Health on Mike Bell - Blog & Stuff

Things I Lost In The Fire

hello@mikebell.io (Mike Bell) — Tue, 17 Jun 2025 18:14:09 +0000

It’s around 6 months since the pulmonary embolism and while recovery is going ok there’s still some things not right.

I’ve come to think of them as things I’ve lost in the fire. They’re not coming back or at least not without hard work.

Confidence
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My confidence has gone. I’m second guessing myself all the time. I’m not confident at work any more. I’m actively struggling with things I wouldn’t before. I think I’m faking it at times but I don’t feel right anymore. Before PE I’d have confidently told you why I deserve to be senior now I’m struggling to figure out if I deserve it.

Worry
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This I gained in the fire. Every little health niggle is a potential emergency even though I’m on all the right medication to keep me alive. I finally flew for the first time recently and I was scared shitless. I made it but I thought I wouldn’t at times.

Immortality
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I’d like to think I’d live forever but that doesn’t seem possible. I know it never was but you know the feeling of being 20 and nothing can stop you. Even worse this whole event probably shortened my life expectancy, I doubt that 80 is a number I can look forward to, maybe more like 60 which is only 21 years away, meaning I’m 2/3rds of the way through my life. I’m scared of dying and the thought chills me.

Life
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It’s not all doom and gloom I want to live, I feel like there’s things I’ve still not achieved. Cutting down to 4 days a week a work means that work is no longer my primary concern. Work should never be that but we’re taught from an early age that 5 days a week of either school or work is what you should do. I work to live not live to work.

Pain
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I’m in pain most of the time, whether it be physical or mental. I can’t hide from it it’s just there. Medication is helping to an extent but at the end of the day I’m in pain. It ranges from uncomfortable to sleep preventing.

I was reminded recently that my physical self harm scars are still something that most people don’t understand. I’ve come to terms with them but others haven’t, it’s fine but they have to listen to my side of the story, I’m not that person anymore.

Future
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Things I gained in the fire.

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I know what tried to kill me

hello@mikebell.io (Mike Bell) — Tue, 01 Apr 2025 12:50:54 +0000

I finally have some closure on the PE that turned my life upside down at the end of October last year.

I have it written on a piece of NHS branded paper. It’s innocuously included in a list of other ailments from a consultant only vaguely related the rest of the bullshit I’m having to deal with (health wise not NHS they’ve been ok/great).

I feel like there should be some lead up, some drum roll, a line of people all cheering me on as I pass a fake finishing line. But there’s not, in fact it’s not even a surprise, it’s an anti climax of oh shit yeah that makes sense.

What it is is Protein C deficiency, why am I familiar with it? It’s a rare genetic disease that my dad has. He’s graciously passed it on to me (and potentially my brother). It all makes perfect sense now I was unlucky on two fronts, firstly the genetic lottery as if inheriting my dads mannerisms wasn’t bad enough, secondly a host of planets all lining up to fuck me over.

So now I know it’s nice to know that the preventative medication I was put on (Apixaban) is exactly what I need to protect me in the future. I’ll be on it for life which isn’t ideal but I’ll get used to it.

The hardest part of this is the mental side of it, I’m struggling with it all, I don’t deal with trauma well and it’s eating me up inside. I’m working on it but some days it’s too much. I hope it’ll get better with time.

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Four months on from my Pulmonary Embolism

hello@mikebell.io (Mike Bell) — Sat, 15 Feb 2025 19:09:28 +0000

“You did it proper.”

Consultant

Adding to my list of things I never want to hear again.

Those words were proceeded by my consultant showing me the images of my chest and the two bright white spots that were the clots that nearly killed me.

Recovery isn’t easy, the physical side I can handle I can’t do as much, my chest hurts, my chest hurts more in cold weather. I’m on medication for the rest of my life now which is fine. Mentally is a lot more difficult. I’m not doing well I’ve always struggled with trauma and how I deal with it (spoiler alert: I don’t). I’m now at the point where I’m balanced between barely functioning and full breakdown.

The good news is I’m getting help both physically and mentally, the downside is that the physical side takes months to sort out and I’m still waiting for important tests. On the mental side I’m in therapy but that will be ending soon, it’s been so important and useful but it’s left me rawer than ever.

My life is a lot different to this time last year and I’m not sure I like it but I have to move on and get on with things. I’m dropping down to 4 days a week at work, it’s important that I balance health with work something I’ve never really done. My ME/CFS is still there and it’s even worse than ever now I’m not sure how I’m going to deal with it but it’s on the list.

I’m not ok but hopefully I will be.

(I’m also full of cold but one thing at a time)

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Feeling a bit lost

hello@mikebell.io (Mike Bell) — Sat, 02 Nov 2024 10:32:30 +0000

It’s been about 2 weeks since I was in hospital and things are starting to sink in. Firstly just how serious things got and secondly the trajectory my life is/was taking.

I’m trying to figure out when to go back to work, I’m having more good days than bad days but I’m not out of the woods yet, a new symptom is my lungs are aching when I move, it’s really as pleasant as it sounds. Part of me wants to go back to work ASAP but the other part of me is still trying to come to terms with work and the past 3 months.

I spent the past 3 months living for work, figuratively and literally. When things started to go down hill I was spending all day working and then the rest of the evening lying on the sofa waiting for 10pm so I could justify going back to bed. The process would then rinse and repeat for 5 days a week until it got to the weekend and I’d just rest up ready to go back to work. I want to work to live not live to work.

Not working isn’t an option I have to support my wife and cats so I’m feeling lost. I’m 100% sure that my attitude towards work was what made things worse, not the job itself (this isn’t about the job or people). I put work first and suffered for it. My behaviour isn’t going to change over night and I don’t even know how I would even start.

I’ve just finished up writing a “Statement of Suitability” for a promotion at work, yup even though I’m off sick. I’m not one of those people that won’t ever go back to work I love what I do and I finally believe I’m bringing value to millions of people whether they realise it or not. Part of me is not sure whether to submit it now, a promotion brings with it more responsibilities arguably some I’m already doing.

Again I’m feeling quite lost by it all.

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Bilateral Pulmonary Embolisms Suck

hello@mikebell.io (Mike Bell) — Tue, 29 Oct 2024 20:27:43 +0000

The title pretty much sums it up, BPEs suck.

How did we get here
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For most of the year I’d been feeling a bit off it, dizzy spells and being exhausted, I put this down to ME/CFS being a pain as per usual. In June we went to Cyprus for two weeks holiday it was hot but we had such a great time. When I got back I caught COVID (4th times the charm), whenever I get it I’m always very ill with it. 2 weeks after COVID I got a chest infection which was quite bad, I never really recovered afterwards. We’re pretty sure this is where it all went wrong and the bloods clots in my lungs started to form. From there my health has deteriorated to the point where I’ve been backwards and forwards to the doctors. Each time I went I was told the chest infection hadn’t gone and given either an inhaler or more medication. It was also around this time that I noticed my chest was aching, I have acid reflux and well and while it’s been managed for years and years I’d been getting aches and what felt like acid reflux again.

When I look back all the signs that something was seriously wrong. My lungs had been slowly failing until it got to the point where breathing was difficult and I came very close to dying. I remember saying to my mum that I wished something would go wrong just so I could get to the bottom of why I felt so bad, living with a chronic illness tends to do that to you.

Anger
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I’m not proud of it but I can’t help and look at other people who’re twice my weight and smoke 800 cigarettes a day and wonder why me. It makes me really angry and I know it shouldn’t but it’s hard not to. I can count the amount of cigarettes I’ve smoked in my life on 2 hands, yes I’m overweight but I’m exercising regularly and love walking. I just don’t understand why I’m so unlucky.

I’ve been dealing with ME/CFS ever since I was 16 years old, I don’t need any more crap. I’m angry about the whole thing.

Death
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This is something I haven’t quite figured out in my head. The amount of things that could of gone wrong but didn’t are mind blowing. I could have died and it doesn’t feel like it. My brain just can’t get round the fact that things got quite serious. Trauma is something I’ve always struggled to deal with it’s been a lot easier to just ignore things and move on.

Recovery
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It’s been a few days since I originally wrote the start of this post and things are getting easier, slowly but surely my breathing is getting better but simple things are making me tired. I’m having to rebuild my stamina from scratch. I’m off work still and as much as I’d like to be back I can’t. My brain isn’t working as well as it sh

Everyday is getting better.

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Notes on 17th to 22nd of October

hello@mikebell.io (Mike Bell) — Tue, 22 Oct 2024 15:56:50 +0000

I’m half writing this for the people mentioned at the end and my own records since when I say the past 5 days has been crazy I really mean it. You can read a bit of back story here.

17th October
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Varicocile Embolisation - a simple surgery to get rid of the varicose vein on my left testicle (yes it can be as painful as it sounds). 4-5 hours waiting for a 30 min op no worries. Feeling a bit grim but that’s kinda to be expected.

18th October
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Off work, feeling a bit rough, put it down to the operation the previous day.

19th October
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Went for a walk around the park and a quick visit to the pub, had a soft drink and start feeling really bad, make my excuses and head home where I spend the rest of the day on the sofa. When trying to stand up I felt like I was going to pass out.

20th October
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Needed to go shopping and could barely make it to the end of the road, managed it around Morrisons and headed home. I have a cheap sp02 monitor so tried that and my pulse was over 140 and sp02 89% (anything below 95% is bad). Decided to lay on the sofa and try and recover but about an hour later I’m still the same and feeling really faint. Took myself off to A & E and spent the next 4 hours (super impressed at how quick everything went) being triaged and taken care of. By this point I was struggling to breath and could barely talk. Another chest x-ray later and the doctor says the dark spots on my lungs are most likely blood clots. Perscribed Apixaban (a blood) and sent home, told I would receive a request for an emergency CT scan in the next 2-3 days. By this point I’m really sick.

21st October
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I have to go back to the hospital to pick up the rest of the Apixaban, on the way back home I get a call asking me to come back at 2pm for a CT scan. I wasn’t expecting it to be that quick but glad. Head back to the hospital and have my CT scan, it was a quick in and out once we found the right department. Head back home and try to start resting then I get another phone call to say I have to go back for overnight observation the dark spots on my lungs are blood clots and it’s quite serious, it really sucks but figure it’s for the best. When I get there I had multiple consultants tell me how serious things are and I’m given a bed and some anti clotting drugs. I’ll spare you the shit nights sleep but my gods it was horrible.

22nd October
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All my tests came back as slightly improved, it looks like the blood thinners are working. I still feel really crap but I can walk without losing my breath and the chances of a brain/heart clot are hopefully a lot lower now. I then got discharged pretty quickly which was nice and now I’m here writing this. I’m exhausted now and having to take things incredibly easy. My resting heart rate is between 87-100 because my right lung is causing problems with my heart. It’s going to take about 2 weeks for this to normalise. So when people say COVID isn’t serious point them in my direction. I also look like a pin cushion now.

Next steps
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I need a scan on my heart to make sure there’s no permanent damage. I’ve got a referral to a specialist but that will be another 3-6 months down the line.

Thanks
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Huge thanks to Han, Mum (stop worrying), Dad (yes I know you’ve had this, let me have my spotlight), James, Dave, Paula, Jim, Mark, Beth, Chris, Jess, Jane, Mark, Gem and Steve. Your messages/calls/support has got me through the past 3 days more than I can ever properly explain. If I’ve forgotten anyone else then I’m sorry I’m running on about 4 hours sleep.

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Long COVID Sucks

hello@mikebell.io (Mike Bell) — Fri, 04 Oct 2024 16:29:06 +0000

This week I had some pretty crappy news, I had a chest x-ray on Saturday because my lungs feel like I’m breathing razor blades. The nice doctor said that it was most likely down to post/long COVID. It’s kinda a good thing to know because that explains why I’ve been feeling so grim since I last had COVID. The x-ray shows I have scarring and dark spots on my lungs which is what’s causing all the discomfort. I’ve got a blue inhaler in case which helps a bit but for the most part it just sucks.

I’ve been feeling even worse than usual at the moment, my brain is so foggy, I’m even more tired ha tired doens’t even cover it I’m exhausted. I’m struggling to get out of bed in the morning which isn’t like me at all. I’ve found that when things are really bad loud noises are hurting my ears, that’s never happened before. To top it all off I’m having palpatations every so often.

There’s absolutely fuck all I can do about it either, I just have to put my life on hold while I expend all my energy working and trying to get through the day, it’s not really much of a life. My mental health is pretty crap at the moment because of it, but I have hope that I’ll come through it, may not be tomorrow or next week but it has to get better.

So yeah that about sums things up, fuck COVID tbh.

As a side note I’m only really writing this so I can play around more with neovim :)

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Spoons as a unit of energy

hello@mikebell.io (Mike Bell) — Tue, 16 Jul 2024 08:28:54 +0000

The aim of this post is to try and explain what it’s like living with ME/CFS. I can’t quite remember where the idea of spoons as a unit of energy came from, I think it might have been from my friend Gem, so I’m blaming/crediting them.

So why are spoons a great way to measure units of energy, human energy or I guess effort. Because spoons are a physical thing and that makes things better to visualise.

One spoon is equal to one human unit of energy, a unit of energy can be used for anything, work, shopping or even watching TV.

Living with ME/CFS only gives me a set amount of spoons compared to a normal person (if such a thing exists). So in my case I like to think I have about 10 spoons I can use a day, another person might have 20 spoons.

In a normal day I use about 6 spoons of energy for work leaving me with 4 left over for the rest of day. Some days I need a spoon for waking up and getting into a work mood. Shopping and cooking take another 2 spoons. Already I’m at 9 out of 10 spoons for the day and I’ve not really done anything out of the ordinary. Let’s say I want to go out and socialise that’s another 3 spoons which is a problem, I’m now at 12 our of 10 spoons borrowing 2 spoons from somewhere. Except there’s no concept of borrowing spoons going over that mythical 10 spoon limit is where the problems start. I’m now in an energy debt.

How do I recover that debt? On a good day it’s fine I can write the 2 spoon debt off and carry on. On a bad day I’ll pay for that and my default 10 daily spoon allowance is down to 8. This can lead into a spiral and ultimately a crash. A crash for me is where I become exhausted, I usually lay on the sofa for up to half a day just watching TV and trying to not fall asleep. Days like these I just want to cry. It’s so hard to do anything, my body aches and my brain is like sludge. I start stuttering as words become incredibly hard to form. People don’t see this though, only my wife and family. So it can’t be that bad right? It’s horrible.

My usage of spoons is incredibly important and the best way I can describe to people what it’s like to live with ME/CFS. I’m currently recovering from recovering from COVID. What do I mean by that? My body doesn’t work normally, all the energy I spent recovering has to come from somewhere and I now get to spend the next few weeks recovering my spoons back from that. It sucks.

Hopefully this helps give an idea of what it’s like to live with ME/CFS. Either way it was cathartic to write.

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Health on Mike Bell - Blog & Stuff

Things I Lost In The Fire

Confidence #

Worry #

Immortality #

Life #

Pain #

Future #

I know what tried to kill me

Four months on from my Pulmonary Embolism

Feeling a bit lost

Bilateral Pulmonary Embolisms Suck

How did we get here #

Anger #

Death #

Recovery #

Notes on 17th to 22nd of October

17th October #

18th October #

19th October #

20th October #

21st October #

22nd October #

Next steps #

Thanks #

Long COVID Sucks

Spoons as a unit of energy

Confidence
#

Worry
#

Immortality
#

Life
#

Pain
#

Future
#

How did we get here
#

Anger
#

Death
#

Recovery
#

17th October
#

18th October
#

19th October
#

20th October
#

21st October
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22nd October
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Next steps
#

Thanks
#