So, i'm a month from hospital discharge now and although I have made progress, its slower than I expected! I remember the doctor discharging me remarking that i'd be back in work in a month!
To be fair, i've battled anxiety and this has not helped, but thats something i need to deal with and mindfulness is helping somewhat.
What dawned on me today was exercise and why I may be having fatigue crashes. Before all this happened, I exercised 3 - 4 times a week, but always had a rest day in between.
It dawned on me that resting back then, my body could still cope with a walk to the shops, or getting me round the house, use the stairs.
What i've been doing this last month is a relatively sustained level of activity every day. In effect, no rest time.
Rest in my current condition probably means no stairs, only getting up to go to the toilet, make food.
On an exercise day, I can use the stairs a few times (which I can do now) and take a short walk (I can manage a 100 meters or so now)
Does this make sense folks? Have I unwittingly pushed my body, because I felt that using stairs is not exercise, that normal everyday activities I did in the past without thinking, well, I do need to think about them?
Please let me know what you think? Going to speak to my sister today, she's a sports injury specialist and actually works to help students with long covid.
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natswright
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Clbi g the stairs,short walks and housework are all great forms of exercise, but please go back to having a rest day you don't want to push yourself take things gradually. But well done for your progress and determination. Have a great day and take care 😊 Bernadette and Jack 🐕 xxxxxx
Thanks, resting today, but feeling pretty bad when I get up. I think i'm struggling with my anxiety, chest is a little tight, feel a little short of breath although my sats are good. I think when I have setbacks it worries me.
I feel down when progress is slow, and after overdoing it yesterday, my chest feels odd today. Loose and rattley.
What works for me is not to think about exercise as a separate identity but to incorporate it into my normal activities. The less I think about my ailment and things associated with it the more I can apply to pleasurable thoughts and activities thus avoiding periods of depression. It’s all to easy to monitor yourself too closely and worry about the results.
Hi Nat,I think what you are experiencing is the boom and bust cycle. With chronic fatigue it doesn’t have to be much of a boom to create a bust. More of a whimper really😁
I’m putting a link below to a leaflet on managing cfs. It is not the best, but it is a good starting point.
I have a very detailed document that illustrates all of the various ways in which we use energy while seemingly doing nothing which would help to understand grading exercises. I haven’t put it up, information overload and all of that! If you want it at any time I’ll put it up.I say it is useful because I did a grading activity exercise with my OT. I had to mark activities on a scale of 1-5 according to the energy they used. It came as a big surprise to me that knitting used more energy than walking! (This is because of all of the components involved in knitting)
Oh, yes, i'd be interested to read that. I have gotten out of bed now and am watching the world go by. Feeling a little better. My sister wanted me to go to a coffee shop with her!!
I am so sorry this has taken so long. I think this is my 6th draft and I am still not happy with it.I am trying to condense 10 weeks of occupational therapy into one post. I fear I haven’t done a very good job!
Below you will find the information I referred to earlier.
When you get to the therapy session, if you look down the left hand side, you will see the ways in which the body is using energy during a relaxation therapy exercise.
I thought this might be useful. We tend not to think in detail about all of the things that are going on when we are doing something.
This document highlights that our body is using energy all of the time, even if we are not!
All of our senses are constantly at work and the brain is constantly interpreting this input.
And then there are the normal bodily functions - the heart beat, breathing, and all of the other mysterious functions our bodies perform in order to keep us alive. For the body these functions have priority, which is why it is important to listen to your body when managing fatigue.If you don’t chances are your body will make you.
The idea of analysis of activities is not something you need to work out in any detail, but just be aware of.
When managing fatigue two things are frequently referenced. Balancing activities and grading activities.
Balancing activities can to doing things we want to do while still doing the things we have to do.
One aspect of balancing activities which is often referenced is of changing from one activity to another as a way of managing fatigue.
This means changing the components. So for example, changing from hoovering to cleaning windows won’t work, because the components involved are the same - you might be using arm muscles instead of leg muscles but the rest - visual perception, concentration etc are the same.
So a change of activity might be hoover then listen to music.
And then there is grading activities- making them easier and more manageable.
How can I use less energy but still achieve my goal?
It might be splitting the task into short periods over a longer length of time. It could be sitting down to get dressed, make a sandwich etc. It might in preparation- getting your clothes out one day ready for the next instead of doing it all when you get up.
Grouping activities- I’m going upstairs to got to the loo so while I am there I will get my blouse out ready for tomorrow.
Grading is also about getting your activities to a level where you can manage without being wiped out.(This is where being aware of your symptoms comes in. The idea is you stop before they start to increase)
You maintain that level for a while and then increase your activity level by a small amount, maintain, increase etc
Pacing.
Pacing is about balancing and grading your activities while planning rest periods.
So as an example, I’ll take getting up.
Social convention says we get up, have a shower, get dressed, do our hair, make the bed, come downstairs, make something to eat and drink. While we are eating and drinking we think about what we have to do next, or maybe check our phones and emails while we eat and drink.
Pacing says, get up. Shove a dressing gown on, go downstairs, make a drink and sit in a comfy chair and drink it.
Forget the shower, get washed at the wash basin or skip it altogether.
Wear easy to put on clothes or on a bad day, stay in your dressing gown.
Make the bed later or not at all.
Bed must be changed once a week. No it doesn’t.
You must Hoover every other day. No you don’t.
You must dust every day. No you don’t.
Windows must be cleaned at least once a fortnight. No they don’t.
Pacing is about I want to watch that film later so the washing up will just have to wait.
Don’t concentrate on the things you haven’t done, can’t do. Be pleased with what you have done, no matter how small - if you break a small thing down you have done a lot😁
I do think you are over thinking things and not thinking about the positive!Only a few days ago you couldn’t manage the stairs or go out. At one point you were wheeling yourself around in a chair. Now you can use the stairs and walk 100m or so! This is amazing progress.
Are you still at your parents or back home?
Also stop thinking about what one doctor said on discharge. They were trying to be positive and encouraging to you. But that was only one opinion about a condition that is not fully understood. We are all individuals and what is right for one person isn’t accurate for another.
You ARE making progress and whilst is slower than you would have hoped for it is still progress. Try to concentrate on these actual facts!!
Hi Oshgosh. Have you got the BFL exercise book? It is basically on all over body work out. It is very good and you can split in into different sessions.I reorganised the sequence of activities into upper body + upper body stretches.
Another session on lower body exercises and stretches.
And a third session of chair based exercises + stretches.
As everyone else has said, looking on from outside, you are definitely making progress. You're impatient to get back to normal (been there, done it) and it seems as if it will never happen, but you are right to pace yourself and give your body a regular rest. I hope your sister will have some positive advice, but remember recovering from covid is different from recovering from a sports injury. Sports people are fit when they damage themselves: your body has been through the mill (and survived,) now it needs a bit of cherishing. Good luck in finding the right balance of exercise and rest. xxx
Hi natswright. Pacing involves taking 3 x 20 minutes rests during the day. Think of your energy as a rechargeable battery, once flat it takes ages to fill up, but if only used a bit it responds faster. Feel free to contact me as I used to be a physio dealing with fatigued patients
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I have got my O2 at rest up! But?
Can't exercise
Exercise reduces calories burned at rest in individuals with obesity
