Dealing with the cycle of hope and despair

If you’re suffering from M.E, you’ll know that you have good days and bad days, it’s part of the nature of it, but also a result of the boom/bust cycle that it’s so easy for us to fall into.

This is for me mentally the hardest thing and I know others who feel the same. When you’re feeling better, your outlook is positive, you have hope – you can see the route to recovery, you can imagine for short periods what it might feel like to be back to yourself and you’re positive. However, this is more often than not followed by a period of feeling bad/worse, where you feel despair, helplessness and frustration. And then it happens all over again!

Sometimes there might be a reason for it – something you did a day, two days, three days before, but often there is no reason. That keeps you guessing and questioning everything you’re doing! However, there is no doubt that the boom/bust cycle is the major contributor to this – that being where you do too much on days where you’re feeling good, and therefore encounter a period after when your symptoms increase and you need to rest. I find identifying these boom/bust patters more difficult the more active or able you still are, where as it’s simpler when your limitations are greater.

For example, if you’re still working, having a form of social life and engaging in mild exercise, it is incredibly difficult to pinpoint what has caused a bust – it could be a number of things or a combination. However, if you’re bed bound and your activities are minimal if at all, it’s a little easier to see where you’ve gone overboard! That said, the principle is the same – you should find a level of activity that you can do every day, without making your symptoms any worse, and not impacting on your ability to do the same the next week. This is your baseline that you then work from, and over time, build from and increase.

I’m currently in the process of trying to find mine and am finding it really difficult, particular as I’m still relatively active compared to some, and how I was as a child. However, I’m being guided to reduce what I’m doing, even if I feel it’s too little, so that I minimise those ups and downs. Let’s see how that goes!

Oh, and something it’s always important to remember throughout this process is you can get better and many people have using this process. I even have to remind myself that, and I’ve done it before – such is the challenge!

2 thoughts on “Dealing with the cycle of hope and despair”

  1. Hi James. Was shocked and sad that the ME has returned but SO impressed with how you are dealing with it! I hope you recover soon and the the battle isn’t too hard. I know so little about the condition but will be following you on your journey to learn more and hopefully help support you in the challenges you may face ahead. Keep strong. You’re such a lovely young man with so much to look forward to. All our love to you. Gary, Rosanne, Frank and Grace xxx

    Liked by 1 person

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