Soakings and Seizures: A Day in the Life

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

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

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

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

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

Inconveniently Ill

I feel a bit all over the place. There’s a lot of cool and exciting things going on for me at the minute, as well as in the long term, and that’s obviously great, but I’ve also found myself in this headspace where I can’t fully appreciate it. Maybe I’ve come into a new season of depression, maybe I’m burnt out again, or – I was considering this option earlier – maybe I’m feeling stressed about this busy month because I know how stressful such times have been in the past and I’m really only feeling it because I expected to feel it, in a placebo kind of way.

I don’t know.

What I can tell you is that I’m exhausted, and a bit nauseated; I have a clouded mind that can’t quite seem to settle, and the physical health issue from the start of the year that I mentioned previously still ongoing.

When I said in my new year’s resolutions that I wanted to deal with my health in 2018, I didn’t mean this.

But I’m not here to bitch and moan. What I want to highlight it what it’s like being in this weird state where I’m both happy and sad. For those who haven’t experienced mental health issues, it might sound a bit ridiculous. That’s because it is. But it’s also 100% a thing that can actually happen.

On the one hand, I had a brilliant few days with Women Aloud NI that I’ll probably remember for years to come. But, on the other hand, while I was having those great, positive experiences, I was really struggling.

When I get exhausted like this, my emotions go haywire. I find myself forcing myself not to cry at, well, nothing. There is no logical reason for me to be upset. That only makes how I feel all the more annoying.

I wrote a tweet along these lines a little while ago, but one of the things people don’t really talk about in terms of illness is just how damn inconvenient it is. It’s unpredictable, and can’t be planned around. That’s a headache in itself.

I care for my husband, which is fine when I’m on top of my game, but when I’m sick, everything falls apart just that little bit.

I don’t want to sit here and complain about my life. Really, I, don’t. I just want to sleep, for like a month, and then get on with it again. That’s where I’m at right now.


Follow Up Post: Weight and Waiting – Health Update (May 2018)

A Bumpy Start to 2018

I should, right now, be getting ready for the creative writing class I’m due to attend tonight, and the class I’m supposed to teach tomorrow. Instead, I’m in bed; in pain.

Now, I’m not going to go into too many details here (you don’t want them, believe me!) but I will say that I’ve seen a number of doctors in the last few days, I’m on a lot of medication (as pictured, right), and also on the waiting list for surgery.

So, the sad news is that the first week of my new class is cancelled. I am genuinely gutted about this and so sorry to anyone it inconveniences. All being well, I will be starting next week instead.

I have my fingers crossed and will share updates as soon as I have them.


Follow Up Posts

Dyspraxic Life

So, I was in the middle of writing some fan fiction towards my Camp NaNoWriMo goal, mug in hand, when I accidentally tipped the mug too much the wrong way and spilt a good portion of the contents over myself.

Ouch.

I know that’s not particularly noteworthy – especially when you’re me, a person who does such things several times a day. But what happened next was that I went online to complain about my clumsy self to Twitter, using the hashtag ‘Dyspraxic Life’ – I had to actually google the word Dyspraxic to remember how to spell it.

Having had the affliction for quite some time (or, I suppose, having had it for my entire life, and being aware that it had a name for a good few years), I’ve researched it before. I know the basic symptoms (particularly the clumsiness), so I wasn’t intending to actually find out about the disorder in my searching for it.

I did stumble upon a link, however. This here piece about Dyspraxia in Adults. I clicked it out of curiosity and, wow. I’m actually sat here stunned.

Never before have I seen such an extensive list of symptoms, and never before have I been summed up so accurately in a single document. It says at the bottom that “not even the most severe case will have all the above characteristics” but there are literally only one or two on the list that don’t personally apply.

I had no idea that my disorder affected me in so many ways. To those who know me, I really recommend reading the list. It’s a startling insight into my inner self.

Bright Spot in a Bad Week

I’ve been having a really bad week. And I know this year, in general, has been hellish for a lot of people.

Generally, I don’t have the best health. I don’t shy away from that fact. I’m in pain often and get sick a lot. But since I came back from my holiday? Wow, have I been bad!

This heavy cold has been going around – my partner got it before I did – but I have the added bonus of chronic sinusitis and asthma, which makes the whole thing worse. I’ve been struggling to breathe, and sleep, and lie down. Last night I coughed so much I threw up.

Okay, maybe I’m bordering on TMI territory here, but I’m getting around to my point, which is this: things have been sucky, but there’s also good things in the world. Generally and personally.

After a particularly hard night last night and having to cancel an event today, last minute, I woke up from a much-needed nap to see a new, unprompted, five-star review on the Facebook page for my business.

I also had an email telling me one of my poems has been accepted into an anthology. After submitting more pieces than ever before and not having a single poem or short story appear anywhere all year.

So, somewhat fittingly for this time of year, I am thankful.

May bright spots on cloudy days ever continue!

The Pokémon Go Get Healthy Plan

Pokemon GoMy health’s been a bit crap, recently. Also recently, I became a bit obsessed with Pokémon Go (yes, I know, who hasn’t?).

So, I’m planning to take a completely revolutionary step and try and go walking more, encouraged by the app, and in the hopes of improving my fitness.

If you don’t already know, I’m a writer and – more recently – a carer. I’m also quite introverted. These things mean that A. I don’t have to leave the house a lot and, B. I don’t actually like leaving the house even when I do get around to it.

I’m trying to change that. I’m challenging myself to leave the house every day – even if just for a walk around the block to the local gym.

I’ll keep you posted on that but, in the meantime, here are some of Pokémon Go stats so far (because you may not have got enough statistics in my last post…):

I’m Team Valor (the red one), Level Eleven, I have eleven bronze medals, two silver medals, and I’ve seen and caught forty-three different Pokémon.

Want to know anything else? Ask in the comment section below.