Hello Debbie,

You’re welcome, I have to admit this year it was touch and go whether I’d get this post finished in time for ME Awareness Day as there’s been a lot of demands on my energy lately! But I did it, and it’s lovely to hear from readers like you and I appreciate the effort that goes into commenting like this.

I am both sorry, and heartened that you can relate to how I’m feeling as we exit lockdown; it’s nice to know I’m not alone in feeling that way. I’m managing my frustrations too, but it does feel like my bubble is doing the same as yours!

I honestly don’t understand how those closest to us can think like that, I am so sorry he’s turned his back on you, that must be really hard.

I’m always amused when people are surprised by what I do before I get out of bed – for me now it’s normal, I can’t imagine just being able to jump out of bed and get on with the day (actually I did do it once when hospital transport turned up earlier than expected and I was still in bed…let’s just say that day didn’t go too well!!) I’m the same in terms of pacing and learning not to get frustrated, well not too frustrated anyway!

I am glad you’ve got a good lodger and hopefully his short sharp introduction to a day in the life of M.E. will help him be an understanding doctor should he come across M.E. in his work.

It is lovely to hear that life coaching is helping you recognise you’re still a person and you are getting glimpses of the real you. I think it’s something we all lose sight of with this illness, when I think about it I’m not even sure I know what the real me is any more because I became ill with M.E. aged 12 I was at that point where you’re still growing into the person you will be. I hope some day soon those glimpses might become a reality for you, but in the meantime treasure those glimpses & keep smiling.

Clare x

Thankyou for sharing, I appreciate the effort of not only typing but collating your thoughts in the first place.

I’m heartened to hear you talk about coming out of lockdown, I feel the same way, for a while most people had to live in the bubble I do daily but now they get to eacspe that bubble and I don’t.

I’m managing my frustrations on this front but it felt like my bubble was sticking it’s fingers up at me and saying, “but you don’t get to escape sucker!”

My younger son, he’s 28, a high flyer living the dream thinks it’s all in my head and I just need to have positive thoughts 🙄 he’s basically turned his back on me and we have no contact now, I couldn’t cope with his rejection of my weakness. Yer, go figure!

Every day is a triumph because I get through it.

A Life Coach recently asked me to tell him how my day started. Pretty much like yours, my eyes open, My brain assesses in milliseconds how it and the rest of my is feeling at that point and I calculate what I reckon I’ll be able to achieve in the day. I haul myself out of bed and the day begins. Sometimes I’m up and about in 30 minutes other days it takes 2 hrs. But I’ve learnt to pace and not to get frustrated if I have a slow day. The Life Coach just said, and that’s before you get out of bed and I’m like yer, 🤔

My lodger is a local doctor and to say he’s had a short sharp induction to a day in the life of M.E. is an understatement 😉 He’s become emphatic, picks up on my status and I’ve taught him to cook from my resting place on the sofa. Only so much of his rice and fish I could eat 🙂

Like you say, why would we want people to see us at our worst, why would we want to concern them and add to their worries.

The Life Coaching is helping me recognise that I’m still a person and I get glimpses of the real me which is heartening, would just like the glimpses to become a reality.

Debbie x