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.)

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All of the Thoughts

I feel seventeen again, and not in a good way.

I’m feeling like I was last September, when the poems were running out of me like blood and my mind was lost in space.

…and it’s all in my head, I think about it over and over again

I can’t stop thinking in song lyrics. Can’t stop thinking.

There’s so much more I want to say about Chester, but I don’t know where to start.

I may not get over this. I mean, Linkin Park have been with me 15+ years. Over half my life.

I may not still be living without them. How do I start to get my head around that?

wake me up, when September ends

Chester

I am devastated. That’s not hyperbole. Not an exaggeration. The death of Chester Bennington has rocked me. I’ve spent the last couple of hours crying.

Every so often a celebrity dies and there is public outcry. Often, a small portion of the population consider such reactions to be ridiculous, as if celebrities don’t count as real people, or as if someone can’t be crushed when someone they’ve never met passes on. Thankfully, most people aren’t as stupid as all that and know that music is one of the most powerful things on the planet and that, through it, singers and songwriters can touch you, and change your life.

Linkin Park changed my life. Again, I don’t care if you just read that as dramatic or whatever. Truly, the music they made saved my life and made it bearable. They have been my favourite band since I first heard them, in my early teens. Along with Buffy, they helped me through such intense highs and lows that are beyond words.

It cost me an absolute fortune, but I got to see the band live when they headlined Download a few years ago. I went on my own, and I sang my heart out, and I didn’t give a shit how it looked. I will treasure that experience for the rest of my life (even if I am kicking myself that I didn’t take any pictures).

I’ve spoken on here in the past about my checkered history with mental health. Many of you reading this will, I’m sure, understand what I’m feeling right now. Part of me is angry that a life is gone, but I know exactly what it’s like to just… not be able to continue.

For those of you with me, let me share some words that have come to mean the world to me:

Weep not for roads untraveled, weep not for sights unseen. May your love never end, and if you need a friend, there’s a seat here alongside me.

The Evolution and Extinction of Ellie Rose Writing Services

As I’m sure many of you reading this blog will know, I used to offer a range of writing-related services as a business. That business started in 2013 and, as of last month, has now ended.

It took me a long time to see it, but I was overstretching myself, and my mental health was paying the price.

Going forward, I’m feeling confident that I have a clear idea of where I’m headed and how to get there.

I’m still self-employed and that still consists of client work, but it is exclusively for writers and writing based organisations, now. The work is going to be carried out under the simple business banner of ‘Ellie Rose McKee, Author’ because, this time around, I’m not going to lose focus of the main strand of my career, which is writing for myself.

My main client at the minute is the John O’Connor Writing School, and I’ve just accepted the post of Project Support Officer with Women Aloud NI.

So, even though Ellie Rose Writing Services is no more, this is not a sad blog post for me to write. I was updating my CV just before writing this, looking over the testimonials I have received, and I’m damn proud of myself and everything I’ve achieved.

Onward and upward, as they say!

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.

On Pride

June is pride month – a month-long celebration of everything LGBT – and today is exactly one year from when I came out.

I thought I would reflect on that but, here’s the thing… I’m not sure I’m properly “out” – if there even is such a state of being. (I’ve heard other LGBTQA+ people talk about how you don’t come out just once, but lots of times, as you meet and interact with new people.)

My “coming out” was in the form of the blog post I linked above. It’s a disjointed, rambly thing that I hope got my point across, but I’m not 100% convinced that it did.

At the time, I was incredibly nervous to post it. It felt monumental for me, and it was (purely for the fact of how I felt about it), but looking back at it now, I’m not sure it was clear enough. The detail I go into about my religious upbringing accounts for that.

Putting the “I’m pansexual” declaration up on my blog was, as well as being terrifying, a very liberating experience for myself. Perhaps only for myself, though. Outside of people who have read it, I’m not sure anyone knows about my sexual orientation. I’m fairly certain my family don’t, hence me wondering if I am indeed truly out.

Part of me feels like it doesn’t matter if people know or not – in a sense, it does, while in other ways it doesn’t matter at all. Like, why should who I find attractive matter to anyone? Especially since I’m in a secure, monogamous relationship. Relatively speaking, it’s a small part of who I am.

Yet I know the importance of representation. I’m sure there are young (and old!) gay and lesbian people out there who haven’t been able to tell people about their identity, who find heart in stories of other’s bravery. And I think it’s important to stand up and be counted as a member of the community. It’s important for the people who run the country to be aware of how vast the community is so they’re better able to represent it.

Regardless of who knows and who doesn’t and whether that matters or not, I can only speak of my own personal experience and feelings on the matter. One thing I can say objectively is that, no less than two years ago, the idea of attending a pride parade filled me with a sense of dread, whereas now I actually know what it means to have pride in that aspect of myself. For me, love won.

Writing Through the Night

It’s 6.27am. I haven’t slept yet and, at this point, it’s unlikely that I will sleep before I head out to my last creative writing class for the [academic] year. I’m considering walking into the city centre instead of taking a bus. It’s the kind of mood I’m in.

One of the reasons I’m still up, aside from being an insomniac/nocturnal and having a criminally early class, is that I was writing a short story that’s been playing on my mind/heart for a while. It’s inspired by a conversation that happened in my aforementioned writing class. And it’s a story that, I think, could be developed further. It’s one that I’m tempted to turn into a short stage play. One that I’m considering having sequels to. I don’t know yet, and that’s okay. It’s not the point of the blog post.

I just wanted to say that, in times like these when I don’t have the time or energy to write much, writing is still what I come back to. It’s still what I love.

Perhaps it’s cliche, but I feel like there are so many stories in me. I want to write them all. And not even in the way of overworking myself that I’ve previously written about. I just mean that I am certain that telling stories – whether by poems, or plays, or novels – is what I want to devote my life to, ultimately. (Well, that and love, but that’s a different blog post.)

It is one of my sincerest goals to be considered prolific – to get as much down on paper in my lifetime as humanly possible. I don’t know if I’ve said that before or not, but it’s 6.38am and that’s what I’m thinking about.

On Not Being Able to Function

In the spirit of mental health awareness week, I wanted to write a post about how my brain has [not] been working lately, in the hopes of starting a discussion and minimising the stigma attached to such topics.

I had been planning to write a reading and writing update, first, though. I’ve been planning that post since January, but I especially wanted to push forward with it now since A. it’s been FOUR(!) months in coming and B. I wanted a break from the heavy topics I’ve been discussing on this blog recently.

The thing is, I am so stressed out I haven’t been able to push ahead and just finish it. I know logically that it’s such a simple thing, but it’s like I’ve got a mental block when it comes to even thinking about work.

As you’ll probably be able to tell from the posts I shared at the end of last year/start of this year, my mind has been all over the place. I’ve been trying to rest and breathe and work through that but, honestly, the issues are still not fully resolved.

I don’t know where burnout from client work ends and burnout from being a carer begins, they are inextricably linked at this point, but I do know I simply can’t keep the client work up. I feel awful about having agreed to take on projects that I now don’t have the time or headspace to complete, but I think I’m going to have to face facts and tell my clients where I’m at. I’ve been avoiding it. Been avoiding so much, and it’s only been making me feel worse. I just feel panicked, like I need to escape from everything RIGHT NOW or else.

Today I unpublished my business Facebook page and I’ve redirected my business website over here to this author site. I’m doing everything I can to just get by with my sanity intact.

To those of you reading this who think I’m being overdramatic, maybe I am. I often doubt myself when it comes to these things. But even if I’m not drowning, it certainly feels like it.

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