CFS specialist says I'm dangerously malnourished

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Apr 19, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    former title of thread: seeing CFS specialist tomorrow

    Seeing the CFS specialist tomorrow. I think it's for the exam. It will be my fourth wheelchair ride. I'll have to bring a blanket. Last time I was so exhausted that I couldn't keep warm even with every blanket in the place on me.

    I'm trying not to worry...

    I'm trying not to think about it at all. I don't know what will happen. All I can really count on for sure is emotional shocks, physical stress, and maybe a cheap joke or two so that I can have the pleasure of seeing someone else laugh.

    I'm also going to be removing some pills from my regimen (read, pill crate) and adding some new ones.

    Didn't someone say, "the only thing you can take for granted is that things change"? Wanted to let you know what's going on for me. I'm not going to go on about how sick it made me to go out last time. It might not happen that way this time. I'm just going to try to eat enough and get some sleep if I can. I've been stressed this week, so I've been staying up for 27 hours at a time, then sleeping for 12. I'm almost used to it by now too.

    I've already bathed and made arrangements to get a ride to the appointment. My dad's going to be out of town for a few days, so it will be quieter around the house when I get back. And I can ask my brothers to help cook for me if I need them to. I'll even have a few candy bars around for the bleaker moments, if I get them. Exhaustion makes me depressed. The sense of loss after having a trip out and returning to being housebound is hard to handle.

    Well, here's hoping something good will come of all this. I wish the doctor's office had a dollar store in the building so I could buy some new junk just for the heck of it. I miss having new junk around.
    (( )) Shannon
    [This Message was Edited on 04/20/2006]
  2. kholmes

    kholmes New Member

    Wear some thick, warm socks; that'll keep you warmer.

    In the past year, I've become more assertive about telling doctors and nurses I needed to lie down. It can be very uncomfortable, sitting up on one of those metallic doctor's examining tables, or even in the chairs in a doctor's office. So don't be afraid to insist on what you need, when you need it!

    I hope that the CFS specialist will be very helpful for you!

    Kholmes

  3. JenniferAnn539

    JenniferAnn539 New Member

    Shannon,

    Please let us know how your appointment goes:)

    Wishing you the best.

    Jennifer
  4. darude

    darude New Member

    Good luck on your docs appointment and let us know how it goes. I dread them too but have to go next Tuesday as I have been having vision problems. ALso I need my THIRD MRI!!!! Anyway keep warm and the way I think about it is if anything goes wrong at least I'm in docs office. Thinking about you Love
    Annie the Londoner
  5. alaska3355

    alaska3355 New Member

    Please let us know how the appointment goes...we'll be waiting! Love, Terri
  6. Shannonsparkles

    Shannonsparkles New Member

    :) You are all so wonderful!!

    The doctor I saw is a CFS specialist. She's been sick with CFS herself, but has improved enough to go back to work. Last time I saw her, she got me my disabled parking pass and my wheelchair. She had a special quiet room for her patients to lie down in while they wait.

    She's going to help me get AISH (some sort of income from the government, I think that is). I just have to send for the papers to start with.

    While I was lying down in the waiting room, I dozed for awhile. Then as I turned over, I bumped the blinds, and the sun broke through. Then it occured to me, "hey, this is a window!" So I pushed the blinds aside and got to look down into the street. All sorts of people were walking out there. There were teenagers, people riding bikes, men on rollerblades, an old couple, businesspeople... It was wonderful. I got to see what they were wearing and how they walked. I love being with people. Every sight is a miracle when you've been housebound this long.

    Finally I got to have my appointment. It was shorter than I expected. I could barely talk. Earlier in the day I had collapsed in the kitchen and had to lie down for 45 minutes on the linoleum without being able to get up, or even to make myself crawl to the carpet where I would be warmer. I managed to get up and get dressed and go for the appointment. But, even with using the wheelchair and having a doze in the waiting room, I was still too tired to talk much. So we kept it short.

    I should also mention that in the specialist's office, she has two long, comfortable leather couches for patients to lie on.

    The project of the day was food. She told me that if I do a certain diet program (among other things) she feels sure that she can help me to eventually get well enough to work part time.

    I said with relief, "Great, because I really don't think I could take another 50 years of living like this!"

    "You're not going to make it to 50 at this rate." She broke it to me that there is no way I'm going to live to be 50 if I don't change the way I'm eating. I'm not getting enough protein, or even enough food, period.

    "It's not that I don't believe you," I said slowly, "but are you saying this dying thing just to motivate me to eat better? Or could I really be dying?"

    She said she was glad I asked that, and that she really is serrious about it. She says that my body is shutting down. My autonomic nervous system is malfunctioning. Even a virus could kill me at this point, I'm so weak - I might not even live long enough to die of malnutrition!

    I was looking right into her eyes right then. Probably her eyes at that moment will always be a part of me from now on. She looked dead serrious, and totally steady. Then she told me that she has another patient who IS dying simply from malnutrition right now, and she's in her 40s.

    "I'll be 24 next month," I mumbled dreamilly.
    [This Message was Edited on 04/21/2006]
  7. Shannonsparkles

    Shannonsparkles New Member

    Sorry, still in shock. Had to stop there for a minute.

    When I got home, I played "County Roads, take me home" over and over on the guitar. I have kind of a crush on John Denver. I don't care that he's old and died and married, I still think he's cute.

    My brother's going to help me with my food. I really am too weak to cook anymore. I've been eating less and less. I didn't even notice it. You just get to a point where you don't get as hungry as you would, and you're too tired to get up and eat anyway. I'm not anorexic, I'm 145 pounds at 5'7"... But I eat a lot of oil and butter, so maybe that's where getting enough calories to maintain my weight, or my metabolism's slowed down or something.

    I am NOT NOT NOT NOT NOT NOT (!!!!!!) going to die of malnutrition!!!!!!!!!!! This is CANADA, for gosh sakes!!! There's food at every cornerstore! It would be too ironic!!!!!!!!

    Please say a prayer for me tonight, if you want to. (( ))

    I wish I could just stay in denial, like usual. Even today, when I had to lie down on the floor and couldn't get up, or when I can't make my mouth move to talk and can't even have the muscle strength to open a pill jar on my own, I think, 'oh, that's my CFS' and I forget about it. And my memory's so bad that it actually works.

    Please say a prayer, if you want to, that I will be able to do this new diet, whatever it will be (the next three weeks I'm just supposed to write out what I'm eating and what I can and can't have), and to not give up on myself. I can't die this way. I'm going to need to make a lot of changes... something involving a scale for protein, and keeping records.

    As sure as she was that I will die of malnutrition, she was also just as sure that I can get fairly well if I change how I'm eating. I have to remember that. Then when I'm better, I can take some courses and get that part time job. Then I can go for a walk and hold doors open for people. Then (if I actually have it in me) I can write a book or something.

    I'm just going to go ahead and eat whatever the heck I want tonight. I said something about being restricted by the food combining rules, and the specialist said that I'm so sick that I shouldn't even be thinking about that, just try out what works and what doesn't work. No WONDER I feel better on the days when I fudge on my diet and eat extra stuff and foods I wouldn't normally eat. I just need food.

    I know I sound like a wreck now. Trust me, by the time I'm done writing, I'll be too worn out to feel anything anymore, I hope. But I am NOT going to die of malnutrition. It would be too ironic.

    I'm writing up a shopping list for my brother tonight. I'm going to go through the grocery store flyer and write down whatever appeals to me.

    Thank you for being here with me. No one else could understand this but my fellow PWC and PFMS.
    ((love you)) Shannon
  8. sues1

    sues1 New Member

    I am sure the doctor meant....the right kind of foods........healthy foods.......rarely eat Junk Food....

    It is so easy to eat wrong and to eat junk food with our problems.

    We hardly have the strength to cook and junk food satifisys
    hunger and makes us feel good....but it is not good for us.

    You need protine, vitamins, lots of veggies and fruits..

    Maybe if someone made you a covered bowl or plate of food and left it in the refrig. you could heat it in the microwave. I doubt that you could get meals on wheels, but that sort of thing is supposed to be balanced meals.....

    Please find a way to eat better type foods......

    Good Luck, sending you prayers and blessings...Susan
  9. darude

    darude New Member

    Oh mi this is serious. who is your doc? I was on a waiting list but gave up. She sounds good tho. Aish is good it's currently $1000.oo a month. I don't qualify at the moment but will try later. If you need extra help with that I have a great lady who is at all the meetings and will help you in more ways than one. Keep in touch bless you. Annie the Londoner.
  10. lease79

    lease79 New Member

    ~*Gentle Hugs*~ sweet, I understand about the not eating. I bounce, some days I don't eat much & others I eat alot. It depends on how I feel, the reflux & what's available in my cupboard, but doesn't need any preparation.
    I eat at least 1 TV dinner a week.
    Really hope that this specialist & what she said will help with a new start & have you on the road to recovery.

    Lisa
  11. ilovepink4

    ilovepink4 Member

    for someone who is so exhuasted, you sure write well...and expressively....i think you should srite a book because you write so descriptively! and even though you feel crappy, you still write alot and interestingly....so for pete's sake, eat something so we all can continue to enjoy your posts....even if they are about bad stuff, you catch people's attention with your sriting style!
  12. Shannonsparkles

    Shannonsparkles New Member

    I always thought I was eating plenty, and I do stay away from junk food pretty well.

    Now that I go over my food journal, it seems that I'm eating small portions a few hours apart. I can't eat very much before I feel full, and for some reason, meat grosses me out. With that and not being able to cook, I've pretty much fallen back on whey protein, goat milk, dried fruit, and the occasional steamed vegetable.

    I've been counting things like half a cucumber or a glass of goatmilk as a meal, and then not eating again for hours. I just didn't get that hungry, and I felt satisfied with what I had. And with my memory problems and being alone and housebound, I didn't notice anything strange about it. A glass of goat milk for dinner was just normal. NOW it seems strange!

    Think how much more I could eat if I didn't have to cook it! One of our members said that she can either cook or eat - no energy to do both.

    I wonder too if maybe I'm not totally digesting what I eat? I do take digestive enzymes... Can I really be doing so badly on what I'm eating now?

    For the next few weeks, the plan is to try to eat more protein and get my brother to cook for me when he can. But he's 20 years old and, while lovable and sincere, he's not very reliable, so I wonder if that will work very well. Also, I would like to find some kind of prepared food (frozen, canned) that I can just heat up for when I'm alone. If you have any good recipes, or know a brand of food that is fairly healthy and additive-free, please contribute to my thread entitled, "simple protein recipes".

    I have to write down everything I am eating, how much it weighed, and the time I ate it, for a few weeks until I see the specialist again. Then she'll (I think) come up with some kind of plan for me, once she knows what I can and can't have. I have a lot of food sensitivities, and even I don't really know what I can and can't eat.

    The specialist I'm seeing is Dr. Beverly Thompkins, here in Calgary. I should have had to wait 1 1/2 to 2 years to see her. But there was a cancellation, and I was the only person they called who could come in on short notice, and that's how I got in to see her sooner. Annie, if you call the local CFS/FM society, they can give you Dr. Thompkins' phone number... or you could look up the "Burke Institute" in the phone book; that's where she works. Then you can get your GP to reffer you.

    You ever notice how doctors tend to leave you too stunned to ask good questions? Oh well. Even if she had explained things more at the time, I still wouldn't get it. The cognitive symptoms are so bad that I feel like I've been whacked over the head with a fish whacker (a sort of rubber club used to stun fish) 24/7.

    I asked, what should I eat? But she didn't know what I can eat, so she couldn't say. She did say there wasn't enough "quality protein," i.e. something that had feet, fins, feathers in a former life. And my friend, who also sees her, has been instructed to eat a certain ammount of protein every two hours. So I'll try to focus my efforts there. I need some recipes though, and some prepared foods to make this work. I hope some of the board members will have good ideas for me (they always have good ideas!).

    And, 'why?' would have been a good question. I'm still foggy on how this happened. I thought that if I ate enough to not feel hungry and if I got some protein and a vegetable in per day, I was doing fine. Do I really need to eat when I'm not hungry? I wonder if it's like how most people are somewhat dehydrated and they don't feel thirsty.

    (((okay, where's the grub???))) Shannon
  13. windblade

    windblade Active Member

    I just came from your other post with your extremely beautiful and moving poem on it. Then, coming here was so shocked to hear what your Dr. said.

    Even, if your brother is 20, he is very capable of helping you! we're talking about your life here! Please keep asking for his help while your strength builds up. It's absolutely crucial that you receive that help.

    I think your appetite will build up as you eat more. And your strength! I was seriously malnourished when I became sick with CFS and went for days without eating anything. But after a Dr.'s report had to use every ounce of energy to eat - and I slowly built up strength and went from being bedridden to being up and around.

    You have a real writing gift, Shannon! I am so looking forward to what you will be doing with it!!!

    Praying for you pronto! Lots of love sent to you.

    Will think of ideas for your protein thread, hon. Every little bite that you take will make you that much healthier.

    Thank God you got that cancellation! And when you're ready to apply for the income assistance, how wonderful that will be!

    Many blessings sent to you!
  14. Jordane

    Jordane New Member

    This DD has really taken its toll on you.But I understand what your going thru.My doctor told me that I was anorexic,and she also put it on her medical sent to CPPDisability.I have been here before!
    But you NEED to eat,even if your not hungry.Take a banana,has lots of protein,crackers with peanut butter,cheese whiz.Ask your brother to put some of these beside your bed,Have a little spot beside you so you can munch off and on.Those little packets of crackers/chese/or peanut butter,come in handy.And some good juice with lots of vitamins,in the little juice packs.
    Start with the small pkgs,like what kids take to school.Work your way up to more portions.Use a smaller plate,so the food does'nt look so overwhelming to you.My daughter started that for me,so the amounts of food on my plate wouldnt be so scary.:>)
    And yes even here in Canada we can get malnutrition!
    Take Care,
    Hope the suggestions from all these nice people help.
    gentle hugs
    Jordane
  15. Smiffy

    Smiffy Member

    Sending you a great big hug.

    Can someone buy you some meal supplement invalid drinks that you can mix up with milk yourself when there's no-one to cook for you? I don't know what they're called in your country, here they're called 'Complan'.

    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  16. mme_curie68

    mme_curie68 New Member

    My gosh, I am so sorry to hear you struggling so badly.

    You need a major infusion of protein.

    Get powdered milk, and add it to everything - your yogurt, etc. - it's another way to pack in extra nutrients.

    Hard boiled eggs - can make dozens in one go and then put in fridge to snack on.

    Part-skim mozzarella "string cheese" good protein.

    Get prepared chicken breast meat chunks at the store, another good source of quick protein.

    My favorite is apples with peanut butter. Buy a 5 dollar apple corer and all you have to do is wash and the corer takes care of the rest.

    Nuts and seeds are good also. Dry roasted unsalted peanuts.

    My nutrition changes (from prepared foods to fresh cooked) has made a big difference...

    I eat about 100 cal every hour up until 2 hours before bed, to keep my metabolism constantly working. This has helped me start losing weight again.

    You need to keep what you have and prevent muscle atrophy. Prolonged bed rest causes your muscles to break down.

    It sounds like you also need physical therapy to help arrest the progression of your weakness - did the doc sign you up to do this? Can you ask her to? Where you are so disabled at this point, I am sure you qualify for home visits. I would hope that its easier to get in Canada than here in the states.

    Keep us posted. I'll be praying for you.

    Hugs,
    Madame Curie

  17. RockiAZ

    RockiAZ New Member

    I know that I don't know you personally, but I just want to let you know that you are in my heart and thoughts - I admire your strength.

    To be so young and have to go through so very much is disheartening to me. Fear not, as you have the support of all of us here and I am sure of that!

    Take good care - gentle hugs to you!

    Live, Laugh, Love,
    Rocki
  18. UnicornK

    UnicornK New Member

    My heart goes out to you. Has your doctor done any blood tests to find out what you're difficient in? After having gastric bypass, I have to get these tests a couple of times a year. I take tons of vitamins and supplements. I pray that you will find what it takes to get more nourishment.
  19. starmom

    starmom New Member

    Shannon,

    Get someone to pick up some balance bars or zone bars or toher protein bars that are not low calorie. Most stores here contain them.

    I am too tired to eat a lot of hte time, but I know these make a huge difference in how I feel. When I am really tired I forget to eat, so having htese around and visible helps.

    Hugs,

    Susie
  20. MamaR

    MamaR New Member

    Sweet Girl....you will get stronger every day! I have read most of your posts. Please listen to the doctors. You have so much to offer....a beautiful summer lies ahead!

    Eat and get stronger....avoid any sick people until you are stronger.


    Love and prayers....Mari