Tag: Health

2022 Take Two

Posted on by Ellie Rose McKee

I know most things never go completely to plan, what with life getting in the way at every turn, but my gosh has the first half of 2022 been the opposite of what I hoped for. Thinking on it as a whole, I’m left feeling disappointed for opportunities I reached for and didn’t get, and frustrated for projects I didn’t complete. Looking part that into the details, however, I can see there were good points, too.

In the first half of this year I:

  • Wrote 65,000 words––considerably less than I usually pen in six months, but still sixty-five thousand words!
  • Attempted Veganuary for the first time (and did better than I expected)
  • Got the third Belfast Writers’ Group Anthology out into the world (FINALLY!)
  • Published the first Perilla Magilla book for CL Scott
  • Became a moderator of Elysian Fields, an online fan fiction archive of almost 25,000 members

I also lost pretty much the entirety of my June to COVID––but I was fully vaccinated and I’m still here to tell my story, so I have that to be thankful for.

My Goodreads Goal is on track (11 books read off my total of 20 for the year), and I have been working on my art, as planned.

I’ve had art mentoring sessions via Zoom that were really helpful, completed a bunch of Skillshare classes that were also really good, and attended some in-person art classes that were… let’s just say not up to the standard of the Zoom and Skillshare lessons.

So a mixed bag! Maybe not even too bad, considering. You might be wondering why I’m feeling so down about the year so far, all considered, and to answer that, I point you at the three things still currently in the pipeline for 2022:

  • Life Lessons: Book Two in my YA Trilogy
  • Girl Imperilled: My Short Story Collection
  • An Art Zine

I had planned to have all three of these published by now, and if things had worked out, I’d currently be writing book three of my trilogy, but that’s been pushed to next year.

Which is frustrating, as I’ve said, but I’m also trying to be gentler with myself this year. One of my goals was to actually chill more, and I think I’m maybe a little better on that front. Either way, we’re now in July, having crossed over into the second half of the year, and I’m considering it a fresh start.

Let’s go onward from here!

A Little More on Comorbidities

Posted on by Ellie Rose McKee

In my most recent health update, I included a bullet-pointed list of most, if not all, of my issues and talked a little about ‘comorbidities,’ which is a big word that just means having multiple conditions going on simultaneously (at the same time) that can also be, in some ways, overlapped (in terms of causes and/or symptoms).

In my list, I grouped a few of the items together, but I didn’t really explain the overlaps. That’s what I want to do today, and what I have tried to represent in the diagram above.

Before I get into it: it should go without saying that I am not a doctor and this post is purely based on my own experience, and my own limited understanding of that experience. But, you know, I’m gonna say it anyway: I’m not a doctor. Do not use this post as a guide to diagnose yourself.

Probably the biggest thing to note is how Fibromyalgia is right at the centre of the diagram and, also, at the heart of many of my issues. This is mostly because it’s an umbrella condition that has many different things rolled up in it. (Yes, that’s a mixed metaphor, but I’m sure you know what I mean.)

The main symptoms I have from fibro are chronic pain, chronic fatigue, problems with my joints (which can, in turn, make me more exhausted and my body more painful more quickly), Irritable Bowel Syndrome (IBS), depression, and anxiety (and fibro fog! Can’t forget that!! Though I incidentally did, in my first draft of this post. Plus points for irony!). You can have each of these things on their own, or even a few of them, without having fibro, but when you have all of them, it’s a pretty big indication that there’s something bigger at play.

For me, fibromyalgia is a big deal and the diagnosis made a lot of puzzle pieces click into place. But there are things in my diagram (and on my original list) that are not fibro related. Asthma, for example, has no link to fibro. Except, in my case, it’s triggered by allergies and my allergic response often then triggers my sinusitis and/or IBS symptoms.

Polycystic Ovary Syndrome has no direct link to fibro (at least that I’m aware of), but they both cause me abdominal pain. My IBS also causes me abdominal pain; depression and anxiety often go hand-in-hand even in people without fibro; and I have a sleep disorder that has nothing to do with fibro, but it does double-down on the fatigue I get as part of my fibro. I’m not exactly sure my costochondritis (inflammation of the cartilage that joins the ribs and breastbone) is linked to my more general joint and muscle problems, but it seems fairly reasonable to me that it is.

Moving on from this, in the bottom right of my diagram, you will see a triangle of what I’ve labelled ‘specific learning disabilities.’ These are dyslexia (problems with words*), dyscalculia (problems with numbers*), and dyspraxia (problems with motor skills and judging distances*). All three of these are different and can occur on their own, but they can also often present themselves in the same person, and I am one of those lucky people to have hit the trifecta.

Bottom left of the diagram you will see I’ve listed my hearing problems, which I haven’t linked to anything. That’s because, as far as I understand, it’s a separate issue from all the rest. I don’t know what caused it and I’m still looking for a solution, but medical science is discovering new things all the time so who knows what I might find out in the future regarding it. Maybe it is somehow linked to my patchwork of other conditions and symptoms, or maybe it really is there all on its own.

I mostly wrote this post and made the diagram above for my own benefit, to help myself better understand how I do (and don’t) work, but what I want you to take away from all this is that it can all get pretty complicated.

It’s only in the past year or two that I’ve come to identify myself with the label ‘disabled,’ and it’s a big label with big implications. The diagram above might make it look fairly organised – simple, or logical, even – but the day-to-day reality is that I am really tired and sore pretty much all of the time.

Hopefully my explanation has been clear, but if you have any questions, please feel free to leave them in the comment section below.

*I just want to note that the explanations of dyslexia, dyscalculia, and dyspraxia I have given are super simplistic and in no way represent the full symptoms or definitions of those conditions.

Health and Fertility Update – June 2020

Posted on by Ellie Rose McKee

I don’t honestly know if anyone following my blog is interested in updates about my health, but I do know that I myself find them useful to look back on. At any rate, it’s been a year since I voiced my frustrations regarding trying to get pregnant and that was the last real health-related update I shared, so I figured this post was overdue.

In terms of mental health, I have been all over the place, but with everything that’s going on in the world right now, I suspect that’s the same for most people.

I talked before about trying to lose weight, but that’s ground to a halt, partly because of lockdown but also because my local Slimming World group disbanded prior to that and my motivation went out the window when my fertility consultant moved the goalposts on me.

I had been trying to get my BMI down so that I could access fertility treatment, and the entirely arbitrary number they had originally set for me to reach was a real struggle. Then, at my last appointment, I was told that the clinic had their funding cut and so they were moving my target BMI even more out of reach. Like, impossibly out of reach for someone with PCOS and my body type. While this was an obvious blow, I got some clarification over exactly what they had planned for me in the hypothetical situation I did reach the magical number and they told me IVF, which is not something I knew before then. Continue reading →

The Disconnect – Letter to My Body Part Three

Posted on by Ellie Rose McKee

There’s this thing John Green has spoken about quite a few times: how he used to conceptualize himself as a brain that had to be carried around by his body rather than the body being an intrinsic part of his being to begin with.

That’s how I used to think, And – in all honesty – it’s still how I feel, deep down.

But I can understand why John ultimately found the thinking unhelpful. For if the body was just a physical means to an end – to get him from A to B – its wellbeing didn’t matter so much. He didn’t have to really care about it, so long as his mind was fine.

Except doctors have known for a long time that physical health can and does affect mental health.

When John began to think about his body, and its needs, and embrace it and them as part of himself, he started to make changes than benefitted him as a whole. He began to exercise. He started to eat right, take better care of his teeth, and quit smoking.

For John, this has been a journey, and he’s not at the end of it, yet.

But, dear Body, I am trying – by the means of these letters if nothing else – to walk that same path.

Letter to My Body: Part Two

Posted on by Ellie Rose McKee

Dear Body,

I said in my first letter that I wanted to open a dialogue, and I do, but I guess it’s harder than I thought it would be because it’s been almost a year between that first letter and now. There’s so much we need to hash out, I’m still struggling to know where to start. But I’ve been thinking about it a lot – all our issues.

It’s a lot, you know?

I had planned, today, to bring up the complicated topic of food but, well, we’ve had one hell of a weekend, haven’t we? It’s only fair I give you a break and save that can of worms ’till later.

Right now, I know you’re in pain. To say it sucks doesn’t cover it.

I’m trying to figure out all that’s wrong, but it takes time. I feel frustrated, but I hope that all answers will come eventually, if I don’t stop looking for them.

I’m trying to come to terms with just how sick we are, and the possibility that I might always be in some amount of pain or other.

I’m scared.

I want someone to hold my hand through all this and keep me going. Obviously Steve is great for that, but he doesn’t have any more answers than I do. It’s hard to reach out for support from people who have gone through the same things, when you’re not sure what all of the things you’re going through are called.

I guess I should be grateful that I have diagnoses for at least some of it. Twenty years ago, I probably wouldn’t even have that. And Steve is so great. He listens, and sympathizes even when we don’t understand. It’s such a change of pace to how things used to be, living with my parents.

We can take solace in that. Things could be a hell of a lot worse.

I like to think we’re making progress. And, in the meantime, I really do plan to write more often. We shouldn’t be at odds with each other.

Take care, body. We’ll get there.

– Ellie.

Soakings and Seizures: A Day in the Life

Posted on by Ellie Rose McKee

Oh, what a morning. Afternoon. Would some people call half-five evening? Probably.

Whatever. As far as me and my sleep disorder are concerned, it’s morning.

I woke up an hour ago in the middle of a thunderstorm. My dog stretched and toddled over to me, then keeled over in one of his seizures. I lifted and cradled him to my chest until it passed, tried calling my husband in the bed next to me.

Unresponsive. He’d, evidently, had a seizure too.

I watched him for a minute, figuring it would be a while before I could reach him. The rain was still hammering down.

I went downstairs, puppy still in hand, and got him settled in his downstairs bed with some food. Next was the super fun part. I had to go out in all of the rain to fetch the wheely bin, praying I’d find it in the alley.

Our last bin was stolen. The one before that was blown up by some kids with fireworks.

It has not been an easy month.

I went out, got soaked, but did retrieve the bin. A small win, but important.

Hands washed and feet wiped, I went back to check on Steve. He was vaguely aware of my presence. The seizure had passed and now he’s into the extreme fatigue of recovery. Another good thing.

It’s still ridiculously warm, despite all the rain. The heat makes it all worse: my health, Steve’s, and the dog’s.

On my way back downstairs again, I can see the cat has destroyed more wallpaper. Great. She’s set about stripping a whole section, no matter how many deterrents we try or alternatives we offer.

Steve and I are supposed to be getting ready to go to Slimming World but it’s clearly not going to happen. Another week missed. Another fee incurred. But maybe it’s for the best. We’re in between payments again and can’t really afford it right now.

I need to go out for milk but am already feeling the day weigh me down. I’ve felt ill for a month– no, wait. Backtrack. Clarify: I’ve felt ill all my life. This past month, maybe two, I’ve felt worse than usual.

This would have been another day for not leaving the house at all, but I must get that milk.

The funny part is, this is me taking a break. I’ve been ‘taking it easy’ for the past few days. Which means still dealing with all this, and housework – dishes, laundry, cooking – but not really writing or editing. I haven’t had the brainpower.

When people ask me how I am, I say I’m “getting there.” I don’t know what else to say. I love my work, when I can get to it, I love my husband and my pets. Our home is the loving, accepting atmosphere I’ve always craved. On the whole, I do not have a bad life.

A lot of the time, though, this life is made of days like these. I’m getting through them. This isn’t me complaining, really, about any of it. I do want people to understand, however.

I don’t live a conventional life and I’m fine with that, but sometimes I do want to open up a window and show people what it’s like.

This is it.

May Health Update

Posted on by Ellie Rose McKee

I had a blog post about publishing planned for today, but I’m feeling pretty rubbish and wanted to talk about that instead.

I’m on new pills from the doctor, and on new, special multivitamins, taking industrial-strength folic acid; I’ve cut out pretty much all of my caffeine intake, and I’ve cut way back on dairy. Which means I’ve actually stopped taking tea and cereal for the most part, because the coconut milk alternative I’ve been using has kinda put me off it, and the decaf tea bags we have aren’t great.

At this point, I don’t know if my diet is better off or worse, and I’m not sure which of these things is making me feel ill – maybe a combination of all of them, or maybe it’s psychosomatic because I’m trying so hard to get pregnant and feel like I’m getting nowhere – but I’m just so tired and tearful.

On top of that, I feel guilty for being a moany bint.

So things aren’t great. There’s not much of a point to this post other than to get that off my chest, but I feel it’s important to talk about life’s struggles.

Is anyone else having a rough time of it? Does anyone want to send me cute kitten photos? Let me know!

On Accessing (and not accessing) Healthcare

Posted on by Ellie Rose McKee

I’m gonna start this post, right off the bat, by saying I am in full support of the UK’s National Health Service and all they do. It’s a crime (or at least it bloody well should be) the way it’s been systematically underfunded for years, leaving waiting lists ridiculously high and people, quite frankly, fucked.

Today’s post is a personal one, because today, I am one of the people being fucked over.

I need to rant and vent, but I don’t want anyone to get the wrong idea. The problem isn’t truly the NHS, it’s those bastards in parliament trying (and in many cases succeeding) to gut it.

Disclaimer made, let me now rewind to explain why I’m upset.

I’m just off the phone with Occupational Therapy, who have told me – in essence – that they can’t help me. I had gone to my GP about a long-standing issue I had, seeking her advice for the best way to go about getting officially diagnosed and accessing help.

She told me I needed to self-refer to O.T.

Now that I’ve tried that and gotten nowhere, I am – precisely – nowhere with zero clue of what to do next. Continue reading →

Sutures, Stockings, & Silver Awards: Health Update, June 2018

Posted on by Ellie Rose McKee

Not long after I posted my first health update last month, I got a call offering me a surgery date. So, yesterday I had “investigation under anaesthetic.” (The urology appointment was a dead end, it turned out.)

I’m tired and a little sore but mostly okay. The worst part of the day was the waiting. I hadn’t slept the previous night, as I generally don’t sleep at night and was told to come in early (around the time I would usually be going to bed). In the end, though, they kept me for restless hours at the back of the queue to have my procedure last.

The bed wasn’t comfortable and the days are getting unbearably warm again, but I shouldn’t really complain because the NHS is a godsend and I’m incredibly glad to have it.

Steve has been great keeping an eye on me even though he too is exhausted and melting in the hot weather.

I have some super sexy support stockings that are supposed to prevent DVT (which I’m apparently at risk of). They need to stay on for 7 to 9 days, which is how long I’m supposed to be on bedrest.

Prior to going into hospital, I was continuing on with Slimming World and had just hit my silver ‘Body Magic’ award for exercising. So I’m just taking a brief break before starting work towards my gold achievement.

By the end of my 7-9 days, my stitches should be dissolved. What happens next is that I’ll be sent for an MRI to get an even better picture of what’s going on with me, and then I progress from investigative surgery to corrective surgery, which could involve two or three separate procedures.

Needless to say, I still have quite the road to still in front of me, but I’m thankful it’s fairly mapped out and I know what to expect. The previous uncertainty had been driving me mad.

Weight and Waiting – Health Update

Posted on by Ellie Rose McKee

When I set my resolutions for this year in December last year, I said I wanted to eat “a bit more healthily. I’m not intending to go on a diet, exactly, but I do want to take better care of my body.”

Well, there was a reason for that.

In November last year, I discovered that a lump I’d had for years was suddenly bigger. I went the GP and she told me I had a cyst. No problem, she’d put me on a waiting list to get it drained and/or removed.

So I went into 2018 knowing that I was facing minor surgery. I’d also had a conversation with my husband just after his birthday in the middle of December in which we decided it was the right time to pursue fertility treatment.

I have PCOS and, as such, don’t seem to be able to conceive naturally. Again, I went to my doctor about this and again I ended up on a waiting list.

Between waiting for surgery and wanting to be pregnant, I aimed to be fitter. That seemed fairly straightforward.

Then I got one or two weeks into January and my cyst was massive and incredibly painful. I went back to the GP and got antibiotics. When they didn’t work and the cyst continued to grow and generally be unbearable, I went to A&E.

The doctor at the hospital gave the cyst a poke and a prod (which, I’m not gonna lie, had me in tears). He then told me I had a different kind of cyst to what my GP diagnosed. I was sent away with more antibiotics and told to come back on Monday.

Over the weekend, the cyst burst which sounds awful but was actually a big relief. The pressure on it was like nothing I’d experienced before.

Back at hospital, I saw a different doctor who told me I’d been misdiagnosed again and my cyst was neither the type my GP said it was nor what the other hospital doctor thought, so the referral I was waiting on was with the wrong department – apparently it was a General Surgery issue, not Gynaecology. I was given more antibiotics and sent away again.

Two weeks later, I was back at my GP because the cyst was infected again. Solution: more antibiotics. A double dose.

The cyst got worse and I went back to A&E again; going over the whole story. The triage people got someone from General Surgery to come look at me and she said she was “almost certain” it wasn’t a GS issue and should definitely be with gynae.

I was sent away with – get this – more antibiotics. It was February by this point. I’d been in pain for a month and still had heard nothing about my referral. I didn’t even know if it was with the right department anymore. The surgeon said she would talk to gynae and call me the next day to settle the issue.

She never called.

February became March and March became April, my cyst waxing and waning the entire time.

Finally, I got an appointment with General Surgery. The doctor there told me:  Continue reading →