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.

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.

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.

On Ableism becoming a wheelchair user

I made the decision the other day to get a wheelchair. It’s a decision I really should have made years ago but I was too scared and I could walk okay when I needed to…. so it was fine right? I mean not really but it’s hard to come to the realisation that you need a aid that many people see is only for people who are paralysed or otherwise literally cannot walk when you can. Adrenaline will keep you on your feet it just really hurts, the pressure in your head gets exponentially worse and it cases payback which limits your ability to do other things. It’s also hard to justify needing a wheelchair when you can climb. I don’t know why because climbing and walking are two completely different types of movement and your able to sit on the mats and rest inbetween.

It’s scary anticipating neighbours simultaneously seeing you walk to the car to go to your nans or the climbing wall or wherever else one goes in the car, but go out in the chair to go to town or the doctors or wherever once I have built up the ability to self propel I may go on my own.

There’s definitely a lot of people my parents included who don’t understand how chronic illnesses fluctuate. If I pace myself okay I can function and with my ME feel okay. Not healthy person okay but ME/CFS okay. Like the day I’m writing this. There’s some inner energy but the symptoms are still there. With my EDS yes my joints would be better if I could get myself more conditioned by climbing more but even then some days they are worse than others. Some days I can’t go into the freezer without partially dislocating a shoulder, others I can.

There’s also a lot of people who think people in wheelchairs somehow also have an intellectual disability – like we can’t speak for themselves.

And the awful “wheelchair bound” no for me it would be some freedom outside of the house with less payback and I know others feel that way.

It’s difficult navigating spaces that aren’t really made for us but it’s better than being stuck in the house.

And that. That would be amazing!

Does anyone else use a wheelchair for certain outings? What ableism have you faced?

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.

Reviewing portrayals of disability in TV: The story of Tracy Beaker

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So I thought this would be a fun lil project to work on, working my way through various TV shows/episodes and reviewing them on the disability representation in the show. To start, The Story of Tracy Beaker because it was a childhood favourite and I’ve really enjoyed rewatching it! I also now want to read Jaqueline Wilsons newer Tracy Beaker books even though I’m 22 and currently am struggling to find time to read but that’s beside the point. The two characters I want to focus on for this are Layla and Millie.

Layla 

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Layla has Cerebral Palsy and a big positive is that she is played by an actress with this condition. Disabled actors playing disabled characters is rare in TV and film so I definitely appreciate this! Other pros are:

  • She has a great personality and is a solid character whom viewers can easily become endeared with for reasons other than her disability
  • We get to see the reality of missing out on things when your disabled or have a chronic illness in the episode where she has to miss an exciting day of school for a physio appointment that ends up getting cancelled. Layla not wanting to miss school helps debunk stigma that disabled people are just lazy or the belief that they are lucky to get to miss days of school
  • We see issues with accessibility and  when Duke says “first one to the table” and Layla is unable to run as fast as the others.
  • Tracy uses her age and height as well as able body to get her wings back from Michael. Seeing Layla fit in with the other kids so well and seeing the other kids help her when she needs it but not being overly pushy or protective or pitying sends an important message that disabled children are just children and deserve to be treated with the same respect and in the same way as any other similar child, providing necessary accommodations are made.
  • She seems independent and intelligent for a child of her age through her lines and the fact that she does household chores like everyone else – this is very important for two reasons, one to help dispel the whole disabled people are a burden myth and secondly to show that not all disabled people are stupid.

Cons

  • The only con I really have is that she didn’t get fostered but that’s reality sadly. Although she’s young and cute, having a disability does make her less likely to get fostered.

Milly

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Millie is non verbal until she gets fostered and then she says the best line to Elaine.

Pros

  • The other dumping ground kids suspect her of weird goings on and think she’s scary but eventually realise she’s a scared kid and they should be nice to her
  • Her friendship with Marco and her eventually getting fostered with him
  • Even without lines we see her personality and emotions

Cons

  •  I wish she got more screen time
  • I know Elaine is a pain but I really don’t like how she pity’s and patronises Millie just because she doesn’t speak.

Overall I would give the representation of disability in The Story of Tracy Beaker an 8.5/10! Although this is only my opinion.

There will also be one coming on Tracy Beaker Returns/The dumping ground some point soon so watch this space!

If you have any TV shows and characters to recommend for this series leave it in the comments.