Bedbound?

I think it’s really important (or perhaps the responsible thing to do) to differentiate between being in bed because that’s what’s best for my body, and being in bed because my body cannot physically leave it*.

I try to be quite literal in my writing but as no two of us experience the same thing, or mean the same thing when we use the same terminology, there’s room for interpretation.

The relapse remains, but November has brought with it a return to that element (or perhaps illusion) of choice.

I now have the choice of getting out of bed. My body still needs bed rest and I feel too unwell to be anywhere but in bed, but I CAN physically leave my bed, slowly get down the stairs, and lay on the sofa.

I can’t be out of bed for long and I don’t feel well enough to be doing anything but laying on the sofa but the choice is there.

While the ability to get out of bed is there again, it isn’t something I should necessarily be doing very often.

I shouldn’t, but I can. So I want to!

This is where it gets frustrating. I have to consciously make the sensible choice. Boring? Perhaps. Necessary? Yes. This is how I have to live my life.

I’m saying this because there are many people with M.E. who do not have this ‘luxury’. They cannot leave their beds at all. It would be wrong to pretend my life is the same as theirs.

*With help I can get to the toilet.

“You just need to de-stress Darling!”

People like me are often told to remove stress from their lives in order to allow the body to reach the optimal state within which to heal.

Cool. Seems straightforward. And it’s absolutely right.

But a lot of the people suggesting this don’t have bills to pay, mouths to feed, or responsibilities beyond their own recovery and healing.

Getting a child through 14 years of school seems is a rather stressful experience if my parents’ experience with me is anything to do by. (I was good as gold but never, ever wanted to go and would strop like nobody’s business at them having the audacity to follow the law and send me every single day!)

People like me are also often told we need to remove ‘fear’ from our lives or our bodies will remain in fight or flight mode. For example, a lot of us now have incredible fear around medical appointments as a result of unsavoury experiences in the past. We’re told we simply need to let that fear go or it’ll hinder our overall progress and recovery.

I get it. I understand the science. I have a basic understanding of the workings of the Autonomic Nervous System (ANS) and the Peripheral Nervous System (PNS).

But forgive me if my best intentions, my mindfulness, and my breathing exercises aren’t enough to keep me from spiralling whenever, for example, a brown envelope* comes through the letterbox.

Remove all stress from life? That would mean ceasing to have anything to do with the DWP and the U.K. benefits system. Nothing is more upsetting or stressful. Even when it’s not bad news, I’ve been known to become so distressed by a letter from the DWP that Mr Tree Surgeon had to cancel work for the day. But I need the money or I have no home, no water, no electricity, and worst of all no rainbow chard or parsley for Delores and the guinea pig gang.

Rowan and Juanita, two of the guinea pig girl gang, investigating my cup of coffee

At my most severe, my brain and nervous system were so out of sorts that I would be reduced to panicked tears if asked whether I wanted rice or pasta with my dinner. I’ve come a long way since then. I get that it has to be worked on. But please don’t belittle others who have different barriers in their way when achieving the most peaceful and stress free life possible.

I get it. I do. It’s just in practice it’s not so clear cut for the majority of us. And our mindset is not what’s holding us back. Our circumstances are.

In theory, it’s spot on. In practice, allow for us to be affected by the modern human experience.

We can’t all afford to go off and live in a cave away from technology and stress. Delores’s vet bills have seen to that!

(You might have picked up on the fact that I’m not a fan of any implication that someone with chronic illness has sole responsibility for their recovery or rate of progress. I cannot stand flippant remarks about how someone merely needs to do x, y and z to reach their optimal wellness.)

*In the UK most correspondence from the Department of Work and Pensions comes in a brown envelope.

New members of the club no-one wants to join

Hi I’m Anna, I’m 31 and in September 2010 I got a virus and I never got better. I was diagnosed with ME/CFS not long after. It’s been a completely life changing experience.

My life goals are now along the lines of wanting to get to the point of being able to shower daily, to taste fresh air frequently, and to build upon my already exceptional collection of pyjamas, slippers and bedding. I mean look at these Bobby dazzlers!

In 2013 I started the tea party for M.E. (nicknamed ‘Blue Sunday’) a small-fry fundraising event that means an awful lot to me and many others. When so little else is accessible to us, the virtual and real life tea parties have raised over £20,000 for M.E. charities and connected us with people going through the exact same thing we are.

I wanted to send solidarity to everyone who finds themselves here as a result of ending up in the ‘post viral syndrome’ boat this year. And I’m sending support to all those who’ve been there already, and who are feeling a whole mix of emotions surrounding this years events. There are too many of us who can relate, sympathise and understand, but in truth this year is incredibly complex for us on so many levels.

I’m never sure I’m the best person for newly diagnosed members of the M.E. community to speak to. Because I’m not better or anywhere near full health. And I know from experience that it is hard to be exposed to ‘Old Timers’ in the early days of your own illness.

With regards to supporting those who are new to the M.E. diagnosis, I hope that all I can do is offer them the hope that life can still be good.

Life will be very different but it can be so good.

And even though I’m still affected in the ways I’m affected, I’ve made so much progress. Progress in ways we never even dared to even think about. For now we’ll brush over my current relapse shall we…

Newcomers are often not ready to hear what I have to say, which is ultimately “Grieve and Accept, knowing that those things will interchange repeatedly”. I can understand that that’s not what one wants to hear.

I remember how it felt to speak to people years in to their own M.E. journey after my neurologist implied I’d only be ill for a short while longer. And it didn’t feel good.

Newcomers want, as I did, a quick fix. Simple steps they can take to reach their goal of regaining their health and becoming their old ‘true’ self. There is no quick fix or magic pill. Kick, scream, throw your toys out of the pram. Do whatever you have to do to come to terms with that fact. But realising there is no easy way out is something we all must come to terms with.

‘Recovery’ and progress (or perhaps more accurately this ideal of Recovery) is, to me at least, about moulding a life around your new limitations.

My suggestions?

  • Rest. You might think you are but I don’t mean reclining with your feet up while watching Netflix. I mean true and proper rest with as little stimulus as possible. No reading. No music. No television. No conversation. Cognitive rest. It can be a game changer but it takes far longer than any of us would like it to, to see the results.
  • Accept. I was incredibly sure of myself and believed I had reached that sought after thing. But I know now that it comes in levels and stages and that it fluctuates constantly. Feel the frustration but then let it go.
  • Mould your life around your limitations. Prioritise the things that bring you most joy. But know that this is not always possible and anyone who tells you to do this without adding a disclaimer about Privilege isn’t being realistic or fair on you.

I don’t feel quite so at peace with all this every day. It comes and goes, and it will for sufferers old and new.

I never want to come across in the way that the people that I shared the CFS/ME clinic sessions with did. They were very different to me. In age and severity. But the biggest difference was that even only a few months in, I was able to start the process of accepting my new restrictions (I believe in part because I was just so unwell that I could do little else but lay in bed) and they, for their own reasons, hadn’t been able to do that. It was very hard to experience their resentment and anger at their own health. Sometimes you might need to shield yourselves from others who are having a hard time with their health.

But while we’re here, you should know that what Old Timers like me are feeling this year is quite complex. Please know that that is not your fault. It’s just hard for us, on multiple levels. Because while the whole world is aware of you and rallying to help alleviate your suffering, they haven’t wanted anything to do with us. Other than to gaslight us, prescribe treatments that have done irreparably damage to our bodies, and spread mistruths in the mainstream media. And then there’s lockdown, which we’ve had to live in for years and years and years, while everyone else cracked on with their lives.

It’s hard to see you suffering. Devastating actually. And it naturally takes us back to the early days of our own illness. So like I say, it’s complex.

You’re so welcome here. There is a wonderful chronic illness community full of people whose lives have taken unexpected and unpleasant turns. So many of us are wanting to help in any way we can.

We couldn’t be saved. But we hope you will be.