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.

It’s never enough

I always feel like I’m not enough. Not good enough, not smart enough, not trying enough.

Sometimes it’s in the back of my mind other times, if something triggers this.

Someone doing something amazing whilst I feel I’m sitting there stagnant or going backwards.

Rejection upon rejection upon rejection.

Waiting for emails. Emails of yet more rejections or hopefully good news.

Scrolling down linkedin or legal insta to find everyone getting training contract offers when you have nothing.

Everyone else having confidence to start various initiatives and you not.

Because who would care? Who would help?

People say you don’t network in the right way.

You can’t maintain relationships with people because you pushed all your friends away in the second year of university when you had zero mental health.

You are just simply not enough.

I don’t know how much of this is my poor self esteem as a result of never feeling heard as a child. At school, by my family. A result of emotional neglect/abuse. Or how much of it is a result of being chronically ill and when your chronically ill society expects you to be extroadinary.

To reach goals that most people don’t reach and be an inspiration.

If you don’t your just lazy. A burden on everyone.

It doesn’t help that I genuinely want to reach said goals.

Personally I think it’s a combination of the two causing my feelings of never enough.

I already push myself so much to do things and to function and to live life as close to how I want it as possible that when I see other people meeting standards that I expect of myself I feel like I’m not enough. People say I should do more or atleast insinuate it but there is no way I can fit more in.

I need to try and climb as it’s the only exercise I can tolerate and being conditioned makes a massive difference to my pain levels. It also gives me life.

I’m leaving my job but up until said point I am having to drag myself through 8 hours a day. 8 hours where the pressure in my head feels unbearable, Where my vision will start to fade on sitting up and where the brain fog is so thick that I don’t really trust myself.

I’m doing law things alongside.

Moving home to try and take care of my health before I start my LPC.

I can’t fit more in.

I find it funny that we are expected to be inspiarations but if a healthy person got my symptoms for a week it’s okay for them to do the bare minimum.

Why is this? Why has society developed in this f*cked up abelist way? I know I’m not the only one who suffers because of it, so if you do to you are not alone and you are enough.

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

ilkka-karkkainen-yn8aHOdNLZo-unsplash

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!

May was a Mess but that’s okay

8349C0FF-E085-416B-8CE3-96468F093FAE

I quite like doing these monthly reviews so I think I’ll continue them as much as possible.  But May was a not very fun month. Fun things happened but my body definitely took the sacrifice until I found the d-ribose and the adrenaline I’m in right now. Yes I’m aware harnessing the adrenaline isn’t good ME management advice but I do what I do.

The beginning of May actually feels like a decade away right now but I decided to commit to an ME awareness daily photo challenge on Instagram which I actually completed, like what? Everyone who knows me knows I get to about day 15 of these challenges and give up. But with a lot of pre-preparation and sometimes posting two or three days in one I managed. When I could dedicate the physical and cognitive energy to photo taking I really enjoyed expressing my creativity and posting different content. But I also liked  how I could go through a wealth of photos on facebook, google photos, my phone and post old content if I didn’t have the energy or muse. There is now a picture of 9 year old me in a tree on Instagram (Where else would I be?).

I also got to see my family again and I am loving being fed and my dog and my fingerboard and there being a tree I can climb in my nans back garden. It’s probably not safe as it’s probably taller than a bouldering wall (getting down was terrifying) but my brother climbs it all the time and I’m competitive. Yes even against a 14 year old because if he’s better than me at anything he endlessly rubs it in.  Also trees and doorframes are all I can climb right now so if I’m in the vicinity of a tree and feeling vaguely well enough I will.

But my health was not vibing in May. In all the ways.

I spent the month a really not fun gastro flare because my body was like “Hi your doing too much for me to have the energy to digest food.” The only reason I’ve kept weight on is because my family feed me and eat the typical unhealthy westernised diet so the calorie density has been higher, especially with my evening meal. I’m really hoping my stomach works this month because I’m done with the agonising all consuming nausea but also scared of gaining weight. I weigh the least I have since a bad gastro flare four years ago and I weirdly feel worse about my body than I did at Christmas when I was heavier. But such is life. I can’t do huge amounts about it when living with my family. If I wasn’t working I’d make separate dinners for myself more but I really don’t have spare energy to cook and wash up the cooking every day or walk to Tesco and back for fruit whenever. My nausea is something I really should see a doctor over as even though I can’t commit to one end of the country I could atleast get some anti-emetics. Over the counter and herbal remedies are of really limited effect right now and no I can’t concentrate on my job effectively if the all consuming nausea hits. But I also can’t concentrate if I’m hungry so I can’t really win.

My bladder also waged a bit of war on me, although that’s been going on since before lockdown I found it more noticeable when trying to work. I should really see a doctor about that actually as it’s been really painful over the last few months but COVID and not being committal over staying in one part of the country.  It’s also kind of scaring me because from my limited none medically trained knowledge it sounds like I’m having retention issues which is a common EDS comorbidity.

I still have an elbow injury even though that’s had a lot more rest (Should really do something about it) and my LCL is still injured even though when I got it checked out I was told a month. That was three months ago. I hate it when medical professionals underestimate injuries because of a high pain tolerance or maybe I just heal slowly because of my EDS. Everything else that got injured during the same heel hook is better now though!

Migraines, pressure in the back of my head, migraine like headaches that aren’t actual migraines and pain in the rest of my body has been a constant battle. Yes another thing I should consult the GP about but I have 99 problems and I don’t know which to prioritise.

I was finding myself on the floor multiple times a day, although that did reduce at the end of the month by starting D-ribose and getting back on another supplement that I think I probably was on at some point but stopped because I couldn’t afford. It’s very weird living in an abelist family who don’t even believe that is a thing, collapsing multiple times a day but never in their sight or rarely because adrenaline is a wonderful thing. It’s honestly even more hilarious when your younger brother has issues with you not emptying the dishwasher and your dad gets in on the “Why can you do X but not Y?”

Especially when you can’t explain because they don’t let you get a word in and lets face it no one will ever understand ME until they have ME. No one will ever understand that yes I can do this thing but this thing makes me very dizzy and I have to work after lunch so no I can’t do this thing right now. I can do this thing but it’s unsafe for me as I often can’t feel my feet and am dizzy so if I am able to walk down the stairs carrying a hoover down and then hoovering the mess I made after exerting a lot of energy before now is something I need help with.

I did the hoovering. Not the carrying.

I feel like able bodied people also don’t understand that we’re allowed to have fun. And I’m not blaming my brother for his “Why can you climb a tree but not empty the dishwasher.”  But it’s something I’ve come across my other people who are old enough to educate themselves and allow themselves to be educated.

May also ended in a bit of a mental health crisis. I won’t go into details of why or what but it was terrifying, especially as I had been doing really well. Honestly if I had records of my recent anxiety and depression questionnaires I could prove it. (I have to do them before each therapy session.) But seriously being worse mentally, even if only for two days than you have been for two years is terrifying.

So May was not great but hopefully June will be better. On one of the last days of the Month I was able to walk for 10 minutes without too much PEM. Still some PEM but less.

I may go down to one post a week in June. It’s certainly not felt right to make two posts this week with everything going on. I’ve been sharing resources and info #blacklivesmatter related over on my IG stories @spoonielivingfree which will likely continue but writing a blog post on the matter when I can only come from my own white privileged view isn’t something that’s felt right. We need to share voices from black people without putting pressure on them to educate us. I may however write some criminal justice/sentencing pieces if I can find the energy although I’m not sure whether they’ll be posted here or somewhere else.

That was a tangent. But yeah, I’d like to do two posts if I can but it’s not something I’ll pressure myself to do!

How was May for you?

 

 

 

 

The lesser spoken symptoms of ME and EDS

adam-niescioruk-hWzrJsS8gwI-unsplash

It’s nearing the end of all the awareness months and just to get that lil bit more awareness out I thought I’d focus on the not just fatigue parts of ME and the not just joints part of H-eds. Now I do want to add a disclaimer that these are my experiences of symptoms. Not everybody’s. I have a mild case of EDS and co so understandably my experiences are different to someone with a more severe case. My ME is here there and everywhere in severity although my new supplements are getting me out of the horrific flare I’ve been in. We love D-ribose. The taste no. Not collapsing multiple times a day, just trying to get to the bathroom yes. I’ve never been severe, or super severe though so although those symptoms have happened they’re not a constant.

That was way too long of an introduction! Lets get on with the content.

EDS is bladder pain, bladder discomfort. The more full your bladder is the harder it is to urinate. The pain feels like it’s growing by the minute and it’s all consuming. You get frequent infections.

It’s nausea, food just not feeling like it digests. Even drinking water can cause nausea and a sort of sloshy feeling that a healthy body would only get if they drank too much. I personally find squash and diet coke kinder to my stomach than water, no idea why that is! It’s spending money on countless anti-nausea remedies and OTC medication, finding often they are of limited effect. GPs are reluctant to offer anti-emetic prescriptions in the UK.

It’s bloating, retaining so much water that your painfully bloated you feel and look pregnant and go up a clothes size or two on bloat alone.

It’s reflux, sometimes so bad that it keeps you up at night.

ME is pain, never ending pain. Frequent migraines, light sensitivity which not only causes pain but dizziness. Laying in a bedroom with the curtains seldom fully open really gets quite depressing.

It’s unbearable head and neck pressure. It can be kind of eased by hanging upside down at least for me but that’s not sustainable for a long period of time.

It’s drop attacks, heart palpitations, breathing difficulties.

The brain fog that leaves you feeling stupid and can be really quite scary at times.

Cold extremities despite being in a heatwave and sweltering.

Blurry vision. I don’t think the list of ME symptoms ever ends I could write a book, but it’d be a boring book so I won’t. I hope you’ve all either learnt something from this list or if your unlucky enough to have these conditions yourself or in the process of being diagnosed that this somehow helps make sense of your symptoms and makes you feel less alone.

 

 

Dealing with rejection

cristian-newman-tnxRFtXI9dI-unsplash

I don’t think I’ve already covered this, or if I have I’ve not dedicated an entire post to it. Which is strange considering just how much rejection I have faced.

At the end of April I was rejected from my dream job, although I was put on the reserve list so maybe if we keep our fingers and toes crossed it will come to me. Or not and something else will happen that was so meant to be.

And very unlike me, I dealt with it okay. Maybe I’ve experienced so much rejection that I’m immune to it.

I was able to appreciate that getting as far in the recruitment process as I did was an achievement in itself. Many people who get the job are a lot more qualified than me, or a lot more privileged and from better universities.

I was able to appreciate that rejection isn’t the end of the world. It doesn’t mean I’m not enough or I didn’t try hard enough.

It’s just life.

Life makes no sense sometimes especially when your dreams seem to just not be coming together. But I truly believe that one day it will all make sense. l

God has a plan.

He just doesn’t make us aware of that plan.