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.

I will add a Gravity joke later I promise

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