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. 

International day of persons with disabilities

 “Oh you’re not disabled, you’re just ill”. That’s one of the reasons sometimes I struggle to use the word. But the reality is I am. 

I think there can be so much misunderstanding and ableism when it comes to people disabled by illness rather than something like paralysis. From those who are well enough to still walk a bit but also need a wheelchair (ambulatory wheelchair users) to those who are so ill we can’t tolerate using a wheelchair. I have an incredible wheelchair that is the best fit it could be for me and I still can’t use it. And there’s nothing that could be done to make the outside world accessible to me. 

I’m ashamed to admit I’m maybe not proudly disabled. Well, I am, but unfortunately I feel the pressure of society's ableist views on disability. 

For so long I couldn’t bring myself to buy a gorgeous print that said disabled and proud  because of other people seeing it. There’s a presumption that being proud to be disabled means I want to be disabled or I want to stay this way. As many people have already shared, being proud to be disabled doesn’t mean we have to want our pain or suffering.

But I am proud of who I am as a disabled person, proud of who I am with my disability. Proud of my responses to ableism. Proud of that I get through each day. Proud that I can share my disabled reality through Instagram. Proud to be a part of this amazing community, and proud of it and its kindness and solidarity. 

The passage of time...

Six years. Six long years. I wondered last year, at the anniversary of 5 years of ME how I could sum it up, this year I’m left wondering even more. It's so much time to have spent ill (though not as long as many others have spent). 2190 days. 52560 hours. And way too many seconds.

How can one explain the way time passes by in this situation? 

Perception of time is so interesting. Time ticks by, it goes so slowly. The painful seconds, the days I wish to sleep just trying to get through an hour or minute at a time, where I wish for time to just pass when it drags. I feel like I’m stuck in it, an endless abyss. But it is an ever-flowing river of events. An invisible force dictating life. And whilst it goes so slow in some moments it also moves so quickly. Days blur together, time passes and suddenly I blink and another year has gone. Another year lost to this cruel illness. The seasons have passed outside of my closed curtains. 

Time is irreversible and moments cannot be undone once they pass. I know that this, M.E., will forever be in my story, and I can’t undo what’s been done or get these years back. Although I do hope I get to make the most of the rest of my life. And I feel ME will have helped me do that. It is my historical marker that’s shaped the narrative of my life. 

I often think about how it would be easier to know when this ends. In my head, the date doesn’t matter it’s just easier than being left to wonder how infinite this is. Although I’m not sure if it would be any easier in reality. Time is a linear path, it stretches indefinitely and that is terrifying. I’m left contemplating how long this may be my life. When will I will get better? 

Whilst I described the indefinite nature of time as terrifying it’s also freeing, knowing it’s not over yet. I value my future that I’m determined to make it to. To get to experience all the things I’m desperate for. I will make the absolute best of every second. And I try my best to do that now as well. I value the time I’ve got. The little moments. The fleeting joy of the quiet. The days after a bad PEM episode when I feel like I can breathe again after being underwater. When if even for only a temporary time I can look back and realise there has been some improvement and the hope it fills me with. When I think of how proud of myself I should be. 

So I will keep going. Keep spending my time getting by. I will keep looking forward and also experiencing the now. 

Time didn’t stop when I got ill, it’s something that continues. Time is infinite, it keeps moving and so will my life. I will keep evolving with time. And I hope I will improve with time. 

A different path...

Chronic illness means missing out. And it means doing things differently or even entirely different things. It means doing things in a different order. And that’s okay. Actually, it’s okay to do things in any order you want at any time. 

However, with illness, it’s mostly because the choice is taken away from you. That’s why being at a different place or taking a different path matters to you. And that’s why it’s a loss. Making a choice to do something different or at a different time because you want to, is incredibly different to having that choice stripped from you. It’s a huge thing to grieve. 

Desperately wanting to be beside those your age in doing whatever they do at your age is an incredibly hard thing. Especially when there is nothing you can do about it. 

It’s something I’m really struggling with right now. The nature of chronic illness, and life, means we constantly go through a cycle of grief. I can be in the acceptance stage for a while, the majority of this post was all positive and about acceptance when I wrote it a while ago. But things have triggered that grief again. 

I’m grieving for my past, present and future. I’m grieving the 16-year-old me who didn’t get her GCSEs and laid in a hospital bed during that time, and the 18-year-old me who didn’t get her A levels and isn’t going off to university this week. I’m grieving the life I’ve lost, the future that’s different to what I imagined. I’m grieving the loss of relationships, the past ones, the ones changing now and the ones that never get to start. I’m grieving the chance to go out out, have social time, family time, dating, making new relationships. Being a teenager. 

But we find a new path. A new place in life. New people have also made a big difference. The people I talk to now are in similar situations. I don’t talk to many school friends I talk to chronic illness friends. That’s also made it a lot easier to accept my new journey. I’m generally not comparing myself and where I am (not that it’s good to do that anyway, but it’s also natural if you do). It’s also natural if you’re talking to someone about what they’ve been up to and it’s something you desperately want to but can’t do that’s very upsetting. 

I have altered aspirations. But I keep those that I had, my hopes and dreams for if I do get better in the back of my mind. It’s not letting go of that path completely. It’s just hoping I can join that path again further along the line. However this is a difficult mindset. And I’m very aware that although I may recover and be able to do things, my life will remain different to what I had hoped for and I will be trying to catch up. 

There’s nothing we can do so acceptance can be the best thing for me. I don’t have the energy to grieve anymore, it makes my illness worse due to how exhausting it is. But it’s a very fine line. I’ve spent weeks if not months balancing the line of distraction vs feeling my emotions, I needed to be in a physically better place. However this week it’s continuously been added to and has overflowed my cup and I’m really having to feel it. 

I’m someone who would give up everything it’s taught me to have a little bit better health again. But there are things I’m grateful that it’s brought me, this community and friends, more understanding and recognition of struggles. 

Keep going. We can do this. To me, it feels very hard right now but I can do it and I know you can too. One step at a time.