This will be the first time I’ve published any content directly relating, and somewhat recognising, my disease. I think that it is important for readers to know and for me to admit, because my illness is my most vulnerable area and I’ve never felt the need to put into words how I feel and struggle in case others attack that side of me – a side you’ll learn already attacks itself.
“Charlie, your test results tell us that you’ve got M.E.”
When the girls at my secondary school were finding their cliques and trying to get noticed I was doing the opposite. Aged eleven I was starting to feel different, but everybody was. Bodies were developing and with blood suddenly beginning to escape our bodies at random times nothing seemed impossible or unmanageable. So, how my body felt never really registered as abnormal – because in your pre-teens what is?
It started off small: the stairs to class became harder to climb, mother nature stopped visiting me once a month, rooms were either way too hot or too cold and sometimes my feet and legs would turn blue and go numb. I got headaches. Then it was migraines. Then the lights in a classroom would blind me and two minutes later I’d be on the floor completely collapsed. Sometimes having wet myself because my whole body would black out.
First-aiders at the school demanded that I get back to class and face my ‘anxiety’.
Teachers couldn’t care as long as I was quiet and didn’t disturb the lesson.
Within six months I couldn’t spend a full eight-hours inside a classroom and I didn’t even know why.
Doctors did, eventually.
Anybody who got a second of air space had a different opinion, doctors included: brain tumour, depression, diabetes, cancer, anxiety or Crohns. They were closest with the latter. My big bad wolf is closely related to Crohns, cousins really.
Why haven’t I said my diseases name yet? Because you probably wouldn’t even know it. I can’t be mad, I didn’t either. I was so clueless that when my doctor said those two words I was actually relieved. I was just happy that there was a reason, a condition and, you’d assume, treatment. Turns out the government pump more money into a cure for male pattern baldness than they do for eleven-year-old me who couldn’t stand up.
What prescription was I given? Sleeping tablets, an order to connect with other sufferers and a minimised timetable. He said: “Your body can’t cope with full time school, you need to listen when it’s telling you something. Right now it’s telling you that if you don’t slow down you will get more poorly.”
At twelve-years-old I was diagnosed with a condition that I wasn’t directly prescribed treatment for so why would I take it seriously? Commonly known as ‘Chronic Fatigue Syndrome’ I argued that nothing referred to as merely a ‘syndrome’ could really put my life on hold. So, I pushed on.
I walked to classes when my legs didn’t want to move until my right foot turned in because I was losing mobility overall.
I stared at white boards until words didn’t make sense and the light was blinding.
I collapsed outside of classrooms. Vomited in bins. Chucked packed lunches. I lived off painkillers and fought with the first-aider who told me that it was all ‘in my head’. It isn’t by the way.
It’s in my stomach where the natural chemicals and antibodies are imbalanced.
It’s in my blood where the white cells are ‘deficient’ on a good day.
It’s in my spinal fluid that swells.
The lymph nodes which protrude from my body.
The muscles in my body that deteriorate to the point of being wheelchair bound/semi-paralysed.
Poor circulation resulting in lack of temperature control, ie. either freezing cold or fever.
The pressure on my brain which causes memory loss and ocular migraines.
Heart palpitations and low blood pressure.
Photophobia/hypersensitivity to light and sound.
Frequent tendinitis due to muscle deterioration.
Pressure on brain to the point of causing hallucinations, severe memory loss and disorientation.
My immune system, or lack of it, doesn’t work to the point in which I’m currently prescribed a treatment most commonly used on cancer patients pre-chemotherapy to try give my body something, anything, to get out of bed in the morning.
That doesn’t sound like it’s in my head anymore does it? It wasn’t in my head when I couldn’t shower myself, wipe my own bum or walk down the stairs.
Just because I don’t have an epi-pen, diabetes kit or a diagnosis that you see fundraised for during ad-breaks doesn’t make my disease any less real. It just makes my isolation feel lonelier. My bedridden days harder. And relapses more difficult to explain to those who do try to care.
“I’ll be okay”
I may be angry at those who deny my disease but I’m angrier at myself, for the months I pushed when I was just twelve. I didn’t want to slow down. The doctors, though diagnosed, weren’t helping – medicine wasn’t that advanced, but thank god the bald men were getting hair treatments, right? We saw specialists, spoke to other sufferers and really did cut back on my daily activities. But, M.E. doesn’t care about that. M.E. didn’t care that I hadn’t kissed a boy, that I wanted to continue playing sport or that I wanted to see more than hospital walls and my bedroom.
I pushed, turns out M.E. pushes back harder. Two years bed-ridden with my mother for company (she quit her job to become a full-time carer) taught me that. Two years. Don’t just read that, let it sink in. I sometimes say it so flippantly that I forget the gravity of that fact.
Relapses: “But you always look so healthy?.. Surely it can’t be that bad”
I’m classed as a high-functioning sufferer, after recovering from my two-year relapse I slowly found my way back onto my feet with home tutors, painkillers and lots of tried and failed techniques. Specialists were spoken to and I began to actually listen to those symptoms that I now recognise as warning signs.
A relapse can occur from one of two things: over-exertion and/or an infection. If you’ve got a ‘common cold’ you can bet I’m not seeing you for a fortnight – and don’t moan about it to the woman whose body really would collapse from what is merely an inconvenience/slight ailment to you. You won’t get any sympathy, because most of you don’t give me any until I’ve wasted my precious energy justifying my disease.
Six weeks ago I was ‘functioning’ pretty well, gym five times a week and balancing my third year finals. The mention of a relapse by my doctors was just laughed off by myself, I was dropping weight ridiculously fast and vomiting twice a day but I was starting my days in the gym and ending it at university in the evening.
My university career had once been interrupted momentarily by my M.E. and other than one other hospitalisation I hadn’t been doing too badly. This had left me feeling comfortable, no longer afraid of those bed-ridden memories but positive that vomit never ruins my day.
An ambulance was called by a specialist nearby after I rang up in a flood of tears at 7AM because my legs wouldn’t work and my tummy wouldn’t stop over-working. I had gone to sleep sick and woken up back in the body that imprisoned me all those years ago while covered in my own bloody sick – quite literally, bloody sick.
In less than twenty-four hours my body went from completing a 6K dog walk to being strapped down in a darkened ambulance because my eyes couldn’t handle the lights. I vomited over ten times in the waiting room and had to be wheeled from scans to tests all the while wondering how long this relapse was going to pause my life.
I was hooked onto an IVF drip and I didn’t walk unaided for four days, let alone use the bathroom or wash. Science and medicine is moving forward but my body, like others, can crash faster than science cares for.
M.E. and me
During my first night on the ward, once my housemate and mom had gone home, I just lay there. The severity of the situation just hit me. I’m no longer a clueless teenager, I’m a woman. I’m old enough to think further than the pain and look on to my life.
How many relapses will I suffer? How would I ever carry a baby? Who will love a woman they will sometimes have to be a carer for? Will medicine catch up fast enough? When will I be able to just say M.E. and people will get it?
That first night I wheeled to the disabled toilet and wept, I mean really wept. At twenty-one I don’t want my mom to have to wash my hair because I can’t hold a shower head or dry myself.
My mind turned to Lynn Gilderdale whose infamous suicide broke my heart after M.E. left her unable to move, swallow, talk or eat – some days the disease wouldn’t even let her recognise her own family. Lynn lived her life communicating through sign language, surviving off tubes and blogging about wanting to end her life.
Most recently twenty-one year old Merryn Crofts died last year after three years bed-bound from the disease, her weight dropped to six stone at the time of her death. 25% of sufferers are bed-ridden at any given point in time. The reality is that many who suffer severe relapses never return to a full functioning lifestyle.
Though severe sufferers such as Jennifer Brea, creator of award winning film Unrest, comfort me. I’ve spent all the time since my diagnosis finding strength from blogs and online diaries but nothing has touched me more than her film.
Where this leaves me…
Since my diagnosis nearly a decade ago I have suffered only two severe relapses: one lasting two years and my current relapse is due, with medication, to last at least three months. How did this make me feel? Lucky. I’d be luckier if I wasn’t ill at all, but I’m lucky enough that my body (so far) seems to recover from relapses while others do not. This does not mean my health is rarely an issue, every small infection or common cold causes me to worry and relapse slightly – but my body can handle it.
On a bad day I hate my body, I hate the confinements of my disease and worry about future relapses that I may not ‘bounce-back’ from.
However, overall I am positive. Positive that my body has only suffered two severe relapses in one decade, positive that despite my low immune system and the side effects of that I live a happy and active lifestyle. So active that most reading this won’t have ever realised I was poorly.
Whenever I’m poorly I read others stories and feel comforted, so why not add my own? I’m also tired, shock (little M.E. humour), of hiding a disease that’s hard to explain but then getting angry when people don’t understand.
I want other sufferers who may be relapsing right now to read my acceptance of the disease, I haven’t hid any of the gruelling side effects but I am telling you that most of the time they’re merely background noise because most of the time I am in remission.
My first relapse left me wheelchair bound, underweight, unable to walk and I didn’t recognise my own family. Whereas medication and a less severe relapse has this time meant that my symptoms are managed to a point where I would class them as moderate.
During relapses I want to be able to comfort myself with the fact I’ve only ever done what’s best for my body while living my life. I want to enjoy my health instead of grieving it when I’m bed-bound. There’s always the possibility that one relapse will hit me too hard but also the chance that I may never suffer another. So, I choose positivity until I haven’t got any left.
Every day I plan my life around management and most days I live without symptoms of the disease. Management is not the key to remission, my most severe relapses are testament to this, but it does help.
I drive. I am just months away from completing my university degree. I date. I exercise up to five times a week – but don’t hold me to that. I can walk. I can run. Most of my friends are unaware of my disease.
This relapse isn’t permanent and there’s every chance the next one won’t be either.
My comments section is open to all sufferers and those supporting us. If you wish to talk privately then feel free to email: firstname.lastname@example.org
****** UPDATE ****
Remember that inconvenient infection during my final degree examinations? Basically, a small infection kicked off a giant response from my immune system and triggered an M.E relapse. Hospitalising myself in the process and dangerously teasing the possibility of delaying my graduation. Spoiler: life wasn’t all honky-dory after three months.
After my March hospitalisation the doctors in the city wanted to monitor my blood results frequently, as the crash had been severe and often adults who relapse don’t recover as well as children with M.E.
All I knew was that my body could do everything I needed it to again and though my blood results weren’t improving fast I was feeling better. That was all that mattered to me. Relapse over, right? Wrong.
Life (from the outside) was seemingly on-track and I was living independently in a flat next to the beautiful canals in Leeds city centre and frequently sipping bottomless cocktails with ‘the girls’. I graduated with a First-class degree this summer and landed my dream job as a Junior Researcher.
It didn’t matter that my body hadn’t fully caught up yet because I didn’t have time to slow down. What twenty-one year old does? On the outside life was perfect, my insides would hopefully catch up.
But, the night sweats began. The glands in my throat were swelling up. I was coughing up blood. These things aren’t quite normal and definitely weren’t healthy. Something wasn’t right.
So, during a routine M.E appointment I mentioned it, mostly so that I could hand-on-heart tell my mom I hadn’t ignored the ‘warning signs’.
After five minutes and a quick look at my throat a referral was made to St James (Leeds) Oncology Department for three reasons: (1) symptoms such as these must always be checked, (2) my blood cell count was rapidly mutating with each test and (3) persistant vomiting from my medical background left me vulnerable to irreversible throat damage.
To the outside world life was going perfectly and my hospital stay months before was an already forgotten blip. The doctors knew different.
Cell counts, benign tumours and (okay) a little tiredness…
The months that followed my March hospital stay were full of appointments across four different units: immunology, oncology, ENT and general practise. Specialist doctors spread across Leeds discussing my blood work on a fortnightly basis.
It was obvious my body wasn’t coping – but what was triggering the extraordinarily high white blood cell count and low blood pressure? M.E. is a mystery but my symptoms were new, consistent and deteriorating. This type of ill wasn’t the norm, not even my norm.
Finally, three small lumps were located in my neck – where the March infection had originated.
Biopsies revealed my lymph node glands on the right side were ‘reactive’. I went from a diagnosis of reactive cervical lymphadenopathy to needing further investigations. The cells around the lumps were changing – they needed to be surgically removed and tested.
Though the tumours within the glands were ‘benign in nature’ they were harvesting two types of bacteria. Bacteria that were (and still are) living in my throat and attacking my body, more importantly my M.E.
Two surgeries and one full recovery (pending)…
There wasn’t much left to do other than wait on a surgery date and remove the infected area. I was given ten days to prepare myself, inform my dream job and build up some courage.
Unfortunately, one surgery turned into two after my neck started to resemble a tree-trunk and an emergency trip back to the ward found that the infection had (disgustingly) filled my throat with puss.
Puss that later exploded out of my throat while trying to put on socks – just as traumatic and repulsive as it sounds. You read correctly: after a week of swelling my neck split open and puss continued to quite literally squirt out of my throat (in true horror movie fashion) until I was sedated for operation number two.
**Queue the woman in the bay opposite mine understandably screaming before alerting the nurses.**
Christmas crash diet
Since the operations my immune system has faced (and lost) against three infections, all of which have needed emergency medical attention. Most recently I faced the threat of staying in hospital over Christmas after my body rejected food for twelve consecutive days.
My blood sugars dropped to 2.5, my body was rejecting water, I couldn’t walk and I was pretty fucking hungry.
The new year already has numerous appointments scheduled to investigate further what to do next. My body seems to be stabilising and I’m going to be working with the doctors to keep it that way.
Though I’ve dropped over a stone and a half since my operations, due to treatments, infections and not forgetting the twelve day non-optional fasting, my health finally seems to be stabilising. Friends and family are busy reminding me that since my diagnosis at aged eleven I’ve only had one other relapse/period of long term sickness.
These last few months of ill health aren’t my normal and it will pass.
However, for now, as long as the bacteria is attacking my lymph-nodes my body will be more prone to infections and my immune system will be weakened. January 2019 is all about strengthening my immune system and deciding what (if anything) needs to happen next.
2018 may have included three hospital stays, two operations and a lot of needles… But, I’m going into 2019 with a supportive family, understanding friends and bosses that truly care about my health before anything else.
The new year for me signifies a team of specialist doctors working hard, a stabilising relationship with my health and a greater understanding of my own recovery.
(There is a number of reasons I’ve chosen to share this online, partly because the site was in desperate need of an excuse to blame for my online absence and partly because I find it therapeutic both putting my experiences to paper and also because I can’t expect understanding without creating awareness.)