Tag Archives: life

An Overdue “Hip-date”

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Just writing this update quickly in case you’re wondering where I’ve been! 

Firstly, it has to be said that the corticosteroid injection in October proved to be life changing, and for a while, I got myself back. It felt amazing. I possibly overdid things in hindsight, but I was just so excited I couldn’t help it. All meals made from scratch. Forty-five minutes on exercise bike, coupled with another half hour of physio. Writing 1,500 words a day. Dogs walked every day. I slept every night for 6-8 hours. It was the happiest I’d been in nearly six years.

Then – wallop. On the first week of December, I felt tired, worn out, hopeless, useless. I prayed that it was just a bad day. It wasn’t. The pain was back, and I cried because I knew that soon I would lose everything I’d enjoyed in those six weeks. How was I going to tell my husband that old misery guts was back? Devastated isn’t a strong enough word. I was hoping to enjoy Christmas pain – free, but apparently that was too much to ask for.

Since then, I’ve kept up as much physio as I can manage, but it’s made no difference to the pain. i do it more to retain as much mobility as I can, but frankly, my mobility is now completely fucked. By the end of January, I couldn’t bear weight on my right leg at all, which has turned showering and toileting into dangerous sports. I can’t shower now unless there’s someone in the house. Where I could hobble the four metres from bed to shower using a rollator, I now have to drive the wheelchair right into the shower, transfer onto the shower seat (practicing doing so without twisting my hip, which is a challenge), and reverse the chair far enough to protect it from water but near enough that I can transfer back to the wheelchair when I’m finished. Showering is something I used to do without a second thought, now it’s a military operation that takes an hour in total.

I’ve started using a sock aid and a grabber, both of which I’ll need after the operation anyway. Sleeping has become a notion in the distant past. I use all the cushions, pillows and sleeping devices from Amazon, position them as best I can, heat up the auld hip before bedtime and take the prescribed painkillers I’ve resisted until now in the hope of conking out for a few hours. Unfortunately, this rarely works, and for the last month I’ve either slept in my orthopaedic chair or my wheelchair. As you can imagine, this doesn’t lend itself to restful sleep.

Two weeks ago, the pain became so severe that I went to A & E to make sure I hadn’t broken my hip. Of course I hadn’t. I have an intense phobia of hospitals that going to get checked out was not something I did lightly. The doctor who took the x-ray remarked “you do know your hip is very shallow, right?” I do indeed, but I’ve only known it for under a year.

I know I’ve become somewhat reclusive, and I’m sorry, but I’m sick of complaining and don’t like complaining to people all the time. However, I do have some good news. In January, sorting out this situation became my full time job, and I drafted a letter requesting an assessment from an Occupational Therapist for an electric wheelchair. My cousin and godchild (how old am I?!), who’s working as a doctor in Perth, put together a compelling letter outlining my reasons for needing an electric wheelchair from the HSE. I have my own, but it was originally intended for longer distances and – fun fact – it costs more to service a wheelchair than it does a car. Unless I win the Lotto, I can’t afford to fund this myself indefinitely. I was just about to send the draft to my orthopaedic surgeon to back up everything we’d written, when my phone rang. It was M, the OT I’d worked with when I was pregnant (and might I add, the most helpful of all the health professionals I’d worked with at the time). She was very apologetic, saying that I was overdue a wheelchair assessment by over four years! Stunned, I told her that I didn’t remember being put on the waiting list, and asked her who had made the recommendation?

A shuffle of papers down the phone.

“It was an urgent referral, made in 2021, by the Confidential Recipient herself.”

The Confidential Recipient at the time had been my beloved friend, Leigh Gath. I burst into tears. I really miss Leigh, and wish that I could talk to her about this, but to know that she is looking out for me means more than I can say. M came to my house that afternoon, and I explained that I could no longer walk and was awaiting a hip replacement. Suddenly, things became urgent, and a month and a half later, after using an electric wheelchair for over ten years, the HSE awarded me an electric wheelchair. Now, it’s not a top-end wheelchair, but I won’t have to pay to get it fixed anymore, relieving us from significant financial strain.

Why am I telling you all of this?

I don’t want sympathy, but I also feel like I owe people an explanation. Remember in my October blog, I mentioned that I’ll need a replacement? Well, it’s happening, and soon. I’ve received a date and everything. It will mark exactly a year since my diagnosis, and my forty-second birthday.

I wish I didn’t have to do this. The thought of it absolutely terrifies me. The closest thing to an operation I’ve ever had was my c-section when Alison was born. I’ve never been under anaesthesia. There’s a higher dislocation risk for people with CP. It mightn’t work.

 But on balance,  I can’t continue like this. Even with all the physio in the world, my mobility has gotten worse, and the pain is constant. All the cartilage is gone, and now I’m left with a constant bone on bone sensation. Some days, I can’t even stand up. I go to sleep at 1am and am back awake by 3am, though I can go back to sleep if I get up out of bed and tilt back in my wheelchair. Even with nighttime painkillers and a fortress of pillows, I can’t seem to get a solid night’s sleep, and haven’t done since 4th February.

I’d started pulling away from everyone again, but thankfully I have great friends who refuse to be pushed away. I haven’t added anything to my novel in months. The smallest tasks are sucking up my energy. It’s incredibly frustrating. The worst part is not the pain, but the accompanying brain fog. Thinking takes energy. I can’t retain information. I feel like I am no good to anyone right now.

And as I said, I’m frightened of this surgery. Extremely so. But what frightens me more is having this pain destroy another six years of my life. I want my life, and myself, back so badly. Here’s hoping that can happen sooner rather than later.

I want to back to work.

To go back writing.

Back to activism.

And back to me again.

Sunday Ramblings: Jumping Back In

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As I start writing this blog, it is 6pm on Sunday, 2 November, and it is dark outside. I hate this time of year. I honestly think I might have a touch of that SAD [Seasonal Affective Disorder], since I’ve been sluggish all weekend. Perhaps I’m just tired. It’s been two weeks since I got the pain injection into the shambles I call my hip. And while I’m not quite back walking full time yet, there have been some marked changes in my life. This afternoon, I took a painkiller for the first time in two weeks. Not because my hip was at me, but because I had a headache above my eyes, possibly from too much screentime. This afternoon, I cooked a delicious (if I say so myself!) steak dinner, complete with roasties and veg, and cleaned up afterwards. In fact, I’ve done a lot of cooking, with or without assistance, these last two weeks.

On Thursday, I went to a local disability meeting, with a group with whom I was heavily involved in prior to Covid. Everyone was shocked to see me. I think that they thought I was dead!

I’ve also managed at least half an hour on the exercise bike every day since last Sunday. I find that it’s taking me less time to cycle the same distance. And, if you’re reading this, this is the third blog I’ve written in the space of two weeks. I could get used to this level of productivity – it feels fantastic!

I need to hold onto this buzz I’m feeling, because I’m not able to go back in time. The truth is, whether I like it or not, I’ve lost so much time because of pain and exhaustion. When I finished the Disability Studies course in 2019, my plan was to do the “Train the Trainer” course, which (I think, but am open to correction on this) would enable me to give my own courses. Not only could I deliver Creative Writing Courses, but Disability Equality Training as well. Earn money, get a paycheck!

Or I’d like to do another oral history project, something like Conversations about Activism and Change. I typed out every word of those audio recordings, before editing them down. Damien Walshe and Des Kenny taught me useful lessons as I compiled and edited that collection, lessons that I’d love to apply elsewhere. Maybe I could do a collection of voices of up-and-coming activists? Without the heavy mantel of fatigue, my brain is swirling with ideas.

There are probably a number of reasons why I am reevaluating things at this moment. One is that I turned the big four-oh last year, and my original plan was to have my novel finished by then. Ironically, the first line of this, as yet, unfinished draft is “There are milestones one is meant to have reached by the time they turn forty.” This was me setting a deadline for myself, one that I’ve now missed. I would like to complete Rachel’s story, as I think many would relate to her internal (and external) struggles. She’s a hot mess, and often I want to strangle and hug her in equal measure!

Alison will turn fourteen in February. God willing, she will be going to college, an apprenticeship or a job when she’s finished the Leaving Cert, and as a stay-at-home mum, I suddenly find myself at a loose end. Where once I filled my days playing Lego, setting up Sylvanian houses or doing elaborate art projects, I now find all the time I once spent one-to-one with her spreading out in front of me like an overflowing lake. Don’t get me wrong – I’m still needed. For example, I was awake until one this morning applying tea-stains to her costume for the upcoming Addams Family Musical, as she is playing an ancestor. Apart from these moments, she’d much rather hang out with friends than her mum, which is a normal part of her push for independence. But I don’t really know what to do with myself.

I’m still available for proofreading work, but anecdotal evidence suggests that my opportunities in this area are fast diminishing in favour of AI. This is part of the reason why I didn’t feel motivated to complete that editing course that I started two years ago. If I think too deeply about it all, I start panicking. There’s nothing quite as sobering as scrolling through jobs.ie, and seeing that I am qualified for nothing relevant, nor have I the skills for local jobs. Waitressing, working on the shop floor, even factory work all seem beyond my realm of possibility. Of course, I apply anyway, because you never know. Dear reader, I don’t know if you’ve ever been to a job club. I have, and it was one of the most humiliating experiences of my life. I did this online career quiz and the top result was “Interpreter”. When the facilitator asked why I was laughing, I said “I can’t be an interpreter. I need one!” Awkwardness rippled around the room as my fellow jobseekers couldn’t decipher whether I was serious or messing.

So that’s where I am now, wondering what I should do next. All offers and suggestions welcome. In the meantime, I’ll be attacking my novel yet again while drinking the tears I’ve sobbed because of it.

Tuesday Thoughts: Weathering the Storm

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To my followers in Ireland and the UK, I hope that things have settled back to normality after the devastation of Storm Eowyn. Apparently, it was one of the worst storms that we’ve seen in our lifetime, and it’s predicted that these so-called “weather events” will become more prevalent in the future. As an island country, there’s only so much we can do. What are those who are living beside those idyllic sea views supposed to do, surround themselves in sandbags and hope for the best?

I must be honest: the only other storm I ever took seriously was Storm Ophelia in 2017. Others didn’t take it quite as seriously, alas; I remember looking outside to see a couple walking past the house, as if it were merely a brisk winter’s morning. Moments later, a leaning tree, firmly rooted in the patch of grass outside our front gate,  blew to the ground, the roots exposed, reminiscent of the uncovered spokes of a bicycle. All things considered, we fared well during that storm; no-one got hurt, our property (including the rabbit hutches outside) remained intact, and we never lost power. Surely if we could survive Ophelia, we could survive anything, right?

As the weather warnings intensified, I contacted my friend Orla who came the night before and helped us to heap everything into the shed. We charged up the portable chargers “just in case”, and I prepared food for the next day. Being honest, part of me thought the whole thing was a pointless exercise. When I went to bed that night, the wind was gathering pace, banging around the windows and walls. Still, I slept for an hour or two, but when I woke, the room was clothed in darkness. Even though I’m a forty-year-old woman, I feel no shame in admitting that I’m afraid of the dark. I reached for my phone and noticed that the battery icon was white, not green, which meant that it was no longer charging. Shit. We’ve lost power.

There was nothing I could do at five o’clock in the morning, so I waited until the sun rose to get out of bed. Everything I would normally do in the morning was now scuppered by this lack of electricity. I’ll just make a coffee…no, wait… I’ll hoover… oh, I can’t…. and so on. The dogs were whinging at me, clearly unimpressed that they weren’t getting their morning walk. However, I think the situation became clear whenever I opened the back door and the two of them nearly blew away on their quest for their morning constitutional! After that, they were happy to bunk down in their crate and wait for the chaos to pass. And it occurred to me that was all I could do, too.

Orla texted me, concerned at our lack of power. “Is there anything I can do?” she asked, and unfortunately at that stage, there wasn’t. But we were extremely lucky: at 2pm, without any fanfare, the power returned. We all hastily showered, stuck our phones onto chargers and prepped food in case we lost it again. Alas, I know that not everyone was as lucky, and we offered assistance to anyone we could think of who might have needed it. Four friends stayed with us until their power came back, and it was an honour to help. After all, it’s a horrible feeling to be stuck in the dark, feeling like there is no-one to turn to.

Very few of us, except the cold-hearted (and I don’t know anyone who falls into that category), would refuse help to anyone who needed it. The trouble is, we don’t always know, or can’t always tell, when someone needs help. And afterwards, we always feel terrible that someone has endured suffering alone, and we admonish them: “Why didn’t you tell me? You know I would’ve been there for you.” Of course, logically, we know this – but sometimes, when you are caught in the eye of your own personal storm, it’s difficult to explain the devastating impact of the damaging gusts raging around your mind. 

You can’t catch a breath. You can’t even think straight because your brain has automatically switched to survival mode. All you can do is grab onto something and hope you don’t fly away. You learn to become numb, because you can’t handle the guilt that goes hand-in-hand with feeling your emotions. For me, I don’t like letting people down. No feels like an impossible sentence to utter. So, rather than setting boundaries, I hide and pull away. 

And boy, did I hide. I left a beloved writer’s group (but rejoined today – hurrah!). I didn’t make contact with anyone, choosing instead to watch reruns on Netflix (up until last year, Only Fools and Horses was the only television programme I watched, or binged). Each day was a long struggle, from the time I woke to the time my head caressed the pillow again. And it didn’t have to be. I could have called someone, asked to be rescued from the storm. But I was ashamed. I was haggard and browbeaten, my confidence having flown away. Eventually, it dawned on me that sitting around waiting for the confidence to return was not going to make it happen.

I’m still in the baby steps phase, but I only made two New Year’s Resolution this year: one is to write as much as possible, even if I think it’s shit, and the other is to do everything in my control to ensure that, in low moods or dark days, I have some kind of emotional powerbank charged at all times, ready to use in emergency situations. Last year was tough. I lost four friends within a twelve-month period whom I think about every day, and the fact that human life is fragile has not escaped me. Of course, toxic positivity is just as dangerous as negativity, but I need to ringfence my emotional health, protect it from the storms of everyday life.

That said, in writing this I do not intend to trivialise the damage caused by Storm Eowyn two weeks ago. To those of you still waiting for power or water to return, facing repairs to your properties or cars, or have lost food due to lack of electricity, I’m thinking of you. The government needs to be prepared. We can – must — do better in the future. We must be more prepared for storms yet to come.

Thursday Thoughts: All in My Head

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(written 21 October 2024)

I’m sitting at my computer this morning, while my two dogs snore loudly on their bed beneath my black desk, the one I got last year in JYSK and assembled with the help of then eleven year old Alison. This is what every working day should look like for a writer: Microsoft Word open on the screen, the cursor blinking impatiently as it waits for you to input the masterpiece you are weaving in your head. It’s been almost ten years since I decided to throw any prospect of future employability away and instead pursue some vague ambition to become a writer. 

Most days, I enjoy it. Above everything else, as I have mentioned several times before, writing has often been the only thing keeping my fragile mental health from shattering into bits. If you, dear reader, have any perception of what this feels like, then you can also imagine how frightening it is when you feel yourself being pulled down that dark road of nothingness, and the thing that you normally rely on to pull you out – a string of words – refuses to materialise. Not only were the words not appearing, my will to sit in front of a screen while I bubbled with frustration was also fading quickly.

I’ve been wrestling with mental health issues for years, along with approximately twenty-five percent of the population. Over the last few months, I’ve recognised a pattern which sets the darkness in motion. First of all, I become tired, just like any ordinary person becomes tired. When I’m tired – and I’d wager I’m not alone in this – even the simplest things become overwhelming. There’s an extra load of laundry I hadn’t planned on tackling today. Alison’s bedroom may look clean, but if I open the wardrobe and drawers, I’ll have to deal with the crap in there. None of these things are life and death, as long as you’re in the right state of mind. 

As for writing a novel, well. You might as well say go and climb Everest, because neither seem possible when the black dog comes and licks your hand.

I know in part that the chronic pain I now live with contributed to this round of misery. It’s been four years, and yet I’m struggling to accept that what my mind wants to do and what my decripit body is able for is not in alignment. Lowering my standards isn’t in my lexicon, and that creates problems daily. Often, I go to bed frustrated because that load of laundry lies unfolded in the dryer, or because there’s toothpaste cementing on the side of the washbasin. I am a writer, but I’m also a stay-at-home mum and wife. If my husband can manage his job and bring in a wage, then why can’t I manage mine?

Then, of course, it occurred to me that the above narrative is not helping my mental state, and that the only way out is to be kind to myself. This is in direct opposition to everything I’ve trained myself to do over the years. Tough times? Push through it. Want results? Work harder. After a spell, the messages become nastier. What made you think you could write a book? What’s the point in applying for work, when your last full-time job was ten years ago? Imagine this on repeat all day, like a soundtrack on Spotify; sometimes the order shuffles a bit, but the core messages are invariably the same:  You are going nowhere. You have wasted your life.

Before the summer, while packing to go to Australia for a month, I just said enough. I had just turned forty. I’ve no novel, no marvellous collection of short stories, and not enough work coming in to justify my role as proofreader. But why do I rely on these titles to give me my sense of self-worth? I came in here into my office and took out Conversations about Activism and Change, which may be the closest to a published book I’ll ever achieve. And while it isn’t perfect, I now leave it on my desk as a reminder that I am capable of conceiving and completing a project. I can handle the monotony of transcripts and editing, and editing, and more editing. Now, I can be proud that the book has made a contribution to Irish disability history. A book that came from a throwaway comment to a friend about yearning to record the people’s history of the movement.

At the moment, it often feels as though I’m watching my own life from the outside, like a boring silent film, but I have started to chisel away at the glass and hopefully soon it will shatter completely. I’m impatient by nature, but now I’m coming to accept that I can’t just bounce back into the life that I drifted away from this time last year and expect to pick up from where I left off. That said, my friends have all been incredibly patient and understanding and have helped me in rejoining society, physically and mentally. I also know I need to be kind to myself. Losing so many friends in the space of a few months has hit hard, and I need to readjust to loving them in a different way to what I might like. But I am getting there, and it seems that writing might be the key.to unlocking my life, after all.