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.