chroniclesofrachael

[chroniclesofrachael]

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[chroniclesofrachael]

Long time no see. A series of worries at 3am. (Mini Read #1)

There are far too many things on my mind right now, so I figured writing about some of them might help me out. I’m also hormonal, so bear that in mind as you read. I’m going to post these as mini-reads otherwise this’ll be one long ass blog post.

Today is my last shift as a charity volunteer until my exams are over, if my manager will let me come back afterwards, that is. I’m on the verge of being sacked because my body isn’t even reliable enough to do a 3 hour shift one goddamn day a week. Since January I’ve been having to decide week by week if going to work on Tuesday is worth missing my lessons on Wednesday, because this has always been the case lately. I’ve had to swap out my priorities on a weekly basis, and even then I’m still not reaching my commitments.

[chroniclesofrachael]

Mini Read #2

Speaking of jobs, my lack of reliability is getting me seriously worried about my future. If I can’t even make one day a week in a charity shop, how the hell am I ever gonna hold down a real, full time job? Granted, I suppose if I’m not also trying to juggle education then it may be a little easier, but a 9 to 5 is still gonna kill me. If there’s one thing my chronic fatigue hates, it’s mornings. They even had to change my college timetable so that all my lessons were afternoon ones, and I’m still not making all of those! I’m seriously tired of my body failing me, slightly scared that my condition might mean I fail my exams.

[chroniclesofrachael]

Mini Read #3

Exams. Oh boy. This time next month both of my history exams will be over and done with, and I’ll be anticipating my sociology ones. I’ve been revising almost every night (though I took some time off for easter) yet I still feel unprepared. I somehow have to remember everything i’ve learned both this year and last, and that’s damn near impossible with my level of brain fog. My short term memory is seriously atrocious. I’ll read or write something and not ten minutes later has it completely disappeared from my brain. Thanks, chronic fatigue!

[chroniclesofrachael]

Mini Read #4

Another aspect of my future I’m highly concerned about is university, which I know is nothing unusual for someone my age. It’s not the thought of higher education that concerns me, it’s the idea of living alone. There is a part of me that’s excited about that future, especially if it takes place in Wales like I’m hoping it will, but the anxiety is real. I’m 21 and I’m still extremely codependent. I’m slowly learning how to take care of myself, but I have a long way to go yet. I’m still afraid to fry anything because of the potential of oil spitting at me, my dad still helps me with my personal hygiene, and I’m terrible with anything involving a knife. How I’ll ever cook anything that doesn’t use an oven is beyond me.

[chroniclesofrachael]

Mini Read #5

I applied for PIP again, begrudgingly. I was perfectly fine with my situation, but my mum insisted that I give it another go, meaning I have go through yet another assessment that will decide I’m not disabled enough or deserving enough to qualify for basic financial support. Receiving the outcome of this assessment is going to be another slap in the face that I’d much rather go without, and the criteria I have to meet to receive even the lowest amount of money is just ridiculous. I basically have to be an invalid who can’t do anything for herself to even qualify, and that’s frustrating as hell. We disabled people need that money to live our lives, and far too many of us are rejected by this biased and unfair system designed to decrease the amount of people worthy of help.

[chroniclesofrachael]

Mini Read #6

I went through a weird breakup in January, and it’s still effecting me every so often a few months later. My ex was a large part of my life for most of 2018, and I think I’m trying to replace that with every opportunity to socialise that I can get, since I no longer have him to go out with. I started writing a year in review not long after we broke up, but it felt too weird writing about him when he wasn’t around anymore, so I never finished it. But here are some of my (other) highlights of 2018.

I made friends and gained a new best friend

I saw HAMILTON!

I went to my first Pride event

I went to several Pride fundraiser parties

I flew across the world by myself and spent two incredible weeks in Colorado with a no longer just internet friend and her family

I threw a Harry Potter summer party

I looked after my home and dogs for 10 days (with a little help from my friends)

I went to DragWorld for a second time

I got a C in my first half of my A Level in sociology

I turned 21.

Well. Time to find out if writing all of this was a massive waste of time or if it actually helped. Stay tuned. Hopefully it won’t be another year until I post anything, but no promises.

[chroniclesofrachael]

Not. disabled. enough. These three little words arrived in the form of a brown envelope and redefined who I am in the eyes of the government. Somebody I’ve never met looked at a report about me written by a paramedic who didn’t know what two of my conditions were, and decided that I’m not disabled enough for them to pay me anymore. I’m not going to dwell on the fact that I’m losing PIP, I’m privileged enough to not have to worry so much about that, though I realise many of those receiving PIP aren’t as fortunate.

But not disabled enough. That’s what really gets me.

When that letter arrived, I tried to recall the details of my assessment, but struggled to because my illness causes me to have brain fog. Then once I was done crying, I got angry. And I'm still carrying that anger as I’m writing this. How dare they. How dare a stranger decide what I am and am not capable of, and use that to classify me as not disabled enough. They don't know me, they haven't witnessed the things I go through, and yet they feel qualified to tell me that I'm absolutely fine. Well I’m not fine. And the government needs to know that.

I’m physically incapable of using scissors or even a knife. Is that disabled enough yet?

I can’t walk for more than two minutes before my legs begin to ache. Is that disabled enough yet?

I can’t remember anything for longer than ten minutes. Is that disabled enough yet?

I can’t wash my own hair or clip my own toenails. Is that disabled enough yet?

I can’t hold a pen for longer than five minutes. Is that disabled enough yet?

Some days I can’t even get out of bed. Is that disabled enough yet?

I use an electric or a manual wheelchair on a daily basis. Is that disabled enough yet?

These are some of things I struggle with every day. Is that disabled enough for you? No? Then please enlighten me. Tell me what constitutes as a disability in your book so that I can cross it out and write over it ALL DISABILITIES ARE DIFFERENT.

Disabilities cannot be generalised. Just because I’m not confined to a wheelchair or rely on someone to do everything for me does not mean I don’t count as disabled. Disabilities can be visible and invisible, mine is a little bit of both. And it’s cruel to dismiss those of us with invisible illnesses as not disabled enough. Just because you can’t see the effects of something doesn’t mean it doesn’t exist. We are disabled enough. And we matter.

[chroniclesofrachael]

Yay, flu season.

I’m tired. Extremely tired. Like, I could fall asleep at 6pm tired, and that literally never happens. I’m coughing, my neck hurts, and I’m both hot and cold. I’m shaking but also sweating, I’m coughing, and I’m extremely dizzy. All of this can only mean one thing: I’m ill. Which means I’m grumpy. And if you have a chronic illness, you’ll understand where I’m coming from.

Being ill sucks enough for healthy people, and for us it’s even worse. Every regular symptom is amplified, with the usual cough and cold thrown in for good measure. You barely move, both because every inch of your body is in pain, and because you simply don’t have the energy to even walk to the fridge and back. You’re both tired every second, yet unable to sleep. Hungry, but also have no appetite. These are the times when you wish for a downstairs bathroom, or a mini fridge right next to you.

Then there’s the worry of everyday life. You have to miss school or work, because you know that you just wouldn’t be able to focus if you made the effort to go. There might be events coming up in your life that are impossible to reschedule, and you may feel guilty about attending these even though you’ve stayed home sick from school/work. So not only do you have all this to contend with, it’s also gonna take you longer to recover. Thanks, immune system! God, I hate being ill. Hey, look at that! My first actual contribution to the community of chronic illness bloggers and sufferers. At least my lack of sleep resulted in this blog post. Maybe even being ill can have a silver lining.

[chroniclesofrachael]

http://www.bbc.co.uk/newsbeat/article/42556222/stansted-airport-staff-told-me-i-dont-look-ill-enough-to-be-disabled

I can’t say this surprises me. Invisible illnesses are just as real as visible ones and it’s a sad fact that not enough people understand that.

[chroniclesofrachael]

Welp. That didn’t last long.

So after a week of trying and failing to write about something positive every day, I’ve already decided not to do it. So that tells you something about my patience, or lack of it. But I’ve changed my mind about this challenge after two realisations. One: There might not be something positive to write about every day. And two: I’m not always gonna have the energy to write. So I’ve decided that if I don’t have anything positive to write about one day, then I’ll try to find a positive news story to highlight instead. And if there’s days when I can’t even do that, then that’s okay. It comes with the chronic fatigue territory. But I’m going to try.

I’ve also decided that I’m not just going to write personal posts. I like writing about the news. I haven’t done it in a while, but factual writing is what I’ve found I’m best at, and I’d like to work on it. I will still write personal posts when I feel like it, but I probably won’t make them the focus. So yeah. That’s what you can likely expect from this blog. But don’t hold me to anything. I’m an extremely indecisive person. Stay tuned?

[chroniclesofrachael]

A 2018 challenge (AKA one positive thing a day).

To give myself a daily writing task I’m going to write about one positive thing that happens each day, starting today. My short term memory is ridiculously bad so there’s no guarantees I’ll remember to do this every day.

2nd January 2018 - So today I’ll write two things since I should have come up with this idea yesterday. Last night I successfully washed my hair by myself. I know that doesn’t sound like a big deal, but it is to me. Most of the time I rely on my dad to wash my hair over our bath, as I’ve found that when I wash it myself, I don’t do a good job. Washing my hair over the bath is also easier, as the chronic fatigue makes it difficult to stand somewhere like a shower for a long period of time without beginning to ache. It sounds silly, but washing my own hair and actually doing a good job made me feel more independent, something I want to work on this coming year.

The other positive thing that happened today was the fact that I actually made it to a 9am lesson. Again, it doesn’t sound like a big deal, but it is to me. I rarely make an appearance in my Tuesday lesson for two reasons: I wake up in pain and don’t have time to rest before I have to leave, and I never sleep before 1am (Not by choice). So the fact that I made it in today is a good start to the year in my book, and a good start is better than no start at all.

[chroniclesofrachael]

Well, I did it. I got this post up on New Years Eve, by the skin of my teeth. It’s been fun trying to remember everything I’ve done this year and I hope any of you enjoyed reading this. Happy 2018!

July recap -

Once we got back from Morocco, after months of deliberation, hair chalk, and those silly hairstyle apps, I finally decided that I wanted to go purple. My hair is the one part of me that I actually take care of, and something I care most about. I know that sounds superficial, but the colour of your hair is a form of self expression, and it’s the main way that I express myself. A layer of bleach and hair dye later and bitch, I was a unicorn! My hair colour wasn’t the only big change I made in July, as I started my first job. There’s a charity shop literally two minutes from my house, and I was forever spending money in there, so it was the natural choice. I started doing one day a week, and I’m still doing that to this day. My nephew’s first birthday came around at the end of the month, and mum and I had the delightful task of transporting our handmade two tier birthday cake to Cardiff on a train. I don’t know how, but it got there in one piece. The day before his birthday, I watched my sister and my nephew get smothered in cake all in the name of a photoshoot. LJ had decided to do a cake smash photoshoot, and S was not impressed. He only touched the cake, a cookie monster one covered in blue icing, when he was forced to. When the shoot ended, S, who at this point was half baby half icing, decided to climb all over his mum. That baby got his revenge, and it was messy.

Reflection -

You can put a cake in front of a baby but you can’t make him touch it.

August recap -

Just another two weeks after being back home, I was, surprise surprise, on a train to Cardiff again. If you haven’t picked up on it already, I really like going to Wales. On the agenda this time were two epic events. Latrice Royale’s one woman show, and the big one, Drag World UK. I stayed with LJ for the last two weeks of August, and on the final weekend of the month, we caught the Mega Bus to London, where the greatest weekend of my life ensued. If you hadn’t guessed by the title, Drag World UK was the first convention of its kind to take place in the UK, where thousands of Drag Race fans flocked to London for the chance to see their favourite queens up close and personal, and LJ and I were among them. I had bought meet and greets for three queens so it was guaranteed I would meet them, but by several strokes of luck throughout the weekend we also got to meet four other queens we absolutely adored, which was just the cherry on top of the extremely dragged up cake. On the Sunday night we went to the Drag World after party and I witnessed one of the greatest lip syncs I’ve ever seen, a UK queen named Herr performed I Am The Very Model Of A Modern Major General from Pirates of Penzance, and was word perfect. It genuinely blew my mind and I’m extremely glad that it was one of my first experiences seeing a UK queen up close. That Monday, LJ’s husband drove up to London to pick us up. The plan was to walk through Camden Market, but that changed when we couldn’t find a single parking space. Then we went to Bodean’s for lunch, and randomly spotted Martin Freeman standing across the street from us! We then considered seeing The Play That Goes Wrong, but it was closed. Our last idea was to go around Harrods, but we were once again thwarted by the lack of parking. In the end, we drove around and saw a few of the sites before heading back to Swindon to take me home. If I had to choose one highlight of the entire year, this weekend would probably take the crown.

Reflection - Always check for parking before you make plans.

September recap -

As September arrived, I geared up to make my return to college, this time as a part time student. The plan was to start one A-Level in the form of Government and Politics, and to finally earn my Maths GCSE. This plan quickly went downhill, as I was informed that I needed a GCSE in both English Language and Literature, not just English Language, which I already had. So I had to change course, literally. Now I hadn’t banked on not being able to do my course of choice, so I had to think quickly. I went all the way through the course guide twice, and the only ones that appealed to me were ones I’d already studied or already attempted to before dropping out, with one exception. Sociology. I had considered doing Sociology when I first started my A-Levels in 2016, but decided against it. Now it seemed like the universe was determined to make me study it, and I wasn’t going to argue with the universe. Four months later and I’m happy with my choice.

Reflection - Sometimes the right choice is right under your nose.

October recap -

The majority of October was uneventful. I adjusted to being back at college and continued to work one day a week. Then at the end of the month LJ’s birthday arrived, and you guessed it, we went to another drag show. The queen in question this time was Max, who had blown us away when she’d supported Trixie back in May. Needless to say, we were excited. It was on this night that LJ and I discovered we much prefer drag shows in the form of theatre, or comedy, rather than one lip sync after the other, and that was just the opening acts. By the time Max came on stage, we were feeling underwhelmed and about ready to leave. It was a disappointing night, but at least it gave us some valuable hindsight. The next day we stayed at LJ’s with my nephew, and that Sunday we were heading out for LJ’s belated birthday present. We left Wales and drove to LJ’s mother in law’s to drop off my nephew before beginning a drive to London to see what should have been a Harry Potter Exhibit at the British Library. I’m starting to think the city of London has a grudge against us, as each time we’ve made plans there, with the exception of Drag World, they haven’t panned out. Thanks to the traffic, we missed our slot to the exhibition by two hours, and had to rebook it for February. We didn’t want to waste a drive to London, so we decided to explore Oxford Circus. I got my hands on some Harry Potter tea lights I had been wanting forever, and we heard Shape of You far too many times one person should in the space of three hours.

The day after our London adventure, I was back to college, and it was the day before Halloween. After finishing at 4, Dad dashed me home to get ready, as I was going to a screening of the Rocky Horror Picture Show at the college with my friend Miriam. Rocky Horror is one of my favourite things in the world, and I was excited to watch Miriam experience it for the first time. The night was brilliant. The drama students were all in character for the screening, and I was extra happy when there turned out to be audience participation during the screening. There’s nothing like being in a crowd of people who love what you love, especially when you’re all dancing the Time Warp in the aisles.

Reflection -

Traffic is always worse than you expect it to be.

November recap -

Like October, there was only one week in November that was eventful. On the 15th, we celebrated my mum’s birthday. For once, my dad had actually sorted a present that mum didn’t choose herself. He bought her a new version of the Nokia 3310, and I bought her a photo frame she had been wanting for a while. The day after that, I was back to LJ’s for our penultimate drag show of the year. It was a theatre show this time, Jinkx Monsoon and Major Scales in The Vaudevillians. We were front row, and it was hysterical.

Reflection - We should have made an effort for mum’s birthday before this year.

December recap -

December is always a busy month for everyone, and I’m not exempt from that rule. Not only did I have Christmas to worry about, I also had my birthday to plan, and a Christmas drag show thrown in for good measure. On the 9th December, LJ and I attended Christmas Queens at Tramshed. The show was incredible, but the wheelchair access was atrocious. There was no designated seating for wheelchairs, We spent all night singing and dancing along to Christmas songs with some of our favourite queens. Once I was home, it was time to plan my birthday. I wouldn’t have been able to celebrate with everyone on my actual birthday as it was a Thursday, and LJ and her family were at work. So we celebrated on the 17th, with the absence of my other sister, who was in Morocco. I saw her and the rest of her family on my actual birthday, where I received some sweet presents, most of which were make-up based. Four days later, it was Christmas! We woke up but didn’t open presents as we weren’t seeing LJ and her family until later that day. I had Christmas dinner with my parents and then spent the rest of the evening with LJ’s family, in which my brother in law lost his mind over a toy with dying batteries (It was very ‘It’s A Small World’), and my nephew tried to sit in his present before it had even been built. We spent boxing day morning at my other sister’s to exchange presents. A few days later I decided to start this blog, and well, you know the rest.

Reflection - Christmas presents are just as awesome no matter what time they’re opened.

[chroniclesofrachael]

A cliché end of year reflection post.

It’s a little weird for my first post to be a reflective one, since no one on here yet knows what I’ll be reflecting on, but here goes. I have a lot to look back on, more so than other years, so I’ve decided to do it month by month, first with a recap and then a reflection. Here is the first six months, and since it’s now Christmas Eve, I’ll post the other six months on NYE. Merry Christmas!

(Side note: LJ = my sister and S = my nephew).

January recap -

At the start of this year, I was stuck. In the winter of 2016, I let my sleep schedule get completely out of control, and the earliest I was even getting tired was 5am. I was missing far too many lessons to stay caught up, and come exam season, I would be toast. (Side note: Why is being toast considered bad? I love toast. I guess it means like burned? I don’t know.)

Reflection - I really shouldn’t have let my sleeping get so out of control over Christmas.

February recap -

Things weren’t much better a month later. I was feeling a lot of frustration with myself. I knew staying up late was a bad decision, I knew missing college was one too, but I just didn’t have the energy to try and change things. I had accepted the fact that it was too late to try and fix things, and so I didn’t.

Reflection - Ignoring my situation did nothing but delay the inevitable.

March recap -

By the end of February, I had decided to get my shit together. I spoke to all of my teachers and my personal tutor and informed them that I was leaving for the time being, but fully intended to return in September. Now that we’re in December, I can say with complete certainty that this was the best decision I could have made. Leaving college gave me time to sort out my condition, prepare to go back, and enjoy my time off. And enjoy it I did.

Reflection - I shouldn’t have procrastinated trying to solve my problem. It was simpler than I thought.

April recap -

I spent all of April in Wales, and I loved every second of it. The plan was to spend a few days with my friends who now live in Swansea, but that plan was cut short when we thought my electric wheelchair had broken down. It wasn’t until my sister and her family drove an hour to come and get me that we discovered the chair wasn’t broken, something was just unplugged. Oops. I spent the rest of the time in Barry and Cardiff with my sister, brother in law, and baby nephew. It was there that I first witnessed how strange and amusing babies are. I watched my nephew try carrot for the first time, which he kept in his mouth for 20 long minutes. Oh, I also just happened to be there when he said his first word.

Reflection - I really need to triple check everything is plugged in on that stupid chair.

May recap -

Just two short weeks after I left my sister’s, I was back again for a weekend. This time for my first drag show of the year! (Some background info - I’m completely obsessed with Rupaul’s Drag Race, this will be a recurring theme in my posts.) We went to see Trixie Mattel: Ages 3+, a drag stand up comedy show. Her support act was MAX, who sang show tunes live, which was completely up both mine and LJ’s alleys. Trixie was hilarious, as expected, and we left the show with a newfound appreciation for MAX, who is still severely underrated.

Reflection -

I shouldn’t have underestimated a lesser known Drag Race queen.

June recap -

When I returned from Wales, I immediately had to unpack my Cardiff case and pack my holiday case, as we were heading off to Morocco. I was surprised when my parents chose Morocco because they speak French there, and my dad, like so many other old-fashioned British men, despises the French.

Morocco was incredibly fun, but it wasn’t without it’s mishaps. During our stay, we decided to take a trip to the mountains. This is where it all went downhill (pun intended). We stopped at many local shops during our taxi ride through the mountains, including a furniture shop. There were two levels to this shop, and the only way to see them both was to use a small concrete staircase that really needed some light. I’m sure you can guess what happened next. No, I didn’t fall down the stairs, my mum did. Unfortunately, her face broke her fall, and we spent the next half an hour comforting her and allowing the shopkeeper to rub argan oil on her face and ankle. A few days later we were home, after two glorious weeks in the African sun, and once again, I found myself unpacking one case and having to pack another. You guessed it, I was heading off to LJ’s for one last time before college came back into my life.

Reflection - Never go down the stairs in the dark. You’re just begging for the universe to trip you up, and I do mean literally.