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How to stay smart when your fatigue journey is going well!

I’m helping a few people at the moment who have made great progress in their fatigue rescue journeys, but have realised there are still challenges to overcome. They’re in such a better place than they have been, but this does often bring a range of new obstacles to have to overcome. And these new challenges are, in some ways, even trickier to navigate than those at the start of their journey.


In this article, I’m sharing a few suggestions and pieces of guidance to reassure you that what you’re experiencing is what most of us go through as we work our way back to full health.


First of all some reassurance…


Getting to the stage where you’re feeling considerably better and can start living a sizeable part of your life again is a wonderful thing to have achieved. So, first and foremost, please do recognise that! You do still need to apply a certain amount of care to every day though. You’re still on your journey, and to a certain extent the smart things that have got you to this stage still need to be adhered to. But you can probably move into a lighter version of your previously strict routine, and that’s where it can get a bit tricky.


You’ll need to get used to recalibrating what you can and can’t do. And you’ll get it wrong sometimes, which can lead to a few symptomatic days occasionally. But it doesn’t mean anything has gone horribly wrong, or that you’re sliding backwards again. It’s very probably down to the fact that you’ve overdone things a bit and are feeling a bit of a flare up as a result. It’ll pass and you’ll be back on track very soon.


OK, on to the guidance:


Communication


Communication with others is an important element at all stages of your journey. Finding ways to let your loved ones know what you need/don’t need, and how you’re feeling, can be difficult – mainly because unless they’ve been through anything like this themselves, they can’t possibly really understand what it’s like. But it doesn’t mean it’s not worth trying to explain.


Understanding a fatigue health challenge is confusing enough for those of us who are actually experiencing it (!), so it’s no wonder it’s even trickier to understand for those around us. Even more so when we get to a much better place in our recovery. They’ll see you doing more, having many more better days, and often just looking and seeming much more yourself again. And this gives them such hope and relief (they’ve probably been so worried about you) and they’ll start to assume that the worst is over and that you’re ‘back’.


Only you might not be… yet. It’s very likely that your journey will continue to have a few bumps in the road, it’s just the way these things go. But you need to keep these to a minimum if possible, and that means still being careful about how much you do every day.


Think about how you can explain this to your loved ones. Tell them that you’re so happy to be having considerably better days overall, but that you do still need to be careful for a while yet. And that just because you can do some things again – e.g. going back to work – it’s feeling tougher than it probably looks to adjust to doing more, and you still need a lot of down time to balance things out.


Maybe get them to read this article if you think it will help!


Consistency


Linked to the above point about communication, my next piece of advice is to keep things consistent. Not just for you, but for those around you too. Keeping your energy levels fairly steady is a very helpful thing to continue for now, and that means trying to balance how much you do every day. Doing too much on the good days and then having to cut back a lot the next, is a form of ‘booming and busting’. At this stage of your journey you can probably get away with the occasional bout of that. But don’t let yourself get into a boom and bust pattern! At best it will keep you in a holding pattern, where further improvements are slow to achieve. At worst, it could start to hit the progress you’ve already achieved.


But it’s also confusing for your loved ones to see you doing All The Things one day, and then hear you saying you can’t do much a few days later. It’s better for you, and easier for them to understand, when you find a way to keep to some sort of steady level of activity and discipline. Stick to your helpful bedtime routine, be selective about how many social engagements you say yes to each week, keep everything else low level when it’s a work day… whatever feels right for you. It’ll mean things go better for you, and it’s reminding your support networks that you’re still being careful.


Acknowledge your progress


Here’s a surprising message for you all:


The bad days become tougher to deal with the further on you are in your journey.


Who’d have thought?? I’m sure in the early stages of your journey, the thought that you’d ever be at a stage where the good days would outweigh the bad days would seem like a wonderful prospect! But I hear time and time again that the further apart these difficult days become, the tougher they are to deal with when they happen.


It's also tougher to recalibrate the new level of acceptance you need to find at this later stage in your journey. When you’re in the earlier part of your health challenge, and really can’t do much at all, it’s actually often a little easier to accept. After all, if you feel really symptomatic and unwell most of the time, you can’t help but understand that you can’t do much. But once you’re back to a certain level of wellness and have to stay smart and balanced even though you can do so much more, that can be tough to accept. You’ve had a glimmer of your old life back!! And it’s easy to get ‘grabby’ about wanting more and more. But try and be patient.


Remember that it’s a good thing that you’re experiencing these new problems! And that the difficult days WILL feel really challenging to get through. But that the fact that they’re much further apart now, is a promising sign of the progress you’re making…and there’ll be a time (soon, I hope) when they don’t happen at all. Celebrate the things that you can do again, but accept the fact that life isn't back to being effortless again yet.


Letting yourself get too worried and low on the difficult days, really won’t help at all. Accept it for what it is, take any learnings that are there, and stay as calm and positive as you can until you’re back on track again.


Energy management


My final piece of guidance is around the importance of ongoing energy management. Or pacing, as it’s often called. A certain amount of this is still vital, right until you’re fully back. But you don’t perhaps need to be quite as detailed and structured as you might have been in the past.


Think about how you can keep the right balance going. Some people find it helpful to track certain biomarkers (via a smart watch or ring) to give them helpful information about how ready their system is for the day ahead. Although I would never advise living your life by these things, they can give a helpful insight. And seeing data that’s telling you it would be smart to be particularly careful that day, can be a great way to keep yourself in check.


Another thing I often suggest is to think about three categories of activity: physical, cognitive and social. Think about what you need to do that day, and is it looking like it’s mainly going to be about:

  • physical things – e.g. lots of appointments to get to, or trips to the shop, and perhaps a yoga class

  • cognitive things – e.g. it’s a work day, or you have lots of important personal admin to catch up on

  • social things – e.g. a lunch with the girls, or a night out to celebrate a friend’s birthday.


Assign a primary category to the day and recognise that that’s going to be the priority energy demand for the day:

  • If it’s a workday, dial down how much socialising or exercise you do

  • If it’s a very active day physically, don’t plan any social catchups or spend hours on your computer

  • if it’s an evening of fun social plans, don’t fill the day with heavy brain tasks like reading or catching up on emails, and be smart about how much you do physically – e.g. get a cab to the venue rather than walking.


~~~

I hope the above has given you some food for thought. There’s so much advice and guidance I can give to people at this stage of their journey, but much of it needs to be tailored specifically. I hope the more general themes above give you some new ideas and reassurance, but if you’d like some more specific help please get in touch.


Bye for now,

Pamela

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Thank you for sharing. It’s such a difficult time this in between stage! I wonder what recovery activities were you doing during this time in your own recovery?

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Hi Katiemay! I hope you found this article helpful - and at least reassuring that you're not alone in finding this stage a bit tricky.Great question :-) The key thing that I was continuing to give attention to was gradually increasing my baseline. That is, gently continuing to increase my activity levels as and when it felt right to do so. You might have seen some of my other posts about the fact that I pretty much only did walking until I was fully recovered. I did have a couple of small bike trips but they were on an electric bike, and even then it often tipped me into a symptom flare. So I found that walking was the best…

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