Freedom in Lockdown

Rather strangely, I’ve liked the freedom of lockdown. How ironic; the very thing that has put restrictions on everyone else is making me feel less restricted. My life is my own in lockdown. My energy expenditure spent on things for me and only me. If I have a visitor calling in for half an hour at set time in the afternoon, my whole day has to be centred about commitment. Even if that visitor is only dropping something off or popping in for half an hour. Now none of that can happen. My days are free. But as hard as it’s been to hear the masses complain about a life at home that I have taught myself to savour and cherish, people are losing their lives to this virus and the inadequacies of our government are too many to list.

On my Good Days I’ve been able to risk baking, for example, because I know there is nothing else I need to do this week or next. In March I even got my sewing machne out. I have only been able to use it twice since then but that’s more than I could risk doing before lockdown, when my energy was needed elsewhere.

The amount of times I’d heard “You’re so lucky you get to stay at home all day” over the years

Most notably, for the first time in a decade I’ve been on the same page as everyone else; universally confined and restricted through no fault of their own. Missing out on birthdays and holidays and exams and all the things we chronically ill individuals have missed out on anyway, only this time, even if our health had cooperated, we would have missed out on them because of lockdown.

Running alongside this though, I’ve also felt further removed from society because, despite accessible measures being put in place, I still haven’t been able to access them. Group video calls anyone? Goodness me they’re very taxing for me. With lovely initiatives like that to try to lessen the isolation, I’ve felt like I still don’t/can’t fit because more often than not I’m still not well enough to join in. My friends have been doing amazing Sunday night Zoom quizzes and I’ve only made it to two despite lockdown having lasted 14 weeks.

But there has undoubtedly been more empathy, kindness and understanding from society in these past months than there had been in the years before. Bearing in mind I’ve had incredible support from my family since being unwell, lockdown has allowed that support to reach a new level. My sister and my cousins had a socially distanced garden get together recently. I couldn’t go because I can’t drive that far or share a car with anyone outside of my own household. And I’m still shielding myself away as much as possible. The virus still poses the exact same risk of relapse to me, even as lockdown regulations ease off. But my sister dropped off a party plate and napkin for me to join in from home! They video called me for 15 minutes so I can be a part of it. I’m hoping this kind of loveliness filters through to become normal when life returns to near-normal in the future.

I have felt so many feelings and emotions in response to seeing the world suddenly become more accessible (in some ways) knowing that Disability Advocates had campaigned tirelessly for such changes, before the pandemic hit, but with no luck. Suddenly, now that people outside of the Disability community need access to education or to be able to work from home, it’s absolutely possible to put those measures in place. Did we not matter as much when we asked for such things? We know the answer is a resounding “No, we didn’t”.

And let’s not talk about the Great Grocery Delivery Slot Saga. As someone who has relied heavily (but not solely) on supermarket deliveries it has been a huge source of stress and concern. Thank goodness for the kindness of friends who added our shopping list to their own order. There have been people who have been reliant on grocery deliveries so years and years who’ve suddenly been unable to get a delivery slot. They’ve been told to call supermarkets to register as Disabled, even if they’re not necessarily more at risk to covid-19. Some have been successful. Some haven’t. Some are simply too unwell or unable to make those very phonecalls. It’s been hard to see, that even as new measures are put in place, we are at the bottom of the heap yet again.

Caution and Controversy

This post has been years in the making. And even after sitting on it for so long and coming back to it to triple check I’m expressing myself as carefully and as clearly as I can, it still feels controversial to click Publish. There is so much more to say about this. But I am being cautious.

Myalgic Encephalomyelitis. Chronic Fatigue Syndrome. Systemic Exertion Intolerance Disease. All these labels are used by the medical world to refer to the same condition; the condition that has plagued my own life for almost a whole decade. I prefer Myalgic Encephalomyelitis, as do the majority of my peers. For this post I’m using ME/CFS.

Too often we see fractures within the ME/CFS Community that are causing incredible damage to the very people who are on our ‘team’. This post was inspired by my increased exposure to those divisions within the Community. Frustrations run high within this Community and we surely have been dealt a dreadful hand. Not only can our symptoms be incomparably disabling, but we are isolated and forgetten about the majority of society and the medical world.

But it feels important to declare that:

An individual’s diagnosis is not their fault.

If you disagree with the label Chronic Fatigue Syndrome being lumped with the label Myalgic Encephalomyelitis, your anger and frustration should not be placed at the door of any individual sufferer.

If you question the authenticity of another’s suffering because they have shared a story of recovery from an illness you believe cannot be cured, your despair at that individual having been given a diagnosis you do not feel to be just, is again not the fault of that individual.

No-one with this condition has an easy ride. Not one person. Those with ‘mild M.E.’ lose 50% of their function. (So yes Mild seems a ridiculous indicator but there we have it.) Each and every single case is completely different and none of them are pleasant.

If you find yourself questioning another’s diagnosis just remember that they were given it by a medical professional. It is the medical world that needs challenging, not that individual sufferer. To be completely neglected by medical professionals and then have strangers on the internet declaring that you can’t possibly have the health condition you claim to have is just so damaging.

I wholeheartedly agree that it is problematic to have such a variety of severities under the same label, but again, no fault lies at the sufferer’s door. I understand and am aware of how damaging and misleading it can be, but again, it is not the fault of the sufferers that this is the way things are.

I have friends who are tube fed. Friends reliant on catheters. I have friends who have made astronomical improvement, within their own individual and unique journey. Friends who sat up again for the first time in years. Friends who can now put one foot in front of the other after being told they never would. I have friends who now live closer to true freedom. Friends who bravely dare to whisper that word, the R word, the word Recovered, that can immediately cast them as outcasts within a community of people with an illness with no known cure. I have friends who have endured Graded Exercise Therapy, which has done devastating and permanent damage to their bodies. Friends who have seen more decline than improvement. And all of these individuals have been given the same diagnosis.

If someone with the same diagnosis as you can perform tasks that you cannot even dream of, it is not the fault of that other individual that you have been given the same diagnosis. I heard recently (April this year) of a group being set up to ‘discuss’ whether a popular social media ‘influencer’ “could really have M.E” because they were able to perform certain tasks. We will come to Exercise and M.E. another day by the way, but for now it feels imperative to post a reminder that, although damaging and surely frustrating to see such disparity with regards to severity, an individual’s diagnosis is not their fault.

We are ostracising vulnerable people who find themselves in a ‘No Mans Land’ of not being ‘sick enough’ in the eyes of some, and not being ‘well enough’ in the eyes of others. We are disregarding the years of all-consuming suffering that they have endured. So you don’t believe they can really have been as sick as they say they were because they can now do x, y, and z? Chronic illness is painfully lonely already, without the ME/CFS Community turning on those who’ve made incredible progress.

With that being said, we do each have a level of responsibility. Circumstances and symptoms vary greatly. We are in no place, therefore, to assume that all others with the same diagnosis as us are experiencing things as we are. And so we cannot make blanket statements about things that may have eleviated certain symptoms or given us some respite and relief. We must not get caught up in the cycle of assuming that anyone suffering to a certain degree must not be trying hard enough to get better. We must not heavily imply that it is mere “hope and hard work” that leads to improvement. I have been exposed to a section of social media within the ME/CFS Community that seems to be thriving on that very basis. I have some pretty strong words to say in response to that but now is not the time.

Each of us can only ever view things from within our own set of circumstances and environments. This will affect our perspective greatly. We must be mindful that we’re not assuming everyone can make the progress we’ve made if they do exactly as we do. I’ve tried different diets. I’ve forked out for supplements. Some exacerbated my symptoms. Some improved them. But eventually my circumstances led to me being unable to keep taking the supplements. That should never be taken to mean I didn’t want to better my health enough. I was recently told to “remove all stress from your life if you want to get better” and see the same level of improvement that this individual had seen. That in itself was quite a stressful experience!

It’s tricky. It’s messy. It’s far from ideal. But it’s the hand we’ve been dealt. For now.

So I’ll say it again for anyone still unsure; an individual’s diagnosis is not their fault. And don’t you dare even imply that their symptoms remain because they’re not trying hard enough, or that they can’t possibly have been as ill as they declare because of the progress they’ve experienced.

Mental Health and M.E.

Okay. Deep breath. Here goes.

I’m currently trying to weigh up whether the benefits of a video call session with my counsellor would outweigh the physical fallout from the exertion and concentration.

Video calls and phone calls are problematic with my cognitive function. The “what have you got to lose” approach doesn’t work here – the post exertions malaise could be catastrophic.

But I haven’t had a session with my counsellor since the beginning of March.

I was one of ‘those’ people who never thought they’d need to seek help for their mental health. And because of the damaging idea that some still hold about M.E. being a psychological illness, I was far from keen to share about going for counselling.

I had my first session in March 2019 and I shared a little in an article published by the ME Association which you can read HERE. When I first sought professional help, what I was experiencing was not a diagnosed mental health condition. It was ‘merely’ a very reasonable response to a very sad and hard situation.

For those new here, 2019 was a toughie mentally and emotionally. It’s the reason I couldn’t host the usual Real Life tea party. I had known for a few years already that I wouldn’t be having children because of the impact M.E. has on my life. But as others around me started to become parents I was suddenly drowning in grief.

And then in November 2019 I experienced a short but very real period of Depression for the first time. (I haven’t actually said that bit out loud yet.) The dam broke, so to speak. Counselling has opened a huge can of worms; almost a decade of M.E. and the impact it’s had on my life and those around me. But my goodness have I grown and benefitted from the process.

But the struggle and the sadness are still there, and I know now that they’ll likely never go away. Counselling cannot ‘fix’ this for me. Two beautiful new babies have joined my friendship group since lockdown began. And my extended family will grow by one in the next few weeks.

So that’s where I’m at today.

IMPORTANT: When I first spoke about this online and asked for absolutely no unsolicited advice, some felt that didn’t apply to them. They reached out privately to share their story in an offer of misplaced hope. Each of our stories and our circumstances are different. Many others with the same health condition as me go on to make a different choice regarding having children. There is no right or wrong; only what works best for each of us as individuals within our particular set of circumstances. Please. No unsolicited advice.

Looking ahead to May 2021

HOW CAN I HELP YOU HOST YOUR OWN REAL LIFE TEA PARTY FOR M.E?

My All-Things-Blue-Sunday notebook open a new page ready to start planning.

I get so few days of being able to ‘Do’ so I have started thinking about next years ‘Blue Sunday’ tea party already.

And let’s be honest, when I say days I actually mean hours or perhaps afternoons (never mornings am I right!) of being able to be productive in the conventional sense.

I want to put something together (a little fundraising pack) to help anyone else hoping to host their own tea party; big or small. Of course the biggest obstacle will likely be being physically well enough to enjoy your tea party when the day arrives. But if there is anything other than that, that I could help with or put together, please can you let me know? Comments or messages via the Contact form are very welcome.

I know it’s a long way away but I thought I’d ask now while it’s still fresh in your minds.

Sometimes people don’t know where to start, and for so many of us, we have been ‘out of circulation’ for so long that a helping hand and a word of encouragement can make all the difference.

Let me know if I can help at all.

The leaflet I amend each year for my own Real Life tea party will be available for anyone wanting to distribute some M.E. awareness info at their own event.

Yet

I was going to say “What I wouldn’t give to be able to go for walk” but that would be me being overly dramatic. When I come to think about that properly, there’s nothing that I can think of that I’d trade for the ability to go for a walk on these two legs of mine. I like my life. It is a good life.

What I should say instead is simply that “I’d love to be able to go for a walk right now.”

Making do with a front step adventure instead. I don’t have the wherewithal to operate my mobility scooter right now.

When I say walk in this instance, I mean just that. Not a scoot or a wheel, but a walk. The freedom of just stepping out of the front door without having to get all of the paraphernalia needed for a scoot. (Blanket, drink, keys, waterproof poncho, battery check…)

There’s a post box four houses down from us. In the ball of excitement that I was when we moved here, I pledged that I wanted to be able to walk to it and back every day as part of my baseline. In October we’ll have been here two years. I’ve managed to walk there four times. Ever ambitious Anna!

In truth, I thought I’d be further along than this by now. September marks a decade of life with M.E.

But what I have to remind myself, sometimes really consciously remind myself, is that for years walking the 2 metres from our front door to the front gate was met with such euphoria it beggars belief. When things were ‘good’ I could do that 6 days out of 7.

Now, I can walk down the garden path to my ‘Garden Bed’ on any day that isn’t my worst.

Garden renovations are currently underway…

I might not be where I want to be, but I’m not where I was. And the word Yet could be important here, and in many other examples where I haven’t quite made it. Yet.

(But I still really do wish I could go for a walk, round the block even, just this once.)