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M.E is a Sin and What in Hell is Wheat Without Gluten

Our family got into an argument last night, but sadly, the subject is nothing new. My mother's disregard for my dad's M.E has always been apparent, at least within the last 5-7 years, but now with dad's condition gradually worsening before my very eyes, her disregard and his frustration has reached new levels.

He can easily be in bed for 12+ hours. She dislikes this. She seems to resent the rest he gets when she has to get up and do housework. She resents it when he goes to lay down during the day. If he is missing the day, or if it's late in the evening and there's still no sign of him, she will go upstairs and draw the curtains to say 'wakey wakey.' Or she will switch the light on and walk out again. For years, he has resented this. They have resented each other.

The argument last night, after she switched the light on to get him up, started with her commenting, 'I don't know how somebody could stay in bed that long without their body clock telling them to move. I could never lie there that long. My body would say, "What are you still doing here? Time to get uuup!" I don't know why his doesn't.' A comment she has made many times before. My dad replied, 'The clue is in the name: Chronic fatigue. People who don't have it have no idea what it feels like.' The argument turned to whether or not she knew what the fatigue felt like. She talked about her radiotherapy treatment in 2012 and how it was exhausting and she got no rest, yet had to come home to do housework, with no support. My father's retort: 'No support. We could have done the cooking and washing up no problem but your OCD doesn't allow anyone in the kitchen, "Don't touch that, no I'll do that," so they couldn't have done with your OCD. The fatigue then was temporary for 2 or 3 weeks, imagine having that every day for the rest of your life.'

It's an argument that ultimately gets nowhere, only becomes an argument that her stubborn inconsideration is a typical trait of Cancerians and she goes silent and no longer engages for the next few hours.

Sometimes I wonder what she'd think if I were diagnosed with M.E, which will never even be considered thanks to the black mark on my medical records.
FRUITCAKE.

In other news, as I can no longer eat those Genius pancakes that I despise every single day, I seem to be trying the only alternative I can find that is not a fibre bomb or filled with suspect ingredients: Schar waffles, gluten free but still wheat. ? Why has this gluten free brand with a great rep made waffles with wheat? Oh well, this is my unplanned opportunity to experiment with wheat, sans gluten, and test out my tolerance. I suspect oats and corn, so now I can watch wheat. Although, it's not the best time to be certain of the result... I'm already flaring, feeling like I've been abused in the night when I wake up in the morning, my muscles jolting a lot (I even did Thriller yesterday), and now my period showing up a week earlier than expected, which always causes gut pain the first 2-3 days.

Nothing can ever be simple, can it?

Comments

@PoorlyPixi
I love your blog. I love anything that's well written, well, almost anything, and you write really well. Great visuals, easy dialogue that rolls out like real life, just enough detail to set the table but not enough to get boring or self-centered, or worse, " ....poor, poor pitiful me...", generally the precursor to the Can You Bottom This game.

Just really, really, good.

Ah'll be bahhhk.
 
I don't know if it will help convince your mother, but I posted a link to Newatlas.com about a possible blood test for ME. Some people might disregard reports in professional medical journals, but might accept something reported in something targeted at the general public. Of course, some people won't change their minds regardless of the evidence...

https://newatlas.com/chronic-fatigue-blood-test-biomarker-stress-stanford/59461/
 
Oh dear @PoorlyPixi I am sorry to hear what's happening at home. Your mother is one of those fighters who keep fighting, and she can't understand why some can NOT get up again, through no fault of their own.
It's very hard for her to understand because she has never felt like that for a considerable period of time.
Kind thoughts to you and your Dad, bless him. At least he must get quite a lot of understanding from you. He will appreciate that, I am sure.

You have probably said anything you can to try to get through to your mother....and she won't listen, and can't understand.
She may be scared. Something with her family -maybe for which she feels responsibility -is falling apart, and she can't handle it or even just allow it to be.

But ME/CFS is never about feeling tired. Or even super-tired. It certainly is NOT about being wilfully lazy.
It is a deep exhaustion caused by some malfunction in the cells, that never goes away. Not only is it exhaustion, but it is continual cycles of relapses of a set of symptoms which are generally unpleasant.

But I suppose she doesn't wish to learn? Or is scared to?
Kind thoughts to her too. Hope she will understand one day and embrace those "imperfections."

You never know. My worst enemy is getting friendlier towards me with each passing day, as she grows older. I am amazed! If she can do that -then you never know what might happen next!

And I have never heard of wheat without gluten! There is "spelt" but that I don't think, is gluten-free.
But potato flour can make some really tasty gluten free things. I ate a potato flour cookie a couple of weeks ago and it was delicious.
 
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Also with feeling like a fruitcake, I just try to remember that no one knows which of my conditions came first. Mental>Physical or Physical>Mental.

I now truly believe it was the latter, that the physical issues caused the panic feelings, which also helps me not to condemn myself as a "Fruitcake" though I understand that it's difficult to get health professionals to see it that way especially since so many of them want to slot ME/CFS as a somatoform disease as well. :grumpy:

Hopefully sometime down the road that will change.
 
@PoorlyPixi
I love your blog. I love anything that's well written, well, almost anything, and you write really well. Great visuals, easy dialogue that rolls out like real life, just enough detail to set the table but not enough to get boring or self-centered, or worse, " ....poor, poor pitiful me...", generally the precursor to the Can You Bottom This game.

Just really, really, good.

Ah'll be bahhhk.

:rofl::redface: That's a lovely comment to receive, thank you very much! I know I missed my calling as a freelance journalist and/or novelist. Well that has made my day.
 
I don't know if it will help convince your mother, but I posted a link to Newatlas.com about a possible blood test for ME. Some people might disregard reports in professional medical journals, but might accept something reported in something targeted at the general public. Of course, some people won't change their minds regardless of the evidence...

https://newatlas.com/chronic-fatigue-blood-test-biomarker-stress-stanford/59461/
Thank you, that article is really interesting and I hope it means that more research is being done and the disease is getting the serious consideration it deserves (or more specifically, that the patients deserve). I wonder how long these studies take.

It'll be difficult getting her to read it as the subject of M.E is a bit taboo with her; she turns away and looks at her phone or laptop or does anything to pretend she's busy and unable to hear. She won't respond. I think the only way she'll ever listen is if a doctor considers that I might have it. Even then, what will she do? But I have the article saved and I plan to show it to my dad, too. Thank you.
 
Also with feeling like a fruitcake, I just try to remember that no one knows which of my conditions came first. Mental>Physical or Physical>Mental.

I now truly believe it was the latter, that the physical issues caused the panic feelings, which also helps me not to condemn myself as a "Fruitcake" though I understand that it's difficult to get health professionals to see it that way especially since so many of them want to slot ME/CFS as a somatoform disease as well. :grumpy:

Hopefully sometime down the road that will change.
When will the medical profession actually learn that we are NOT divided down the middle with an iron rule.
And that, in fact, we are sensitive complete beings made up of mental/emotional things and physical things, all inter-connected.
They are quick to label something "psychosomatic" so why can't they also see it the other way around? That illness does have an effect on how we FEEL??
 
Oh dear @PoorlyPixi I am sorry to hear what's happening at home. Your mother is one of those fighters who keep fighting, and she can't understand why some can NOT get up again, through no fault of their own.
It's very hard for her to understand because she has never felt like that for a considerable period of time.
Kind thoughts to you and your Dad, bless him. At least he must get quite a lot of understanding from you. He will appreciate that, I am sure.

You have probably said anything you can to try to get through to your mother....and she won't listen, and can't understand.
She may be scared. Something with her family -maybe for which she feels responsibility -is falling apart, and she can't handle it or even just allow it to be.

But ME/CFS is never about feeling tired. Or even super-tired. It certainly is NOT about being wilfully lazy.
It is a deep exhaustion caused by some malfunction in the cells, that never goes away. Not only is it exhaustion, but it is continual cycles of relapses of a set of symptoms which are generally unpleasant.

But I suppose she doesn't wish to learn? Or is scared to?
Kind thoughts to her too. Hope she will understand one day and embrace those "imperfections."

You never know. My worst enemy is getting friendlier towards me with each passing day, as she grows older. I am amazed! If she can do that -then you never know what might happen next!

And I have never heard of wheat without gluten! There is "spelt" but that I don't think, is gluten-free.
But potato flour can make some really tasty gluten free things. I ate a potato flour cookie a couple of weeks ago and it was delicious.

Thank you... It's been a problem here for years and my dad has often said that it's a problem shared by many people with M.E/CFS... He doesn't browse forums or websites anymore and hasn't for many years, but he used to say that a lot of people posted about their lack of support on these forums, sharing their experiences of family members not understanding them and resenting them. This must be no surprise to anyone reading. He wants her to watch Unrest, but she would never! It's hard to know what her reasoning is.

With the fatigue, I have to admit - and I said this to my dad after the argument - that's the symptom that makes me question the possibility that I have M.E myself, because it seems to be the number 1 requirement to be diagnosed and without bone-crushing fatigue, it cannot be M.E. I am tired all the time but I don't believe it's fatigue most of the time. When what I describe as fatigue hits, it's usually a few hours before going to bed, and it's so intolerable to me that my mood dips, I talk slowly as though I'm depressed and fed up of speaking to people, and sometimes cry if it's particularly bad. Most of the time I don't have this.

I'm glad that she's coming around! Does this person have a history of not believing it's a real illness, and is now seeing what it can do? Or is it unrelated?

I hope for more documentaries like Unrest.

I'm gonna look out for potato flour because that sounds the safest bet!
 
When will the medical profession actually learn that we are NOT divided down the middle with an iron rule.
And that, in fact, we are sensitive complete beings made up of mental/emotional things and physical things, all inter-connected.
They are quick to label something "psychosomatic" so why can't they also see it the other way around? That illness does have an effect on how we FEEL??
Trying to multi-quote with Judee but it's not working even after refreshing the page and coming out and coming in again, so give up with that lol. I agree with all of this, 100 per cent. It makes perfect, logical sense that physical-mental-emotional are all connected, sometimes I get the impression that the medical profession thinks it has its roots in either or, and the circular connection is a hippie spiritual belief. Of course physical illness and a dysfunctional, struggling body will cause an emotional and psychological response.

With me though, I've been anxious since birth and grew up with anxiety disorders, all the while healthy until I suddenly lost my health at 21, so I think I was born a fruitcake so to speak and that has tarnished my medical records forevermore!

This all has me thinking though, but I'm going off on tangents. I had a very low appetite all throughout my teens which resulted in me being diagnosed with anorexia on the belief that I wanted to be thin because I thought I was ugly, even though I never liked being thin, thought if anything my tiny boyish body made me uglier, and even though I was a healthy weight from age 20 to 27, that misdiagnosis is a black stain on me forever. Noone hears my complaints of chronic reflux and vomiting acid and not even being able to drink enough because it feels like I'm filling up a bag. In regards to the low appetite that plagued my teens... is it possible that although I felt healthy, I actually had an underlying health problem that affected my appetite? Or, it's a very real possibility that my anxiety and sensitive nature suppressed my appetite, with no intention on my part, which I have said for 15 years now....
and no one has ever believed me.
 
Noone hears my complaints of chronic reflux and vomiting acid and not even being able to drink enough because it feels like I'm filling up a bag.
Hiya Pixi .....
You might want to check out one of Howard's threads, he's been dealing with the same issues for months now, and finally went to the ER (again) ..... this time he got lucky and they're testing and trying to treat. The gastroparesis re water is one of the maddening things he's been dealing with, along with the reflux problems, Here's a link:
https://forums.phoenixrising.me/thr...e-symptom-diagnosis.76022/page-6#post-2200682
 

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