How it Feels to be Left off The List

I have ME/CFS. A poorly understood neuroimmune condition that is often triggered by and exacerbated by a virus. With ME we are entitled to a flu vaccine. We have known we are vulnerable but not extremely vulnerable to COVID-19 since the start of this pandemic. Yet many people with ME are not being put in group six or are having to contact MPs, CCG’s and Journalists to get it done because despite letter templates from the ME Association and Action for ME. Despite other ME charities saying we are vulnerable and should be in group six we are an awkward grey area.

In Wales I’d be in group six. In Scotland I’d be in group six. But England. It’s up to our GP’s. ME unaware GP’s. GP’s under a lot of pressure because there are many people enquring about the vaccine and probably rightfully. A multitude of people have been left off the list.

I am one of those people. Despite ME/CFS, EDS,Fibromialga, Chronic Migraines, Occipital Neuralgia, suspected Endometriosis and suspected POTS (largely controlled by migraine meds) my surgery won’t put me into group six. This is despite a bad reaction to potentially having the virus in March. Going from being able to work and climb. Yes I was barely holding it together but I was there. In the office. On the wall. Climbing multiple V3s-4s a session and climbing 6C on a rope, often ticking off multiple 6Bs and 6B+’s.

I went from that. to being unable to walk around my flat without crutches until I started d-ribose. To barely being eyes open and pretending to be functional, pretending to hold it together for 8 hours a day. In a dark room. Horizontal. Suddenly sleeping till midday without an alarm (which I have never done). Increased nausea, my diet has changed drastically and although initially caused weight loss has since caused weight gain since I’ve figured out how to keep my digestive system as happy as possible. Fatigue, head pressure, migraines, brain fog. Muscle weakness. Increased numbness and tingling. More issues with balance and co-ordination. Forgetting how to walk more often. Spilling coffee because god forbid could I ever carry a cup straight. Missing my mouth when I drink. I started developing seemingly random allergies. KT tape, adhesive heat pads, plasters, make up wipes. Some currently unidentified allergies. Anti-histimines have become a staple. My skin manifestations of EDS have worsened. Healing slower, marking more. My hands currently look like I’ve had a reaction to the pavement. A pavement that not much weight went onto.

I’m still no where near where I was this time last year and have a neurology appointment in may to deal with neuro stuff that started getting worse after the virus. The GP who referred me thinks it could me MS but right now no one knows. Is it EDS related, is it MS or am I just going to end up with being told it’s ME or Functional Neurological Disorder?

My chronically sick body reacted badly. This is standard for viruses with ME. I got freshers flu in my second year of uni and was on a downhill trend from there. Even colds can make us worse for a few weeks.

Yet when I sent an email using the ME Association template asking to be put in group six, I was asked to call to book a GP appointment. At which point I was dismissed. And not nicely either. It was made out as if the setback from ME wasn’t actually that bad, that if they said yes to me they would have to say yes to people with depression. (Severe mental health issues are in fact a reason to put someone into group six). Told people with asthma aren’t in group six so I definitely shouldn’t be (again people with asthma shouldn’t be left out but here we are). I was made to feel like a burden. Like a waste of time. Like I was making it all up.

I came off of the phone in tears. I should be offered the vaccine by the end of July but what if that’s too late. With the world opening up again and people going in and out more. I live with four other people. My healthy parents will be vaccinated before me and hopefully that’ll protect me a little but my brothers are children and so won’t be. It’s the knowledge that I either miss out or put myself at risk. The knowledge that once we don’t have to social distance at the climbing wall it may not be safe for me. The theatre tickets in July that are already bought so I have to go. But if masks are no longer needed in July will I be safe in central london?

The fear of another serious set back when yes I’m lucky to be as functional as I am but I’m here pushing through extreme symptoms because I feel some external pressure too. It can’t get much worse otherwise I’ll be unable to finish my masters.

It worryingly seems like the younger of us are the ones having this issue. It makes no sense why even if not group six we can’t just be put somewhere higher than group 12. We are at risk. We know we are. But when things are at the doctors discretion and you meet a bad egg or an egg that doesn’t understand your conditions there’s not much you can do other than find an egg who understands. Most of us don’t have that energy. Or go to our MP’s and CCG’s. Again most of us have lives we’re desperately trying to hold together. I definitely don’t have that energy right now. Physically or emotionally.

I feel hurt. I feel scared. I feel forgotten. I feel alone in this and like no one will understand because the media isn’t shouting about it. Instead we have government propaganda suggesting all vulnerable people will be vaccinated by April.

That’s not true. So many are left off the list.

I am one of them.

A week in my life in Lockdown (ft mental health and chronic illness)

Monday

I focused down on trying to get my mandatory uni work done for the week so I could focus in on revision and getting ahead on prep for the rest of the week. I tried to ground myself with worship music. Anything that takes the edge off the depression is good. I had stage one of my autism assessment, which I got really anxious about but came out positively. Confirming I am likely autistic and having arranged a full assessment. My bank account isn’t happy but it’s a matter I need closure on. I skipped my physio exercises which I was going to do whilst running a bath because I was too depressed. Sometimes that depression paralysis just gets you and takes you. I had a bath, watched spinning out, planned my week and then stayed up a little too late doing a little research for my Case Study project on a subject I’m really passionate about.

Tuesday

I got up early as I had a meeting and the dog has taken to being particularly needy in the mornings. I came out of the meeting positive and glad that I have a resource to go to for any career related questions. Sometimes you forget how important social interaction is and maybe that’s because I’m probably autistic and some social interaction is very draining. But I was actually energised and positive coming out of it until the high crashed and the depression swarmed over me again. My pain was bad and muscles tight from skipping physio and productivity was difficult. Sometimes I just feel like I’m drowning and there’s no way out. More worship music to ground. Helped but still no focus.

Wednesday

No wifi, no laptop. Tried to study without and didn’t get as far as I would have liked. I went for a walk/run and embaressed myself by failing to traverse a kids traverse wall but the slippy muddy trainers and holds + the dog in one arm made it a challenge. It gave me so much serotonin though so watch me embarrass myself in a kids playpark with a secondhand pair of climbing shoes. Muddy trainers+muddy holds are hard! And then more tears the feeling of having another barrier stacked up against you when you already face so many is hard!

Thursday

More tears. Family being insensitive and not realising how much I hurt. We do love it. I stupidy went on another walk and wasted time. Yeah it’s good to help keep my muscles loose and not sore but already feeling so behind that two hours from driving time and tesco + the walk felt unjustified. This is why I don’t go out with my family. I had a therapy assessment and told my depression is moderately severe. It was hard but hopefully I’ll be able to get some support soon and start feeling better.

Friday

Payback but having to push through. Unable to see properly, feel legs, pressure headache worse than usual. Went from despairingly low to hyper. Spent a few hours doubled up on the floor with ovulation pain. Had a dance round my room in a hyper moment. Pain came back, had a bath to ease it a little because even co-codomal wouldn’t touch it and did some volunteering.

Saturday

Endo is a bitch ft more payback and lots of drop attacks. I started some negotiation prep after revising and practicing my assessment.

Sunday

Bladder flares, endo flares idk what but it felt like something was pressing down on my pelvis and everything hurt. My bod is not a fun bod sometimes. I did more revision and practice for my assessment. I started spinning out all over again because Justin and Kat’s love gives me serotonin, Dasha is queen and Carol is a bitch but her workwear is goals and her comments sometimes make me laugh. I actually felt pretty good mentally on Sunday, which was refreshing.

Lets talk disability classification in para sports

The IFSC (international federation for sport climbing) has recently stated they are moving to IPC classifications from 2021.

This separates athletes into the following 10 eligible impairments:

  • Impaired Muscle Power – Athletes with Impaired Muscle Power have a Health Condition that either reduces or eliminates their ability to voluntarily contract their muscles in order to move or to generate force. Examples of eligible impairments are paraplegia, a spinal cord injury, post – polio syndrome and spina bifida
  • Impaired Passive Range of Movement – Athletes with Impaired Passive Range of Movement have a restriction or a lack of passive movement in one or more joints. This may result from contracture resulting from chronic joint immobilisation or trauma 
  • Limb Deficiency – Athletes with Limb Deficiency have total or partial absence of bones or joints as a consequence oftrauma (for example traumatic amputation), illness (for example amputation due to bone cancer) or congenital limb deficiency (for example dysmelia).
  • Leg Length Difference – Athletes with Leg Length Difference have a difference in the length of their legs as a result of a disturbance of limb growth, or as a result of trauma.
  • Short Stature – Examples of an Underlying Health Condition that may lead to Short Stature include achondroplasia, growth hormone dysfunction, and osteogenesis imperfecta. 
  • Hypertonia – Athletes with Hypertonia have an increase in muscle tension and a reduced ability of a muscle to stretch caused by damage to the central nervous system. This may be as a result of Cerebral Palsy, a Traumatic Brain Injury or a stroke.
  • Ataxia – Athletes with Ataxia have uncoordinated movements caused by damage to the central nervous system. This may be caused by the conditions/events listed in hypertonia or by MS.
  • Athetosis – Athletes with Athetosis have continual slow involuntary movements. The examples listed by IPC here are Cerebral Palsy, a traumatic brain injury and stroke.
  • Vision impairment – reduced or no vision caused by damage to the optic nerves or optical pathways or visual cortex of the brain.
  • Intellectual impairment – Athletes with an Intellectual Impairment have a restriction in intellectual functioning and adaptive behaviour in which affects conceptual, social and practical adaptive skills required for everyday life. This Impairment must be present before the age of 18. 

It then goes to list a number of categories of health conditions that are not underlying health conditions. These are as follows:

  1. Conditions that primarily cause pain (fibromyalgia, CRPS, Myofascial pain syndrome)
  2. Conditions that primarily cause fatigue (ME/CFS)
  3. Primarily cause hypermobility or hypotonia (EDS)
  4. Primarily psychological or psychosomatic in nature (Conversion disorders or PTSD)

So what are the problems with this?

a) Using the same basic criteria for a range of sports excludes people who can’t run due to pain/fatigue/joint instability can and has excluded people from wheelchair basketbal, tennis and other sports that rely on either being able to run or use a wheelchair.

b) It’s completely misunderstanding ME/CFS. Take me for example. I have reduced sensation in my legs, feet and left hand often. But unless I get scans and lumber punctures to see if it’s something brain/cci related and they come back with something I’d probably be excluded from para-sports purely because the IPC thinks my condition is primarily fatigue when fatigue is the tip of the iceberg. It’s unbearable pressure in the base of my skull, dizziness, difficulty with positional changes, reduced sensation, extreme muscle weakness and reduced power in my legs and I’ve always had poor proprioception and co-ordination. Although this isn’t an issue for me right now. I’m not well enough to compete in any sport and do my very intense masters course it would be nice to have the option and it hurts that yet another organisation is failing to properly understand ME/CFS.

c)Expressly excluding EDS (unless the athlete also has an eligible impairment + EDS) is wrong. Yes it fluctuates and athletes with EDS may need regular evaluations and some wouldn’t even fall within para categories if they were amended but EDS impairs ability to perform in a variety of ways. Our hyper-mobile joints means it takes more power to do what a non hyper-mobile person can, we often have issues with fatigue, brain fog and positional changes. We can have poor proprioception and get frequently injured.

d) It’s not considering everything else that can impair ability to perform that comes with a “Non-eligible” underlying health condition. The fatigue, brain fog, inability to concentrate, the pain, slow healing, dizzyness. These are all real issues and I know they can be hard to quanitify but nevertheless there should be an option for those who fall outside the 10 categories that doesn’t make the competition unfair for people within the 10 categories.

e) For an organisation that preaches accessibility and inclusivity in sports it just doesn’t feel right to have this list of non eligible impairments.

f) People who have worked for years to get to where they are, are now being exlcuded from competing. Their career ending prematurely due to some critieria.

So? What should change? I understand the need for strict measurable criteria to ensure the competition is fair for everyone. Especially in sports where it comes down to a tenth of a second or point. It’s definitely hard to find the balance. But I think there is a way to include everyone whose disability impacts their sport and wants to compete and is able to get to the required standard.

I think different sports should be able to have different criteria and still be able to make a bid to be a Paralympic sport if not already one. Honestly, all wheelchair sports should be accessible to anyone who can’t do the able bodied equivalent because they can’t run or stand for a long period of time. It may mean playing around with the categories to ensure it’s fair but the pay off is accessibility for all. Secondly, we need diverse teams making these decisions. We need people with a range of disabilities and from a range of ethnic, gender and socio-economic backgrounds in the room. This will mean any blindspots will be pointed out and considered, hopefully leading to less unfair exclusion. Assessors also need to have proper education about lesser known impairments that athletes may present with. To ensure a full, fair and non biased evalation.

As a climber. I really want all aspects of the sport to be accessible to all. Yes I may be climbing like a beginner right now because I’ve been so sick this year and I still love climbing regardless of my grade and limited ability. But I also enjoyed competing when I was younger and in the beginning part of this year. If our disability impacts our sport we should have the option for both. Regardless of the underlying health condition.

My chronic illness is a monster

My chronic illness is a monster
It makes me less than
It makes me make mistakes
It makes me look lazy
Like I don’t care
Like I’m stupid

The pressure in my head so intense
The fog so thick
You say things that are incorrect
Communication incoherent
The fog so thick

You see words on the screen
The fog is so thick
You can’t read them
The words swirl around you
You can’t comprehend

The fog so thick
Fatigue so severe
Head pounding

You produce substandard work
Not because you don’t care
Not because your lazy
But because your sick.

The difference between my mitochondria and yours

I have ME. When I say I have less energy than you I mean it at a cellular level.

My Mitochondria, that it the power house of the cell doesn’t do what yours does. It doesn’t produce energy the same way yours does.

You can get up, exercise for 2 hours, have a shower, work for a full day, some chores, walk the dog, read a book for fun all in one day,

That level of activity is something I dream about. To be able to sustain that without crashing and burning.

I lay on the floor to do some pilates based exercises and it drains me. So much so that getting off the floor is a struggle, if not impossible. My legs simply won’t.

You easily walk up the stairs. I walk slowly, clinging on to the banister. My legs feel weak and won’t move any faster even if I tried. Or I crawl. My legs not doing the stairs at all.

You can empty the dishwasher or hang the laundry quickly and without having to lie down after.

You go to bed and you wake up in the morning, maybe a bit groggy but you have a coffee and you can get on with the day.

I wake up in the morning, paralytically exhausted. Once I can move I’ll get up, have a coffee and a rest then try and get on with my day, fighting the need to nap for at least a couple of hours. My day is spaced out with intermittent rests and ice on the back of my head.

If you overdo it you feel quite tired so you take it easy and rest and you feel okay again.

I overdo it and my balance gets worse, I go into pre-syncope every time I stand up and may collapse just from trying to get to my own bathroom. My migraines get worse. My vision may get worse. My stomach may decide to stop digesting food. My legs, hands, feet and even face may go numb. My temperature regulation is worse than usual and my throat feels like like it’s being torn apart by razor blades. My light and noise sensitivity gets worse.

My body doesn’t produce energy in the same way yours does and it’s function is dependent on careful pacing, which is often better luck than judgement.

August was a weird one

Photo by Maddi Bazzocco on Unsplash

Another month of 2020 done!

August was a weird one. I moved back in with my family which is a bizzare adjustment. They don’t really understand my illnesses or why I can climb but should be using my wheelchair to get into town and back (which I’m not proficient at self propelling on uneven streets quite yet so need someone with me to push when needed) and i’ve gained weight because people keep on baking, I eat dinner with the family and there isn’t much easily accessible healthy food in the house. Although It’s not much compounded with how bloated I have been it doesn’t feel good. As I’m getting healthier with pacing I’m contemplating trying keto but I’m still not feeling like I’ll be healthy to reliably make meals daily once my masters starts so…

Despite seemingly feeling healthier with pacing, I have had some bad weeks as a result of too much walking. I’m v good at overestimating my limits and maybe that’s because with chronic illness are limits can change like the wind. You don’t always realise the week long payback you’ll get from simply walking to the doctors and back and I’m noticing the deterioration in my joints more from having to carry heavier things and the climbing walls being open again. I’m trying to stay conditioned when I feel well enough but that’s rare with having to manage other things I need to do.

In August I got my wheelchair. I did yet another training contract video interview (and then got rejected), participated in a negotiation competition and got to the final 12 and did many other things.

However it was also a month of disappointment and feeling like I wasn’t good enough. I got let go from a voluntary position. And admittedly it’s better for me that way as I could never have fitted into the neat little box required and my ME and suspected ADHD means I can’t proofread well. It would have ended up being too much stress – working for someone who wouldn’t understand and is quite frankly not my sort of person.

Although it made me feel really low for a bit and still does when I think about it because it’s a literal failure. I know it’s for the best. I just wish I was given a second chance to prove myself.

I also have the feeling that my family really doesn’t support me for leaving my job, despite it being necessary for my health and to be able to pursue what I want from life.

But that’s life. It’s full of ups and downs.

First Time Out In The Wheelchair

This week I went out in my manual wheelchair for the first time half being pushed because I live on streets with uneven pavements (which I’ve learn’t as long as the pavements straight but not if there are any bends!) and I still can’t get myself up a drop curb. I thought I’d write about some of the things I’ve learnt from the experience.

  1. My arms are stronger than I thought they were. I knew my arms had better function than my legs. I trust them more and can feel them properly. But I genuinely thought I’d only manage self propelling 5 feet on a v flat easy surface before they just gave up.
  2. Why can’t all pavements be level?
  3. People were a lot nicer than I expected. I didn’t encounter any Karen’s on this trip.
  4. Can people please put signs for COVID entry and exit sides at a wheelchair users eyeline before they have to choose a side of ribbon to go on.
  5. Can we have counters at banks at a height that is more accessible?
  6. Sometimes people do expect you to try and weave around them which is interesting as a new wheelchair user on a busy high-street. Was definitely scared I may run someone over at these points.
  7. I didn’t feel like I was about to pass out or collapse as much, I could feel my legs and was much less grumpy and more chatty (so clearly it’s doing it’s job or atleast half the job)
  8. The skin on my hands, my wrists and my shoulders surprisingly survived but there were deffo a couple of finger dislocations!
  9. I somehow ended up with a bruise on the inside of my upper arm? (EDS skin)
  10. I’ve come a long way in accepting myself since that time last year I had to be wheeled around A&E in a chair.

The advice a can give so far. The practicalities of navigating pavement in a manual wheelchair are a lot harder than you think and you have to go a lot slower than you think or even want to if the ground uneven (Maybe not for the seasoned manual wheelchair user). If you think you need to use a wheelchair you probably do need to and don’t let anyone tell you otherwise.

Pacing is neither cure not effective management. It’s hard to perfect and to justify.

Pacing is what you are told to do with most chronic illnesses that cause fatigue. Pace your activities so you feel as well as possible, your condition stabilises and hopefully start to get better. With ME this is basically all we have and it’s not enough. Most of us don’t really get any education by our medical professionals on how to pace and some get dangerous advice. Pacing is a word open to much ambiguity. When should I stop? How much should I do? When should I rest? Although on one hand that’s positive because rigid timings kill all joy and cause a lot of stress and anxiety it’s hard to know whether you are just “being lazy” as people often confuse ME/CFS with or “scared of activity” leading you to test your limits on a better day/week just to prove otherwise…

Because ME has the hallmark characteristic of Post Exertional Malaise or Post Exertional Neurological Exhaustion which tends to hit between 24-72 hours after an activity but can be longer if you are just running on adrenaline which happens to me all too often.

Yes there are warnings signs as such. For example me not being able to feel my legs properly and feeling like I’m going to collapse but that doesn’t necessarily mean I’ll get PEM from that activity.

Then the PEM hits, increased head pain, facial pressure, back of head pressure, dizziness, brain fog ect. Sometimes I recover fairly quickly. Other times it can take a month to start getting better.

If you start feeling better you think you can do something or should be making use of that time.

It’s hard to rest on a good day just to prevent consequences. If you’ve been ill for a while you want to go out seize the day, make up for that time lost being in bed, barely able to function.

And even if you think your doing this successfully the PEM can still come on. Either because you overestimated yourself or just because pacing isn’t a perfect science nor is it all in our control.

We could get a virus, it could be that time of the month, have a bad nights sleep because someone decides to start drilling at 8pm and doesn’t stop till midnight or symptoms could keep us awake. A stressful situation could arise.

And we go backwards even if we were pacing perfectly.

Sometimes I just say “Fuck it” to pacing.

Either because I want to live my life or I feel pressured because people with other chronic illnesses seem to just be able to push through unbelievable things and I’m just not trying enough.

Now this never ends well. Although I can push cognitive activity without getting too much worse if I’m laying down I can’t with physical activity.

When you want something so much it’s hard to not give it your all. It’s hard to remind yourself that ME is different to other chronic illnesses in that doing too much has often disastrous consequences.

Pacing is hard and impossible to do perfectly. I’ve had people tell me I need to pace better in order to work not understanding that my level of illness makes pacing and being in the office 5 days a week impossible.

Don’t tell us we should pace. We already know that.

And if we aren’t pacing I can reassure you that it’s because we really really really want something or need something or because we just want to spend time with loved ones.

On Severe ME….

This week is severe ME awareness week. I’ve never had severe ME and right now I would say I’m moderate – meaning I’m mostly housebound. I leave the house maybe once or twice a week for essential visits – i.e the doctor, the shops if I need to and that takes a lot out of me. I don’t work right now and when I was working from home it was brutal. But work like activities are done from a mixture of bed and desk, depending on the day and if I want to handwrite anything. So this is an outside perspective.

Severe ME is brutal and entirely distinguishable from the more mild forms. Some research even suggests that some people with ME will never get severe ME no matter how hard they try to push through but others are more predisposed to it.

Severe ME is being largely bedbound. It’s not fun. You may ask how people with severe ME spending all this time in bed. It’s not a lot of what you may expect. TV, books and work like activities. Instead it’s often laying in silence. Eye mask, ear defenders, a dark room. With nothing but your mind to keep you occupied. You can’t move and any movement feels like it’s draining you even further. You may have seizure like shakes, migraines, shooting pains throughout your body, numbness and pins and needles.

Even a shower or a visit from a friend or family member can give excruciating PENE (Post Exertional Neurological exhaustion) which lasts for a week.

You may need help to get to the bathroom or not be able to get to the bathroom at all.

In very severe ME you often need to be tube fed or reliant on TPN.

You have such a low activity threshold that just living can drain you further and cause deterioration. Especially if you aren’t in a quiet enough household or area. Or if your curtains don’t black out all light.

You may ask how you get severe ME. This is in one of two ways usually

1. You get a virus or another trigger and start out with severe ME

2. You push to hard – either on your own accord or all too often by pressure from doctors claiming you should push through the pain, or have inflexible graded exercise therapy. You listen because you too are ill informed about ME and you will try anything to get better.

Although some research suggests some people will never get severe ME and I think I’m in that category no one is “immune” as such and as a general rule of thumb pushing through your symptoms too much will result in deterioration.

This is a real biological illness and the most convincing examples of that are in severe ME. Lots of these patients aren’t depressed although I wouldn’t blame them if they were as it can be hard to maintain mental health with such a life limiting and misunderstood and often disrespected illness.

One doctor said to a friend “you get depressed and then you get deconditioned and end up bedbound”. Although for some this may be true this doesn’t reflect the majority of the ME population. You don’t end up bedbound because you decondition. You decondition because exertion worsens symptoms and sometimes it’s not even deconditioning. Your muscles just refuse to work at times. I’m there all too often. Waking up with paralytic exhaustion and often having drop attacks.

We need to help those with severe ME. Right now many of them are missing from the world, missing from medical care, missing from friends and family. We don’t know about the struggles they have and the help they need because many are too ill to advocate for it.

Step into my shoes: Growing up with chronic illness

Imagine being eight, going through a phase of constantly spraining your ankles in PE, your teachers not believing your in pain when you ask to sit out half way through for the 3rd week in a row. That started it, the belief that no one believes you, everyone thinks your a fraud. There can’t be something that wrong because if there was people would believe you.

Being nine and spraining more ankles and a wrist. Being told you can’t go horse-riding because you have an injury, albeit minor. That started the feeling that you should hide the pain because you didn’t want to miss out on the fun. Horse-riding was a passion at the time and the pain wasn’t that bad. For pain that wasn’t always going to be there when you rode it was worth pushing through.

Imagine being 11, running around in the playground getting a pain in your lower right abdomen. A pain that unknown to you at the time would plague the rest of your life. You’re scared, but feel unable to open up to your parents about it. You reach 12 and it gets worse. Your dad somehow reads your texts and says your telling your friends you feel unwell for attention. You ask to sit out of PE because the pain is beyond excruciating your scared you’ll die. The teacher doesn’t believe you. You try to play basketball despite, standing out hand on your lower right abdomen, leaning against the wall whenever possible. Because that teacher didn’t believe you, you don’t go to the medical room in the next class. You think they to won’t believe you. You internalise it even more. Hide the symptoms from parents and teachers even more.

More and more goes wrong with your body. Dizziness. Going from once being fit to struggling to walk up the stairs to your English class without feeling like you’ll pass out. Your knees hurt and you stop horse-riding. Between the abdominal pain and the knee pain from having feet in the stirrups it’s just too much.

At 14 you take ibuprofen into school, taking it every three hours instead of every four. Even then the abdominal pain rarely eases up.

The teachers think you don’t try hard enough. You should be getting better grades. But how from the ages of 11-16 do you pay attention in class when you are scared for your health but feel you have no where to turn. When the nausea and abdominal pain is distracting at best and excruciating at worst. When you are depressed, self harming and develop anorexia because you feel like no one understands you. No one is there for you and no one listens to you.

Doing your best isn’t killing yourself. It’s not pushing yourself unreasonably. It’s simply doing your best.

Maybe I should have been getting straight A’s but my circumstances meant I didn’t.

At 16 you develop ME, but it comes on so subtly. You start getting worse at climbing, cycling two minutes down the road makes your legs feel heavy and weak when previously you could easily do the entire paper round. The sore throat comes on and it never leaves, you feel tired and start falling asleep at 2pm over the summer holidays or fall asleep at 8pm in the middle of watching criminal minds. You’ve been busy. It’s nothing. You start college, the nausea gets worse, you feel tired but everyone’s tired. It’s nothing. That is until the dizziness and heart palpitations start, the fatigue hitting you like a ton of bricks at the beginning of second year. (Although not as bad as I am now). The doctors don’t know what’s wrong. They record a sitting heart rate of 135bpm but say you are just underweight. Hilariously you then relapse into anorexia, fall into an exercise addiction and push through injuries. You feel the PEM (albeit mild compared to todays PEM it was significant at the time). The what is now known as ME gets better but your abdomen and all those organs decide not to be okay. You lose weight after gaining back to a healthy weight. In pain. Nauseous. Bloated The doctor says It’s just stress.

That’s just a snapshot of life with chronic illness. We really need to start believing our young people. Really making our young people aware that we are there to listen and help. Not just stick to the standard “faking it, growing pains, stress, weight” reasons for symptoms out of the ordinary. I know had I been believed and had I felt loved and able to speak about my symptoms from the outset I would be a more confident person now. I wouldn’t have spent so much time so scared, thinking about what could be wrong with me and maybe I then would have got better grades.