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.

Let’s talk anxiety and online school

I know for some people online school is a lot easier for their anxiety. No physically having to go in. Interact with the real world. See people. But there are some parts of online school that I find even more anxiety provoking and people just don’t understand why so in the name of awareness raising I thought I’d share.

Discussion Boards

I don’t know why but posting on a discussion board stresses me out. Being able to do it is only a recent thing. I know it’s irrational so don’t go telling me that or to just get over it. The problem with having really low self esteem when you have those discussion boards where you can’t see answers until you comment. You may wonder why:

  • What if I’m wrong?
  • What if it looks like I haven’t tried?
  • What if it’s too much/too little?
  • What if I get negative responses?
  • What if people decide they don’t like me/I’m worthless/stupid because of what I post?

The virtual group task

Do we all hate these?

Especially when we all have our own commitments and some of us may be abroad so how the fuck are we supposed to make it work if we don’t have much mutually convenient time.

So why does this make me anxious. For me it’s the starting. It’s when no one reaches out to the group. No one takes the lead but you are too anxious to do so. Again pretty irrational. You may wonder why.

  • What if they think I’m a swot/nerd?
  • What if they think I have no life?
  • What if they think I’m being too pushy?
  • What if I don’t word it right?

It feels me with dread, it paralyses me and it makes me feel physically sick. I hope I’ll get more confident as the year goes on but right now that’s how it is.

How do you feel about online school and how has it affected your anxiety?

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.

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?

 

 

 

 

Dealing with rejection

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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.

You are sick enough for help: Mental Health Awareness week

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It’s the end of mental health awareness week and honestly we shouldn’t need one but there we go, we still do. Although we have come a long way there is still a significant amount of stigma out there.

Today I want to talk about, well write about how we all have mental health and there is never a point where you are not sick enough for help. Be that therapy, counselling or medication or even just that little bit of extra support from family, friends and collegues.

Mental health is just like physical health. Sometimes it can be good, sometimes it can be bad, sometimes it can be somewhere inbetween and just like physical health we shouldn’t ignore it if we start to feel it going because if we do ignore it, it will likely get worse and have a knock on effect on other aspects of our life. If it gets worse, it’s harder to then get back under control.

Just like physical pain, it’s better to take action when the pains a 3/10 because once it gets out of control more and more needs to be done.

Ignoring your mental health and sacrificing it above all else in life isn’t a badge of honour, it isn’t a way to show how brilliant you are or how hard you try. Your not being pathetic if you take time out, get therapy, take medication that’s okay. You are valid. You are worthy. You are not wasting the time of healthcare professionals. Even if you live in the UK and are reliant on the NHS. If you think you are having enough of an issue with your mental health that simple self care isn’t helping and only you know that you are worthy of help. See your GP, self refer to therapy.

I know living in the UK it can be hard, especially as a teenager because CAHMS often only help you in a timely manner if your on your death bed and even then…. I won’t waste words ranting about CAHMS though.

Many trusts now offer self referral to therapy, although limited in their use for people like me with currently mild/moderate anxiety and depression this can be really helpful  I have a lot more anxiety than depression though! I’ve been really quite anxious these past few days just because my family don’t understand ME but the second I try to explain they start spewing abelist language on me. That’s an anxiety that’s hard to overcome, when the people who are meant to support you most don’t see nor understand your illness but it’s kind of your fault because have you really tried but the issue is your too anxious to try.

That was a tangent…

Although there’s still waiting lists it’s not the 6 months to many years that can be found with other forms of mental health treatment on the NHS.

You are sick enough, you are worthy and you are deserving. Remember it’s better to prevent these issues arising at all, through rest, be selfish once in a while. Self care is important, you shouldn’t burn yourself out trying to be everything for everyone.

The problem with Illness Bingos

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These bingos have been floating around Instagram for years, they’ve only recently popped back up into the stories of those whom I follow. Maybe due to pandemic caused boredom.

I find these bingos problematic, on many counts. Both the physical health ones and the mental health ones. This isn’t an attack on anyone I’ve seen doing them or anyone creating them because I’m sure many people don’t realise the issues with them. It’s just a harmless piece of fun right? Maybe… to you. But there are some real issues associated with them that I’d like to discuss.

With both the physical and mental health bingos create some sort of sick competition as to whose the sickest. Who can score the most with symptoms, treatments and comorbidities. There has been this toxic competition going round certain parts of the spoonie community before and it’s simply not okay. A place that many come to for support and a sense of community. A place that many people come to in order to feel less alone. It’s supposed to be a safe space and not a source of ones own illness imposter syndrome.

This can be even more damaging with the mental health bingos. It’s already common with mental illnesses for people to believe they’re not sick enough for treatment. These bingos make that worse.

Mental health bingos can also be hugely triggering, especially eating disorder bingos which often give ideas for behaviours that can be used or use numbers.

It hurts my heart to see these in the recovery community, where someone’s followers are often highly vulnerable.

The thing with Instagram and especially stories is that it’s hard to avoid taking in this information. Unless someone puts a trigger warning on before doing the bingo and you can then choose to click off of the story.

I know how hard that is when we have limited energy and when we may not realise the trigger as it doesn’t trigger us. But if you want to engage in these bingos I believe it’s the safest way to do so.

 

My Mental Health is Suffering in Lockdown

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And we are in week I don’t even know of lockdown. But it’s fair to say the lack of meaningful human interaction is starting to take it’s toll. I’m an introvert but even us introverts will start to crack if left alone with our thoughts for too long. I’m lucky I have access to social media and people to talk to virtually but I’m definitely starting to feel more low than usual.

My sleep schedule is non existent

I’ve started having anorexic thoughts again. Sometimes some really intense ones that have been hard to not give into.

My brain fog is worse and my ability to concentrate also worse.

There are things other people can do, which would help like they’re daily outdoor exercise which I’m not yet really well enough to do. Daily. (Although getting there)

I feel this social experiment COVID-19 has played on us leads to two questions being asked.

Will we have the mental health services and resources to help everyone after this?

Is there going to be more awareness of the fact that poor mental health in people with chronic illness is oftentimes secondary as a result of the isolation it causes?

I really hope so!

 

 

 

Mental health in the workplace

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Maybe this isn’t the best time for this blog considering the majority of the world is either not working or working from home but I feel like the same points still stand. And if anything not working/working from home can bring up more anxiety, and I predict even more so when the time comes to go back into the office.

A workplace environment can bring up a lot of anxiety, and resulting depression. It may also lead to eating disorder tendencies coming back due to anxieties about eating in front of people, not having sufficient breaks or not being able to eat the same food.

I know my mental health is often associated around the workplace. Be it thinking no one likes me or thinking I’m not good enough. I’ve also found myself getting anxious over how often I get up from my desk in the office environment. Especially in the office I’m in right now, where my job does not require me to get up to go to the printer on a regular basis.

I find as a perfectionist, the pressure gives me a lot of anxiety. The pressure to be perfect. Which is hard when I have chronic illnesses that make being perfect impossible.

If you find your job is negatively impacting your mental health remember it’s okay. Especially if transitioning to a new role. Take time for self care, take time for hobbies.

Try and find the positives.

Many workplaces also now have mental health first aiders if you find yourself in a crisis at work.

Remember to open up to others. Don’t bottle it up. You’ll likely be surprised to find that other people have been through similar things. We all have mental health and although we won’t all experience a clinically diagnosable mental illness in our lifetime, everyone will experience certain lows and a level of anxiety. Also sharing a problem really helps, bottling it up only makes it worse. If you have no one to share with 7Cupsoftea is a good website for this!

Don’t stress about what you can’t control. I know many people have been and are still worried about their job security during this pandemic. You can’t control that. So try not let it eat you away. By all means come up with a plan but don’t catastrophise.

It’s okay to get help. By this I mean professional help. If you feel you would benefit from therapy or medication then that’s okay. You do you. Do whatever helps you. (Providing it is safe, non-destructive and isn’t going to harm you or anyone else)

Finally, don’t beat yourself up. Your not weak. Your not pathetic. Your not melodramatic. Your human. Beating yourself up is only going to make your mental health worse.

Stay safe everyone. Look after your physical and mental wellbeing and I’ll see you in my next blog.