Before CFS/ME, we all had days when we were just tired, for whatever reason. Tiredness is how our body indicates to us that we need to rest, to maintain our overall balance of health.
These natural ups and downs are normal, and previously we wouldn’t have been overly concerned. But now, when we feel our symptoms come back, it’s easy to panic or despair: ‘I’m going to crash’, ‘I’ll never recover’, etc.
This is understandable, as we know how bad a crash can be. But it’s also misleading and counterproductive.
Real recovery is uneven, so ups and downs are an essential part of our recovery, and of normal life too. When assessing our recovery, it’s therefore important not to focus on any specific peak or dip.
Instead, monitor your recovery as a trend over time.
If your overall trend is towards recovery, you’re in the right place. If you’re slipping backwards, that’s a sign that it’s time to try something different.
It’s very difficult to see your progress on a day to day basis, particularly on bad days. This zoomed out view helps us get that perspective, and allows plenty of time for changes to bed in.
It’s especially important not to jump to conclusions in short timeframes, such as days or weeks. Recovery is complex and multifaceted and it’s the combination of many factors over time that affects our overall trend.
It’s natural to want quick results, but a lot of the things that help the most take time to work. If we only looked at the short term impact we’d dismiss them before they had a chance.
To be able to monitor effectively, I’ve found it helpful to keep a daily diary of my energy levels, with a score out of 10 (I use half points as well), along with a few notes on what I did during the day. Then every few months I add the scores into a spreadsheet so I can see my overall trend.
As expected, my energy levels go all over the place day by day and week by week, including some extended crashes. But over the timescale of months and beyond, I can see progress and an overall trend towards recovery.
Smaller but important trends can also show up. I found that my recovery speed from crashes has improved over time; a positive sign that I may not have realised otherwise.
It also shows us where things we’ve tried haven’t worked, and where events and activities have been counterproductive. This is often the most useful information, as by removing excess load and stress we give our body the right conditions to heal.
Monitoring the trend gives us a much better overall view of our recovery. We have often made more progress than we realise, and taking this calmer, more holistic approach is an essential part of figuring out the puzzle of your own individual recovery.