lördag 29 oktober 2016

Fear and avoidance or a desire for participation?

A cardinal symptom of ME/CFS is Post-Exertional Malaise (PEM):

When I talk about cardinal symptoms I mean the main symptoms that must be met for the diagnosis to be set.

For me PEM is something that has been around several years before I got my stressrelated fatigue diagnosis*. It has followed the same pattern for nearly a decade although my activity level had varied a lot. From the time where I was working full time but with very limited leisure until now when I am basically home-bound and forced to spend most of my time in my bed or sofa.

Although the clear and recurrent pattern, this is the thing - combined with my extremely limited range of activity - that people in general and health care in particular has had very difficult to understand and accept.

It is clear that most people can understand what it is to feel discomfort in the moment - due to sound, lighting, uncomfortable seating and so on - but they don't seem to understand the extreme consequences that can appear afterwards. As healthy you can struggle through that "short" moment of discomfort and then it's okay. I can also put up with the discomfort in the moment, mostly. But my problems does not end when the moment is over. It may even worsen for several days afterwards and then be present for a long time.

So "temporary discomfort" - due to physical, mental or emotional stress - can create an overload and a deterioration due to exertion - that can be long-lasting. But a vigorous exertion in an individual with ME/CFS is also is a risk of a permanent impairment.

If I want to avoid what you see as temporary discomfort, it's not that I find it difficult to persevere. On the contrary I am often too stubborn to bite the bullet for my own good. No, it's all about that I know what to expect afterwards, and which the long-term consequences might be.

What seems like a short-term discomfort for a healthy individual thus have far-reaching consequences in my everyday life. This means not only an increase in discomfort and other symptoms, but also that my range of activity shrinks and my already slow pace becomes even slower. It is thus to be even more limited in my daily life I want to avoid.

I do not want to overexert beacause I want to proceed with what I know I am capable of. To be active even if it is on a low level. To minimize the risk that an already very limited life becomes even more limited. It's all maintenance, and not at all about fear or avoidance.

When I avoid things, it's not about fear of increased discomfort in the moment. Nor of post-exertional malaise. No, it is in respect of my body's limits and a part of a deliberate strategy - that I should be able to continue to be a part of my everyday life.


Want to share?

I would be very happy if you want to share some of your experiences about things in the environment of the support system (healthcare etc.) or treatment that triggers PEM and long term exacerbation. I want to collect a lot of voices into a special blogpost about things that people who meet individuals with ME/CFS can do to reduce PEM-triggers.

For me examples of triggers can be fluorescent lighting, waiting while seated, noice etc.

Please write a comment below or send me an email at livetsbilder(at)gmail.com It's totally ok if you want to be anonymous! You can also use Twitter or Facebook.

*I am still waiting to get a proper investigation for my suspected ME/CFS after nearly ten years sick.

4 kommentarer:

  1. Well said!

    I remember early in my illness, I needed to go for an assessment by an Occupational Therapist for work. The waiting room was lit with strip lighting, attached to a busy office, and had a loud TV continually blaring. Secretaries used the waiting area to access other rooms with doors that banged. Metal filing cabinet drawers were also being dragged opened, and then loudly slammed shut. I could feel my head starting to reel during the wait. By the time I got into the appointment, I could hardly speak.

    This was such a contrast to the first Occupational Therapy appointment I had with a different doctor. Here, the waiting area was a small separate room, with easy chairs, subdued decor and no music. We were told we'd need to wait about 15 minutes and then left in peace. All I had to do was remind my husband not to talk!

    1. Thanks for sharing Sally! That was a really good example what difference it can make with an adapted environment! Welcome to my blog! ❤️

  2. Travelling to appointments is big. I need earplugs when I travel in public transport. Can't bear all the voices talking, while being so close to them. Switching public transport is very PEM inducing for me. It takes organisation - where to get off, how to get to the next transport means, being in time. Also it takes a lot of time, and waiting in a comfortable place is tiresome, let alone out in the streets with all the noise, movement, and weather conditions. I applied for a taxi discount card for disabled for this reason. It would solve many of those problems. I didn't get it, because ME isn't recognised as disease by all councils in the Netherlands.

    Benefits assessments go beyond PEM. I get so anxious I need medication for it. This happens to people without PEM as well! But for me, it's a matter of life and death, as I don't have a social network to rely on. Even less so than healthy long term benefits claimants. I always explain to the officers who plan the meetings that they are very taxing for me.
    When the doctor/officer is interrupted by phone or people who come into the room, it gets on my nerves. I need absolute quiet to concentrate and to feel like I'm listened to. The latter is of course a consequence of the long term denial of ME as illness. Also, as it takes enormous effort to get to appointments, they need to be as effective as possible. The strain that puts on me and the appointments doesn't help.

    Indeed the waiting room! My dentist's office has a tv and my doctor's office has a radio. Maybe I'll just ask to turn them off next time?

    1. Thank you so much for sharing! <3


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