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?

My experience on the Legal Cheek Virtual Vacation Scheme — handoeslaw

I spent the week participating in Legal Cheeks Virtual Vacation Scheme alongside 3000 other aspiring Lawyers in the UK and worldwide and as many of these schemes are going on this summer, in both law and other industries, I thought I would share my experience. The scheme was run on a platform called Hopin. I’ve […]

via My experience on the Legal Cheek Virtual Vacation Scheme — handoeslaw

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!

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.

 

 

Reviewing my Journey from one end of the country to the other during lockdown

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You probably think I’ve gone mad at this point or atleast run out of ideas – writing about my travels from one end of the country to the other. But I am, so such is life. And yes I have many other potential blog posts, I’m also thinking about starting a law blog to keep me occupied when I leave my job, unless I’m too busy trying to find a new job because internalised ableism is a bitch. I’m in a weird position with my health right now. Not really well enough to work full time. Unable to walk for 10 minutes without PEM and more than a few minutes without hip issues so would struggle to get to a workplace multiple days a week and work productively for 5 days without an electric wheelchair which I  can’t afford. I am looking into a self propelling one though just so when I move back in with the fam they can push me around. (They’re abelist selves will hate that)  Anyway that’s beside the point.

I had to go back to the end of the country where I work for flat inspections and to pace. Sounds weird that. But I do find my health is better up here as I don’t have the constant noise of my family draining my energy. I eat whatever and I don’t have stairs to contend with.

So where to start. I didn’t rate wearing a facemask, espcecially not an overcized one but it was all I had and it looked cute so I rate that. I feel like going out in things that previously would have faced so much negaitive judgement is easier if you can make the item pretty. The train station in my town was eerily empty but I was able to sit down whilst I waited for the train so can’t really complain. On the train it was only me and a family in the carriage until the end of the journey when a couple of other people got on.

Getting off of the train in London was a weird experience. Many people were wearing the face masks wrong, maybe the government should start sharing easy instructions on how to use a facemask properly. Maybe they already do and I just haven’t seen it. I popped into WHSmith because I didn’t feel browsing boots meal deals for too long was appropriate and I wasn’t that hungry so I just got a Lucozade, some hand sanitizer and mini eggs. I know it’s June. But Easter choc is the best choc.

I have never seen London  so quiet  and as usual the walk to the jubilee line killed me.  But it was nice seeing hand sanitizer points throughout the underground network. Unfortunately I had to stand on the tube as well as I felt too anxious to walk through people to get to seats at a social distance as getting there would break the social distance.

I’m so utterly pathetic. I felt really quite unwell and honestly that’s the worst part of being in London with an invisible disability. Heck even when it’s in some way visible it’s a good day if someone offers you a seat. Although social distancing issues aside I’m normally good at hunting down the last seat if I’m not travelling in rush hour.

I could sit on the second tube I got though and nearly zoned out and missed my stop. I am a liability on public transport. Honestly I’m amazed I’ve never actually missed my stop before.

I decided to sit in the sun for a bit at  as I had just under an hour until my train once I got to the next main national rail station which was really nice although sun makes me super nauseous right now! The train station handed out facemasks to people who didn’t have them which I highly rate as at the time of posting it is now compulsory to wear facemasks on public transport in the UK.

The toilets were open at the station which was great and there were hand sanitiser points outside the toilets which I highly rate and lots of reminders about maintaining a social distance.

The second train was more chilled than it ever is although I was very happy to get off and be back home. Made the very stupid mistake of walking back to my flat despite being in a lot of pain. I was so out of breath despite that 10 minute walk not usually making me out of breath even when carrying stuff so that’s a definite sign that my bodies not where it was at the beginning of the year.

Travelling during this time was a lot less scary than I expected it to be so I hope this helps those who are suddenly realising a need for public transport as the country opens back up after not needing it for a while.

The problem with “real recovery”

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And we’re back with an eating disorder recovery related post and that is the issue of real recovery. I’ve been in the community on YouTube and the gram for many many years now and yes as a young influential gen z I did #realrecovery in my posts. But now I’m older and wiser and believe the message of real recovery is slightly problematic.

Back in the day it was associated with a minnie maud style, 3000+ calories a day, no exercise recovery. Yes that is probably the most ideal recovery when it comes to putting weight on fast in recovery from anorexia and maybe even for your mental state. Now I find it associated with going “all in”.

But other than the fact that “going all in” isn’t appropriate for all eating disorders or all eating disorder patients as it may cause refeeding syndrome or increasing urges to binge the term real recovery is problematic as it insinuates to many eating disorder patients that there recovery is only worth it if they’re never giving into thoughts, eating to their cravings and hunger ques and not using compensatory behaviours. Considering how perfectionistic anorexia sufferers in particular are this is even more problematic as they are likely to want the perfect recovery and the eating disorder may convince them that it’s all or nothing.

If you give into a behaviour your a failure. Your recovery isn’t real and so why should you bother.

The reality is every recovery is real recovery. Even if you do slip, you do act on thoughts and use behaviours. It’s still recovery, as long as you recognise what your doing and make a real effort to try and change it.

Of course the ideal of recovery is to never use behaviours, but that’s not realistic.

Recovery has ups and downs and often a lifelong process. Often when you recover from an eating disorder the thoughts will become less and less but they’ll always be there in the back of your mind and you’ll always have to keep check on them.

Sometimes you’ll be doing great, sometimes you slip.

Slipping or not making as much progress as other people in the community doesn’t mean your recovery is less real!

Recovery is not linear, not the same for everyone and does not have to be all positive!

May was a Mess but that’s okay

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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?