Quotas

I now have two options, do I say I don’t care how I got in, just that I did? Or do I say that I don’t want the offer if it’s not based on my own merit?

It’s been a whirlwind 2 weeks at work and I have been meaning to update but I just couldn’t carve out the time to do so (it was all spent sleeping). My big update of the week is that I got my results a few days ago and I am incredibly proud of myself. I know I cannot always blame my condition for things that do not turn out well in my life but this is my first year where I have not been hospitalised because of Sickle and it was nice to see how well I can perform when I am unhindered. I have 20 credits left to do before graduation and now I am counting down the days to when I receive my diploma.

Anyway, I did have a topic in mind this week, which is about university and exams. It’s something that has lingered on my mind since before I started my degree and I think now is the perfect time to get it off my chest.

I remember when I first got an offer from my university. I had strong predicted grades to get in to the university itself so while I wasn’t too nervous about that aspect, the acceptance process included an interview and maths test. I absolutely bombed my interview, I had never been more nervous about anything in my life. To this day I still remember how sick I felt on the train ride up. This was something I wanted so badly and I knew I couldn’t afford to mess it up. Miraculously I got an offer and I was so proud of myself. My parents were too of course, and I know my friends had applied for similar courses who didn’t get in so I knew it was a big achievement. 

My sixth form was relatively small and since we had all grown up with each other, everyone knew everyone. As soon as I had gotten the good news, I messaged my friends and information like that spread like wildfire, so by the next morning everyone knew that I had gotten in. One of the girls that I was never really friends with came up to me and said something about my university having a quota. It was a throwaway comment, but it stuck with me for all these years. My course is very small – we started with 50 and there are much less than that now with almost half of the course failing an exam – and I was very aware that there were exactly 5 black students.

Don’t get me wrong, it doesn’t bother me at all, they’re nice enough but none of them are my friends. Of course we’re more likely to have similarities in terms of culture and upbringing but that is not a requirement for friendship. I remember sitting in my economics class in sixth form and it taking me the best part of a year for me to clock that I was the only black student. The thing that did prey on my mind however, was the fact that 5/50 is exactly 10%. Being a female, ethnic minority student with a disability, was I always going to get in? Is there some kind of university policy that states that there must be at least 10% black students?

This got me thinking about my condition. As much as it is an inhibitor to studying, social life etc. what opportunities have I been granted because of it, or because of the colour of my skin? I now have two options, do I say I don’t care how I got in, just that I did? Or do I say that I don’t want the offer if it’s not based on my own merit? I know the work-place isn’t as ‘soft’ as this, while people with disabilities do normally get to skip the first application stages, they have an equal chance as any. And the Equality Act now means that you can get through to the final stages without the interviewers knowing anything about you other than your merit. But the course that I am on is a big leg up to the direction I want to go on. It provides me with great opportunities and I don’t know where I would be without it. If I wasn’t black, or female, or with a disability, would I still have gotten an offer?

But this results day especially has helped me reach a conclusion to this dilemma. I have been so proud of my results, the ability to know my potential and see it being realised is something that I have not had fully for a long time.

I have concluded that I deserve to be here, and, at this point in time, I don’t think anyone else could tell me otherwise. I am on this course with people older than me, people who went to private schools, people who have a higher household income than me. And yet, these people have failed exams, had to leave the course, and I am still here. That’s not to say that I am better than them, but over the last 4 years I have proven my worth and proven that I deserve a place on my degree. I have proven it to myself, and since I am my harshest critic and biggest celebrant, that’s really all that matters. 

So I guess the message for this post is that if you ever have any doubts as to your potential or even self-worth, try and remember your journey so far. Odds are it hasn’t been plain sailing, there’s been bumps in the road and sometimes you’ve fallen, but you’ve always gotten back up. It doesn’t matter if you have a medical condition or not, we’ve all been in the same position and likely to be there in the future.

I can’t guarantee I’ll update every week for a while – it may have to be bi-monthly. Anyway, I hope the message has been somewhat helpful, these results have really helped me close a chapter in my life that has been open for way too long. Of course I imagine it’ll still be open a crack until graduation but I feel much better about it all.

Also I hope this shows the power one small, throwaway sentence can have on someone. I can and often do shrug most things off, and encourage others to do the same. But this doesn’t mean we should say things without first considering their potential impact on another person. I’m not going to say something cheesy like spread happiness wherever you may go, but engaging your brain with your mouth is a small step in the right direction.

Anyway I’ve been very preachy today, I guess this is what you get when I write a post on a Sunday after Church. Gravity time;

I’ve given up asking rhetorical questions. What’s the point?

Work Work Work Work Work Work

Sickle cell does that in a way, restricts and constricts you.

Today marks my first day (back) at work on my final placement, we have a swanky new office and it’s all very nice. It may also mean my updates may not be as regular as I’d like them be since it’s an accountants busy season which means long and stressful hours. Anyway, for this post I wanted to take it right back to when I first thought about becoming an accountant and the other careers I ruled out (possibly) because of Sickle Cell.

I remember talking to my mom about potential careers and all the things I was considering doing being crossed off one by one. Sickle cell does that in a way, restricts and constricts you. As a kid that’s heartbreaking – you’re supposed to see your future as one big possibility where you can do anything as long as you work hard enough. I was always a smart kid, nothing should have been out of my reach and yet it was.

One option was a teacher but I wouldn’t have been able to watch over the kids at break time because of the cold so that was out. I’d be a pretty bad teacher to be fair, I love kids but I’m also indifferent to their needs and problems – I’d never know the right thing to say to them and the parents would no doubt complain. I was a private tutor for a few years though – and amazing at it I might add – but I guess comparing the two is a lot like comparing babysitting and parenting. Apparently my granddad refused to child proof his house because it’s the kid’s fault if they bump into anything and they should know better. I resonate with that more than a little bit.

I also wanted to be a nurse but all that walking on wards would have ended me I’m sure. My mom is one and I always looked up to her and the concept of helping people. I was crushed when I realised that wasn’t an option for me. But in hindsight, those careers would not have been suited to me. I don’t have the resilience to work those jobs but I would have liked to figure that out for myself rather than Sickle Cell cross it out for me. I think I would have liked to be a Doctor, treat people with my condition, but I definitely do not have the aptitude or patience to study for that many years.

And all this isn’t to say you shouldn’t aim for exactly what you want to be, I’ve settled on a career that I am very passionate about and hope I will love. Everyone should be able to be free to find a career like that, condition or no condition. Theoretically, nothing should stop you from achieving what you want and although it doesn’t quite work like that in practice, I think Sickle Cell is a wholly manageable condition. During my life though, I’ve realised that Sickle Cell means sacrifice and compromise. I’m not sure whether it’s the right attitude to have, so I won’t advocate it, but it’s what worked for me. Once I realised this condition was going to stick with me no matter how much I tried to freeze or dehydrate it, and considered its needs from time to time, I was much better off.

I’ve probably said this before, but it is a fine balance. Sickle Cell cannot and should not be prioritised all the time, but also it is difficult to prioritise yourself constantly at it’s expense. Life is full of risks, and for me that sometimes means going to the shops without a coat or missing a day of medication but when the consequences can be so severe it has to be questioned whether the risks are always worth it.

But times are a-changing, and many workplaces and careers are more aware that people need flexibility and understanding. This is what we need to enable the balance to be maintained, and to ensure anyone, with any condition can do whatever they want to do.

Gravity time – My dad has suggested that I register for a donor card. He’s a man after my own heart

Sinnerman

For me I achieve things because of my condition.

Finally exams are over and since my only source of stress is results day and work, I’m feeling pretty good. I mentioned last week about the nosebleeds, they’re still going and getting more frequent which is quite worrying – I had three last week. I bought a nasal spray to stop the dryness but who knows what the real problem is.

I’ve been reading a few other blogs over the last few weeks and one of them includes that of Paul Sinha. If you don’t know him he’s a comedian and chaser on the ITV show ‘The Chase.’ He recently got diagnosed with Parkinson’s and so I’ve found it quite interesting to read about how he’s coping with the diagnosis and the impact on his future life. I have noticed however, that we have varying approaches to our conditions. I should start by saying it is a little unfair to compare Sickle Cell and Parkinsons. Admittedly I know next to nothing about it, but if I had to choose between the two I’d pick Sickle. Now that may be the case of the devil you know but either way I’d say that Paul has it much worse than me.

Anyway, Paul’s approach to his condition is very interesting. In his blog, he mostly talks about his achievements, and the one that stuck in my mind was his recent winning of the British Quiz Championships. This is a big deal in quizzing terms and for him it’s one step towards defeating Parkinson’s and showing that it will not stop him for achieving what he wants to achieve. That really resonates with me, and it’s a mentality I strive for in my life. But in reading his blog, I find that he goes by the motto of ‘I have achieved this in spite of my condition’. For me I achieve things because of my condition. It is Sickle Cell that taught me independence, work ethic, how to be healthy. Without my condition I wouldn’t be where I am today.

And that can be interpreted one of two ways. Firstly, without my condition I would be in a much better position than I am now. This of course makes sense, without having to attend hospital appointments, take medication, be ill, worry about the cold or what I eat, why wouldn’t I be much further in life? But for me, without all that, I don’t know whether I would have learnt how to manage my health, or how to speak up for myself. Without my condition I feel that I would be in a much worse position than I am in now.

But honestly, the main reason why I chose to talk about Paul’s blog today was because of a sentence in a post that I read which really struck me.

Blogging is a curious and narcissistic activity. I am constantly consumed by self doubt as to whether I am adding to anybody’s enjoyment of human existence by explaining my love for the music of Prince, why I believe that people should be ashamed to buy the Sun, my sympathy for Ben Stokes, or why I think live comedy is one of the greatest of all entertainment forms.

Paul Sinha

This resonated with me as I often wonder if this blog is adding to anything within society and whether it is a little egotistical for me to just blog about me and my life. But then I remember that this blog is free space to write down my thoughts and feelings. That cathartic process is valuable to me in ways that most people couldn’t imagine and I treasure that far above the worry of whether it adds value to anyone’s life.

So while I will still keep track of the numbers and find it amazing that someone is reading from Asia, I’ll always remember that this blog is for me and that fact should never stop me from speaking my mind.

A link to Paul Sinha’s blog if anyone is interested – https://sinhahablog.wordpress.com/

Gravity time – A man tells his doctor, “Doc, help me. I’m addicted to Twitter!”

The doctor replies, “Sorry, I don’t follow you …”

Nosebleeds

The thing is, Sickle Cell is a serious condition, so when you have an unusual pain or feel strange, don’t be afraid to ask whether it’s the cause.

It’s exam week two and it’s as exciting as it sounds. I have two exams this week so once again it’s going to be a short post. I am (again) unprepared with a topic, so I’ll just ramble and see what comes out. It’s not that I don’t have some things ready, but I want to spend time and do them justice which I know I can’t do right now.

Since this is something that has been bothering me for the last few months I might as well jot it down. It’s not the most interesting of topics unfortunately but it is real and part of my daily life and that is precisely what this blog is all about. I have been getting nosebleeds, approximately once a week, for the last two months. They happen morning or night, sometimes I just wake up and it’s happening. I’m convinced it’s linked with my Sickle, but when you have a blood disorder and blood is dripping from your nose it’s pretty easy to jump to conclusions.

Since Sickle is all about the blood vessels contracting and stopping blood flow, I find it difficult to think of a medical correlation, but I also have no clue as to what else it could be. I spoke to the specialist nurse earlier today and she suggested stress as the cause. Considering this is my most relaxed exam season since I started uni and it’s never happened before I’m a little dubious. I’ll be interested to know whether it carries on post-exams, so I’ll try and remember to keep this updated.

This does bring me onto Sickle Cell and other medical problems. I know what Sickle pain feels like, I don’t know if anyone else is like this but I can get pain and quickly rule out Sickle because it just feels different. The problem is, after you’ve ruled it out, what else could it be? As someone with a long term health condition, it is difficult to know whether any extra symptoms are indications of the condition or something else entirely. I had periods of blackout vision for 2/3 years, it’s still not fully fixed but this was linked to my condition and I never would have guessed it. I’ll definitely do a post on that because I think it’s important information to anyone else with the condition – when it first happened it was definitely one of the scariest experiences of my life.

I’ve lost the point a little, but what I was trying to get across was the struggle of self-diagnosing yourself when you have a medical condition. It is especially tough when the specialists in their field (optometrists, doctors) don’t know anything enough about your condition to provide the correct diagnosis. I’ve had several experiences of this in my life, and normally it’s my mom – who was a paediatric nurse – who speaks up and gives a better suggestion. The thing is, Sickle Cell is a serious condition, so when you have an unusual pain or feel strange, don’t be afraid to ask whether it’s the cause. The worst doctor’s can do is refer you onto someone else, and don’t stop until you’re satisfied with the solution. I would have never known there’s an optometrist that specialises in Sickle Cell.

What I’m trying to remember is that blood is everywhere in your body. I know that may sound stupid, but strokes, pulmonary embolisms, thromboses, it’s all blood related. It’s not an organ but it’s powerful, and having a condition that means your blood isn’t normal means that that condition is powerful too.

I’m not sure why all my blog posts end on a depressing note. I know it’s called sufferer and all but it’s not what I intended. Hopefully next week will be cheerier.

Gravity time. What do you call the soft tissue between a shark’s teeth? A slow swimmer.

The ‘Real’ World

When I am thrown into the deep end of doing all this for myself, will I be able to cope when I have this immovable object which is my condition trying to oppose me at every turn?

A short one this week because, as much as I love writing this blog, I have an exam tomorrow which I should be revising for, and I don’t need anymore reasons to procrastinate. Unlike normally, I don’t have a specific topic in mind for this week so I’ll just write and see where it takes me.

These are my last few weeks at university, and away from home, which has gotten me thinking a lot about the future. For the past 3 years the furthest into the future I could reliably see was me graduating from university. Since my course is pretty cool and I knew I’d more than likely have a job after that, nothing much else mattered and I had no reason to view my life further than that.

Of course I have a rough sketch of my life after university, I know I want to work abroad for a bit, buy a house, get a better job. But it’s nothing that I have to do, once I started university I knew I had to finish it.

So now, looking forward, I need to visualise how my proper adult life (I refuse to accept that I am an adult now) and sickle cell will work together to help me achieve my goals. Life has already thrown me a few curve balls, I went from no hospital admissions in 5+ years to 4 in 2 years. Once again, going a year with no major crises has lulled me into a false sense of security, but I could easily take a turn for the worst again. And that isn’t to say I haven’t coped so far, but I always view university as the transition to the adult world. Everything around you is still very artificial, you have a community of people similar ages to you, university tutors, student loans, it’s a constructed society to best enable you to achieve.

The world isn’t like that. As much as I wish it weren’t true, many people are out for themselves and you (at entry level positions at least) are replaceable. Currently the people where I work are very understanding, I’m not placed in environments that are too cold, flexible hours for my appointments, and water is aplenty. But in this world, what happens if I’m ill for a month, 2 months? Will my job still be there? I know there are certain disability rights and so forth, so looking into those could be the answer to my these questions, but it’s not completely the point.

Life in the ‘real’ world – what I always think of as adulting – is about balancing money, work, family, friends, health and much more. When I am thrown into the deep end of doing all this for myself, will I be able to cope when I have this immovable object which is my condition trying to oppose me at every turn? I guess this is a rational fear that everyone else has as well. Life is hard enough I think without a medical condition, so this must be a thought process and resultant struggle that many people go through.

But don’t get me wrong, I am so optimistic for the future. It would be an odd day if you caught me in a bad mood or pessimistic about something and so despite this post of worries, I know that I can conquer all this. Sometimes I think it is better to ponder these problems now so that you’re prepared for them if they are to come, rather than being blindsided. So in the hope that this blog will still be going when I finish university and start working I’ll be sure to let you know what happens.

I bet this worrying has mainly come out of me projecting my exam stress onto my condition. When my results come out next month (provided that they’re okay) I guarantee the post will be all sunshine and roses, but until then, enjoy.

Gravity time – I’m only a few posts in and I find myself running out of jokes which I find worrying, if anyone wants to contribute I’m all ears.

What is a scarecrow’s favourite fruit? Straw-berries

Vexing Circumstances

When you have a crisis you realise how much support the people around you will give.

Last post I spoke about events that forced me to live a healthier lifestyle, and so for all the readers out there dying to find out what that was, I’ll talk about it in this post. I should state though, that saying “healthier lifestyle” isn’t strictly true. I always ate well, and looked after myself the best that I could but following what happened I took less risks, like going out when it was really cold or pushing myself exercise wise. As already mentioned it really has helped and in some ways I feel better than ever.

Anyway, without further ado here’s what happened. It’s nothing major, just a crisis followed by awful university support but it’s something I’ll never forget, and will consider it a lesson learnt. Since I write some bits ahead of time it’s all wrapped up in my various thought meanderings.

When you have a crisis you realise how much support the people around you will give. My big wake up call was having a crisis a week before my university exams. It wasn’t the worst I’d ever had, but it was the first time I had to call an ambulance. I was up for hours in pain and called my mom when I couldn’t take it anymore, sometimes I need her to talk some sense into me. I managed to pack a bag with some cue cards, a change of clothes and a phone charger (the necessities of course) and off I went.

I was discharged 4/5 days later with a discharge form from the hospital explaining what had happened. I knew extenuating circumstances was a thing so I emailed my personal tutor about what had happened who advised me to wait to sit my exams in August. I decided to go ahead and sit them in May because I wanted my summer holidays to do what I wanted and applied for extenuating circumstances as a backup. I probably didn’t get the marks I was capable of but I did it, and shortly after results day I got an email to say my extenuating circumstances request had been rejected. I was mostly just happy that I passed, but it made me realise that I need to do all I can to stay healthy, because if I get ill again, I will have nothing to fall back on.

I always hear about people that get ECs because of something they made up, and that makes me feel even worse. My housemate got ECs because of an ear infection, I’m not saying she didn’t deserve it, but I know that I was impacted by my condition more than she was. I wish I could do something about it, but currently this is the only way I can vent my frustrations. It was also at that time I realised how amazing my friends really were. Phone calls everyday from them and a pickup from the hospital sounds small, but it really helped me get through that period. I think I’ve said it before, but Sickle Cell really is a mental condition as much as it is a physical one. Little things like that really help to battle the mental health side of things. 

It scares me that this condition which I am sometimes powerless to stop, means that all that I have worked for could be for nothing if I am faced with the prospect of retaking my exams or even redoing the year. As a 4th (and final) year, with exams just over a week away, I have little worries that this will impact me anymore but it makes me angry that all across the country there are people with all sorts of conditions that do not get the support they should have. These are not just people with my condition but with many conditions who deserve support and are not getting it.

This is a problem that reaches far beyond the university system. In school I have had problems with teachers causing asthma attacks, sickle cell and many other lifelong conditions are not able to receive free prescriptions, people are prevented from doing jobs they want to because of their condition. And this is not to say things aren’t changing, they are and it cannot be denied. But when you face such problems yourself and they have such a huge impact on your life it makes you realise what a big problem this is, and wonder if it will ever truly go away.

I hope that one day, if things haven’t changed already, I am rich enough or influential enough to do something about these wrongs in the world. I know I am just one person, but if I can change just one person’s journey for the better, I can rest easy. I hope today’s post sated some curiousity and helped deliver a different perspective on things. This was almost 2 years ago, and it still ignites a fire within me that I don’t think will ever be put out.

Anyway, onto the more humourous part of the post, it’s gravity time.

I don’t trust stairs, they’re always up to something.

Happy New Decade

I can’t speak for what the next decade will hold for my health, I’m happy to have the mystery.

Not only have we had the pleasure of entering a new year, but it’s a new decade as well. Being a late 90s kid, I have the pleasure of this being my 3rd decade while only being 21 which I think is pretty cool.

I’ll admit, new years don’t mean much to me. The 31st of December feels no different than the 1st of January and so apart from feeling old, it has very little impact on my life. Despite that though, I figured I’d use this time to do a little self-reflection. At my age, 10 years means a lot of change – going from 11 to 21 is pretty much half my life and it’s amazing what can change in a decade.

So this blog post is going to be a little self-indulgent, which I would apologise for but as Leslie Gore said, it’s my blog and I’ll indulge if I want to. Or something to that effect.

In 2010 my relationship with Sickle was pretty bad. As someone in their first year of secondary school I just wanted to keep up with my new friends. Only two other people came from my primary school to secondary, and I wasn’t friends with them before, so was essentially on my own. None of my new friends wanted to stay inside (what 11yo does?), even during winter so of course I had to be outside too. In case anyone didn’t know, Sickle and the cold do not get along. I definitely had a lot of crises during that time, mostly my own fault of course, but they still didn’t convince me to act any differently.

My health improved a lot though around 2013, I didn’t have any hospital admissions, I was taking my medication routinely and I was eating well. Apart from the stress of GCSEs, life was good. It had a lot to do with me not caring what other people thought, at that point I just did my own thing and if that didn’t match what other people wanted to do then fine with me. Sixth form was a real breath of fresh air for me, there were much less people and I could stay inside for most of the time.

In 2016 I started university, and that was a disaster. I was ill more times than I can count, topped off with pneumonia in 2017 and the hospital admissions just kept piling up. I knew that adapting to a new city wouldn’t be easy, but I had no idea it would be that hard. I genuinely thought that my health was just going to deteriorate from there (so did the doctors, I was on 7 tablets a day at that point) but due to events which I’ll explain in a later post, I made a real effort to be ‘healthy’ and it worked wonders. I can happily say that I ended 2019 on a medical high, with no hospital admissions and barely any crises.

Anyway the point is – if there ever is a point to these posts – is that a lot can change in a decade. I’m not one for inspirational messages or such like but if this tells you anything, it’s that there’s always going to be a lot of ups and downs on any journey you take. And odds are, at the end, you’ll be the one on top. I’d recommend taking a few minutes out of your day to just look back on the last decade and see what you’ve accomplished, I bet you’d be amazed. Remember it if times are ever tough so you always know what you’re capable of.

I can’t speak for what the next decade will hold for my health, I’m happy to have the mystery. But what I do know is that it’s going to be a decade of many achievements and upheaval. I want to graduate uni, land a great job, buy a house, and live abroad for a while. Changes like that almost always provoke illness, but it’s how you deal with them that I think really matters.

As always, I hope that this post has helped somewhat, even just a little bit. I know it really helps me to get my thoughts down and so if it helps anyone else just a fraction of what it does for me then I can rest easy.

It’s a new year but unfortunately it’s the same bad jokes. It’s gravity time.

There are 10 types of people. Those that understand binary, and those that don’t.

My Morphine Experience

I worry that one day my body will become so tolerant to medication that there will be nothing left to stop the pain.

The first time I had morphine was definitely an experience. I managed to dodge it for a long time. I know having morphine means you’ve reached a pretty significant stage pain wise and I didn’t want to go there. It was inevitable though, and happened in 2018. I’ve had morphine every time that I’ve been in hospital since which really worries me. It signifies that the pain is getting worse, and while I’m not against hospitals, I’d much rather deal with my pain at home. Unfortunately you can’t do that with morphine level pain, I think they do prescribe it, but only in certain situations. I don’t think I’d trust myself with it anyway. I’m really good with my medication, but sometimes, especially when you have things to do, pain is just an inconvenience and you want that quick solution to get rid of it. I feel like that’s what morphine would become. I’m already at the stage where I take codeine for my period pain, which admittedly is normally really bad. But often that’s because I know it kicks in faster than ibuprofen, not because that’s my level of pain.

Anyway, morphine is an interesting one. I imagine it affects everyone differently, but I honestly felt like my brain had floated out of my head. My cousin works in A&E and my mom and her were having way too much fun watching my reaction. Interestingly though, the morphine only worked for about 20 minutes and then I was back in pain again. And after that date, it has never really been effective.

That right there is one of my biggest concerns. I worry that one day my body will become so tolerant to medication that there will be nothing left to stop the pain. I’m not sure how rational that is. I have little knowledge about pharmaceuticals and I know there are many different drugs out there. But I don’t think I should be going to hospital for every crisis I have. For one it’s an inconvenience, and secondly I don’t want to be taking up the bed space for someone that needs it. But if there are no effective medications left for me that I can get over the counter, or prescribed by the doctor, then what option is there? I know that morphine is not as effective as it once was, neither is codeine or ibuprofen.

I try now to only take pain medication when I really need it. That involves colds or really minor crises. Is this the right thing to do? I have no clue – perhaps it is a concern I should address with a health professional. I haven’t told her the specifics, but my mom does encourage me to take medication when I am ill. She was a nurse, so her advice has some weight but then I imagine she is only saying that so I can get over whatever illness I have as quickly as possible. It’s a tough dilemma that could be completely unfounded, who knows. But again a nice thing to get off my chest. Sometimes it’s only when I start writing do these things really come out. I was just planning to discuss how loopy morphine made me and look what happened.

Although I don’t mind talking about Sickle, I do admit that it sometimes can be depressing, discussing the pain and daily struggles so I hope that this was a little lighter. If anyone’s reading this in real time, have a great Christmas, it’s a time to be grateful for what you have and I’m trying my best to do so. I couldn’t really ask for more in my life so it’s not hard for me, and I hope that’s a trait I share with most people. Finally, sorry I’ve been a week late, coming home for Christmas is full of distractions and honestly I haven’t had much alone time with my thoughts to have material to write.

It’s an extra festive Christmas Gravity Time people, brace yourself.

What did Adam say the day before Christmas?

It’s Christmas, Eve

Sorry To Bother You

Sometimes I just need a good shake and for someone to tell me that it’s okay to ask for help.

The worst thing my condition has given me is a ‘sorry to bother you’ mentality. I’m not sure whether that’s the British in me or it is a result of my condition but I need to resent it for something. I remember being in primary school and being in excruciating pain. We had to do some arts and crafts project and I was too weak to even pick up the scissors. I don’t know what time of day it was but I waited until the end of school, my dad picked me up that day and we caught a bus home. We walked home from the bus stop and halfway there I just broke down, I was in so much pain. I’m not sure if I thought that by keeping quiet the pain would just go away but deep down I know I didn’t want to bother anyone. 

In last week’s post I said that 2011 was my earliest memory of being in hospital, and that still remains true. This was primary school so it would have been before 2009, I’d probably say 2006/7 maybe. But after admitting I was in pain, I have no clue what happened next. I assume I did go to hospital because the pain must have been really bad, and my Dad bless him probably wouldn’t have been able to deal with it at home. But the point still stands, one day I’ll look into why my memory is so patchy, but for now back on topic. 

I’m like that now though, regarding the whole ‘sorry to bother you’ ethos, but I am getting better. I can recognise that it will be worse the longer I wait and that sometimes I need to speak up. It’s funny because I’m always one of the loudest in a group, but wait for me to say that I’m in pain and you’ll forget I’m there. I think I just want to crawl into a corner and deal with it myself. Sometimes (rarely), that’s an effective method, but most times you need someone to shove some tablets at you and wrap you in something warm. 

The other day I had really bad chest pain, so I rang the doctors for an emergency appointment. The receptionist asked if it was an emergency because they were fully booked. I caught myself just before saying “No, it’s not an emergency” and instead made sure I got an appointment. I was proud of that honestly, I know it’s tiny but it meant a lot to me, and it showed that I was making some progress. 

Sometimes I just need a good shake and for someone to tell me that it’s okay to ask for help. I realise it sounds so simple and I’m sure plenty of people have said that to me in the past, but it’s a conclusion I needed to reach by myself. I can’t say I’m all the way there – I probably never will be – but I’m getting to a comfortable point. So that’s the knowledge I’m imparting this week, I don’t know who needs to hear it, or if anyone but me struggles with this, but the post is here and here it will stay.

Anyway, onto our joke portion. I did a Google for antonyms of the word ‘joke’, since I couldn’t think of anything particularly good. Anti-joke was a potential idea, but it sounds a bit odd I’ll admit. Google didn’t throw up any amazing answers either. Possible suggestions are: dullness, stolidity, stupidity, gravity, tragedy, and work.

I love the idea that work is the complete opposite to a joke – amazing. I feel that at times, I once got feedback saying I was too sarcastic, I have no words. Anyway I’ll use gravity I think, it makes absolutely no sense so it’s perfect. So making its confessions debut – it’s gravity time.

Doctor, Doctor I feel like a pair of curtains

Well pull yourself together

The Joy of Hospitals

There are some amazing people working in the NHS, and they put in 110% every single day.

My earliest memory of a crisis was being hospitalised around 2011. I have a terrible memory for my early life, I can remember very little. I’ve never been sure as to why, it’s like there was some traumatic event and I just wiped my brain clear. I probably didn’t want to remember all the crises. Being in hospital that time is one of my most vivid “early” memories. I remember watching a lot of TV, missing my friends at school, my parents coming to visit me, the terrible lunches that we had. Looking back it was a great experience, I’m not sure most people would say that about their hospital admissions but I’ve always liked hospitals.

I’ve never forgotten getting to watch a helicopter land on the pad right outside the hospital window. At the time I was staying in one of the fancy Children’s Hospital wards, and I think it was the Air Ambulance that landed. I had no clue what was going on, but all the kids gathered round the window and I joined. It was amazing to see, even more so now that I know the amazing work the Air Ambulance does.

But back to the point- crisis tend to be like that for me when I’m hospitalised. I don’t quite remember the agony I was in, but I recall the feeling of knowing nothing but pain and thinking it would never end. What I remember most, however, is the friendly staff, the hot meals, talking to patients, having visitors. Don’t get me wrong – I don’t want to be hospitalised, I don’t know the inner details of it, but my mom has always told me that crisis are bad because they weaken the area in which they take place. I’d much rather be at home, or out doing something fun, anything that doesn’t involve pain is great for me.

Especially recently I dread my crises because my Sickle Cell always seems to know when my exams are and times it perfectly. I’ll probably do a later post discussing that aspect. But my experience of hospitals hasn’t been at all bad, I don’t know who I have to thank for that but I do. It’s why, despite its faults, I can never say a bad word about the NHS. We’re so privileged to have such an amazing institution supporting us, and coming from a family of nurses and care workers, I recognise how overworked, underpaid and underappreciated they are. Even from working in the private sector, I know it’s the people that make an organisation, and the same applies to the NHS – there are some amazing people working there and they put in 110% every single day.

Anyway, my rant about the NHS is over. I think those rants will happen quite a lot to be honest. I’ll go off on a tangent and forget the point I was trying to make. But I think this just shows how like my inner thoughts this blog will be. It is honestly more like my internet diary than some amazing informative blog. I just have a lot on my mind, and it needs to go into some open space somewhere. I’d like to think other people, especially those with Sickle Celll, find some comfort in it or find it relateable. But I’ll keep blogging away regardless I think.

Joke time – and I think I’ll think of a name instead of ‘joke.’ It implies it’ll be something funny and I think we all know it won’t be.

Why did the blind man fall into the well?

Because he couldn’t see that well