There is no known cure for Myalgic Encephalomyeltits (ME) but there are many treatment options that are meant to help. These can range from diets; psychological therapies; alternative therapies all with a price tag as wide as one’s imagination! The one common thread that almost all of these advocate is pacing.
In theory, pacing is simple, common sense; It’s a case of being very careful how much you do in and between a day/s and allowing plenty of time to rest after any physical or mental exertion. (It’s recommended to operate well under full capacity-up to 50% less and to be aware the PEM (Post Exertional Malaise) can take a good 48 hours to take effect in ME) However, simple theory doesn’t equate to simple practice! Adjusting life permanently to pacing principles is far from easy. We’re not talking about reigning in the amount of nights we have on the razz (we wish!) For severe sufferers the activity may be as little as taking a shower or brushing their teeth.
I like Dr VanNess’s credit card analogy on pacing: people with ME have very low income energy budgets and are slammed with extortionate interest rates when these are exceeded. Basically, a big spending spree will result in a big financial crash that will take even longer to recover from! (I recommend reading Sally Burch’s Blog: ‘Just ME’ post: “Play-Up & Lay-up” not “Boom & Bust” which demonstrates managing this principle with helpful graphs far better than I can!)
Pacing is a principle that everyone I know with ME adopts to some degree no matter how severely effected they are. I think it’s also fair to say that it brings universal frustration as our energy budget thresholds aren’t known until we become overdrawn! Furthermore, they can fluctuate from one day/week/month to the next. Contrary to popular belief, it doesn’t matter how fun or exciting the ‘activity’ is or how bright the sun is shinning (!) PEM is a physiological not psychological response. ( In my experience it took months before even beginning to introduce ‘fun’ activities back into life )
It can feel like having a bungee rope permanently attached to you; you may be able to move slowly forward but if you go too hard or fast you are likely to be catapulted at double speed in the opposite direction! Just when you think you’ve got the hang of how far you can inch forward you can discover that the rope you had been used to has been swapped for a much shorter one!
Pacing robs us of spontaneity. All our energy needs to be carefully accounted and planned for but the biggest problem with pacing is that it can heap a whole lot of guilt on top of the illness; If you do too much it feels like your fault, if you are resting up whilst feeling ok you can feel like a good-for-nothing, lazy fraud! It’s a perpetuating circle and why I think so many people with ME suffer ‘boom and bust’.
How do we break the guilt?
- If you are trying to adopt pacing principles recognise and congratulate yourself that you are doing the best you possibly can to keep yourself well.
- Be encouraged that everyone gets it wrong – regularly!
IfWhen you suffer a crash, accept it, rest more but don’t beat yourself up about it. This is the nature of the illness and not your fault (Mindfulness can help with this)
- Personally for me, it also helps to remember that my identity is rooted in my ‘being’, not ‘doing’. It sounds obvious but it took me a year to realise that I’m no less of a person for resting and doing nothing than when I was racing around doing all things for all people.
In our online generation it is easier to plan and pace certain things such as (virtual) social interactions, shopping, deliveries etc but life still throws up stuff that we hadn’t planned for, whether it’s for ourselves, our partners or our children. Giving ourselves extra ‘rest’ time should help to absorb some of those hits better but we also need to be well trained in saying no and breaking off commitments if we feel we are starting to pull against that bungee rope! We need to be as conscientious about our pacing as we would be about taking medications. Pacing is our medication! It is the best thing we can all be doing so are we taking it seriously enough? It’s easy to let it slip when we feel better and the bungee rope feels longer but the pull always seems to come when you are least expecting it!
I realise I’m writing this to myself as much as anyone else! There is nothing new in what I’m saying but sometimes it’s just good to be reminded of good principles.
When we are energy poor, we have to be careful about how we spend our energy.
My top 10 energy saving tips as a mild/mod sufferer:
2 Ask for help and delegate more (routines can be helpful so it doesn’t feel as though you are always asking!)
3 Assign daily/weekly chores to the children/ family members
4 Compile a weekly menu (to pace preparation time & good nutrition and balanced diet)
5 Cook in bulk and freeze daily portions or use the slow cooker
6 Prioritise time using ‘to do’ lists ( see image opposite)
7 Communicate online- not only does it allow me to communicate at times convenient to me but it has the added advantage of keeping a record of things that I would otherwise forget!
8 Try and include something that you really look forward to in the week – even if it’s just a favourite TV programme
9 Accept that standards may need to slip and be honest to others. Remember they are even less able to predict your energy levels than you!
10 Remember it’s the illness that ultimately causes the crashes; It’s an inevitable part of ME. ME has enough symptoms to try and adapt to, don’t let shame or guilt be one of them!
How about you? I would love to know what your energy saving/pacing tips are and how you cope with pacing.