Not Autistic Enough…

Well 2021 has been one wild ride of tears, physical illness, staring at my fingerboard, the resistance bands hung over it thinking about ending it. A masters that is not going well because mental health, lockdowns. My mum threatening to call the police on me (not the first time..). Pursuing an autism diagnosis and ultimately not getting it and now being down £1200. Maybe I should’t be sharing so much on the internet. Maybe it makes me unemployable but here we are.

And yes when I say 2021 has been a wild ride I know it has been two months and three days. Not like there’s another nearly 10 months left. (I can’t math).

Anyway. The Autism diagnosis or lack therof. Writing helps get my thoughts out. The overwhelming mass of tears. The fear that people think I’m lying, want to be special, manipulative or whatever other negative word people want to insert. The fear for the future. The where do I go next?

I struggled at school. Hung out with people because I had to. I didn’t want to be seen as a loner. And not that I didn’t like some of the people I hung out with. I did. I just never felt like I fit in. That trend has continued throughout my life. I’ve been pushed down staircases, hit over the head with a tennis racket, called a retard, been told my mums a prostitute (she’s not) and many other hurtful things. I’ve been excluded from birthday parties, friendship group cinema or shopping trips, reunions. I’ve been in trouble at school for taking games too far, for violently lashing out or verbally lashing out at people who anyone else would have called my friends. My parents have threatened to call the police on me more times than I can count. I’ve struggled to get a job. I’ve struggled to keep a job. Warned for my personal hygiene (realistically just me not wearing make up and my hair maybe being a but too on the unkempt side. It’s a frizzy mess I can’t help it. Trichtillomania doesn’t help). I’ve had difficulty communicating effectively with my team and manager, interpreting the intentions of what they say. The hotdesking situation caused major anxiety. And yes, I do struggle with personal hygiene although less so if I have to go anywhere. No lockdown has not helped me. I’m a hoarder, get attached to certain clothing items. I had to throw away a pair of jeans the other day that I’ve had since I was 15. Yes it was a sad day and yes according to my mum I should have thrown them ou t years ago. I’ve had difficulty dealing with changes in my bedroom. My dad got rid of the starry wallpaper I had whilst I moved away because it would never have happened whilst I lived in the house. I’ve had that wallpaper since moving into this room. (12 or 13, I’m now 23). I have various food related repetitive issues. Stim. Have to stroke the dog at night until the goodnight feels right or I can’t go to bed. Am a chaotic mess but also have to complete everything on my to do list or I feel like a failure. Even if it’s not completed well or I’m too sick to do it or something comes up. I have major issues with rejection and negative feedback and am awful at maintaining relationships.

I’m saying all this. And this isn’t even all of it to say that I am struggling with something and so you can understand why I feel hella lost and gaslit and like a made a mistake and life sucks.

So start of autism assessment. I believe your autistic and we will reach that outcome today. All goes okay for a while. I meet all of the social criteria. That was no surprise.

And then onto repetitive behaviour. This is a surprisingly restrictive section. What happened. Nothing that fits that neat box and they can’t use food because eating disorder history. Unless there’s concrete evidence of food stuff before. I came off the call and realised I didn’t say everything. Brain fog is a bitch.

The assessor thought my parents filled out the early developmental questionnaire even though when sending it, I made clear that I did. Instead of correcting her I kept up the lie because I cannot communicate effectively (what a shock). I do this. Once a teacher thought I was called Ruth so I spent the whole lesson being called Ruth instead of correcting her. I was 17. It wasn’t intentional. I was honest until the assessor made a mistake and I couldn’t rectify it because I can’t communicate. Lol. God forbid I say someone else is wrong.

And then it got slightly heated cause you know Hannah can’t understand questions or communicate effectively. And basically. Not repetitive enough for ASD. She said other hurtful things after me going into my childhood trauma but I don’t feel able to put them in the written form.

So maybe that avenue is closed. Which just makes everything feel worse to be honest. My parents have drilled into me that I am autistic and they’ve suffered hardships because they didn’t get me diagnosed to protect me and they could have just put me into care. All words that have been said by my dad. My mum, treating me like I am different, like something is wrong, like she needs to fix me and mold me into what she wants.

I’ve had a mentor say to my mum I probably have aspergers (I literally am so fucking paranoid that I used to hack into my mums emails to see what was being said about me). I’ve had friends suggest I’, autistic. Out of kindness. It’s not somthing I’ve made up to be special and I am struggling with something or a lot of things. Who knows what.

I just feel awful after the whole saga. And a week after the left of the list situation when I would be in group 6 if I lived in a different part of the UK is not ideal. I’m not sure what to do now. Or where to go. I know I am very depressed right now and asides from autism traits have many ADHD traits, which I have had for many years. So maybe that’s it? But we’ll have to NHS it because I don’t have money to spare now if I want a break after finishing my masters. Which my mental and physical health needs right now because I am not okay. Maybe I have BPD, maybe I’m bipolar. Maybe I’m just an awful person in every area of life and completely unemployable.

I’m not a professional so I don’t know. My A level psychology doesn’t qualify me to fix myself. Right now. A 6 week building resillience course to cope with the impacts of being chronically ill. If that doesn’t help alleviate the depression then I’ll beg for anti depressents of my GP. Maybe a referral to adult mental health services to try and get to the bottom of my life.

I need to finish my masters this year. But I also need to try and take care of my mental health. To some degree they seem like two contradictory goals because ME is a bitch. Roller skating brings me so much joy but managing it with these exams, appointments, coursework, events applications drains my body. I’ve been running off of caffiene pills and still been feeling very physically unwell. But we will get there and in July I cam have a break and try and not give into my parents pressure to get a job. Of course I’ll need one eventually but I need to take time. I need to stop. I need to sort myself out.

How it Feels to be Left off The List

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

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

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

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

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

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

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

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

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

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

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

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

I am one of them.

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

Monday

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

Tuesday

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

Wednesday

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

Thursday

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

Friday

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

Saturday

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

Sunday

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

Let’s talk autism, meltdowns and mental health.

Okay I know an employer doesn’t want to read this but I think it’s important to share and writing helps me get my thoughts out.

I’m probably autistic. I say probably because my parents think I am. It’s the word they’ve used against me when I’ve acted really not very mentally well. The word they’ve used to guilt trip me and the word they’ve used to make me feel like I’m a burden on them.

It’s not just my parents though, people with some sort of knowlege of autism have also recognised it. I just don’t have an official diagnosis because my parents wanted to “protect me.” All they’ve done is exclude me even more. All they’ve done is give me more challenges. I’ve not been provided with sensory items to cope with my autism, therapy to help me come to terms with it or been able to access accommodations and awareness in workplaces. This made my last job especially much harder than it already was.

Along with this I have mental health issues. I don’t know what exactly and I definitely think I need further investigations. A lot of the time if I’m up, I’m on top of the world. If I’m down, I’m down to the point it hurts. If I’m up I can be very impulsive and have to stop myself from spending too much. I may make reckless decisions safety wise and have got myself into my overdraft before when I really hadn’t needed to. If I’m up I’ll stay up until 1am, want to stay up more. Make the most of having some sort of energy that’s putting some sort of mask on the ME induced fatigue. I’ll be creative. Start new projects. I’ll be more ambitious, put myself forward more and apply for things. I’ll climb when maybe that’s not the most sensible decision at the time. I’ll not be able to concentrate. 101 things wizzing round my mind at a time. The me who can go out, drink until 4am not sleep at all and climb the next day. The one who is very energised doing so! I’ll feel like superwoman.

And when I’m low, I can’t stop crying. Staring at a screen, with nothing getting done. I may self harm. I get increasingly frustrated at little things. I honestly just want to cease to exist and sometimes I fantasize over the possibility of completing the unliving. I’m so depressed it’s paralysing. Wanting nothing but to curl up in a ball but the your going to fail anxiety wins. Not that I’m productive or able to think straight.

And then there’s the paranoid me, the horrible me. The yeeting phones into walls me. The me who wants to escape so much and is hurting so much that she leaves the house in the dark with nothing but a thin bouse when it’s -3 degrees outside. The me who loses friends and frays relationships with family. I don’t know if that’s an autism meltdown or a sign of another mental illness. But that me is never the one. It’s always distressing and always a blur. I never remember exactly what happened.

Right now I’m low. Low after something my dad said to me when I was acting not at all mentally well. It’s a deep low. A hole I feel just gets deeper the more I try to climb my way out.

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.

Lockdown 2.0

Here we are again. The UK has entered a 4 week lockdown *touch wood*. Non essential shops are closed, restaurants, cafe’s, climbing walls.

Just as I was getting well enough to climb regularly again.

No I’m not impressed.

But it’s not the be all and end all. The schools are still open so I’m not stuck with my family all day every day, with no escape other than an “essential shop” or a walk that I don’t really have time or spoons for. I’m still finding walking quite difficult!

But seriously it’s given be a chance to work on my conditioning so I’m not constantly injured when the walls open again and hopefully I’ll be a better climber.

I can count on 2 hands the amount of times I’ve been climbing since lockdown 1.0, and lockdown 1.0 was characterised by a v sick han, collapsing multiple times a day just from walking around my old flat. Once I started feeling better and being able to stay on my feet I still wasn’t a well han. If I did climb I felt very unsafe. I often lost feeling in my legs and feet, being on the wall wasn’t an exception to this. Weak, dizzy, lots of pressure in the base of my skull. Like my whole body was about to shut down on me, and I felt like that a lot of time.

So as you can imagine I’m very deconditioned and don’t trust my legs. A chance to condition. When I can’t go anywhere else is actually quite helpful! I also might dedicate some time to baking and some ever so essential shops for supplies!

How is everyone in the UK feeling right now about 2.0? How is everyone else doing?

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.