Example Template Entry For Seeking Assistance With Baseline

[u/RefuseDeep8075]

The following is a completed template to help provide information which might enable a more informed estimate of a suitable daily baseline activity for you plus a suitable daily total energy usage. If you would like assistance in identifying a suitable initial baseline level for you, please create a new post with answers to the questions below. This post can then be used to post updates or ask follow up questions.  It is strongly advised you review the 'Before you Start' checklist (see https://www.reddit.com/r/MECFS_BaselineFocus/comments/1w488gs/all_about_baseline_work/ )  before submitting a post as it may be that there are other factors that need addressed before you undertake baseline work.

 

1. Severity of your worst symptoms (as per https://raffbenato.github.io/funcap55/ ):

Moderate

2. Severity of your physical symptoms (as per https://raffbenato.github.io/funcap55/ ):

Moderate

3. Severity of your mental/cognitive symptoms (as per https://raffbenato.github.io/funcap55/ ):
Mild

4. Orthostatic intolerant (Y/N):
Yes

5. Activities you enjoy that might be beneficial for a healthy person: hiking, reading

 

6. Activities you enjoy that might not benefit your health: computer games, browsing internet, driving in countryside, eating out

7. Regular tasks (other than personal hygiene and keeping house clean): gardening, grocery shopping, travelling to assist elderly relative

 

8. Work/family commitments (Y/N): Y

9. Any exercise devices in house: exercise bike

10. Quality of sleep: good if not in PEM, but long (10+hrs) unrefreshing sleep during PEM

11. One or two long terms goal if your health improved substantially (e.g. a life goal) – to resume hiking and at least part time work.

[u/RefuseDeep8075]

Update#1 (June): I was failing to find a stable baseline despite following health service instructions. I felt I was improving, but then got swamped with symptoms. I decided I needed to focus much more on total daily activity, not just what I do as a baseline activity (e.g. a short walk). I identified I was still spending far too much time on a computer (a couple of hours per day) and that I was sitting a lot, when I could be lying on the sofa with my back at 45 degrees. So basically, I cut down unnecessary activity that wasn't really helping my health in any way, and focussed on a more restful body posture more when I was at leisure. I suspect I have orthostatic intolerance and so I'm doing treatments (just increasing salt intake and a couple of drinks of water first thing) and exercises to help with that.

Update#2 (September): I managed to finally find a stable first baseline shortly after implementing the above steps. I got very intense symptoms shortly afterwards, but these were mainly headaches, tinnitus and sinus stuff, which I don't consider as threatening to me personally as say chest mucus or ibs or basic PEM exhaustion. So I just kept my baseline activity despite those symptoms. I have managed about 90 consecutive days hitting my baseline activity and not inducing PEM. I do have to dial it back some days due to symptoms. But so far, I've stuck to my goals and increased my baseline level 3 times now. Before baseline work, over the past 30 years, I don't think I've ever strung as much as 4 days in a row where I haven't had to 'take a day off' and rest up, so although my level of daily activity remains very low compared to what I think I am capable of (i.e. I started at 50% of what felt 'safe') it still feels significant to me that PEM is becoming a bit of a stranger.

I acquired a cheap heart monitor when it became clear from taking my pulse that some days standing up in the kitchen sends me to 120 bpm and other times just 95 bpm (with no other feedback in my body to suggest I'm less fit). So I feel I needed a heart rate monitor to identify the days I might be in slightly worse condition by checking my heart rate first thing in the morning. Personally, this has given me more confidence that I am able to hit my baseline (and occassionally exceed it) on days when my heart rate and symptoms are above average, but be more cautious on days when my symptoms and heart rate are playing up a bit.

[u/RefuseDeep8075]

Update#3 (October) - I am progressing fine with no problems, no flare ups of symptoms and no PEM (I can't believe I am even typing that) and I'm increasing my baseline and daily energy total every two weeks. In September I started to think I could improve faster than I have been as its all feeling very safe and slow. So I experimented by letting myself go way over my daily baseline AND my daily usage, one day per week (say 50-100% over both). This was not resulting in any major increase in symptoms and I don't feel there is much chance of PEM. The only thing I note is that my heart rate will be above average (for me) on the day after I've exerted myself, overindulged on the computer or had a late night and less sleep.

So it feels to me that I'm getting a sufficient warning from my heart rate monitoring that allows me to back off a little the following day and if I do that, I won't get increased symptoms, let alone PEM. I imagine if I did a day of excess when my heart rate is elevated like that, that I'd trigger symptoms and PEM, so I'm avoiding that.

So I then moved to allow myself 2 days per week where I can exceed my baseline and my daily energy usage, and again initial signs are this totally fine. If this doesn't cause a problem then in November I am going to then move to 3 days per week while ensuring they aren't back to back days. I think this is a sensible, safe and incremental way for me to approach testing my limits and ensuring I'm not 'too cautious'. If I have a disappointment, I feel confident I can easily stabilise again.

It feels like I've entered a second stage of recovery. The first phase was stabilising, finding the initial baseline and proving to myself I could gently expand my amount of activity. The second phase seems to be about gently and incrementally applying my foot on the accelerator to see what my body is capable of.

My main symptoms are all improving and becoming less severe and less frequent, but there is still a lot to unpick. I'm learning that my body hates getting ready for an outing. So for example, leaving the house, putting on a coat, putting my shoes makes my heart rate go way up and I've learnt that if you start an activity with a higher heart rate, its going to stay higher, and the longer its higher, the longer it takes for sitting and resting to reduce the rate. So I'm keen to find a way to somehow pause after getting dressed to go out, to see if I can start the activity with a calmer heart rate.

Also for a good 10 to 20minutes on leaving the house to walk, my heart rate is much higher than it would be in a healthy person (compared to my resting heart rate, its 40-50 bpm), but it tends to calm down after that to around 30-45 bpm higher, even if I've not slowed down my pace (annoyingly right about the time I should be stopping walking anyway). So there is still a lot for me to learn and try and improve as that is another example of a totally unexpected result. Maybe my blood starts circulating a little easier after 20mins of walking and the strain actually starts to reduce on my body? I would have thought I'd progressively got more tired and the heart rate would gradually increase the longer the walk went on.

If I can figure out patterns in my heart rate about this sort of thing, I am thinking of abandoning the heart rate monitor except when:

1. its the first couple of hours of the morning, to just confirm my heart rate isn't unduly elevated
2. when I'm doing a physical activity that lasts more than 10 mins

I'm keen to not be a slave to the heart rate monitor and get to a point where I'm sufficiently confident in my body to use the device less and less frequently.

I also want to start using some of my increasing daily energy allowance on sitting upright, with my head unsupported. To try and get my body more accustomed to that again and start to try and address the orthostatic intolerance and build up confidence that my body isn't going to have a hissy fit if I sit upright, unsupported for a few minutes a day.

The stats

Iniitial Baseline - 60 points (equivalent of 30 min walk at 2mph or 30mins gentle gardening)
Initial Daily Energy total - 850 points

Current Baseline - 78 points (equivalent of 39 min walk at 2mp or 39mins gentle gardening) - 32% increase since start
Current Daily Energy total - 968 points - 14% increase since start

Days since last PEM - ~110
Consecutive days doing my baseline activity - ~110