Wow! I haven’t seen you for, like, ages!

I went out for an early evening drink with a friend I hadn’t seen for ages.

That doesn’t sound all that unusual but for those of you with M.E., you’ll understand how out of reach such a normal activity can be for us. I’ve only had enough of an improvement in my symptoms to be able to do this again lately.

I suffered with post-exertional malaise for several days afterwards but I can now physically and cognitively manage an outing for 2 or 3 hours, including travelling time, as long as I haven’t already over-done it and if I plan some recovery time for a few days afterwards.

If you don’t have M.E. and would like to read more about how people with M.E. have to pace their activities, Sally Burch has written a great blog post about all the thought and preparation that goes into a person with M.E.’s daily life and what we have to do to participate in normal things for a short while now and then.

All of the things involved, such as being able to tolerate an alcoholic drink, making it across Bradford by public transport, on an evening, when daytime is better for me, and also sitting in a noisy room full of people, are all things we find difficult because of our M.E. symptoms.

I hadn’t expected such a large group of people to be sitting with my friend when I arrived and they were also people that I hadn’t seen since before this big relapse I had 3 years ago. I felt anxious when I was making my way across the pub to their table, dreading questions like “so what have you been up to?”.

One of the people with my friend said “Wow! I haven’t seen you for, like, ages!”

“Yes, it’s been 3 and a half years!”

“So what have you been up to?”

The whole table of people stopped talking to listen. The pause felt like ages. What I really felt like saying was “I’ve been in the same place all along and it never occurred to you to see how I was or find out what happened to me. I post on Facebook all the time about my illness. You should feel embarrassed not to have been in touch”.

I didn’t. Anyway, that would be unkind. Instead it was me who was feeling embarrassed, not them. I felt I had to justify what I’d been doing all that time, why I’d disappeared from view, to give a credible, meaningful answer to the question I dread so much each time I try to return to a normal-ish life. With something positive at the end of it to make it sound like I wasn’t being a moaning party pooper.

I answered, “Well I’ve not been well since I last saw you all, so I’ve been at home mostly and unable to work but I’m hoping to be well enough to start using my qualification for some volunteering soon”. Phew! With that over with, the conversation turned to the sewing and other things I’d been putting on Facebook…not the posts about M.E. though!

As the evening progressed it dawned on me that these people were sitting in the same seats, drinking the same drinks, in the same pub, having the same conversations, moaning about the same jobs and the same colleagues as 3 and a half years ago!

During that time, I had been in my isolated M.E. world, stuck at home struggling to do even the basic everyday things and finding the emotional implications of losing every part of my life again to a relapse intolerable. I had to find joy somehow in the really small things and the tiny achievements which feel like a big deal to us.

That evening I realised for the first time, that actually I’ve done loads in those 3 and a half years, even if it was all done from my bed and my sofa. These people I’d felt left behind by were just doing the same old things all that time. This realisation has really turned around how I see getting back into a semi-“normal life” again after a relapse. Hopefully I will remember this the next time I feel like the real world is leaving me behind!

Please feel free to leave a comment at the bottom of the page. Comments will be moderated and all views will be respected.

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8 thoughts on “Wow! I haven’t seen you for, like, ages!

  1. This is a really powerful piece, johnathan. Sums up a lot of my own personal experiences dealing with returning to a “more social” life after anxiety relapses. Despite so many Facebook and blog posts people still like to ask “so where have you been then?!!!”. Keep posting 🙂

    Liked by 1 person

    • Hi Helen, sorry to hear you come across comments like this too. This is a new blog I’ve started writing as a pharmacist with ME. I hope you like what I write – your comment is really appreciated, so thanks 🙂 Johnathan has kindly asked if I would like to write a guest post on his great pharmacy blog, so I’ll be working on that in the coming few weeks. Hope you’re as well as possible x

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      • Hi Emily! Sorry I read this blog on my phone as a repost from Johnathan hence my comment was addressed to him! I’m also a pharmacist – which is part of the reason I started to write my blog – to distance myself from trying to give myself advice and just concentrate on me as the “patient” if that makes sense?! Anyway! Keep posting..really refreshing 🙂 x

        Liked by 1 person

        • Hi Helen, I gathered it might have been a mistake – not to worry, still really pleased you like it. Yes I totally get what you mean. It’s odd being both a long term patient and a healthcare professional! Keep in touch! I will be looking up your blog too 🙂

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  2. After my husband had oral cancer he had to find a ‘new normal’. Life would never be the same again – he can eat maybe 5% of the food other people can manage with ease, and his mouth feels dry and horrible all the time, because of the permanent effects of his cancer treatment.

    But it can be possible to find an acceptable ‘new normal’ once you let go of trying to get your old life back (& that you’ll never eat a bacon sandwich again)!

    Heraclitus of Ephesus (c. 535 BC – 475 BC) was a Greek philosopher, known for his doctrine of change being central to the universe. He said “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.”

    I pretty much hold to that! Look forward, not back.

    Liked by 1 person

    • Yes, Cathy, that’s a great quote. I do love the Greek philosophers! I have been thinking lately, that these people in my post probably just need leaving behind as I have become much more brutal in my dumping of unhelpful “friends” and have found lots more much lovelier ones now 🙂 Adapting to change can be so hard can’t it and sounds as if your husband has had to come to terms with some horrible after effects of his treatment. Thanks for sharing this and best wishes to him and you both, Cathy.

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