Where is my health/what is it doing at the moment?

It’s improving. That’s the big thing, and while I explore all sides of my health (in an ME sense) in this post, please
understand my immense gratitude for that. Please also see the paragraph on privilege further down. 

I am doing things I have dreamt of for years, that in the moments of laying still in the dark and suffering so hugely, I desperately hoped I’d be able to do one day. And honestly, it’s hard to believe it’s happening. 

I am still in bed almost all of the time. I still have to do all toileting in bed. But with the help of lots of specialist equipment, I can hoist from bed to the shower, where I lay flat, and a carer showers me (meaning the whole process is flat). Many of my washes are still strip washes in bed though but often due to other factors as a shower in this way doesn’t really use much more energy. The amount of time I sit in my wheelchair fluctuates, as it always causes some form of PEM so it has to be done in a week that is otherwise mostly empty. I need to rest before and have space in the diary to crash after. So sometimes I don’t sit in it for months, sometimes I sit in it 3 times a month for many hours. I still sit in it reclined but I am closer to upright than I used to be, maybe even close to a 60-degree angle. But sitting in the wheelchair in particular has huge consequences for me lasting several days which leaves me not functioning to the same level or able to do as much as usual in bed. The classic increase in symptoms and a decrease in functionality. The positive is, though, that this increase in symptoms and PEM generally is not as severe as things used to be. 

 

Many (mostly non-sick people) measure improvement just by time out of bed but it’s not just those out-of-bed things but life in bed that matters so much as well. My quality of life is so much better than it used to be. I can sit propped up by my bed at a reclined angle for almost all of my waking hours. I can have the blinds open and in the evening my lights are set to 15% which is huge. At one point I wore sunglasses even with the blinds closed and if I had light it was one single lamp as dim as possible. I’m able to spend many hours each day crafting, occasionally watch a bit of TV (every couple of weeks normally as it does increase symptoms), and scroll as much as I want on social media generally. My symptoms are managed so much better by (many) medications. I struggle more with cognitive activities but less than I used to. I write most of my own emails and do some of my admin now. I still struggle with things like reading, audiobooks don’t work for me and like I said I don’t watch TV often. Many people I know can watch TV or listen to audiobooks but not craft and that shows just how different things can be for people. For me, it generally uses much less cognitive ability to craft than those other things. 

Something I need to address in this is privilege. I have been kept alive by carers, whilst it didn't change my ME level as I physically couldn’t and can’t do the things they do for me it does literally keep me alive. I make a distinction on that as I know some people need care to stop worsening because ME wise their body doesn’t tolerate making food or getting to the kitchen but they have to push to try - I couldn’t have pushed to try I physically was unable to walk or move to get to the kitchen for food etc. I have been supported by my family financially. I have received benefits and received support from family in applying for those benefits as it’s not something I was well enough to do. These things have allowed me to access private healthcare that has given me many medications which have drastically improved my quality of life. These medications aren’t necessarily to treat whole illnesses but reduce symptoms of them which improves my quality of life. And then it’s even a privilege I can tolerate these medications as many can’t due to things like MCAS and medication sensitivities. Private healthcare has given me helpful advice and saved me from horrific treatment by medical professionals that continued to make me progress in severity for years. 

And luck. That’s the other big thing. People can do everything I’ve done, even have not been made worse by harmful treatment, and still not improve. 

Something else to mention is the risk of worsening. It’s something I have to consider, regardless of if I want to or if it’s negative, to try and prevent it. This could be from trying to do things, I am at a point where to see my improvement I need to take some risks where I have no clue if they’ll crash me and no clue if the crashes will compound to lower my baseline more permanently. It’s also not just my choices that put me at risk but my other health conditions. I have been in and out of the hospital since August due to gastroparesis and being reliant on an NJ tube which constantly fails. Every time it causes severe symptoms with a lasting effect. Not only due to the environment of the hospital but also dehydration and going cold turkey on almost every single medication. It’s terrifying that it’s not even in my control. 

I think the thing that really sums up the improvement is that when I am doing these things I dreamt of, like going to the garden centre a couple of weeks ago, the impact and PEM from that is less severe than my baseline was a few years ago without having done anything. 

I am extremely grateful for these changes and improvements in my health and I hope I can be lucky enough to have more, and that I can prevent worsening, I hope this for everyone with ME and other chronic illnesses but change is needed systematically for that. 

Being Reliant On The Unreliable

A sentence I’ve repeated many times to various people that sums up my thoughts on tube feeding: how terrifying it is to be totally reliant on something so unreliable. 

Due to gastroparesis, I am completely dependent on a naso-jejunal feeding tube. This has been the case since August last year. All of my nutrition medication and hydration go through this flimsy little tube that likes to kink what feels like every five minutes. The longest a tube lasted for me was a month and a half, the shortest was when it flushed in endoscopy but by the time I got wheeled back to the gastro ward nothing could flush through it. 7 tubes in under 6 months And most of those tubes were in short succession. There was a further 2 occasions where It kinked but the tube was saved at the hospital by repositioning it. 

Through all my health issues this has been the hardest thing mentally of all. The tube can absolutely control my life, being on constant alert for any signs it might be about to stop working due to a kink or block, jumping at the sound of the pump alarm for an occlusion because of all the times that sound is the start of a trip to hospital and it terrifies me. As minor as it may sound it’s the self-confidence issues and missing seeing my whole face. Feed leaks and exhausting medication rounds. Endoscopy after endoscopy when sedation doesn’t even work for you is awful. The uncertainty of making plans but unsure of if you’ll end up in hospital instead because most of the time it really happens with no advance warning. 

These pictures are some tube feeding moments from the last six months. From day one having the pumps on my pole to med rounds and throwing up tubes, PH strips showing it’s flipped into my stomach and hospital trips for replacements. Pretty tape and the giving sets entertaining my cat. And the days where thanks to my tube keeping me alive, and helping my health thanks to properly absorbed nutrition, I can do makeup and have a nice day. 

Being tube-fed is so challenging, it’s scary, it’s unstable and like living on a knife edge in terms of if it will cooperate. But tube feeding is also keeping me alive and that’s something I’m so grateful for this tube for.

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.

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. 

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. 

Reflections on 3 Years of Severe ME

 A picture of me at the start of my 7
month admission 3 years ago

 Today 3 years ago I became bed-bound with Severe/Very Severe ME. 

For three years I have laid in bed,

For three years I have needed care,

For three years I have been trapped in one room, in bed, for months at a time,

For three years I have been unable to walk, 

For three years I have needed medical help but have been traumatised by the experiences, left worse than before,

For three years I have wondered when I will get better.

Another year of ME. Another year of suffering. Another year of waiting and needing a cure or at least some treatment. Another year I’ve missed out on living. Another diagnosis to add on. 

I often feel like I’m just counting the days. Counting the events I miss. All the things I can’t do. Wondering how I can catch up in life. A depressing outlook I know. It’s not something I think every day but it’s natural for it to cross the mind occasionally, particularly around anniversaries. 

It's hard to know what to think when it comes to anniversaries like these. And it's hard to find words to express those thoughts. It's all so much to process, the illness itself but also the trauma of the treatment I went through. 

Naturally, grief is one of the big thoughts. I grieve the life I could have had without illness and even the limited life I was living with moderate ME. 

I feel anger at the world, and at the professionals who had the wrong type of impact on my illness. 

I have guilt for how this has not only affected me but also my family. 

And I have questions, so many questions! Why me?! But why anyone?

I also feel proud of my survival, of what I have learnt and how I have grown.

I am grateful for the support I have and the friends I have made and getting closer to family. How I’ve learnt to value quality of life (limiting symptom severity) over productivity and learnt to pace. I’m grateful I have started to make improvements for the first time in this period. 

There's a lot of dual emotions when it comes to chronic illness: 

I have learnt both how fragile life is and how strong and resilient I am. 

I have a lot of feelings about the word resilience and others like bravery. I'm not choosing to go through this, many times I crumble under the weight but I think resilience can still manifest even when you're being forced through something. It is not just being able to bounce back but also to adapt in the face of adversity. 

I have felt so isolated at times and at others so surrounded by love in this community.

I have lost so many friends through this and lost opportunities for social connections yet I've found even more powerful connections online. 

I have felt so silenced but that has blossomed into sharing so much and advocating. 

Medical professionals made me quiet, I lost my voice and felt belittled. I have made myself loud by sharing my story and advocating for better understanding.   

I have felt so hopeless yet so hopeful 

At times I have felt I will never get better, and at others I've been so sure I will. I have seen the power that pacing can have when privilege allows for it. And I have started to improve myself. 

I have been put through untold hell and whilst I am not out the other side yet I am emerging. It has taken every ounce of strength I have to survive. More than I ever knew I could have, more than anyone should ever need. But I've got it. 

A year ago I wrote my post 'It's all for that 15-year-old girl' The words are still more current than I thought they would be. It is often still a struggle, it remains hard. 

”For now, I’m rebuilding myself away from them - for her, for the me that exists now and for a future where I hope to never experience this again”

I am still rebuilding myself and I will always carry on for her. 

The words that will always be true and that I'm glad I still remember

“They may have power but we are stronger than them.” 

And we are. They took away my power for a good while there but I fought for it back, and now I’m stronger than ever.