Severe ME awareness day

It is very difficult to understand Severe ME, particularly Very Severe ME. With very severe ME, even on a day like today that has the purpose of trying to understand the stories of the very worst of ME, when we need to hear them, listen to them, learn from them and support those going through it, we can’t as they are too unwell. Many are too unwell to speak, to use a phone. Even if and when people may improve from it, it’s so hard to describe just truly how horrific it is. The time I was at my worst is in a blur. Anything I do remember clearly is so awful and upsetting and is impossible to express accurately. 

By the NICE definitions, I am still very severe but my life is so different to how it was. The scale doesn’t account for the very worst, my health now, whilst not good, is not comparable to how it was or to those worse than I’ve ever been.

The severest of my ME was pure darkness. black-out blinds with black-out curtains on top. An eye mask or sunglasses. 

It was silence and needing noise-cancelling headphones or earplugs. 

It was pain in every part of my body at every moment. My head, my muscles, my gastro system, even pain from breathing. So many different types. Constant agony with no rest. 

It was the presence of people making me worse, even when silent. 

It was a thick fog in my head that thoughts froze in. 

It was a torrent of endless symptoms cascading down leaving no break. 

I wasn’t well enough to wash. At my worst, I was only managing a strip wash in bed once every 10 days. 

I wasn’t well enough to feel bored despite doing nothing all day, no TV, music or books. All I could do was endure my symptoms. 

I wasn’t well enough to be myself. Very severe ME was smothering my personality, trapped under layers of symptoms. 

I wasn’t and still am not well enough to access the healthcare I need. 

I wasn’t well enough to tolerate the care I was dependent on to stay alive. 

Every little thing made me worse so pacing was practically impossible. When you’re that severe with that many factors you can’t control factors that cause PEM. 

So when I hear someone say severe ME, I know it is torture in every sense of the word.

Are you aware as I am?

 Today is M.E. awareness day. And I’m angry, because I am far too aware. 

I am aware when I think about everything I have missed out on. 

I am aware when others show a distinct lack of awareness and I am asked “what is ME, is that tiredness?” I am aware when that person is a doctor in charge of my medical care, when they are unaware. 

I am aware when someone tells me how well I look when they visit me in a dimly lit room where I lay in bed. And after, when the PEM hits and my body breaks I am aware. 

I am aware when my family have to watch me suffer and I see their pain at not being able to fix me 

I am aware in my own pain and suffering, as I endure day upon day. 

I am aware when I watch my friends slip away further and further into the depths of ME. 

I am aware when I remember there is no treatment or cure. When I realise that despite that there’s almost no funding for research. 

I am aware as we beg for better. 

I am aware when I twitter storm and I recount the abusive healthcare treatment I have received in the attempt to stop yet more people going through it. 

I am aware when I feel like I haven’t done enough, because as a sick person I can’t. As a sick community we do our best but can’t. We are aware. 

I am aware when as a community we have to try reassure someone that it’ll get better, that it’s worth staying, even when we’re unsure ourselves. 

I am aware when a patient dies, are community cries and mourns. 

And I am aware that I am screaming into a void. I am screaming my awareness and it’s only heard by others also aware. 

I am aware. All too aware. Are you? 

Hope

To those who saw 

me now and didn’t know my story, or the story of others with severe and very severe ME, I wouldn’t seem like I’m doing better. I’m bedbound and reliant on care to help me with most things. I can't sit upright, stand or walk. I go to the toilet in bed and wash in bed too. 

ME, I wouldn’t seem like I’m doing better. I’m bedbound and reliant on care to help me with most things. I can't sit upright, stand or walk. I go to the toilet in bed and wash in bed too. 

But 3 years since discharge of a 7 month admission following me becoming bedbound I have come so far. 

My quality of life IS better. It might not be good but it’s better. 

I can sit at an angle in bed for most of the day. 

My pain is better managed.

My light sensitivity is better. I no longer need to always wear either sunglasses inside or an eye mask. I tolerate my lamp being on full brightness. 

I can roll over and move my legs. 

I can do crafts. I have a craft business. 

What I hoped for is starting to happen. 

Clinging onto hope can be both so necessary and distressing. 

Hope can be so powerful. It drives my determination to persevere, it provides me strength and fuels my resilience. It is my reason to keep going. To keep fighting. Because I believe there will be better in life for me. Hope is a shining light in the darkness. It has guided me through some extremely tough times. Carrying that hope helps me flourish. 

But hope can also be extremely hard. It can be tough to remain hopeful when the future is uncertain. Particularly when you’ve felt disappointment before. Or fear it. 

Hoping things get better is quite easy for me. I’ll always hope for that even if occasionally I question the reality. Hoping I can sustain the improvement is what’s terrifying. The fear of losing everything again. It’s something I can’t bear to think about yet I can’t live in denial of. 

But to me, hope is not about denying my realities and the challenges I face at this moment, but the belief that I will one day no longer face them at least to this severity. So I have to try and balance all these feelings. And remind myself I will get to live life one day. And slowly that’s coming to fruition. 

I am getting there. One step at a time. Well… maybe not steps yet. But I will get to that point. That’s not even something I hope for, it’s something I wholly believe will happen. 

Needing carers

Needing and having care has been a really hard thing for me to cope with and quite a journey. 

Unpaid care, PAs, direct payments, social care organised care, agencies, self-employed, employed. So many aspects to purely who cares for us. 

There’s so much trust that has to be involved. So much control that we often end up being forced to give up. To them it’s a job for us it’s our necessary lifeline. They can quit being a carer, we can’t quit needing it. They miss a shift and we’re left in limbo. 

Having strangers help with personal care, or even just tidying and making food, it feels like we lose control. Control that we had already lost though. It is not having a carer that has meant I’ve lost control, even if I felt that way at one point, it is the disability that has limited those functions.  

My mum has been caring for me unpaid since September 2020, she lost her job because of it and lost all freedom. That’s something I’ve had a lot of guilt for. She’s done it out of love and necessity. But it doesn’t work for our family. 

Transitioning from that to someone we don’t know is so hard. Particularly after such a long time when we have our routine worked out and know how we want things done. 

But it’s also an incredible thing. My carer has been life-changing for me. It’s been empowering, and freeing. It’s helped my independence because although I’m still just as dependent I have more say in myself about what I do as I have the support to do it. I have control, I’m in charge of my day, and my carer simply enables me. Having the company of someone close to my age who I get on with has hugely helped my mental health. 

For other people who would otherwise be pushing (those who can) it can help their physical health as they no longer have to push to survive. 

But there’s a huge gap of care workers. And I’m still trying to recruit someone for more hours. I have friends trying to make do without the care they desperately need which is detrimental and dangerous. 

To summarise, needing care has been hard, but having care has been incredible. And I am so extremely thankful for my carer. And so grateful for my mum and the sacrifices she makes every single day to care for me.