In my head I wonder...

Mentally living with this cruel illness can be really hard. Aside from the physical pain and suffering the symptoms cause it’s had so many knock on effects. Losing friends, losing my education, my activities that brought joy. Having to fight day in day out for basic support, medical attention and access. Not having enough to occupy or distract me from the thoughts that go round in my head. They swirl around and overwhelm me. 

I end up wondering why it’s me suffering like this and what I did. The reality is I know I did nothing other than have a rubbish immune system and get shingles. 

But I’m so tired. Tired of fighting. Tired of wondering. Tired of the suffering this community endures. 

So here’s a ramble:

I’m in my head. 

And in my head I wonder… 

I wonder what you are thinking of me, whether you are judging me. 

Thinking I don’t want to get better or want to thrive. 

Thinking I somehow want this life. 

Or want the invisible attention. 

I wonder about my worth. 

Whether you see me as less because of my illness.

…I do. 

Clearly my friends did. 

I wonder why they walked away. 

Didn’t know me well enough to know I was trying my best. 

I wonder… 

Wonder why my life is like this.

Why everyday is a fight for a different type of support.

Why I'm constantly let down and neglected. 

Wonder what I did to deserve it. 

Why it’s me. 

How others go on about their lives. 

Making new memories, acheivements and adventures. 

Wonder why my life got put on pause. 

Wonder how time slips away yet doesn’t pass quick enough. 

I’m in my head. 

So deeply lost in there. 

I’m so tired. 

So tired of wondering. 

The thoughts spin.

The world I'm immersed in. 

Just my thoughts to occupy. 

…I wonder.

You never get used to it...

“Well you have to get used to it at some point”/“aren’t you used to it yet?”. Medical professional often use this as a reason not to use symptom management because “if it’s chronic when will you come off it”, or as a reason not to provide accommodations, access needs or support because “when will you learn to live without it”…

And it gets said by others, friends and family too, often because they are bored of hearing about our illness or supporting it. Or even with the best intentions just frustrated we aren’t better and this thought will help them. The “surely it’s got easier to live with though” or “you can’t still need that support”. It comes after the “are you better yet?”. 

Chronic illness is exactly that, chronic. But it’s not the type of symptoms subtly lingering in the background that you can forget. You don’t get used to the debilitating nature of symptoms, at least I haven’t. The longer it goes on the harder it can be to cope for me.

Yes to some degree I have physically adjusted to my symptoms. More so that my body uses less energy for its reactions. My symptoms are still the same, it was horrible then and is horrible now. 

My body has adjusted to living in the dark, I don’t realise why others struggle to see in my room but I’m not used to the light sensitivity, the pain of it or the fact that I have to live in the dark. 

I’m used to it, in that I don’t remember what it was like to be healthy, to be pain or symptom-free. 

But I am not “used to” my symptoms in that the effect has gone. Not used to how relentless the PEM is and how it hits like a brick wall. Or with how much the illness fluctuates and my symptoms change day to day. In a flare, I can forget how my baseline felt after so much time and how endless it becomes, just like I’ve forgotten my healthy body over the years. I’m not used to this illness and its symptoms, and I’m not sure I ever will be.

The people who don’t want to provide long-term accommodations for chronically ill and disabled people are often the ones who expect the same accommodations for their short-term symptoms. 

Why do they think it’s so easy for us to get used to our symptoms? 

Is it because we carry it well? Or that it’s invisible to them? Or is it to make them more comfortable with our suffering? 

Would those people with acute symptoms get used to it if their symptoms became chronic at the same level of severity? Or do they just get used to ours and are impatient with our access needs? If only they knew…

When improvements happen at snails pace and deterioration can happen in an instant…

It’s like watching in the third person as life snowballs and the symptoms build. The months and years of self-management, pacing and trying desperately to improve, the small increments it took, crumble as life slips away. 

Recovery, and illness, are not linear. A statement said time and time again but that does not ease the pain it causes. It’s a winding road with many twists and turns in the path ahead, and many plateaus and long-winded bits, but also those already conquered. We can forget how far we have come. Because you can come such a long way and still have a huge climb ahead of you. But it isn’t just the climbs… it’s the falls. The little trips or straight falling off the edge of the cliff.  

Some are lucky and don’t have that and make regular improvements, likely very slowly, or in some cases remission even if it can take years. Some people only deteriorate on their downhill path as it slowly happens, their progressive illness overtakes them, and some people climb the mountain only to drop off the edge of it.

@diaryofachronie_ did a fantastic post recently about the heartbreak of deterioration. The internal conflicts. The grieving, torment, wondering, dreaming, hoping and soul destruction. And it really is soul-destroying. 

It may happen slowly over time, but many times it can be triggered truly in an instant. How it can continuously happen quicker than we can keep up with or process. 

I get both, two years of gradual decline and in the last year the big ones I didn’t recover from were mostly viruses.

There are times I took a chance for joy and it bit back. Or got too excited with possible activity levels and bit off more than I could chew. Those times I could blame myself. But it’s the cruelty of the illness. 

All after it took so long to get anywhere with pacing.

Living with low quality of life is incredibly hard. There is a lot to grieve and wish for. Then simultaneously either declining or desperately trying to hold onto the last of our quality of life. The balance of trying to avoid deterioration is terrifying. Wondering how soon you will be doing those activities again whilst also knowing you may be doing even less eventually. Watching your remaining quality slip away is horrifying. I’ve felt frozen in time watching it happen. Wondering how far it will go before it stops. One after another it’s overwhelming and all-consuming. No time to catch up and accept. 

Constantly trying to adjust to new limits, sometimes the deterioration happens before we can even process it. Hit when coming up for air. 

We are pushed by health professionals, family and friends, told to take all sorts of risks and given suggestions of harmful therapies. And then scorned for not doing what they want and blamed for getting worse when we follow their advice or are forced into it.

Living this life and deteriorating is hard beyond belief to cope with.  And when there's nothing you can do other than try and float to stay above the surface of the crashing waves, the water that takes every attempt to drown us - we survive, in the face of it all.

It's not just what you "can" do its what you should do, what you need to do survive or have quality of life

It's not a black or white you can or can’t do something situation with chronic illness and disability. It has a grey area (like most things but people seem to forget that about this). We know not everything that is possible to do should be done, you can commit a crime but you shouldn’t. You can choose to do something highly dangerous, but should you? 

With chronic illness and disability, there is a lot we can’t physically do. Then there is the stuff we could push to do that would be incredibly harmful for us. So “should you do this?” “is it okay for your health to do this?” would be a far more appropriate question than “can you do it?“ or the accusatory “but you could do it?”  Instead, we are often jumped at for not doing things we in some way possibly could.

The reality is not doing an activity with a harmful effect is what allows us to do another activity. What allows quality of life. And other people should remember that nothing happens in isolation. Having to give up every other activity, to do one thing, is not sustainable. We have to prioritise the things we want to do as they can’t all be done, which means not doing certain things.

There are things I can’t do at all, things I can, and things that trying causes devastating harm, things I may occasionally push for despite knowing it’s irresponsible, and I suffer big time but on occasion may be worth it. I can’t stand at all (and yes I have been pushed to try, I won’t go into the trauma, I definitely can’t stand), I could physically be hoisted out of bed each day, it would be horrible and leave me physically unable to do anything else because doing it once does that and I lose my quality of life.

It’s not negative to say no to doing things to protect your health. You don’t have to “test” the harm it does repeatedly, or ever. You know your body and that’s what should be trusted.

What I choose to do should never be questioned by someone else. Never be suggested I’m not trying hard enough because I’m choosing to respect my body’s needs and instead choosing other activities. Or that because I may choose something that brings some joy instead of something someone else wants it to be, sees it as me “wasting” my energy. ‬  My choice is to do everything I can to not get worse so that I don’t end up with more things added to my physically impossible list. A choice of survival. 

What I choose to do should never be questioned by someone else. Never be suggested I’m not trying hard enough because I’m choosing to respect my body’s needs and instead choosing other activities. Or that because I may choose something that brings some joy instead of something someone else wants it to be, sees it as me “wasting” my energy. ‬  My choice is to do everything I can to not get worse so that I don’t end up with more things added to my physically impossible list. A choice of survival. 

5 years of ME and counting...

Five years of ME and I don’t know what to say - because there is so much to say about ME and Severe ME but never enough words for it all. Never powerful enough words. There’s the fight for diagnosis, the gaslighting and abuse from medical professionals, the debilitating symptoms and all it takes.  

ME has so many sides: severity, fluctuations, symptoms, changes, management, people and community. The community is one of the rare positives. 5 years ago I woke up ill one day (shingles) and never got better. And over those 5 years so much has happened.   

I’m someone who has spent the majority of their illness journey, and consistently the last two years, getting worse. I’ve bounced around the severities a bit, started housebound, then Mild for a short time, housebound again, Moderate and then Severe, 24/7 bed bound and I now fulfil the NICE Very Severe ME category. Deteriorations mostly due to GET and inappropriate treatment, plus almost instant deteriorations like colds, covid, vaccines and the accident I had.    

It’s taken my schooling, GCSEs, A levels, teenage years, friendships, parties, sports, hobbies, good experiences, joy and it’s even taken types of bad experiences away from me, but ones that would have taught me things as well as ones I was glad to escape, if only it could have been in a different way.  It’s taken away my ability to walk, sit upright, see people, my independence, ability to do my own personal cares or have a hug. It’s taken my sense of self and many times the light I had inside me. It’s ripped me to shreds and torn me apart. That’s mentally and physically.  

The term “Mild” ME is a trick given it’s a huge loss of functioning, still unimaginable to most. ME is a severe illness. I’ve has 5 years of daily debilitating symptoms including the year I survived school with it. But the last two years have been on another level. I’ve had to face an unbelievable amount, a constant torrent of symptoms that I’m not going into on this post.    

It’s given me pain, suffering, trauma and mental health struggles. Then community, better friends than I had and appreciation for smaller things.  

The last 5 years have been incomprehensible to me let alone others. It has been overwhelming and terrifying. How much of a landslide PEM and this illness is as my life has snowballed out of control until I've ended near the bottom of the scale (though most definitely not the very bottom). Trapped in this bed and trapped in my own body - fighting to live but getting worse regardless. 

One thing I can say is that in these 5 years, as my health has been on a mostly downward decline, my acceptance has grown. My community and support has grown. The little moments and getting to do activities feel even more special. Those things don’t take away the rest and I can’t say I’m grateful for the illness, I’m very definitely not and would take it all back to feel healthy. But I am grateful for the community and the understanding it’s given me of the world. Grateful that I’ve grown as a person and found incredible people who I value so much. 

It might sound ridiculous to say that my understanding of how to manage the illness has grown when I’ve been getting worse. However it’s in getting worse, this community and finally finding medical professionals that are helpful, that has shown me the truth of this illness and how to manage it.  

My journey with ME and Very Severe ME is unfortunately not over yet, I’m sure there will be many more twists and turns on what feels like an endless road, but it’s nowhere near as long as so many have had.

It’s been 5 years this month since I got ill with ME

It’s been 5 years this month since I got ill with ME. And in those 5 years so much has happened. 

I’ve had to face the crushing weight of these symptoms, feeling like my head is underwater and I’m drowning, the days of having to fight for every breath. Delirious due to the exhaustion. Paralysis, head splitting migraines, muscle spasms and myoclonic jerks. Pain. Light and noise literally hurting. 

Sometimes something suddenly takes me back. I don’t remember what it was like to be healthy, but I remember who I was.

The girl who had only just turned 13. ME has ripped everything away from me, including my sense of self, I’m not the same person.

That person is missing, one of the #millionsmissing

Time has slipped by me whilst also feeling like I’m frozen in it, the clock slowly ticking by. Really it’s that it’s like my life froze and yet time continued around me. With me missing from it.

ME sufferers are known as the millions missing because even at a mild level people are missing so much. I’m missing from the classroom, A Levels, from sleep overs, sports, parties and relationships. But also

missing from my dining table, missing from family days, dinners and the sofa.

The healthy photos are the months, weeks and even days before I got ill. I even had shingles in some of these pictures. And like the lyrics say, that girl is long gone. It’s incredibly eerie to look at them knowing that and how much my life changed and everything that 13 year old was unaware of. 

Unaware of the systematic abuse of this large group of people or the neglect experienced. And then that 13 year old was thrown into that group. Please educate about ME - I was a child (although a child who knew about Cancer,

MS, Parkinson’s, Alzheimer’s etc) but there are far far to many adults with either no knowledge of ME or only harmful disinformation. 

Most importantly, FUND RESEARCH and for treatments. I’ve only had this illness for 5 years (yes only in comparison to others) but there’s been no progression, plenty who have had it decades say the same.

Watch a video I made here 

I never knew about Severe and Very Severe ME or the more severe symptoms people can experience with ME. Neither did my doctors...

ME has a very wide spectrum of severity and symptoms. Many scales don’t go severe enough to reach the depths people experience, leaving out quite a large and definitely important percentage of people. Or they don’t properly distinguish enough between the severities. Which admittedly is hard with such a wide breadth and range of symptoms. But it tends to be the severe end that isn’t distinguished - arguably the people who need clear definitions the most. 

No recognition of the difference between those mostly housebound, housebound, mostly bedbound, and 100% bedbound. Those four generally end up as two categories, sometimes just one! All under the same Severe ME label, making them appear the same severity.  And that’s not to make it a competition but about accuracy. Because if doctors have ever heard of severe ME (and many haven’t), you’re lucky they might think mostly housebound but not as severe as it gets or needs to be recognised. They have to know the severity a patient is at and how to act appropriately!

I didn’t easily find anything that reflected my reality until joining this community. All I saw were things like “what are the 7 symptoms of CFS”. Nothing about the paralysis and the terrifying symptoms, nothing about the people far worse than me, unable to speak or swallow. Nothing to make my Dr understand that this was ME just a severe manifestation, something they hadn’t ever seen before. Instead, I, like so many other Severe and Very Severe ME patients ended up with a misdiagnosis of FND because they didn’t recognise the symptoms as ME - which they think is just fatigue. 

Sometimes I think some people are scared to talk or learn about different severities due to the very real and present fear of worsening. It often feels like many turn their back on this side of the illness particularly when people actively unfollow for sharing the truth. And most health professionals don’t address it or warn people, particularly since many of us ended up Severe due to their mistreatment and GET. 

Even charities fall short, mentioning the effect something has on the housebound but not mentioning the greater effect on the bedbound.

“It is important to realise there’s a severe end to the spectrum of ME and that the average GP may only see one case in his entire life, and these cases are almost unique”  - Dr Nigel Speight

It’s no wonder they are uneducated but they have to learn. And there has to be more of an effort to educate.

So please do talk about the reality of Severe ME. It’s so important because Severe and Very Severe ME patients are often missed in healthcare settings, in research, by some charities, by some of the advocacy accounts with the highest followings and missing most from living. Many unable to speak up themselves or even access this community. The people who need the most support and awareness.  

Help educate, help people understand. Empower ME patients by sharing knowledge. Make your friends, family and anyone, medical professionals if you can, aware and of the true extent it can be for some. 

Had I known three years ago what Severe/Very Severe ME was, the symptoms rarely spoken about that I experienced, my story may have been very different. My diagnosis journey may have been very different. My quality of life may have ended up very different - in better ways. It’s crucial it can be recognised quickly to avoid further worsening. It can be life or death!