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. 

Severe M.E. Awareness day: Thunder clashes in my brain

Severe M.E. is truly a living horror (or as many describe it, a living death because of the severity
of suffering it causes). One that truly no one else can imagine. I will say it again, a picture can't show what severe ME is, a video can't, seeing it every day as a family member can't. It truly is impossible to imagine the severity. 

ME is a severe illness at all severities but mild ME didn’t remotely prepare me for how bad it has got at times, nor has that truly made me aware of what its likes for people so much worse than me. So please take the time and listen to peoples words. Please understand the amount of energy and time it takes for people with Severe ME to try and write and educate, and also how many are unable to despite how desperately they want to. 

Severe ME can smother every light of a persons being. It suffocates it and can trap someones personality inside. I am not the girl I was. With lack of energy comes lack of ability to express it. You think of the obvious things, I can't go out, ride horses or play hockey, but I also can't sing along badly to music. I can't spend too much energy laughing. 

ME is a very poorly recognised illness at any level of severity but even more so for those severe. Doctors will see very few severe ME patients in their career, maybe only one and they will often not recognise it. About 25% of ME patients are severe, although that has a huge range in severity itself. 

Severe ME day is on the 8th of August, the birthday of Sophia Miraza who died of ME. It is to raise awareness of those suffering with it and remember the many we’ve lost. 

Here is a poem I've written about Severe ME (which next month I’ll have had for 3 years):

Thunder clashes in my brain, 

There's a storm at sea in me, 

It goes by the name of Severe M.E.

Crash. The first wave hits,

Its the exhaustion,

A word that pales in comparison. 

My bed has become quicksand,

As my limbs move, it seeps over my body, Gripping me and holding me hostage. 

Pain consumes my being,

Every type you can think of somewhere in my body,

It's a hammer, a knife, a deep ache and a throb. 

PEM creeps up to attack from behind,

I dared to do too much,

Now I will suffer an unknown time. 

My head pounds,

Squeezed like a vice,

My brain rattles inside. 

My thoughts float around in endless despair,

Stuck in time,

I’m confused, but all too aware. 

Light pierces my eyes,

Sound echoes around my head,

Scent suffocates me.

I'm trapped in the bars of this cruel disease,

Where restrictions are so tight,

I have so little energy to try to win this fight. 

Drowning underwater,

The gasps for breath,

I long for one where I'm free,

Yet the torrent continues,

Every symptom hits like a wall,

I can't continue anymore,

I ache to fade away,

Shut my eyes,

For a better life, I pray.

The lights go out,

For me, that's a relief at last,

My body can attempt to recover,

As even my nightmares are an escape,

I will walk pain-free,

Monsters lurk but not the one called ME.

Yet I wake up the same,

Do it all over again the next day,

A cycle I can't break out of because,

Thunder clashes in my brain,

There's a storm at sea in me,

It goes by the name of Severe M.E.

This life is like a tightrope higher than you can imagine...

How can we walk across it and balance all that we need to? Physically, mentally, medical treatment, trying to live and do what we can, and family-wise. 

How do we balance doing anything vs PEM? Activity levels and resting (or being completely unable to do any activity) vs muscle loss from lack of movement. Medication to relieve symptoms vs side effects. Illness vs its comorbidities.  

It feels impossible and there is such a long fall. That is ME (and many other illnesses). 

We all make mistakes in life. Some big, some small, it’s how we learn. But no matter how many catastrophic mistakes I make with ME and pacing I can’t seem to learn much because I remain in the same impossible situation. Walking the same tightrope with the ability to tumble further than I could ever imagine. 

I am really struggling at the moment to balance the different aspects of my life. 

This isn't something new but it's really getting to me at the moment that I truly can't win. 

My illnesses all need different management that all contradict each other.  How do I prioritise which of these debilitating things to try and help?  “if you don't use it, you lose it” but if I try to use my muscles I lose the little functioning I have. I've had to accept knowing I'm losing it. 

How do I balance my mental health vs my physical health? And it isn’t as simple as just letting one of them win. Leaving my mental health to suffer also affects my physical health as emotions are physically draining. But neglecting my physical health and doing too much leaves me in a worse of mental state. 

Being bedbound has negative effects on so many areas of physical health but there’s no choice about it. 

POTS can sometimes be helped by movement, subluxing joints need stronger muscles to support them, and the longer I lay in bed the more it happens, but I'm not physically well enough for physio. 

Gastroparesis isn't going to be helped by eating my meals at a reclined angle and being immobile but again there's no choice. I'm unable to even try to move around. 

The need for medical appointments vs the crash they bring. 

Sometimes it's the classic 'given an inch, takes a mile'. Not deliberately but because we have to. 

We make all make mistakes in life. Some big, some small, it’s how we learn. But no matter how many catastrophic mistakes I make with ME and pacing I can’t seem to learn much because I remain in the same impossible situation. Walking the same tightrope with the ability to tumble further than I could ever imagine. 

M.E. and my identity

I'm Katie, I’m 18 and living with Very Severe ME. I live my life in one room, always in my bed.
Not leaving it for months at a time. Everything, literally everything, happens from here. 

As you can partly imagine it affects all aspects of life. Although I’m not sure you can know just how much.

I first got properly ill at 13 and from there have lost more and more of my life and being. My friends. My education. Hobbies. Sports. Joy and happiness. My identity. And the experiences you could expect a teenager to have. Parts of my family have drifted as they have been forced apart by lengthy hospital stays and the requirements of my care. Family who live further afield and can’t visit nor can we. And guests in the house are far too much for me to cope with. It isolates not just me but my whole family.

There is not an inch of my life or how I live that ME has not affected. 

The more I lost the ability to go to school the more I lost my friends. But that was on them and their choices to start with. Teenagers argue and fall out anyway. And then when we’re ill we’ve pretty much all experienced accusations of faking. It’s a hard combination. I’ve wondered why I either wasn’t good enough, what my illness changed for them, or how they didn’t know me well enough to know I was always wanting to do everything I could. The same when it comes from relatives or beliefs it’s in our heads, exaggerated or made up. All those ridiculous things we are told.

It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we are saying. Don't believe in us. Relationships are ripped apart by this. And they have a lasting effect on us, what we perceive as our self-worth and new relationships. And it happens a lot.

Aside from that even those I’m still friends with and would love to talk to or see I’m unable to due to my health. It has gradually trapped me and hidden me away more and more until it’s like I have ceased to exist in the outside world. Neighbours never see me leave the house, because I don’t other than in an ambulance, school people haven’t seen me there in years. My school years have passed now with no qualifications. I’m housebound but can’t even interact with my whole household. No family dinners, movie nights or outings.

My identity was my passion for drama, education, and having fun with friends. My love of riding horses, hockey, the sunshine and outside. Enjoying shopping, dressing up and doing my hair and makeup. Spending time with family, young cousins and family friend’s children. Always being busy and having something to do. I miss it all hugely and have gone through so much grief as a result.

But I have gradually gained a new identity, new friends, and new joy. My life is so unbelievably different but despite the horrific symptoms it’s not all awful, there are small pieces to find in the mess of it all. And perhaps my identity now is more meaningful. 

My identity is my writing and voice about this illness and experiences. It is the strength it has taken to get through these years and be here. It is the power when I stand up to health professionals and fight for what I need. The ability to advocate and metaphorically stand strong. But it is also my strength in my weakness. The tears I’ve shed and the support I’ve needed. Learning to be vulnerable and rely on others, be a team.

And when I say everything happens from bed that includes some nice things. Crafting and starting my own little small business, yes, I need a carer to help but it’s something I never did before. And creating my platform and sharing my story.

My friends are powerful sufferers of this illness who are better than the ones I’ve lost. I’ve known true support and care. I am in awe of them and their strength. Reminded every day why I write and why I share on social media. I’ve created stronger bonds with some family due to the level of care and interaction. 

ME and all it comes with has ingrained itself into my life in a way that will last long after this illness does. 

Some may take this to say my illness is my identity. Or the idea that we want to stay ill for some unknown secondary gains. It’s not. It’s just affected everything including my identity. Perhaps it’s not even the illness but just me. I’ve changed my identity as I’ve adapted to my situation.

My life has drastically changed because of ME. But I’m Katie, currently 18 and suffering, and I believe I will get to live again one day.