‘Long-covid’

I can’t afford to talk about this much and I’d appreciate it if no-one offload to me about their own feelings on this. It’s just too much for me, as someone who had a virus and then never recovered.

But I want to say something, briefly, about the news that clinics will be set up for those experiencing ‘long-covid’.

Man, what a mess. We shouted so loud, to try to avoid this, but they have never cared enough to listen to us.

I hope these clinics are a darn sight better than the CFS/ME clinics tend to be, and that those who are in need of this support are treated a darn sight better than we ever were or have ever been. Not just by the medical professionals, but by society and the media as a whole.

My support goes out to all those affected who are in need of these clinics, and my support goes out to all those who’ve gone before and walked the path of post viral fatigue syndromes.

Sending a massive hug to everyone ‘feeling it’, whether they’re here because of long-covid, M.E, post-viral fatigue syndrome or whatever else brought you here.

The Baby Thing #2

It can come out of nowhere. And even though the effect isn’t quite as dramatic or devastating as it once was, it’s still very much there.

I suppose you could say I chose my health over a family of my own. I don’t consider it to have been much of a choice, but I suppose it was; a choice that others facing childlessness did not get. It was a decision based on circumstances that are beyond my control.

And because I had that choice, reaching a conclusion that so few understand, my childlessness often feels like it’s Less than other people’s childlessness*.

For all my husband and I know, we could physically have children. So many others with my health condition have become parents. But I reached a different conclusion to them. I know without any doubt that this is the right thing for us. My M.E. effects my life is such all-consuming ways.


*OF VITAL IMPORTANCE: I am under no illusion that other reasons for being childless are life-altering and devastating. I am not in any way attempting to compete or start a competition. I am merely being brutally honest about my own experience, which is that of being childless as a result of the impact long-term illness has on my life. I have access to a counsellor who is keeping me grounded whilst allowing me to offload about how unfair my situation may feel.

DISCLAIMER:
I have decided to share my experience because I haven’t come across anyone in the same boat who is sharing publicly and I hope it makes me and others feel less alone.
My posts on this topic may be muddled, sporadic and messy. That’s still how my head is on this.
This is a very sensitive topic for me, and for many others. I won’t accept any unsolicited advice on this topic at all. Insensitive comments will be deleted & accounts will be blocked.

When leaving comments, please be mindful that others with my particular chronic illness have reached a different conclusion and have gone on to be exceptional parents to some of the most caring, empathetic and wonderful children I have ever met.
There is no right or wrong. Please be careful when making blanket statements about your own views on parenting with M.E.

Ripple Effect

Sending support and understanding to anyone else with an awareness of how their health might impact those around them.

It can feel like quite a weight to carry.

It’s not us that is hard work though. It is our health.

To know people need a break from your health is hard because there’s very little you can do about it. You can’t just turn around and say “Okay I won’t be ill this Thursday so you won’t need to worry about me/help me”. And I don’t get a break myself. I’m too unwell to pretend to be better than I am for the sake of anyone else.

My husband and my Mum are kind of a team and I’ll go to stay with my parents’ for a “change of scene”; that also allows him to have a break and my parents some time with me. That’s where I am now.

There is so little anyone can do to alleviate my symptoms. That’s hard for any parent or spouse or loved one. So if they can help practically, I let them. It isn’t always easy, but those around me say that if that’s all they can do to help me, that I please let them do it (where I’m comfortable to.) It’s for them as much as it’s for me.

I struggle when those around me are sad over my health during periods when I am experiencing relative wellness. Partly because I don’t feel sadness myself; I feel joy and gratitude. So I can’t understand their sadness as much.

But I can understand their sadness during times like this; when the symptoms are much more gruelling, when my quality of life has lessened, when I myself am sad some days.

At the moment I feel no/little guilt for others being upset and sad over my health. At the moment I am aware that it is not my fault, that I have no let anyone down. But the guilt does come. And when it does I need to work to separate my health from my self. A task and a half when energy and cognitive function is below par.

I know there will be others who ‘get’ it. 🧡

A Decade of M.E.

I have awarded myself this massive gold star because one week of M.E. symptoms is too long, never mind a decade. I have survived and I deserve a giant gold star for that!

I had so many things that I wanted to say about my progress and my triumphs and the ways I’ve adapted to life with M.E. since September 2010. I was adding to the draft blog posts here and there (as is the way I blog.) And then I woke up on 31st August in a really bad way.

I never imagined, even a couple of weeks beforehand, that I’d spend my M.E. anniversary so close in severity to how things were for me back then.

And yet here I am.

I have come on in leaps and bounds my friends, and I could measure my progress in the unconventional ways of the chronically ill; being able to peel the lid off a new carton of milk, walking from one room to the next without much thought or strain, being able to brush my teeth more often than not, being able to pull open the kitchen door myself, mostly making it to the front door in time when the doorbell rang and I was already downstairs…

And whilst I always savoured those things and was so grateful for them, it still sucks that they’re not achievable right now. It’s been a long old slog these last few weeks.

I wanted to mark me surviving 10 years of M.E. in a way that showed others that a good life can be moulded around your health. And while I wholeheartedly believe that and am proof of that, I just don’t have it in me right now to say those words.

For what we have to face with this condition, we all deserve to celebrate or mark our anniversaries with cake and treats and balloons.

I strive for authenticity here. I’m not sure how I feel about the phrase ‘Toxic Positivity’, but I know that I don’t want to be ‘that’. Glossy, filtered, carefully-scheduled posts that brush over the darker side (or reality) of chronic illness, have never been my way.

I think this is well and truly my normal now isn’t it; this life with M.E. Well crumbs…

10 years ago, on 10th September 2010, my life with M.E. started with my first medical appointment to investigate why my vision was suddenly out of focus and blurry in a way that couldn’t be attributed to my prescription. It’s never improved.

I would make it through the next three weeks of September 2010 until my life simply stopped. It was completely and brutally turned upside down. A lot of people experience a gradual and slow onset of M.E. I had the opposite. I couldn’t walk. Could barely communicate. Went on to need to be spoon fed. Needed to have my hair cut off. Was wheeled from my new ‘bedroom’ in the dining room to the toilet.

By the 18th November 2010*, we would be told it was Chronic Fatigue Syndrome (or perhaps Addison’s Disease but they didn’t bother testing me for that until 2019!)

“Have a quiet Christmas and see how you are in the New Year” were the Neurologist’s parting words.

And yet here we are.

We are the most resilient and tenacious of all the people, my friends. Don’t you ever forget it.

This setback is gruelling. Week 5 and the improvement is minuscule if there at all. My husband assures me I’m able to hold a conversation more easily and the fact I’m more aware of my suffering shows that there has perhaps been some progress. At my worst I have little idea of what it is I’m enduring.

I’m all for being my poorly body’s biggest cheerleader as it tries its best to function. But it’s hard not to declare it an absolute arsehole at this point.

Patience is something I have learnt over the years. I need to put that in practice now. Clinging on to hope (and him.) So often that’s all we can do.

*Yes that is a very quick diagnosis for this condition.

Notes to myself

• “I want to be better than this.”

Well you don’t always get what you want. This is how it is right now. Feel how you feel; you need to acknowledge the sadness and disappointment and even the fear. But then we’ll regroup. And we’ll try to find peace with what we cannot control.

• “I wish I wasn’t this ill!”

Wish for something smaller; more attainable. Wish for fresh coffee. Warm toast. Fresh air. Clean sheets. A shower.

• “I can’t do anything right now!”

Not exactly true young lady. You just can’t do what you want to do or what you feel needs doing. There’s a difference and it’ll help to remind yourself of that.

You can hold his hand. You can mostly get yourself to the toilet. You can rest. You can keep calm. You can have short conversations with your mum. You can keep things in perspective.

• “I can’t do this.”

You can. You will. And my darling, you have no choice.

The only choice you have is in how you respond.