Eras and Spoons: A Life Update

As the saying goes, you only have so many hours in the day; and for each of those hours, each of us only has so much energy. There’s a wonderful metaphor used by people with chronic illnesses that equates the limited energy they have in the day to a lack of spoons. It sounds a bit wacky at first, but it makes a lot of sense when you get into it and really resonates with people for a reason. (Read the full explanation here.)

It’s easier to think of things like energy in terms of something physical you can see and count and comprehend. The article linked above theorizes that healthy people don’t have to think about their spoons or try and conserve them because they have an infinite amount. I’m not so sure on that count, but the rest certainly stands true in my experience.

I imagine a regular person (that is, someone without a chronic condition) to have one-hundred spoons per day – one-hundred being a round number for simplicity. It’s more spoons than most days require, with some left over at the end to waste on frivolity or throw away without needing to worry about them.

Relating this to my personal life: my husband – who I care for and who has a few chronic conditions that prevent him from working – has fifteen spoons on an average day; twenty on rare, extremely good day; ten on a bad day, and five on his very worst days. On the five-spoon days, all he can do is sleep, just about managing to eat the food I put in front of him at periodic intervals.

My own chronic condition is less severe and I usually end up with about forty to fifty spoons – much less than your average guy on the street but considerably more than my husband.

Bearing all that in mind, sometimes I wonder if I’m crazy for wanting a child. I’ve sat worrying, some nights, that people who know of our situation will judge us as being reckless or whatever to try for a family when we both have poor health. Sometimes I feel the need to justify our decision, but I won’t.

I am considering my spoons as I plan for the future, though.

All being well, I’ll (with a little help) get pregnant next year. If that works out, we’ll need to move house to somewhere with an extra bedroom and a hallway in which to park a buggy.

Before that, I’d really like to learn how to drive as I think it would make our lives easier. In the super longterm, I want to finally get my degree so, before all of the other stuff I’ve just listed, I’m planning to go back to college and get another A.level in preparation. That’ll take a year, starting in September.

Considering I’m turning thirty in spring 2019, I have a lot on my plate.

How am I managing my spoons in order to clear that plate? Well, I’ve had to let some things go to make room. (Have I killed this metaphor to death yet?)

After a year in the role, I am no longer Project Support Officer for Women Aloud NI. I’ve also decided to stop teaching social media skills on a freelance basis.

I’d already cut back on client work and stopped operating under a separate business name, bringing everything back under the umbrella of ‘Ellie Rose McKee: Freelance Writer’, but I really feel it’s time now to stop it entirely. It never really worked out the way I wanted and mostly ended up costing me a lot of spoons without earning me very much money.

So it’s the end of a few eras. I’m gonna do the student thing, and hopefully the momma thing. And, in the meantime, I’m gonna continue to care for my husband and write me some more books.

Honestly? It’s all I’ve ever wanted.

As always, this blog will continue to document the highs and lows of how the reality will (or won’t) match up with the dream. Keep ya posted!

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:

  1. what I had might not be a cyst
  2. it was definitely not a gynae issue
  3. antibiotics would do me no good.

Well, that was spiffy.

The plan was that I’d get called for investigative surgery, then corrective surgery, then a different kind of corrective surgery if the first didn’t solve the problem. Apparently it could take a year, in all.

The surgeon recommended I lose weight in the meantime as it would reduce my risk of complications.

I just got home from this appointment when I got a call from the fertility clinic. There had been a cancellation.

I took the appointment and travelled back to the hospital the next day for a series of tests after which I was told to come back in six months, five stone lighter. If I didn’t lose the weight, they wouldn’t be able to treat me.

The first of May, I rejoined Slimming World (having done it once before and previously lost four stone which I’d managed to put all back on).

I’ve been plugging away at that for a full month and have lost eight pounds so far in total. Also in that time I’ve had a preoperative assessment and received another referral letter, this time for urology.

I asked my GP why urology want to see me and she didn’t know. It’s apparently not in my notes. Hospital referrals are stored on a different system.

So June is starting with me going to see what that’s about. And continuing to wait for a surgery date. And waiting. And waiting…

Hopefully all of the cyst stuff gets resolved in under a year, because nothing can really be done about the fertility side of things until it is and treatment for that can apparently take a year itself.

Truly, I am learning what it means to be patient.

February Update

For me, January felt like a too-long month but, despite the fact that it seemed to stretch and stretch, I never quite managed to fit in everything I had planned. I only finished reading one book (a novel-length piece of fan fiction) though I did listen to most of an audiobook, too. I finished it (Star Wartz by Patrick Tilley) in the early hours of this morning. So, here I am on the first of Feb. with two books off my 52 book goal for the year and five-thousand words written of my ten-thousand-word January goal.

I think it was getting sick right at the start of the year that threw me off. For about a week, all I could focus on was the physical pain I was in and whether I was going to be taken into hospital. The jury’s still out on that one. I may be sent back there tomorrow after I see my GP again, or I might have to wait a year – who knows?

On the plus side, after having to cancel the first week of my class, I started it a week late and it is going well. My task for tomorrow is to put in a proposal for next term. Now that my taxes are (finally!) in, I can really focus on it.

Maybe I can even get back to writing fiction after that. I certainly hope so!

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.

Reviewing 2017 & Making 2018 Resolutions

There is so much I could say in this post, about lots of good and bad and trying things that have happened this year, but I’ve already spoken about many of those things in lots of different other places, both as they happened and after the fact – yes, I’m a serial reflector, I confess! – and I’m going to cover what I wrote and what I had published in a separate blog post in the new year, so let’s talk resolutions. I started 2017 with six of them:

  • Get married
  • Read 50 books
  • Join the Society of Authors
  • Get a literary agent
  • and a cat
  • Take an official proofreading course

Getting Married – I did that. It was awesome! Probably enough said 🙂

In terms of books – my Goodreads goal for 2017 was 50 and (as of an hour ago, when I finished a collection of stories by Dr Suess) my total is 57. Of that, there was the usual mix of genres and formats. Audible tells me I listened to 12,760 minutes of audiobooks this year, and my most active day for listening were Sundays, apparently. My reading goal for 2018 is 52.

I didn’t join the Society of Authors or get a literary agent, so those goals have moved to 2018. But I did get a cat and (as a complete surprise to me as well as you), I ended up getting a dog as well! Giles (pictured above; bottom right) has been with us less than a week and having the time of his little life.

The proofreading course I mentioned is something I keep changing my mind about. Part of me wants to do it, but then there are other things that would be of more use to me that I want to do more, so it’s nothing I’ve followed up on thus far. It would be nice to have, but if I never complete it I won’t exactly feel sad.

Things of a higher priority on my ‘to do’ list currently are getting my driver’s license and eating 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.

Those are pretty much my plans for the new year. I guess we’ll see how it goes!

A Long, Long Year

I want to write an update on life and writing and everything quite literally in between, but I’m having trouble knowing where to start…

Flicking through past blog posts, I can see that NaNoWriMo last year didn’t quite go to plan for me. After that, in December 2016, I tried to take a break. That didn’t quite work out either. I’d been so heavily involved in client work, I’d built up a ton of momentum and found the sudden stop incredibly jarring.

Next, the come-down happened. Burn out from doing too much for too long hit me once I finally stopped and took a breath. I think I allowed myself three whole breaths before New Year hit and I was right back to expecting the world from myself.

I wanted to hit 2017 running but found that I couldn’t go straight back into top gear having stopped the engine for a bit. So I beat myself up for a while, wrote a couple of stirring blog posts about how I was determined to do better. And then I got married, which of course was wonderful but also a bit of a whirlwind that left my head spinning. Months of building up to a single event can kind of have that effect.

Home from honeymoon, I told myself ‘this is it, time to be serious now, get back to work for real.’ So I threw myself into the Women Aloud NI events in March. I had a birthday, and then a little bit of a breakdown in which I admitted to the world just how sick my new husband was/is and how burnt out I was still feeling.

I carried on caring for him, and battling the government on his behalf, and trying to keep up the level of client work I’d been doing before, and trying to write and everything else. And the writing was pushed to the side because I didn’t have the time or the energy, and I felt worse and worse about that. (Writing keeps me sane, I swear. When I can’t do it, I really come apart at the seams.)

During that time – May until like September – client work became increasingly stressful and time-consuming to the point where I snapped and couldn’t do it anymore. I had pushed aside practically all of my clients to work on one main contract and it became too much, so I quit, leaving myself with no income from my business.

I actually stopped operating as a business somewhere along the line, knowing that I needed to focus on my craft as an artist.

The lead singer of my favourite band died during this time, too. A big part of the band that had got me through my teenage years without killing myself killed himself. It hit me like a ton of bricks. I could barely think, much less write.

Then a big relief came when my husband won his welfare appeals, and we finally were able to get the pet we’ve always wanted.

And then I got swept up in launching Belfast Writers’ Group’s two new short story anthologies.

And now I’m here, about to start NaNoWriMo 2017. I had hoped that I would be going into this year’s writing challenge with the backing of the Arts Council, but I have just gotten word that they have turned down my application for funding.

So, I’m going to redraft my novel anyway; not doing much client work or taking a wage besides. I am going to write and relax and try not to traverse any further into burn out territory.

Not gonna lie, I’m exhausted before I even begin this next leg of my journey. Please, please wish me luck.

Herron Family Update

This year still shows no sign of calming down for my husband and I, but things are looking a lot brighter. After I put up my most recent post about Steve’s health and ongoing issues with the welfare system, in which I imparted the news we’d been told about having to wait a year for a new DLA tribunal, our objection to the first tribunal was allowed and we got a new one without having to wait after all.

So, we had a new DLA tribunal and a new ESA tribunal within a few weeks, and thankfully, thankfully (I cannot impress that word strongly enough!), we won them both. Steve also had some follow-up tests with neurology, and things are actually moving forward! Relief upon relief!!

Steve and I have been wanting to bring a new addition into our family for good, long time. And, now that things are sorted, I can happily impart even more good news: we have adopted a cat!

Sox Herron* is settling in well, and we love her.

For now and (I bloody well hope) the next wee while, things are well  🙂


*For those confused about the Herron surname: it is my married name. I write under McKee as it is my maiden name.

Second Update on ‘The Situation’

I took this photo at Belfast City Hall the day we set our wedding date. Little did I know how fitting it would become.

At the end of April, I published a blog post here about the nightmare my husband (and, by extension, myself) was facing. At the start of May, I wrote an update. Well, it’s August now, and we’re still facing the Same. Damn. Thing. It’s exhausting just thinking about it, but let me give you a recap:

When I met Steve, two and half years ago, he was already ill. He was diagnosed with diabetes maybe four years ago. Six months after that, he collapsed, was in a coma for a bit, and woke up to find he had the bonus condition of seizures. Fatigue came along for the ride, happy in its task of exacerbating his existing mental health issues (anxiety and depression) – I speak of all this with levity, holding fast to the old adage, “If you didn’t laugh, you’d cry.”

About three years ago, Steve moved back home with his parents and got a new job. He collapsed again, while at work, and had to be removed in an ambulance. There was just no way he could go back, so he did the obvious thing of applying for welfare. (I hate the word ‘benefits’ and the connotations it conjures up, but that’s a different rant for a different day.)

Continue reading

Update on ‘The Situation’

To everyone who has shared and commented on my previous blog post, I want to give you many, many thanks. Steve and I really appreciate the love and support we’ve had from everyone.

I thought I should probably give a bit of an update on how things are now. I know not that much time has passed, but there have been a few developments.

Some of you asked if we have a representative to help us through everything and yes, we do. Although our appeal against Steve’s DLA decision was unsuccessful, our representative has told us that we still can challenge the decision at a higher level, so we have formally requested more details on that.

Regarding our claim for ESA, we now have a tribunal date and are in the process of preparing for that, having met with Steve’s GP today.

The past week has maybe been one of the hardest yet, as Steve’s health has suffered more due to stress and I’ve also started feeling burnt out again. We’re just trying to get through one day at a time and all of the kind messages we’ve had has really helped. I cannot emphasise that enough.

To answer another question we’ve received a lot, I don’t think there is anything else anyone can do to help us at this stage (other than the aforementioned well wishes). I have been toying with the idea of starting a petition to submit to the ombudsman, urging him to reconsider the DLA decision, but have been advised to hold off on that just yet. If it becomes necessary, I will share the link around and would appreciate it if people would pass it on.

A couple of local politicians have shared our plight and someone has been in contact to ask if the media can run a story. Time will tell what, if anything, will come of that. Steve is reluctant to draw attention to all this, almost, but it is important. We just hope it won’t be held against us somehow.

On a different note, I feel the need almost to proactively defend myself. I know welfare is such a contested issue and it engenders a lot of strong opinions. I would like to urge people to question things before they judge.

Maybe you’ve seen me post a status about attending the theatre in the past week, and maybe you think to yourself that it’s terrible we are pleading poverty while spending money on seemingly frivolous things. If that is what you think then to you I say that things are not as simple as all that.

As hard as things have been, it’s a fight to find positive things in our lives to focus on and keep us going. It’s vitally important now more than ever to make the most out of the good days.

We may have little money and an uncertain future but, to paraphrase something Churchill once said, if we stop investing in the good things in life, then what are we even fighting for?

I Miss My Husband

Just a couple of months after I met my partner, I went away for a week to do some voluntary work. 

During that week, I joked about being “halfless”, which is to say, missing my other half. The thing is, it wasn’t a joke. We both knew pretty much right away where our relationship was headed. We were just at the right stage in our lives and those lives slotted together naturally very well. 

Steve has changed my life and, in a lot of ways, I couldn’t be happier. In one way, though, we really struggle. 

For those who know us personally, you’ll know that Steve is sick and unable to work. I don’t think most people really understand just how sick that is, however. He spends most of his day asleep, exhausted from seizures, fluctuating blood levels, and mental health issues. The hours he is awake, he has no energy, no motivation, and now, very limited government help. 

Since moving in together, I have become Steve’s carer, making sure he eats and takes his numerous medications besides a ton of other seemingly insignificant things that add up to constitute a full-time job. 

To do this, I have cut back on my client work and am now only doing a couple of hours a week towards being self-employed. I do this gladly because I love Steve and I don’t resent a moment of it. I’ve had to get better at recognising when I’m becoming burnt out and finding a way around it. 

But back to the government help thing. Last week Steve had a tribunal in which he appealed a DLA decision that said he didn’t need care. We went together and explained in person to a room of six people his needs. 

And they upheld the decision. They consider him not in need of care or the financial help to provide it. 

It took a year for us to reach that point and to say we’re devastated is an understatement. 

Three days before our wedding, we heard that Steve was losing his ESA (a different kind of benefit that we use for all kinds of crazy things like food and electricity). So we then began a second round of the appeals process. 

It took them over a month to decide to pay us while that process is ongoing, meaning we had to use money we received as wedding gifts to allow us to live. 

The stress has been unbelievable, and it’s not over as we wait for the ESA tribunal date to be decided. Part of me doesn’t want it to come, because we have no backup plan for if it fails. There is no possible way we could have a backup plan, as the (reduced!) amount they are currently giving us doesn’t allow any spare money that could go into savings. 

Meanwhile, my awesome, lovely husband is forced by stress into ever increasingly bad health and I miss him. I love him to bits, and we spend a great deal of the day side by side, with me awake and him out of it. 

As things are, he isn’t able to focus on getting better. 

Not wanting to end on quite such a bleak note, I want to instil within you the importance of voting out the cruel, uncaring government who has put Steve and so many other thousands of people in this position. 

Further details here