2024 Over and Out

This year has been one of extremes. It’s really hard to round it up. The highs and the lows have had my mental and physical health bouncing back and forth. 

If it sums it up, I’m already crying whilst writing this and I’ve only done a total of three sentences. I’m crying because I’m proud of myself for surviving, and I’m crying because I’m traumatised by what I have survived. 

2024 I think has been one of, if not the hardest year of my life. Which given how 2020 and 2021 was for me, it says a lot. 

My health has been split, some of my illnesses have been the best they’ve been in years, some have reached new lows. 

I have had more trips to hospital this year alone than any previous years combined (though at least none of the admissions were as long as the seven month one before). 

An abscess and a lingering infection of it, a bad kidney infection following months of UTIs, just under a four week admission due to no longer tolerating any oral intake in which I got an NJ tube which has led to so many more admissions because my tubes have been very problematic. Six new tubes in four months and a further two times it kinked and needed manipulation in endoscopy or A&E. So many other things, such as family member deaths, care struggles etc. 

But whilst I’m leaving 2024 with a feeding tube, I’m also leaving with an incredible accessible annexe, a beautiful loving cat, still running my small card business @bykatiecards and improvements in the ME aspect of my health which meant I had my first two outpatient hospital appointments (which were the first non emergency trips out of the house) in just under four years. And then I went out and up the road for the first time in over four years. This was a non medical trip in my wheelchair which was just unbelievable. 

And I can say I have survived it. So have you. Im proud of me, and of you. Here’s to 2025

 

Christmas Gratitude

This Christmas has looked very different to Christmases over the last few years. Both in good and bad ways. And that comes with the complicated mix of my health issues where I am so lucky that some have improved and yet some are the worst they have ever been. 

I may not have been able to actually eat christmas dinner in terms of swallowing it but I got to taste it by chewing and spitting which I am so grateful to have knowledge of thanks to this community. I got to be at the table with my family to enjoy the food in this way and when so many christmases have been alone in bed or even in hospital I am so lucky that I got to be sat in my wheelchair with them, to laugh, to talk, to enjoy. 

After the amount of hospital admissions I have had this year I am also simply just lucky to be at home. 

So I’m grateful. Today had the spirit of Christmas, it had family and joy. It was a healing day for a family that have been through so much in the last year. And I’m so privileged for that, not privileged despite but privileged including. Including needing to rest for most of the day, not swallowing food or drink. I am grateful. 

Sending so much love to those who were unable to participate and also love to those who did at the expense of now suffering for an unknown period. 

Thank you to all my wonderful friends who helped make my christmas, and who make me feel loved everyday.

My first time out

A highlight of the year. 

I went out for the first time in my wheelchair, and I went out for the first time in over four years to somewhere other than a hospital. Which even that has, apart from two outpatient appointments this year, all been emergency admissions. 

I cannot begin to explain how huge this is. And many won’t understand how 5 minutes up the road to a postbox and back can be so huge. But to the girl two or three years ago and her absolute physical lowest with very serve ME this is everything. To me right now who has survived so much more than I can even comprehend, this is everything. I have hoped for years things like this would happen again. It’s indescribable to explain the feeling of these things coming true. 

Right now I feel so incredibly lucky. The negatives of the situation that others may think, in a wheelchair etc, and the impending PEM, don’t touch on my happiness. And that is something I wish for more of. Pure joy and magic. 

Though I guess I’m immediately faced with the inaccessibility of the world since I could get near the post box but not to actually put the letter in myself!

I am holding everyone in my thoughts unable to do this, I hope this day comes for you 💗

Turning 20

Today I turned 20. It marks the official end of my teens. My teenage years have had their challenges, a lot of them. 

I got ill at 13, a month after my birthday. 
My 14th I was struggling with depression mainly due to friendship issues which were so bad that day 
I became bedbound at 15 
My 16th was spent in hospital during covid 
My 17th was the last time I saw my old best friend who treated me badly once I got ill. It was spent in bed with awful symptoms. 
My 18th I had shingles 
My 19th I finally felt like things were coming together, yet the age 19 was one of the hardest ive had with constant challenges thrown my way. 

Its been a rollercoaster. But a rollercoaster that I have survived. And there has been joy, good memories and so many wonderful friends made along the way. 

Just four weeks before my 20th birthday I had an NJ feeding tube placed due to not being able to keep any food or drink down. It really looked like I was going to have another birthday in hospital. So whilst today has not been the day ive been imagining it is better than I feared. 

Here’s to my twenties. Let’s hope they’re a lot better than my teens.

Gastroparesis and a new addition

 August was quite the month. It was gastroparesis awareness month and boy was I aware. 

I got admitted to hospital once again unable to keep any food or drink down. Only this time I was already on all the different treatment options and they said there was nothing more they could do. 

Eventually they put in a NJ feeding tube which bypasses the stomach. There was many issues with the first tube so I had to go back to endoscopy another two times but eventually I had a working feeding tube. After being told by every single doctor I saw I wouldn’t be allowed home with a feeding tube the nutrition team consultant came and said that as long as I was tolerating it they would get me set up at home. 

So after three and a half weeks in hospital I am home with a new attachment. I am so relieved to be home but also so overwhelmed. When my GP got me admitted I hoped for a short admission with a solution. I have no clue how long I am going to need a feeding tube for. The discharge plan is to wean me of the tube in the community. I hope its possible. But as the nutrition consultant said, there is no cure for Gastroparesis. Im already feeling very burnt out from dealing with tube things, this is a really rough journey. 

My mental health is a mess, it usually is in September anyway with it being the anniversary of becoming bedbound. The 9th of September will be four years. It is also my birthday on the 23rd of September and that may look very different this year. i’ll be turning 20 and my teenage years will be over, having been ill for all but a month of them. 

Life has thrown so much at me this year and it’s hard to cope with. I really hope things look up from here.

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.