Chapter 2 - GET

Graded Exercise Therapy is a physical therapy that involves increasing activity, and this was one of the hardest chapters of my story. 

The first time I threw myself into it. I believed it would help, and I did everything I could to help myself and my health, only it was harming me. I was given five different leg exercises and told to increase by 5 repetitions every week until 30 of each exercise every day, then I was told to add 0.5kg of weight every week to those 30 repetitions of 5 exercises. I was told to do this regardless of how I felt. I got worse and worse until lockdown made me pace (without knowing that’s what I was doing or needed to do). I didn't see that doctor again because the situation changed, but she was at one stage consulted for her opinion and said, “if she had done what she was told, she would be cured by now”. Which was a punch in the gut after I did what I was told and only got worse.

I initially became bedbound after an accident caused extreme pain and loss of movement. Intense rehab started, and I again threw myself into it, trying my absolute best, but gradually it reduced my capacity not just for movement and physical things but also for mental activity. I continued to be pushed to the point of passing out every single day in intense physio sessions. From pain, from exhaustion, from POTS and blood pressure. As a child, I had no choice; I couldn’t defend myself from it, and neither could my parents against doctors' threats. I was forced. 

This is one of the most traumatic periods of my life and still effects me. I was trying my best at making myself worse.

GET is finally not recommended. It was a long process that had many delays, causing harm to many people. The NICE guideline 2021 said do not offer it to people with ME. It found that previous evidence recommending GET was actually of low quality. 

That being said I continued to be forced to do GET/GET equivalents under different names even after the guideline changed; they just called it something different. I have heard of this happening to many people under names such as “pacing up”. In my opinion, the NICE guideline does not go far enough or offer enough protection to ME patients, which needs improvement. 

Chapter 1 - Early diagnosis

 Chapter one starts with me a month after turning 13. I get shingles and I don’t recover. I go from being an active 13-year-old, doing some sport every day and spending the rest of my time working hard at school and having fun with friends, I become someone who can hardly walk to the sofa and feels zombie-like. 

Getting a diagnosis of ME was a long process. It's always easy to think “what if” or wonder what different circumstances and events would have led to, however, I truly believe that an early diagnosis could have made so much difference. I even saw how close I was to it. 

I’d been given a post-viral fatigue syndrome diagnosis about 2 months after having shingles and I paced without knowing what pacing was. But when it continued longer and I seemed to improve before getting worse (when I stopped pacing because I thought it was better), we didn’t understand that it wasn't something new; I was experiencing different symptoms of the same thing. 

The doctor I saw at that point, who conveniently didn't want to put a label on what I was experiencing because she felt a diagnosis was harmful, encouraged and pushed the absolute opposite of pacing. I followed what she said and I got worse. 

Without a diagnosis, which I completely believe the previous doctor knew and withheld, I was later given a misdiagnosis instead of my symptoms being recognised as Very Severe ME. I was given harmful advice and treatment yet again, this will be explored more in the next chapter. 

My point is that diagnosis is needed. It’s needed for patients' clarity, for them to be able to do what’s best for themselves, and for doctors to understand what’s happening. It’s not “label collecting” to have answers about your health. 

Early diagnosis protects patients. It enables them to protect their health by pacing, which can help with symptom management but, most importantly, help avoid disease progression. It helps patients avoid harmful treatments and get at least some support (I don’t say the support they need because it’s not available. 

Patients shouldn’t have to work this out for themselves like I did with the help of my family, the internet, other patients and eventually consultants. 

 May is ME awareness month. 

For those that don’t know, I’m Katie, I’m 20 and I have had ME since I was 13. I became bedbound with ME, losing the ability to walk, stand or even sit upright at the age of 15, which I have still not regained. 

I have really struggled to decide what to write this year or what topic to choose. The sad reality is that there are just too many areas of ME that need awareness. It’s overwhelming. As is the fact it often feels like we’re talking to a void. We raise awareness and people already aware are the ones that see. 

Despite that, I want to talk about it. And I don't want to choose one area when there are so many desperate ones. So throughout this month, I’m going to a series of posts: the story of M.E.—different chapters of my journey. I hope to share some of the various areas of ME that need attention. 

This is honestly quite an ambitious plan from someone still bedbound with ME as I hbut I hope I can share at least some of what I want to (though I have a very long list of ideas that I want to share all of)! 

I hope you stick around to see what I have to say. 

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.