Na Na pinches her pennies (aka frugal living)

Shh… don't tell anyone I'm poor. They all think I'm living frugal and green just like everyone these days. This is a blog about a senior citizen living a frugal life, on a fixed income, in a low income food desert, and passing along knowledge from lessons learned. Some she learned from her Grandma Mama many years ago and some learned only a few days ago.

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Right after the new babies were born I got sick and was down for several days.  I just barley got out of bed to drink something, take some tylenol, go to the bathroom, and crawl back under the cover.  Even with my bed warmer on high, covered with three flannel sheets and two quilts, and warm weather, I constantly shivered.  My head hurt and my body ached.  My throat was sore and I coughed a lot.  I haven’t been that sick in quite a long time.  I did too much when I was babysitting.

I’ve never explained this before but I have Chronic Fatigue Syndrome/Myalgic Encephalomyelitis or CFS/ME for short.  No one knows what causes this illness or how to cure it but it affects millions of people.  In the 1980s this illness was called “post exercise malaise” or “Yuppie flu” because it showed up mostly in people who had gym memberships and exercised regularly.  Which I did.  Many doctors believed our illness was imaginary because as everyone knows, exercise is supposed to be good for us.

Some medical records mention this illness way back to the 1700s and its had several names.  The first name I heard was the post exercise malaise but then the name was changed to “chronic fatigue syndrome” or CFS.  The disease is now Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.  Its had so many names because the doctors and scientists who understand that it is a real illness can’t agree on a name.  They can’t even agree if its an illness or a disease or a birth defect.

The hardest thing to do is explain about this illness to other people.  About how exercise makes us very sick with the flu.  The more strenuous the activity the worse the flu.  Its hard to explain because everyone has heard how exercise can improve your health.  Exercising is so well known that often a well meaning person will suggest to a CFS/ME suffer that they should probably exercise more but start out slowly so they’ll soon feel better.  I can’t count the number of times I was told by some well meaning nurse practitioner, who had no clue about the illness, that I just needed to get more sleep or to take vitamins or to start exercising to feel better.  AGRrrrr!  Seriously? I guess you would also tell a diabetic to eat more carbs and sugary deserts to feel better.  Or maybe you would tell a peanut allergy person to eat a few peanuts to feel better.  Geeze!  Exercise is the worst thing for a CFS/ME sufferer.  Who in their right mind would deliberately create conditions to make theirself sick?

Since exercise has the opposite effect on a CFS/ME person its no wonder that people without it don’t understand.  The best way I can describe how I feel is to suggest you remember the worst ever case of flu that you can remember and think about how it wore you out just getting out of bed to walk down the hall.   Now imagine having a permanent case of that flu.  That’s what exertion does to me – it wears me out and makes me feel horrible.  Getting the flu after exercise is a tough symptom to wrap your head around even when your’re the one experiencing it.

For me, an episode can be triggered by what seems like very minor physical activity to everyone else.  Simple walking should be good exercise.  Right?  Well, a casual thirty minute walk can put me in bed sick for a couple of days.  I chauffeur my SIL for her once a month grocery shopping day.  Grocery day used to be a dreaded task for me.  Not because of my SIL but because of the illness after a day of walking.  Thank goodness many stores now have rest benches in them.  I’ve learned my limits and plan for lots of rest stops over the day but it still takes three or four days to fully recover from a shopping trip.  My current episode of illness is the result of babysitting the grands when my daughter had her baby.  A one year old and a three year old can be a handful.

I haven’t been this sick for this long in over two years.  Symptoms come and go for me.  I have flare ups and remissions which is another reason its so confusing to understand this illness.  Usually people think of an illness as either controlled or cured so they don’t understand how CFS/ME persons can be up and active one day (or minute) and bedridden sick the next.  A simple way of explaining it is that my immune system is stuck in overdrive and there is no way to power it down.

As I get older the episodes are farther apart but last much longer.  The episodes sure make it difficult to stay on schedule to get work done.  Which is the major reason I refuse to do any deadline quilting work anymore.  I never know when an episode will flare up or how long it will last.  I can’t make promises I may not be able to keep.

Now that my illness is back in remission I’ve completely lost track of my quilting waiting list and my healthy eating.  I had more brain fog with this episode than usual.  I’ll have to refresh my memory a little before going on.  If anyone emailed me to be put on my waiting list but you don’t see your name please email me again.  I’ll get back to the frugal stuff this weekend too.

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24 comments on “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

  1. T
    April 16, 2017

    Anywhere else in the world making profit from the sick or dying would be seen as distasteful except by a handful of greedy corrupt people…and yet those ;socialist’ doctors overseas all earn a good living, enjoy high social status and manage to retain strong moral positions on their profession being fundamentally to assist others and not manipulate the human condition to generate obscene wealth.

    People are brainwashed in America which is why so many people get sick in the first place: simple, less-stress, healthful living isn’t part of the program!

    I do think there are doctors who will diagnose *anything* to keep the patient and profit returning, and illnesses like ME and fibromyalgia and even depression are easy to place on a spectrum. So those of us who really do struggle with a chronic syndrome ( whatever we call it ) will find ourselves compared to someone who says they are very ill but next week is off water-skiing…what I mean is it’s hard to get taken seriously when some people adopt a label inappropriately, or doctors apply it inappropriately.

    I have had no faith in doctors for a long time, it seems a pseudo-science to me medicine, but where the plutocrats run society and make policy people are definitely taught lack of self-awareness and fear, and that a pill cures all rather than a lifestyle change benefits and may prevent illness in the first place.

    Like you I could write a book Anita!

    And I have seen every politician who comes along to ‘reform’ healthcare in the US so far fail to do so. I believe it simply can’t be done- the healthcare, pharmaceutical and hospital industries even whilst complaining about the impact of ‘obamacare’ made record profits. Says it all.

    Hope you feel better soon.

    • Anita
      April 16, 2017

      Yup, the very same people who create the chemical laden foods we eat are the same ones who make the pills we take so our body can continue to eat the chemical foods. The very same people who sell us food that make us fat are the ones who sell us diet foods that don’t work. All these people are the top 1 percent and want to control the world’s food supply. Its my opinion that the loudest complaints about the affordable care act are coming from the health care/insurance industry. There is no profit in affordable health care when its for the sick, poor, and elderly. That’s why the insurance industry wants it trashed so much. They don’t want to be forced to cover anyone except the healthy and wealthy young people. The original plan for affordable care, by Ted Kennedy, was to make the USA healthcare system like that of Canada but it failed too. As long at the lobbyists rule DC and president Bannon we are not going to gain anything.

      I’m feeling a lot better, thanks.

  2. KAYTHEGARDENER
    April 15, 2017

    Dear Na-Na,
    I wish that I lived closer to you, so I could help put in your new garden…
    Sounds like you have had a lot on your plate!
    But family comes first!!
    Rest easy, KMC

    • Anita
      April 16, 2017

      I sure wish you lived closer too. I would love the help. Its a shame there are no organizations of volunteers willing to help seniors create a backyard garden spot. It would go a long way toward ending senior hunger and quite a bit of loneliness too. Maybe I should just get a couple of tomato plants in pots and forget the rest.

  3. Emma
    April 15, 2017

    Sorry to hear this, Anita. There’s nothing worse than being ill. Take it easy and hope you feel better soon.

    • Anita
      April 16, 2017

      I’m feeling much better now Emma.

  4. Donna
    April 15, 2017

    Poor Anita! You have really had a case of what I call the “Green Weanie! Hee hee. Just my nickname for crap that happens. Hope you are back up to par (whatever the load bears) soon. My best friend has something like what you have so we always have to play it by ear when we plan an outing. Sometimes I get a call that she is not up to it and we reschedule. It is tough when you never know how you are going to feel. Rest well for a while.

    • Anita
      April 16, 2017

      It sure makes planning a futile activity. She sure has a good friend in you to be so tolerant.

  5. Jane
    April 15, 2017

    I’m so sorry to hear about this, Anita. I’ve had no major illness since I was 10 years old, and it is difficult to understand. I’m glad that you explained it so well. I hope the babies are doing well, and their grandma/nana is soon able to enjoy them again. Best wishes,
    Jane

    • Anita
      April 16, 2017

      Thanks Jane, both babies are doing really well. Raylynn is gaining weight and holding her own.

  6. Margie in Toronto
    April 15, 2017

    So sorry to hear that you haven’t been feeling well. You have had a lot on your plate these past few months and the difficulties with the births and trying to help your family has certainly taken it’s toll.
    I do empathize as I have suffered from RA and fibromyalgia (similar symptoms to CFS) for the past 20 years. I’m allergic to NSAIDS and can only take steroids to relieve inflammation – but since these have some nasty side effects, I try to avoid them as much as possible.
    I understand your reaction to exercise – and everyone reacts differently and you will certainly know your limits. When my rheumatologist told me that I would have to exercise I thought she was crazy. She explained that yes, it would hurt to start but I would have to take it gradually – walk to the end of the driveway and back each day for a week – then to the end of the street (a short street) and then around the corner – build up very, very slowly and if I had too much pain the next day then to back off a bit and start again. It took a long time but it has helped. But I have had to learn to pace myself – and if I feel a flareup coming on then I really cut back and rest as much as possible. It can be frustrating but I have learned to be careful.
    I’m not quite sure what your medical insurance covers – here in Canada I see a rheumatologist at least once a year, I’ve seen a physiotherapist and had massage therapy (all covered) and I’ve even seen a dietician to learn to eat well and to lose weight (which has taken some pressure off my joints). I also find that heat helps.
    I hope you have the time now to rest and recover and that this flareup doesn’t last too long. Take care of yourself.

    • Anita
      April 15, 2017

      Who knows what the future of health care in the USA will be. With that mentally ill person in the white house our future is a roll of the dice. Will he or won’t he type bets. Our whole country is being reversed over a hundred years. But that’s a whole different rant.

      I see an endocrinologist every three months but only because its required. *I* am in charge of my own health. I stopped listening to the so called professional and took charge of my own health. I don’t trust anyone in the medical field, which includes dieticians, to actually care about me. For them its money, for me its life or death. There is no profit in making people healthy. Which is why I stopped listening to the professionals and changed my health by myself.

      • Margie in Toronto
        April 15, 2017

        I can understand your frustration and you have done a wonderful job in taking charge of your own health – I don’t know how I would cope if I was at the mercy of the US system. I feel very lucky, in a having a wonderful and very proactive GP and access to such wonderful care.
        I had knee surgery a couple of weeks ago, could have had it done a month earlier if I hadn’t been so busy, arrived at the hospital at 11am and was home by 4:45pm! Had wonderful care the whole day, a follow up appt. that I only waited 15 minutes past my booked time for and more follow up in a couple of months – and none of it or the X-rays or the MRI that I needed pre-op cost me a dime.
        I hope you feel a bit better day by day.

        • Anita
          April 16, 2017

          The very first affordable care plan written by Senator Ted Kennedy was to be just like the plan in Canada but it failed because of the health insurance lobbyists. No politician wants to loose their campaign finance so the insurance companies win.

  7. Jasna
    April 14, 2017

    You were missed, Anita. I´m so glad you are back! ((( HUGS)))

    • Anita
      April 16, 2017

      Thanks Jasna.

  8. Leslie Saunders
    April 14, 2017

    I will pray for you this Easter weekend. Make yourself the number one priority for now.

    • Anita
      April 16, 2017

      Thank you Leslie.

  9. Nini
    April 14, 2017

    I am sorry that you are struggling right now. I can truly say that I can relate because I also suffer from that along with fibromyalgia and an unspecified auto immune disorders. It’s not fun. Gentle hugs being sent your way

    • Anita
      April 16, 2017

      Hugs back to you. What do you take for pain relief? Is there anything you do to help prevent an episode that I might try?

      • Nini
        April 17, 2017

        Nothing works for me over the counter. I’m not interested in anything prescription due to high possibility of addiction and how it would affect my performance at work. I use electric heated blankets, yes even in summertime. I also use COPPER FIXX PAIN RELIEF CREAM (Walgreens) . Sometimes I’ll take my muscle relaxers if I know it’s going to be bad. I’ve found that taking care of myself, resting when needed, sleeping when my body tells me to, and saying NO a little more often helps keep things manageable….most days. I have found that extreme stress and physical demands on my body will send me into a flare. Life doesn’t always dictate that I avoid those but…I try not to invite it into my life. 😁 I have also adopted a PALEO lifestyle which has helped tremendously with my levels of inflammation. I hope this helped

        • Anita
          April 18, 2017

          Yes it does, thank you. I haven’t gone PALEO but I have stopped eating factory processed foods with chemical ingredients. Its hard to strictly follow any type of diet when I depend on food banks. I rest a lot more often these days too.

  10. Nancy Lotzer
    April 14, 2017

    Please take care. I’ve missed your posts but your health is very important so take care of it first. Sending you good wishes.

    • Anita
      April 16, 2017

      Thank you for staying with me.

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