How Did You Get Others to Understand That Activity Makes You Worse?

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Artist: Elizabeth D’Angelo

A Guide for People with ME Trying to Talk to People Without ME

From the wonderful members of #MEAction Living With ME Support Group for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

Glen Has a Question

I was told this today: “You need to get up and move around, even if you don’t feel like it.”

They meant well, but don’t realize what it does to me. I tried this approach many times over, and that is part of why I am this way today. I pushed myself and crashed many, many times.

I was ambitious, athletic, and in good shape before this. Now I’m at a point where the effort to open a new bottled water makes me feel nauseous and completely depleted.

I feel like everyone was telling me the stove was off. So, I touched it, but got burnt. They told me to try again. It burnt me again. I kept doing this knowing it was damaging me.

It is demoralizing and disconcerting to be told to do something that is harming you. Every time I hear that from friends or family it is bothers me immensely. It is exhausting and feels like you’re disappointing everyone.

My question is: How did you get others to understand that activity makes you feel worse?

Susan

I was sick for several years before I was diagnosed or learned about Post Exertional Malaise. I did a lot of damage during that time.

It’s hard enough to fight your own lifetime of habits and desires to do things, let alone with the pressure you get from other people and from doctors.

While I was researching doctors, I came across these instructions: Doctor Montoya’s Instructions: Please Do Not Overexert Yourself

 

Anita Roddam

I have very severe ME and the intermittent ability to speak.

Some people use the analogy that they are a battery which charges to 30 – 40%. I am a battery which charges to 0.5 – 3%.

Imagine this was your mobile phone, and you took it outside with you. You speak to your Mum quite clearly and intelligibly for several minutes. Then the battery would suddenly cut out…

You would then return home, unable to communicate whilst the battery recharged.  Absolutely all other applications and functions would also be impossible.

No matter how long you wait for your faulty battery to recharge, it will only ever reach 0.5 – 3%

Sometimes I can speak well and capably for a few minutes, then my energy is depleted and I’m unable to speak at all. Often unable to move.

Of note, and of great significance, is the fact that the most basic and essential activities of living (control of heart-rate, respiration, ingestion, digestion, elimination, thermoregulation, and maintenance of homeostasis) take a minimum of 40% battery charge.

I printed this out on a sheet of paper:

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JoAnn Greenberg

Many of us got this same wrong advice, or thought that we could just power through like we have always done. It doesn’t surprise me we got sicker until we stopped fighting it. The doctor who helped me get disability pointed out that most of his patients did not start to feel better until the process was over. 

You need to explain that it’s Post Exertional Malaise that affects you. This is now recognized as one of the definitions of ME/CFS. It means you can exercise, but afterwards you suffer severe consequences. You might also look at the spoon theory or share it with others.

I find mental work to be harder than physical. After I do any kind of mental work, I crash for a long nap.

Lisa

I think this happens because ME is a sister disease of fibromyalgia. With fibromyalgia, it is imperative that you move even if you don’t feel like it or your body will tighten up worse and become even more painful.

If you have both ME and fibro, its a lose-lose situation. You should be moving, but you physically can’t. Also you shouldn’t be moving, due to the ME.

If you have both, definitely listen to the ME more. That’s going to be the kicker.

I took friends and family to see Unrest and it really opened their eyes to my day-to-day. Jen Brea also does a fifteen-minute TED talk that is really powerful (scroll down to watch)

 

Christina Baltais

I’ve been on the receiving end of comments like that too. It hurts because it implies a lack of willpower or motivation.

If I’m up for it, I explain that a hallmark symptom of ME/CFS is Post Exertional Malaise. I give an analogy of a car whose gas tank is only filled 20% each day.

With any driving, you are left with nothing, bottomed out, fully depleted. That feeling of depletion lasts for days, sometimes weeks.

The hardest part too is not knowing whether a person is open to hearing about your experience and truly listening. I’ve given this explanation and have had even more hurtful comments said back. Its always a judgement call whether to expend energy to try and help others understand. 

Lily 

I had this problem for years! It’s only recently that I realized that I never really explained to people why I was not doing more physical activity. People who love and support me and wish the best for me would keep encouraging movement, while I would nod and give them a blank stare and sit still.

I don’t know what they thought. Probably that I was crazy, defeated, mysterious, or unreachable.

It’s taken me a long time to understand and figure out the language. It helped me to read other people’s stories and to start using words like “symptom” and “diagnosis” and “medical research has shown that…”

One of the key characteristics of my condition is that physical activity can make  symptoms worse. When I exert energy, this worsens my symptoms. It can take days to recover. Or weeks. Or years. This can happen even with mild activities, such as standing walking or stretching.

I was looking online for a link I could send people, but couldn’t find what I was looking for, so recently, I put together this post. Potential Dangers of Exercise and Activity for people with ME

I’m still working up the courage, timing, and diplomacy to print it out and share it with some of my well-meaning family members. In the meantime, at least it makes me feel better.

Robin

If someone suggests I exercise, I tell them that I already am, and then I explain how I practice pacing using a heart rate monitor to ensure that I stay under my anaerobic threshold, that I rest enough each day.

I explain that for me walking to the bathroom raises my heart rate and is exercise for me. I also explain that as I rest sufficiently, my capacity to do more activity and exercise increases. I detail my recumbent exercise program and how the amount that I can do is increasing, albeit very slowly.

In essence I reframe the concept exercise into what works for a person with severe ME/CFS. I think it is very important to make it clear that sufficient REST is what enables us to heal and to do more and that the amount of exercise and activity we can do can be guided by our physiological responses.

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13 thoughts on “How Did You Get Others to Understand That Activity Makes You Worse?”

  1. This is one of the things I love about heart rate pacing. It can be so obvious to everyone else, because they can see my monitor too.
    I also know my actual AT because I did a 2-day CPET, and I can hand my report over to anyone to read more.

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  2. I’m still waiting for them to understand. So I stopped talking about it. Only people who are chronicly ill understand. Period.

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  3. thank you. thank you so much for this article. it’s so hard… so hard. but for a moment it was nice to read this and get perspective and not feel alone or crazy. ❤

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  4. Terrific piece and Elizabeth’s artwork adds to the generous spirit, and to the words of our M.E. friends, and their heartfelt and articulate writing.

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  5. I’ve tried the battery analogy, spoons and even tried to made them understand with a wallet where money is taken out as needed and it doesn’t get more money til payday. If you borrow on next weeks pay, you have less to work with the next week. Not sure how no one gets it. My daughter had really bad morning sickness when she was pregnant and I told her, “Remember this feeling. I felt like that for the first 3 years and didn’t know what it was or if I’d get better”. That didn’t get any empathy either.

    I came up with this one recently… It’s like trying to pump up a tire that still has a leak. No matter how much air you put into it, it keeps deflating and never gets anywhere near full again. The energy used to try to keep it inflated wears you out.

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  6. I think the Canadian and International Consensus Criteria are incredibly useful tools. They collate the research on all the diagnostic symptoms, and show it in easy to see charts, graphs and explanations. Each has the first section on post-exertional malaise (PEM)/neuroimmune exhaustion (PENE), the cardinal symptom – where overdoing, which can be brushing your teeth or turning over in bed for the severe, harms all body systems. That the most important thing we can do is not overdo.The Canadian also specifically states that UK-style false-illness belief CBT and graded exercise(GET) are harmful and not to be done. THe US Primer also uses the Canadian for diagnosis.

    Canadian http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
    International http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

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