This life in the slow lane

My days are not necessarily bad, they are just hard.

There is still so much happiness in my life in-spite of, and sometimes even because of, the restrictions of my health.

My normal has changed beyond recognition but maybe there is no universal normal anyway? Perhaps it is an entirely subjective ideal; based on what each of us seems to be the norm. For me, it is now normal to need to rest after taking a shower, or normal to have to block off days to recuperate after being out of the house for a couple of hours. For others, their normal is getting up and showering, going out to work, then coming home to cook dinner. Neither is right or wrong or good or bad. It just is.

I like my life. I feel quite free to champion and celebrate every thing in it. I walked up the stairs without needing to crawl or rest along the way. Hooray! I got to the door to receive a parcel quick enough that the delivery person was still there and hadn’t left yet. Hooray! I made myself a coffee in a mug rather than getting confused and almost making it on a plate(?!) Hooray! I live life so slowly that I notice when the evenings are getting lighter as we head into Spring. Hooray!

How wonderful and lucky is all of that; to allow myself to step out of the constraints of what is ‘normal’ for someone of my age and acknowledge that it is okay to serve your own soul rather than bending and stretching to do only what society is telling us to do: raise children, make more money, live only for the weekend, say yes to everyone in order to please them and not ourselves.

We are meant to want more for ourselves than what is now normal for me. But I am so happy with my lot.

As his birthday approaches

Even though this relapse has lessened its grip to a certain degree, it is still very much present. So I’m reminding myself of a note I wrote this time last year, and adding a little bit extra.

A selfie of Anna and a camera shy Mr Tree Surgeon, taken a couple of weeks before Anna’s relapse started.

Note to self:

It will not be your fault if you are too unwell to celebrate his birthday in the ways you’d like to. It doesn’t mean you love him any less. Your wellness is not an indication of how much you love someone. What an absurd way of measuring anything, other than how sick you are, that would be!

It will not “ruin his day” as you claim.

The desire to do all the things is there. The physical capacity to do those things may not be. You have given yourself the best chance possible by being sensible beforehand.

Take the pressure off now; it will not help in any way to lay here willing yourself to be “well enough” come his birthday.

Being a grumpy, miserable, frustrated little so-and-so because you cannot do all the things you want to on his birthday does have the ability to “ruin” the day though.

It is totally acceptable, and normal, and okay, to be annoyed if you wake up too ill. Just try not I throw the mother of all tantrums about that on his birthday. While there’s little you can do to mean you wake up at your best, not being in a mood about it is something you can control.

As disappointed as you may be, and it is disappointing for you both, the day is not about you or your physical limitations. There is added stress and pressure (both self-imposed) because no-one can come to celebrate his day with him if you’re too unwell to do much at all. But, as ever, all he wants is to spend his day with you. Trust him on that. He doesn’t need the all-singing-all-dancing version.

“But I’m too unwell to do anything!” Define “anything” Anna. Can you smile? Yes. He’ll love that. Can you hold his hand? Yes. He’ll savour that. Can you chat? Sometimes. He’ll make the most of when you can. And can he sit in bed with you for a bit at a time? Yes.

Okay. It’ll all be okay then.

When you have someone like him in your life, you want to give them the moon on a stick because they deserve nothing less. But I can’t. I can’t do the things my nasty inner voice is telling me he deserves on his birthday. But what he deserves more than anything is to be loved. And I can do that. No problem at all.

Saving every ounce of energy and wellness I have to play a board game with him if I can. We’ll just have to wait and see how it goes.

Incase you needed reminding

No amount of willpower or positive thinking will rectify the faulty ATP production within your body. No amount of wishful thinking will suddenly see your likely-mitochondria-failure reversed.

Please don’t let flippant remarks by others, or by articles written by those outside this community, about how they don’t let M.E. beat them, or how they don’t let it stop them from doing x, y, or z make you feel like you’re not doing enough. Please.

Because my goodness you are outstanding.

Do you know how gutsy you are to be trying to mould a life for yourself around your all-consuming health?

How brave it is to try new and different hobbies and interests to see if they’ll ‘fit’ better with the version of yourself you have to be now?

How much inner strength it takes to say “No” to an invitation you could possibly manage, because you already have a commitment for next week and doing both isn’t sensible or what’s best for your poorly body?

How courageous it is to get to a point where you decide the supplements and diets that could possibly help you aren’t the direction you’re able to go in right now?

How making your peace (even when it wavers) with the fact that this illness will likely always have an impact on your life in some way is one of the most incredibly valiant things you’ll ever do?

You’re doing far more than enough. And I’m happy to remind you of that if you ever forget again.