Lent Refections on ME!

Someone suggested I write a blog. Na not my style but I’ve thought that actually it’s not such a bad idea. So I’m taking it up for Lent.

Given up so much over the last few months that taking something up feels a better idea.

There seems to be a lot of information out there about ME/CFS and a lot of it points to the severe end of it. I want to unpick the other end. The end where yes you know somethings wrong but you don’t really believe you are ill; and it can’t be that. If you don’t no wonder others don’t.

So much has changed since last Lent. A very busy year, 10ks, Cleveland Way, poorly wife, new job etc. I crashed spectacularly in the Autumn; then got up again and crashed again. I was diagnosed with Mild ME/CFS in January.

A diagnosis I am (hence maybe blogging is a plan) struggling to own as being mine. I care for people; I don’t do sick I just crack on. I am still JUST hanging on at work if reduced hours. I’m not bed or house bound so it can’t be that. I have to admit sometimes that feels like the better idea withdrawing to bed but I’m bloody stubborn but pushing through is probably not the best thing to do if I want to keep it as mild.

I’ve been lucky to get an early diagnosis that I can change my fast paced life. I don’t want to one bit and I will run, cycle and climb again; I can’t and won’t give in. Yes I’m knackered beyond knackered. But aren’t we all. My body hurts all the time you know that overall ache when you have the flu, proper flu that I’ve only had once. Also what’s this about; I’m so bloody tired but I can’t sleep! Just daft. But the worst bit for me, pins and needles in my hands, that just drives me mad. The scariest though is when I push through too hard and my brain stops. It’s like a record on the wrong speed. But it’s ok I’ve not got ME/CFS I’m not in bed I’m still at work. I’ll be fine.


Ending of Lent; time to move ME on

What are the things that we need to hold on to, and what are the things we can let go of?

Have I done much reflection or blogging this Lent as I proposed?

No just too exhausted and the priority was to just hang on and have what Paul McGee, the S.U.M.O man calls Hippo time; and that’s ok.

On the Tuesday; Godincidentally my birthday, a card from God. Unable to do both work and church (life’s a fine balance!) I noticed Bishop Helen-Ann+ had blogged her reflections. https://bishophelenann.wordpress.com/2018/03/27/holy-week-compline-address-tuesday/

Helen-Ann+ quoted Glenn Colquhoun.

The art of walking upright here

Is the art of using both feet.

One is for holding on.

One is for letting go.

Oh how I am struggling to keep upright, let alone walk upright. All, and I mean all of my energy goes into keeping at work. It’s what I do; it’s who I am; it’s who I’ve always been since I joined the RAF at 16. It’s my identity; it’s my self worth; it’s my sanity. (It’s not pretty when I stop)

But am I using both feet correctly; as a therapist I should know!

One is for holding on.

One is for letting go.

Nope, I have both feet stuck in the mud, wallowing like a Hippo holding onto the old me pre ME.

Helen-Ann+ says the art of walking upright is ‘Not standing still, walking, moving. Not forgetting, rather remembering’.

One is for holding on.

So I will remember that half marathon I was training for, that Cleveland Way I’ve not finished, the long hours I worked because I wanted to. I’m not giving up on it; but it does need parking for now.

Time to look what else is out there; what else drives me. It’s ok to feel fragile and uncertain be that in my faith or my changed circumstances; it feels like I’ve lost who I am a bereavement of a former self.

Loss although hard can bring things that you never anticipate. Financially it’s going to be a struggle more loss but we’ll manage and we are not letting completely go.

One is for letting go

I can’t get off the bottom step if I don’t. It’s ok though I can still hold onto the bannister. I know who my bannister is!

I just need to lose my need to be in control and trust…… simple!!