or fungul pathogens.

    As far as diet just alter it to match the reduced activity levels, you will not be eating the same amount of food you did when having normal activity levels or it will lead to weight gain..

    Maybe try a GAPS, or modified Paleo Diet? Many options out there

    here is a great site for nutritional info!

    I linked one of the best article series on it btw.

    http://chriskresser.com/perfect-health
  3. Kati

    Kati Patient in training

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    Hi @jules78 I have lost weight using the My Fitness Pal app-it's keeping track of the calories you ingest. I used to be very fit as well and I have gained indecent amount of weight over the last 5years. some of it i can attribute to disease, inflammation, hormonal imbalance etc, and some of it is eating over what my body needs.

    I do not follow recommendation from the app in deciding how many calories I eat, but I went straight to 1200 calories per day. not being able to move much it just felt right to me. i was hungry the first couple of weeks but resorted to veggies (carrots and celery) at night when I ran out of calories.

    i have lost 45 lbs so far. The weight loss has pretty much stopped now, but I hope that things will change sometimes when my body is up for it.

    Also note that I have been diagnosed as hypothyroid, something I knew would happen, I was the poster child for it, something my dr refused to see, and getting started on Synthroid has certainly helped my weight loss.

    Best of luck and should you decide to join Myfitness pal, I am certainly willing to be friends for mutual support.
  4. jules78

    jules78

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    Hi @Martial

    Thanks a lot for all your advice. To be honest my doctors not bothered to test me for anything.

    After six months of my going back and forth to him and having two sets of blood tests come back normal. He's just referred me to the CFS Clinic.

    I was only saying to my dad last night that I think I should see a different doctor. As the one I've seen doesn't appear to be that helpful.

    From having small muscular jerks which weren't bothersome, to now having more stronger frequent ones tells me. That somethings going on inside of me.

    Yesterday was the first time I had one in my sleep and it woke me.

    Sorry to sound thick but what does POTS stand for?

    Thanks for the site link. I will take a look at that :)
  5. jules78

    jules78

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    Hi @Kati , thank you so much for that :)

    I will definitely take a look at that. And look out for you on it.

    And congratulations on your weight loss. 45lbs is an incredible loss :)
  6. jules78

    jules78

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    @Martial

    I have just read up on mold mycotoxins. As had never heard of this before. It was an interesting read.

    I have been exposed to mould in the past, though not vastly. But I had issues for a long time with a rental washing machine, which had a lot of mould in the seal and drawer.

    I cleaned it a number of times, but wasn't very successful in keeping it away. So in the end I brought myself a new machine.

    I'm not saying this is the cause of my symptoms, but it opens your eyes up
  7. Martial

    Martial Senior Member

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    ortho static intolerance. Here is a link on it.

    http://www.cfids.org/about-cfids/orthostatic-intolerance.asp

    Also that sounds like there is definitely something irritating your nervous system, you should definitely get an appt with an LLMD and describe your situation and see if they can run testing.. LLMD is a lyme literate Medical Doctor, Myco toxicity perfectly mirrors both lyme disease and Chronic Fatigue Syndrome. Dr. Shoemaker has a great protocol and info on mold toxins and even removal of other bio toxins like Lyme disease, Cyano bacteria, Dinoflaggelates, and many other things. Check out the site

    http://www.survivingmold.com/
  8. Esther12

    Esther12 Senior Member

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    I'm really hesitant about giving diet advice, as it seems to me that people are oftne quite different, and that there's not much good evidence for a lot of the guidance people give... but you did ask!

    I'd try totally cutting all the really unhealthy stuff (desserts, etc), and try to eat more fruit and veg instead. Currently the only sweet stuff I really have is 85% chocolate... which isn't that sweet, and is intense enough to be satisfying after a small amount. It does seem like there's recently been greater emphasis on the role of sugar in leading to people gaining weight... this could mean I was right all along, or could mean we're reaching the point where it's revealed that all the evidence of sugar causing problems was dodgy.

    I find that when I'm feeling a bit sick sweeter stuff seems gentler on my stomach, so cutting it out can be hard if you're feeling like that a lot. Things like rice cakes with just peanut butter can be a handy snack for if you feel a bit sick?

    Best of luck with everything.
  9. jules78

    jules78

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    Thanks @Martial I will take a look.

    My pulse reading just now at rest in bed was 60bpm, I stood up and stood very still on the spot and for about the first minute or just under there was no change.

    Then all of a sudden it started climbing quickly...... I let it get to 82, as needed to sit down. I'm not sure what the end reading would have been. Is this normal for our pulse to climb rapidly like that, when laying to standing?
  10. brenda

    brenda Senior Member

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    The thing that helps me with weight control, is to have my main meal at lunchtime, so l am not really hungry for the rest of the day and often only need a few oat cakes or something similar in the evening. Before this when l only had a snack at lunchtime, by the evening meal, it seemed like l could go on and on, eating. How you could do this with being unable to cook at lunchtime l don't quite know, but maybe you could get someone in from a social services assessment?
  11. jules78

    jules78

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    Thanks @Esther12 for all your advice. It's much appreciate. I will definitely get a fruit bowl beside my bed now. And look for alternative healthy snacks. I do like rice cakes :)

    And I'm sure my daughter could prepare a salad the night before for my lunch.

    I've just got to stop using food as a comfort x
  12. jules78

    jules78

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    Thanks @brenda I do think that's probably why I'm craving the sugar stuff so much. Because my body's being starved during the day. Not every day, but more often than not.

    My dad did say I should contact social.services to see if they can offer any help.

    My housing officer is coming to see me next week as she said she would like to get involved, and get some help and support in place for me.
  13. jules78

    jules78

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    I'm just not used to having help. Have been raising my three children on my own for the past 13 years now.

    So that's just yet another thing to get used to, not being completely independent :)
  14. Mr. Cat

    Mr. Cat Senior Member

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    Hi Jules,

    I know there are many factors involved, including body type, metabolism, food sensitivities, and your personal CFS symptoms, etc., but I have found that several of the things I am doing to manage my CFS have also indirectly contributed to keeping weight off effortlessly. Bear in mind that I exercise about as much as the average CFS person, meaning not much at all.

    1) Paleo diet - not much different from the Atkins and South Beach diets, which people used to lose weight when they were all the rage.
    2) L-Carnitine - part of the B12 protocol. Not sure of the specifics on exactly how it works. I take it for more brain energy, but I think this energy comes from burning fat in the body.
    3) MCT oil - Another concoction I use for brain energy. MCT oil (from coconut oil) is another substance to boost energy, but has also been touted as a weight loss agent. I have been mixing 16oz MCT oil to 12oz coconut oil (which I found to be more effective than straight MCT oil), and having 1tbsp 3x/day, with food. Again, not sure of the specifics, but it seems to be another substance that helps convert fat to energy.

    In terms of L-Carnitine and MCT oil, I could actually feel a change to my metabolism soon after starting to use them, so that fat just doesn't stick to me anymore. Instead, I think it is being burned to fuel my poor, tired CFS brain. Win-win if you want to lose weight and have more mind energy.

    Lose weight with CFS!
  15. Kati

    Kati Patient in training

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    Hey Jules, thanks, i have much more to go, but I just wanted to say it's possible, even if you can't cook all that much. I usually cook once every 10 days. Usually soup that I put in the blender, with all the good veggies in it. All I need to add is proteins, usually rotisserie chicken or fish. And chili, with lots of veggies. In the end it's about planning your meals and keeping track of the quantities, at least for me.

    As an aside people ask me if i feel better having lost some weight. I say no. i am still sick with ME and it sucks. But I like myself a bit more.
    beaker likes this.
  16. Valentijn

    Valentijn Activity Level: 3

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    @jules78 - Have you tried magnesium? It can help with muscle twitching and spasming. But best to avoid magnesium oxide or magnesium chelate forms, unless you're really constipated :p
    jules78 likes this.
  17. brenda

    brenda Senior Member

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    When you contact them you are asked a set of questions about your condition then they make an appointment to come out to make a fuller assessment. Mine is coming next week. Maybe someone here who has been assessed can give some tips to us both?
    jules78, merylg and Valentijn like this.
  18. peggy-sue

    peggy-sue

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    Sadly, Jules is unlikely to be able to find any "lyme literate" doctor in the uk.

    Jules, I've managed to loose about 3 stones - slowly over about 3 years. But I'm a bit odd when it comes to food.
    I only eat once a day, at night.

    If I eat earlier - all that happens is I get hungrier and hungrier and eat more and more. If I don't eat, I don't get hungry until later.
    The "diet" I have always used is something along the lines of the so-called 5:2 diet now.

    I just have a couple of days a week where I eat very few calories, appproximately 500.

    The easiest meal to make for that (for me) is to get half a pot of decent vegetable soup (I use a roasted red pepper one) and add a load of extra veggies from the freezer, spice it up a bit with some chilli and paprika, and poach an egg in it.
    I have that with a bit of wholemeal multigrain bread, but I'm a bread addict.

    (I actually now poach the egg in the microwave and pop it on top of the soup, rather than poach it, in it.)

    Sort of a "soup piperade". :) It's very tasty, and very filling.
    Soup is the best thing for staying feeling full for longer.


    I had put the weight on after going on an SSRI. I found loosing it made life an awful lot easier - I don't have to waste energy carrying it around any more.

    If I get desperate for something sweet, or for biscuits, I use dark chocolate (I can only get 81%), or oatcakes.

    I find oatcakes to be very satisfying, they do fill you up.
    They are full of soluble fibre, they will slow down the passage of any fructose in your food through your gut and let the bacteria in your gut deal with it, rather than your body having to.:thumbsup:

    The problem, I believe, with rice cakes is that they are actually very hight GI. They won't fill you up, but will cause a sugar spike.o_O

    Low GI stuff is better and satisfying for much longer, even if it does have "more calories".

    Distraction is one way of trying to cope with the boredom. Can you play computer games at all?
    Even just simple ones such as the Solitaire card games (my level of computer game literacy), occupy all your attention and help to stop you "attending" to how lousy you feel or how hungry you are.

    It's not easy, Jules, is it? :hug:
    merylg likes this.
  19. peggy-sue

    peggy-sue

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    :redface:

    I have just noticed I have launched into recommending a meal stuffed full of insoluble fibre - which is not likely to be any good for somebody with bloating and a ton of IBS stuff. :cry:

    More rocks and hard places. :(
    Insoluble fibre is a great way of filling yourself up when you want to loose weight.

    Do you like yoghurt? The zero fat ones have been found to help weight loss, when included in a calorie restricted diet.

    Two groups were tested - both on the same number of calories, but one group included 0% fat yoghurt in their calorie load while the other didn't.
    The group who ate the yoghurt lost more weight.

    I am not sure what the reasoning behind this could be or what theory might have been proposed, but personally, I wonder if it has an effect on the amount of bile in the body.

    Bile levels in a body are generally fairly fixed - the amount of bile is related to the amount of fat in the diet.

    The body recycles all it's bile.

    A reduced fat intake will result in the amount of bile in the body being slowly reduced too, so that a sudden increase in fat intake is something the body cannot deal with.

    An increasing amount of fat in the diet will result in an increase the amount of bile.

    I feel quite strongly that this could well be behind the "addictive" properties of a very high fat diet. (ie, junk food)

    Sorry to have been so useless, Jules. You're in a horrible place - but it's not your fault, and you have no reason whatsoever not to like yourself!

    You've done your absolute best for your kids, despite difficulties, they clearly do not blame you for being ill, why do you?:p
    Valentijn likes this.
  20. jules78

    jules78

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    Thank you so much @peggy-sue . I will make a note of those. Tomorrow I'm starting a no gluten and dairy diet. And have got a big bowl of fruit on my bedside table, for me to snack on if I get hungry.

    I brought some As I guess a lot of it is going to be process of eliminations. Until I find out what food groups are the culprits.

    And your so right it's not easy. If only I could lose weight as fast as I put it on :rofl:
    peggy-sue likes this.

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