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.

Let’s Talk: Discriminatory Job Adverts

Okay, this one has been coming for a while because subtly discriminative job adverts are an issue of mine and sometimes less subtly.

Why?

Because finding a job with a disability is hard enough and in the UK the Equality Act 2010 is meant to prevent disability discrimination in the workplace – from the application stage.

I’m not going to get into a debate about whether it does this well enough or not but I am going to discuss some of the parts of job adverts I’ve seen that are somewhat discriminatory.

  • We are looking for a high energy individual – My condition causes fatigue but it doesn’t mean I can’t do the job well.
  • Must be able to drive – If the job doesn’t require significant travel and is in a place accessible by public transport why do I need to be able to drive? There are many reasons why someone with a disability wouldn’t be able drive and this exempts you from the job even if driving isn’t necessary to perform the job well.
  • Must be able to lift X amount – If it’s an office role requiring mainly desk based work it would usually be a reasonable adjustment to delegate the lifting part of the role to another member of the team
  • Must be physically fit – unless it’s a role that actually requires this I think this one is self-explanatory
  • Good health record
  • Physically and mentally healthy
  • Flexible – flexible in what sense? How flexible? This may also be discriminatory to women who often have more childcare needs than men. Yes we may be flexible but only within certain parameters.

We need to work with employers to ensure these phrases don’t crop up in job advertisements, recruiters and disabled candidates are aware of the range of adjustments that may be considered reasonable and that recruiter are open to recruiting disabled candidates and understand that we can be valuable members of the workforce.

I hope that when the next generation start applying for jobs they won’t face these barriers.

Lets Talk Migraines

I know Migraine awareness week was last week but lets face it every week should be awareness week so I thought the untimely post would still be a worthwhile one.

The classical migraine is an aura (usually some sort of visual disturbance) followed by a throbbing headache in one side of the head or the other (sometimes both) combined with nausea, vomiting and dizzyness. However migraines are a lot more dense and complex than this.

Personally I get a range of different types of migraines and symptoms from migraines/that end up causing migraines. Sometimes I get an aura which is either those spots of lights in your eye or a loss of peripheral or blurring of the entire vision in my left eye.

My migraines either come from neck issues and pressure at the base of the skull, over-exerting, not wearing my blue light glasses enough or hormones.

The hormonal ones are the most painful but normally they are just that. An agonising pain in the butt (or should I say head). These ones make me want to cut my head off. These migraines also come with the extreme light and sound sensitivity that often comes from migraines, along with that distracting at best and debilitating at worst nausea.

My day to day migraine however is a lot worse more varied irritatingly day to day and is often worse on days where the pressure in the back of my head is worse. If I am unable to manage that pressure before I get a migraine with ice, or laying flat on my back with my orthopedic pillow at regular intervals then it will often get worse and cause a migraine or bring on a worse one.

I get your regular nausea and vertigo like dizziness, but also some of my numbness and tingling may be attributed to migraines. Light sensitivity is a bitch, especially as I don’t have sunglasses that I’m confident in and it’s going into autumn and winter in the UK where people don’t wear sunglasses. I find I’m much more sensitive to sunlight than relatively small amounts of artificial light. There have been days/weeks/months where I haven’t been able to open my bedroom curtains fully. I struggle to watch movies on a screen without night mode on and without blue light glasses! Especially if it has lots of flashing, action or loud noises.

I’ll be fatigued but the symptoms will make sleeping almost impossible.

The symptoms cause unbelievably thick brain fog making every bit of cognitive function so much harder, if not impossible.

It’s not just a headache.

What’s your experience of migraines?

If I were to paint my pain

If I were to paint my pain I’d paint the pressure behind my eyes, the sharp headaches around them and the migraines above them. I would paint the back of my head, the pain and pressure from the base of my skull upwards. If I were to paint my pain I’d paint my jaw. Tiring from chewing and dislocating if I dare open it too far.

If I were to paint my pain I’d paint my neck as it gets increasingly sore, the longer I sit up. The grinding and pain that is more often arising from what I presume is “sleeping funny.”

I’d paint my collarbones. Especially my right one, which has been problematic since I ran into the side of a lorry.

I’d paint my shoulders. Struggling to carry a heavy backpack on my back, partially dislocating from trying to sleep or going into the freezer.

I’d paint my right elbow. The splintering pain I get through it from putting pressure on it or the ache from doing too many pushing movements.

I’d paint the burning, searing nerve pain in my lower arms. Tormenting me, keeping my up at night yet preventing me from doing anything useful. I’d paint my wrists, my fingers and thumbs. The instability causes pain but braces and constant taping is out of my budget.

I’d paint my chest. The period pain in my chest. The fibro pain. The subluxing ribs, sometimes just from sitting up.

My stomach. Not sure whether it’s hungry or nauseous. My kidneys, a pain beyond agonising that makes it hard to breathe.

I’d paint my lower abdomen riddled with all different types of pain arising from the urniary, gyne and gastro anatomy there.

I’d paint my back. The crushing feeling down my spine, the pain from my left SI joint and the agonizing ache in my lower back. I’d paint the nerve pain from my lower left back, right down to my lower left leg.

I’d paint my hips. Unstable, painful when I walk and climb. I’d paint my knees. Painful from doing to little yet subluxing from that spontaneous dance around my room or just standing up wrong. The ligiments in the back of my knee, tight and painful from past injury.

I’d paint my lower legs. The agonising nerve pain and bone pain. My ankles – unstable and easily damaged from impact and my toes – subluxing easily.

I’d paint my entire body. Chronic pain is relentless. It’s never ending and it’s difficult to explain. It’s real and physical pain.

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.

The Things I do Because of my Chronic Illnesses That are Often Misread

Sorry it’s been a bit radio silence here lately! I’m struggling with my ME and relying on adrenaline, caffeine, sugar and sheer necessity to get through everything I do. With feeling so god damn awful and trying to just carry on I thought I’d share some things I do because of my chronic illness.

1. Resting my head on the table or my knee whilst I handwrite notes or an exam – I started doing this at school when I was 10 and I always got told off for it. But it was just more comfortable like that. I didn’t know why at the time but as my symptoms have got worse I have realised it’s a thing I do to try and alleviate dizziness and head pressure and just keep going. Fun fact head on desk is how I got through my Land Law and Trusts Law exams.

2. Never having my feet on the floor and finding all manner of awkward positions to sit in so my feet are at hip height – helps with fatigue and dizziness and is just more comfortable.

3. Leaning against whatever there is to lean on

4. Constantly moving around if asked to sit/stand in one place – shifting weight and finding different positions helps with pain.

5. Working from bed or the sofa – I’m often dizzy and suffering from pressure in my head or I’m nauseous and in a lot of pain. My bed and the sofa both mean I can alternate sitting and laying.

6. Picking up my phone far too often when I’m meant to be working but my ME is causing severe head pressure and I just can’t concentrate – Really trying to cut the phone addiction. This doesn’t help I just am not good at sitting, or laying and blankly staring at what I’m meant to be doing.

7. Walking slowly – I’m sorry, I simply can’t keep up due to my pain and fatigue. Please be understanding if we are out together and walk at a pace I am able to manage on that day.

8. Grabbing hold of walls or using them to guide me I often get dizzy and go into pre-syncope. When my vision blurs due to this or I just feel unsteady on my feet I often use the walls to help me navigate my way to the bathroom or wherever in the house it is I’m going.

9. Taking my time when changing position (i.e laying to sitting and sitting to standing) – head pressure and dizziness is a bitch and it definitely gets worse when I change position.

These are just some of the things I do due to my symptoms that people may misread.

What do you do because of your chronic illness?

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.

The month of both excitement and tears

June feels like it’s flown by. I think that’s because I just haven’t stopped and if I have stopped it’s been because I’ve been so unwell that I’ve been unable to even watch TV.

June started with me with my family and ended with me back up north due to flat stuff. Moving out is not fun. But we move (Literally in 4 weeks from the day this will be posted). I definitely miss being home. Although my chronic illnesses are a lot worse and my family just don’t get it I’m finding it’s too quiet working from home on my own. I’m bored, not because I don’t have enough to do but because I need that stimulation of people (and dogs around). But the health benefits are certainly worth it. Lots of exciting law things happened this month. I got a video interview for my dream law firm (and then got rejected but we move).

I also got an interview for a scholarship I need which is at the end of July. The pressure is on because I need it but I’m excited. I also took part in Legal Cheeks virtual vacation scheme which helped me massively in determining what I want for career and in providing me with a network.

I really hope my luck in terms of interviews continues and I get some more interviews for my outstanding applications. If I don’t that’s also fine as I’m aware many firms have paused recruitment and it’s a difficult year. There is always next year.

My stomach eased up after I moved back to my apartment as it’s meant I can eat more flexibly and in a way that works for my body. My bladder on the other hand. I’ve spent the last week on antibiotics for a UTI that may or may not be there. It’s helped reduce the spasms but it’s still causing significant problems, especially if I dare drink more than one cup of coffee a day. I am at the moment whilst I’m trying to pursue law, trying to work my full time job and trying to sort out a job for August (I’m resigning it will be official by the time this is published).

My mum and nan are putting an awful lot of pressure on me about my decision. I’m leaving because I’m simply not well enough. I need to get my health back so although I’m looking for an ideally part time role my interest in something full time is limited to something of the dream job category. It will only be 5 months come resigning until I start my LPC so I reason if nothing I’m well enough for is available I will manage living with my parents and worst comes to worst just doing general CV bolstering activities.

There’s only so long you can push yourself for and although I am getting out of this ME flare, I think, Maybe that’s the adrenaline speaking, I need to place myself in the best position to excel in my LPC and go on to have a long career in law. I also need to recondition and doing that whilst working isn’t going well right now.

Passing out when trying to sit up after a laying down workout isn’t fun!

So that was June! How was the month for you?

More things I’ve done due to brain fog

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As I’ve got a busy and stressful week I thought I’d make a quicker easier post and that is more brain fog stories as I have plenty of stupid brain fog moments.

  • Forgetting my brothers name. Not just confusing the two but going completely blank and having to settle for child and then getting told off by mum because “he has a name”. I know he has a name but my brain was so dead in that moment it couldn’t figure the name out.
  • Calling dad mum and vise versa – I did it twice in one evening a couple of weeks ago
  • How do I make a bowl of oats?
  • Completely misspelling words so they end up jumbles of letters
  • Writing the opposite of what you intended
  • Confusing words and names starting with similar letters
  • Leaving house keys in the front door
  • Forgetting to go to the toilet – yes I often wonder around wondering what I got up to do, go sit down again and then remember
  • Looking for ice packs in the kitchen draws instead of the freezer
  • Difficulty safely navigating streets and crossing roads when walking – my brain just struggles to process all the movement around me which is why I’ve not learnt to drive yet.

I hope these events show you the ridiculous things brain fog does to us multiple times a day and is somewhat relatable and helpful in helping everyone with brain fog feel less useless and alone!