Share a story – Clare

Hi, I’m Clare and I blog over on and am also active on Instagram as @SmilingClare I’ve had moderate, bordering on severe M.E. since 2005 and have recently acquired additional diagnoses of Postural Tachycardia Syndrome (PoTS) and hypermobility.

I was absolutely delighted when Alice got in touch asking if I’d write a piece for the Smile for ME newsletter, unfortunately due to an influx of hospital appointments (and my terrible memory!) she had to drop me a message reminding me about it. (On a positive note I got that delighted feeling all over again…although with a side order of embarrassment!). So although this isn’t the piece I would have written all those months ago, it feels more relevant.

As I write this after four months of “unprecedented times” the world is slowly starting to return to some semblance of “normal”; people are returning to work, going out for meals or drinks and shopping for non-essential items for the first time in months. Okay, so I know things out there still aren’t normal; there’s the socially distanced queuing to get into places, the requirement to wear a mask and who knows what else but after four months of everyone having a glimpse into life within four walls it’s a big change. And I can’t help but feel nervous, and a little bit jealous.

Nervous because as the world returns to normal, my life will also return to what is normal for me; regular hospital or doctors appointments, the majority of the rest of my time still spent within the four walls of home. But still, I will have to venture out into the world again. A world which has changed immeasurably since coronavirus first appeared earlier this year; the vast majority of people have gained an insight into what it’s like to be housebound, you now have to queue outside shops meaning it can take twice as long to do a simple shopping trip, remote working and education has become the norm and so much more.

There are so many things which have changed, some for the better but others just make the idea of going out that little bit more scary. After spending so long without leaving the house at all I’m wondering how much any little trip is going to take out of me – I used to have a good idea of the post exertional malaise I would suffer following a medical appointment or even a walk round the block in my wheelchair but now I have no idea. If I did go out to a shop in my wheelchair would I even get in the shop before I start feeling unwell? I only usually manage an hour out of the house; that’s the amount I can manage with minimal post exertional malaise, or at least that’s what it was prior to March anyway. While the queuing system is understandable and I appreciate that it keeps us all safer, I can’t help but wonder if it means I’m going to have to give shopping a miss for even longer, simply because I don’t have the energy to both queue and shop.

And then there is the jealousy. Back in March when lockdown began I realised that actually lockdown really didn’t affect my life; apart from cancelled hospital appointments, increased difficulty in talking to my doctor, and the change in the amount of people who were at home with me there was no difference. I spent 90% of my life staying at home due to M.E., this just meant I wouldn’t spend the remaining 10% of time going to hospital appointments or taking the occasional trip out for an hour. I would be at home 100% of the time. In March the majority of people were forced to do what I had been doing for fifteen years: spend 90% of their time at home, but they were still luckier than I in that the remaining 10% of their time could be spent doing essential shopping or exercising outdoors, not spent waiting for medical appointments. I realised that my life is basically always what others would consider lockdown.

There was even a tiny bit of jealousy back then, as I saw what everyone else was doing to keep themselves occupied, to maintain their social lives while at home I was jealous because I couldn’t do half of what they were doing. A simple short phone call, let alone a long video call, requires a significant rest after it. Blitzing the house clean, well some days you’re lucky if I’m clean! In one way we were all in the same situation, yet in another there were still stark differences between what being stuck at home meant for each of us.

And now as the world begins to return to normal, that jealousy is increasing. It almost feels as though I’ve become chronically ill all over again: those thoughts and feelings of missing out that I dealt with all those years ago when I first got ill have returned. I had accepted the way my life is, I was content with what I was managing, happy celebrating the little things I achieved each day. But somehow this period of lockdown has erased all that. Once again I have been reminded of just how restricted my life is due to this illness, and I’m back to longing for things to be different.

I’m not saying I was always perfectly content with the way my life was prior to lockdown, because inevitably there were times I still wished I could do more, and things could be different. But I didn’t think about those things numerous times a day, it wasn’t what I chose to focus on, not like I did when I first became housebound, and not like I find myself doing now.

I’m sure I’m not the only person feeling this way, and I’m sure that given time we will adjust again, we will get back to the level of acceptance we had before all this began. We will be content with what we do manage each day, and while there will be days when we wish things were different, they will be fewer and further between than they currently are. We just have to hang in there.

Clare x