trapped in bed by my HR …

Yes, I know … heart rate, anaerobic threshold, etc etc etc … again!

I realise that if you are a regular fragmented.ME blog reader, you may have noticed that I have previously written about anaerobic threshold (AT) and using my FitBit as a heart rate (HR) monitor, and that I allude to these in many of my other blog posts too.

This is because it’s very important in the lives of those with severe energy limitations and so we come back to it often as the only real way to manage our illness and symptoms.

It may therefore seem, to a non sufferer, like I’m covering old ground with the following post.

However, firstly when you have severe ME and PEM every day it’s an ongoing issue, the high heart rate, the pacing and the PEM.

Secondly, the two previous blog posts respectively discussed the scientific, and the personal and practical side of the anaerobic threshold. Reading those prior to reading this one will give the details in this post more depth of meaning but is not necessary. These two blog posts can be read by going to ‘anaerobic threshold & ME …’ and ‘adrenaline & ME …’.

Nevertheless, in the following blog post I am going to discuss entirely different information from an entirely different perspective.

I will look at how, when I pay attention to my FitBit heart rate notifications, I will regularly find myself trapped in bed but not with major symptoms. Yet, when I ignore my HR I will still find myself in bed, but with major PEM and ME symptoms and always migraine as part of it.

In the following, I will address what that means for me in the real world.

t r a p p e d i n b e d b y m y
h e a r t r a t e

useful definitions for understanding the blog …

HR:
the speed at which the heart beats.

Action for ME : pacing:
Pacing is a self-management tool. It is a technique to help you take control of the balance of activity and rest, and learn how to communicate to other people about the balance that usually works best for you.

adrenaline:
a hormone secreted by the adrenal glands that increases rates of blood circulation, breathing, and carbohydrate metabolism and prepares muscles for exertion.

CDC : post exertional malaise (PEM):
Post exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing).

aerobic:
Aerobic means ‘with air’ and refers to the body producing energy with the use of oxygen. This typically involves any exercise that lasts longer than two minutes in duration. Continuous ‘steady state’ exercise is performed aerobically.

anaerobic:
Anaerobic means ‘without air’ and refers to the body producing energy without oxygen. This is typically exercise that is performed at a higher intensity. There are two ways that the body can produce energy anaerobically.

anaerobic threshold:
Lactate inflection point (LIP), is the exercise intensity at which the blood concentration of lactate and / or lactic acid begins to increase rapidly. It is often expressed as 85% of maximum heart rate or 75% of maximum oxygen intake. When exercising at or below the lactate threshold, any lactate produced by the muscles is removed by the body without it building up.

work out your AT:
most people with ME/CFS have an AT that is usually 50-60% of healthy people, use this formula to estimate your own AT:
(220 – age) * 0.6 = estimated AT
(If you are more severely ill, use 50% or 0.5 instead of 0.6)
Alternatively, women can try:
(220 – (age * .88)) * 0.6 = estimated AT
(Or if severely ill, use 0.5 instead of 0.6)

background …

Based on these calculations my AT is : 84 … So I set my HR monitor to vibrate at 81 giving me time to stop what I’m doing before it reaches AT. In reality this never happens because my heart rate continues to rise, sometimes for minutes, after I stop. The device I use is not that sensitive and so I always reach AT even with that leeway.

doing things I want to do …

In an ideal world, or situation, I would love to be able to just get up and out of bed, like I used to, without giving any thought to my heart rate, or other physical symptoms, especially those I get when I choose to ignore my heart rate level.

I can’t tell you how much I want to be able to …

go back to the way I used to be …

to wake up and not even have to think too much about my illness …

it feels like it rules my life right now …

and that’s because it does …

ME rules my life and my thoughts …

Think about all the things you do without even thinking. Imagine not being able to do those things without pain or without getting more severe symptoms and being so exhausted that you can’t even contemplate pushing yourself.

Imagine how different your life might be.

doing things that are necessary …

Now imagine a little bit deeper. Can you imagine not being able to do even the necessary things you need to do.

Things like bathing, cooking, eating, cleaning, laundry, food shopping, medical appointments. Basic things that might be done every single day without giving it a second thought.

Imagine what it might be like, what it might feel like, not being able to do them.

A person with ME, even at the mild end, cannot do anything without thought. They have to assess the impact of every single activity.

When the ME is severe then they may not even be able to do anything for themselves without getting much sicker.

I have severe ME.

personal care …

There are so many aspects of my personal care that I have had to forgo. Not just because of my AT, though I don’t doubt these would increase my symptoms and take me into and above my AT exponentially, but simply because I feel too poorly, too exhausted, in the here and now, to do them. There are days when I am that tired (exhausted) that I cannot even lift my arms.

These personal care aspects include, but are not limited to: bathing / showering; washing my hair more than once every ten days; I never style my hair any more, ever; I don’t go to the beauty salon for hair cuts or other beauty treatments nor do I get professional treatments or hair cuts at home; I don’t have the energy to get dressed daily; or wear makeup. These are some of the things I used to do and would love to be able to do again.

On a more personal level there are things that I feel I must still do for myself. Because on a psychological level I feel that I cannot yet allow someone to do them for me even though on a physical level I am sick enough to warrant this.

I will list some of them with their impacting and corresponding average heart rate.

- brushing my teeth : HR 115 – 155
- brushing my hair : HR 125 – 145 (sat down)
- phone call to GP : HR 125+ (and for at least an hour after) (anxiety was horrific)
- change my PJs (every other day if I can) : HR 140+
- going to the dentist : HR 150+ (for over 10 hours of that day)
- having a bath and washing my hair : HR 150+ (for the duration and at least an hour afterwards)

So when, or if, I pay attention to these numbers it means that I can’t actually do anything for myself. I ought to be in bed full time. Yet, the self esteem I gain from doing these things has a psychological weight and balance that far outweighs PEM. For now it does anyway.

The dilemma though is real. Do I listen to my HR? Stay put, and allow someone else to take care of me personally. And see if I recover some. Because, on this one, there are no guarantees. I’ve never done it, so I have no idea how my body will respond.

The guilt, and embarrassment, will surely have an impact, which might balance out or be equal to the PEM brought on by doing it myself.

What an awful dilemma to have. How do I decide? Or do I wait till the decision is made for me? Until I can no longer do anything for myself …

eating …

Firstly, I must point out that I don’t do any cooking, or shopping, my husband, who is also my carer, does both of these.

Eating, digesting, and feeling guilty really raises my heart rate.

Eating because I have to sit up. Digesting, because it takes huge amounts of energy to digest food. Guilt, because I always feel guilty around food times at my lack of help in preparing, cooking, and cleaning up.

- making simple very easy food : HR 130+
- eating light food : HR 90+
- eating heavy food or too much food : HR 150+ (for prolonged periods of time)

I do now allow my husband to shop and cook. I don’t really have a choice as to eating and digesting but I have limited the kinds of foods and how much food I eat. This helps immensely but feels so restrictive when I just fancy something that I think, or know, has a negative effect on my HR and ultimately my health.

The only option available here is being tube fed. Something that I don’t ever want. I love my real food. Plus, I can digest food still, I just have to limit to foods I can digest or deal with lots of digestive issues and HR increases.

I’m definitely hanging on to this to the very end.

home …

Although my husband does a weekly clean and we have a robot hoover too, I still feel as though I have to do things about the house. Things that are expected of me or that I feel I can’t ask for help with …

- making the bed (if the husband is out or busy working from home when I get up) : HR 150+
- putting my washing on : HR 120+
- hanging my washing on the maiden : HR 135+
- folding my washing (mainly my husband does this for me while he is working from home, but sometimes I have to do it) : HR 150+ (depending how much folding there is)

You can see I don’t really do much in terms of housework. But the little I do has a severe impact on my HR and health.

If I could grapple with the guilt of leaving the bed and allowing someone to do my tiny bits of laundry, then I am sure I could let this one go.

I would be much more willing to change things in this area of my life than change things from the personal care and the eating areas.

coping with feelings …

So how do I cope.

How do I cope with the way living like this can make you feel.

I obviously have some very down days.

But mostly I’ve got this …

I do have several techniques I use, some which I really don’t recommend but I am trying to be real with you here.

Firstly, I push my feelings down. I stuff them way deep down inside of me and try not to let them surface, so that I don’t have to face myself. I pretend I’m not bothered by it and I appear to take it all in my stride.

Then WHAM … one day these feelings will surface and they will hit me square on and I cry and cry and cry …

At these times I’m amazed at how much pain there is spilling out.

I never knew I had so much pain inside me …

Secondly, and I’ve tried to stop this one so many times, but I think it’s a favourite. Don’t most women! I use retail therapy as a diversion by going online shopping and bargain hunting online.

The postman used to bring parcels galore every single day. At first, when I started buying lots of stuff, I would get a little buzz out of it but by the end I didn’t even want to open the parcels because I had no energy to sort out the packaging and find somewhere for them to go. And the smells of the packaging and inks were too much for my poorly body. Yes, it really got that bad.

I think that writing this website is actually a follow on from all that shopping, and it’s really just another diversion technique. But, at least it means I’m not spending money that I don’t actually have and I am raising awareness for this illness too.

I think if I didn’t do something, use my brain, or something else, then I would go mad. I really do struggle to just ‘be’ all the time. By nature, I am definitely a doing kind of person. Whereas, with this illness, you can really benefit health wise when you are more of a being kind of person. In this respect, the struggle is very real.

As diversions go, I’m guessing this is a safe way to deal with my illness. Journaling, can be cathartic and healing.

keeping my mind occupied …

This beautiful online space is what also keeps my mind occupied. And I do a lot of planning in my head. I plan and make lists of blog posts I may never be able to do, but I plan all the same and you maybe get very light versions of what I’d really like to write.

Another thing that I enjoy is reading.

I read, when I can. When I can’t read because I’m too poorly then I listen to audio books and audio dramas.

I also listen to plenty of podcasts too.

I can’t watch more than a couple of hours TV a day, sometimes none at all as it’s too stimulating in a way that makes my body even more poorly, unlike listening and reading.

I love music. I used to live for music. I do still listen to music. That said though, listening to music can sometimes be difficult too. This is probably because of too many things needing to be processed simultaneously.

Because of this and right now my ears can still cope with single voices and my eyes can sometimes take the words in and so I use them both as a means for keeping my mind occupied.

keeping my spirits up …

By nature I am a very hopeful person.

My paternal grandmother pointed this out to me when I was a young sick single parent. She said,

I am so proud of you …
I have never met anyone who has as much hope for the future despite their present situation …

Bless her … and bless me too … I can hardly remember that girl …

… hope …
… a feeling of expectation and desire …
… for a particular thing to happen …

As I re-read that beautiful definition of hope, I find the tears dropping from my eyes.

I don’t know if I have much hope left. I was 25 years of age and sick when my grandmother said the above. I am now 59, and still sick. Actually I am much sicker, and sadly not much has changed in the medical world of ME.

My hope has definitely faded … because the medical world has failed me …

in summary & in conclusion …

What a dilemma to have.

Do you stay in bed in order to stop your heart rate going into your anaerobic threshold and causing post exertional malaise or do you end up in bed because you ignore your heart rate and end up suffering with post exertional malaise …

Either way …

… you end up in bed …

a personal concluding note …

Personally, for now, I feel as though I have pulled back as much as I can cope with. To pull back any more would have an effect of its own, which I am sure would be equal to any PEM as a result of physical activity.

And so, I stay as I am.

In bed most of the time, regardless of the reason … be it because I’ve done too much or because I’m trying to stay within my energy ability … it is still bed … and I am still stuck in it …

Please feel free to contact me to share your outcomes or with any questions you may have.