Tag Archives: health

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.

Eight Things I’ve Learned About Chronic Pain

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Religious followers of this blog will know that I’ve experienced chronic pain in my sciatic area for the last five years. I noticed it after a particularly nasty fall in the back garden in 2020 but only became concerned when, six months after the fall, the pain hadn’t subsided. Since then, it’s been a rollercoaster of medical appointments, of being told it was sciatica, muscle spasms, periformis syndrome and many other things. And, of course, one medic had the gall to suggest I was imagining it, that it couldn’t possibly be as bad as I was saying (apparently, I like lying in bed every night, doing stretches at half three in the morning for the craic.)

My birthday was in April, and to celebrate I was gifted an unexpected diagnosis. After years of plaguing her, my doctor, who believed me from day one, ordered a hip x-ray. Now, I wasn’t expecting anything to come of it, but three days later, she phoned me to say that there was significant wear and tear in my right hip, and that the results could pinpoint exactly what’s causing the pain. At first, I was stunned, and a little annoyed with myself. Had I done this to myself? Since then, I’ve spoken to so many people who have arthritis too, and the majority of them struggle to articulate just how debilitating this pain can be.

Having Cerebral Palsy is not a big deal, because I’ve never not had it. However, as I get older, I find that I have aches and niggles I’ve never had before. Adapting to having CP comes naturally, as there’s never been a time when I didn’t have it, but chronic pain, although it’s kind of connected to the CP, has been a bit more of a learning curve. Here’s what I’ve learned about having this new CP (although a Google search told me some of the same things, I’m more into learning the hard way).

  1. Chronic Pain is not your fault:

    Admittedly, I naturally walk with my leg turned in, but despite appearances, I do try to walk as straight as I can. It took me a long time to acknowledge and recognise that chronic pain is not a punishment, and that being hard on myself was not going to change it. Sometimes you can do everything right and still end up in pain. This leads me to my second point…

  2. Physical pain can lead to crappy mental health:

    Being in pain is exhausting. I’ve finally succumbed to taking pain medication at night so that I can sleep, but on days where I’m in pain and tired from a poor night’s sleep, the world becomes a dark place. Even the simplest tasks become laborious and time-consuming. Your brain lies to you, telling you that you are useless, a burden. This can lead to feelings of failure and inadequacy. Therefore –

  3. Pain management must come first in your priorities:

    It doesn’t matter how busy you think you are. If you skip the physio, neglect to slap on the TENS machine or push through without the medication, chances are you won’t be able to do what you need to do anyway. In order to be your best self, you need to take control over your pain management. Eat well, drink your water, and rest when you need to.

  4. Pacing is not a dirty word:

    I continually fight this one. After all, we live in a society where “being busy” is seen as a badge of honour. I tend to get overexcited when I have a pain-free day, and I run around the house like a lunatic, scrubbing bathrooms and hoovering only to be left in agony for days after. I think what you’re supposed to do is prioritise tasks and do them at your own pace, with plenty of rest in between. I’ll keep working on it!

  5. Pain can be lonely:

    Most of us don’t want to be seen to constantly complain. As a result, I often find myself withdrawing from activities and meetings that I once enjoyed. I don’t like telling the same story, over and over. Sometimes, I don’t have the energy to be social, and I end up watching Netflix in binges when I could be meeting people out of the house, and this only heightens my inner shame and sense of failure. However, it’s also important to remember –

  6. You are not alone:

    When I eventually found the courage to talk about the impact that being in pain was having on my physical and mental health, I was surprised to hear that so many of my friends were also wrestling with pain, and as long as I don’t fall into a pit of self-pity, I can support and be supported by those who love me most. Many people experience chronic pain, with diagnoses like fibromyalgia. Sometimes people are not believed, but this experience does not make your pain any less real. Thousands of people are in the same boat – take some comfort in this.

  7. A bad day does not mean a bad life:

    I’m having a bad day today; I cannot shake the tiredness and this is slowing me down. It’s frustrating, especially since, in my mind at least, I have nothing to be tired about; no job to go to (hoping that will change soon), no toddlers, and not nearly as much writing being done as I’d like. However, I must admit that I have good days too, especially those spent with family and friends, and that overall, I’ve achieved a lot. Parenting a teenager is not for the faint hearted!

  8. Wheelchairs and walking aids have no moral value:

    Over the years, I’ve heard people saying that they want to be able to walk without aids. My thing is that I’d like to walk more with my rollator, as I did before my hip started giving me trouble. Some days I manage, and some days I can barely stand. My pain and energy levels vary. What doesn’t vary are my duties as wife, mother, and writer. I do get some invaluable help, but overall, meals still need cooked, laundry done, dogs walked. My wheelchair enables me to carry out these duties. I am not lazy; in fact, I am trying to stay as independent as possible.

    Phew! If you made it this far, thank you. I only hope that it helps someone who needs it, whether you’re experiencing chronic pain yourself, or a loved one is. Now, if you’ll excuse me, I’m going to stretch and pray for a good night’s sleep afterwards.

Tuesday Thoughts: Pain in the Ass

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(aka JP’s affectionate term for me. Just kidding)

 (This post was inspired by Julie Helen’s column about her quest for a new wheelchair. I strongly encourage you to read her weekly column on EchoLive, where she writes about a wide variety of topics from a personal perspective.)

It was the weekend of my mother’s fifteenth anniversary that I discovered the letter in my postbox outside, and I took this as a sign. I opened it excitedly, knowing exactly what it was. At last, after fighting for the guts of three years, I had an appointment to administer a pain injection into the buttock of my right leg. This couldn’t come at a better time. The appointment was for Friday, 7 June 2024, and we were due to go to Australia on 1 July. I shivered in excitement at the thought of running around after my sister Alex’s little ones, Cathal and Grace, playing with them on the floor. For the first time in four years, I might sleep for more than two hours straight! Imagine waking up refreshed! Thus, I’d have more energy to write, and do courses, maybe even start cycling on the trike again (I do 2/3 45 minutes sessions on the exercise bike a week, but it’s not the same). 

As the day drew nearer, I did an extra physio session every day, as I dreamt about my pain-free life, smiling as I imagined folding up the wheelchair and throwing it into the spare room. I was tired, but I didn’t care. All of my hard work would be worth it when I was back wobbling around the place.

I don’t know what I was expecting from a little pain injection but suffice to say I will never know. Friday, 7 June was a sunny morning, and I beamed broadly as JP drove us up the M50 towards Tallaght. It seemed the universe was working in my favour; there was hardly any traffic, we didn’t miss our turn-off, and we were parking outside Tallaght University Hospital at 9.15am for our 10am appointment. JP was excited too; I’m sure I wake him often, tossing and turning all night. We found our waiting area quickly, and at 10.20am my name was called. When we reached the room, everything was waiting: the team of doctors, the ultrasound machine, the bed covered in tissue. It was a moment of triumph. I’d been fighting for this moment since November 2022, when they told me that there was nothing they could do for me. And now my recovery was about to start at last.

I was helped onto the bed and a team of doctors carefully pulled down my trousers and started the scan. Suddenly, one of the doctors asked for the head of department to come down. Apparently, even though I maintained that he was rubbing his scanner over the painful area, they couldn’t see my sciatic nerve. Now, I’m crap at biology – my Junior Cert teacher regularly read out my test answers to entertain the rest of the class for the comedy effect – but I do know the sciatic nerve is the main nerve, and if they couldn’t find it, I wasn’t sure I wanted them anywhere near my ass with a needle. 

 I was asked to sit up and I was helped back into my wheelchair. I tried to act like a professional patient, but I couldn’t stop the stinging tears rolling down my face. Your injury is probably just a contusion, they told me. You couldn’t stay still enough for the scan, and we can’t really see any damage. We’re sorry.

This has gone on for four years, I said. So you’re saying this pain is all in my head?

No, no, of course not. We’re saying there’s no silver bullet (Martin Naughton might say “No Magic Pill.”) Keep up the physio, painkillers, TENS etc. Pain management must be a priority in the long term.

Dammit. They warned me that would happen, but I’d pushed for the injection anyway. I have never felt more stupid. Driving home in the car, I saw my fantasy of getting my twenty-year-old body back disappear. More importantly, my dream of walking around Australia on my holidays vanished into thin air.

I never used a wheelchair in my life until I was nineteen years old. Day after day, I pushed through pain and tiredness as I trudged around the Sacred Heart School, going up and down stairs, navigating through the crowd. This was on top of cycling to and from school, every day, for six years. I was pretty darn proud of myself, I won’t lie. I developed an irritating superiority complex where I thought I was better than other disabled people. I was integrating myself like a fridge into a kitchen, becoming invisible in the process.

I have never felt more valuable as I did in my younger days, and now I can see how problematic that is. I’ve written before about my experience of internalised oppression, and even at the ripe age of forty, I struggle to shake it completely. The truth is, I am ashamed of how my mobility has deteriorated. I tend to view it as a personal failure to push myself, to take care of myself, rather than the result of years of trying to make my body do things it’s not designed to do. Sure, I made a choice to use a wheelchair so that I could have energy to write these blogs and hopefully, with Ali in secondary school now, re-enter the workforce and get involved again with the Independent Living Movement. I know the reasoning behind my decision was sound, and yet I haven’t fully dismantled the years of internalised oppression, so let’s face it – I’m an awful hypocrite.

The realisation that I wouldn’t be walking around by the time we went to Australia hit home like a sledgehammer. However, when we stayed with my baby sister in Australia this summer, I was determined to show her that I was still the same active rogue I’d always been. She’d sourced a steel walking frame from her neighbour Dell, and not having the heart to explain that I don’t really walk too far anymore, I accepted it with a grateful smile, while loading up on painkillers. For the first week or two of the holiday, I hobbled around the house, knowing what I wanted to do, but too ashamed to say anything. The second weekend we were in Oz, we all took a road trip up to Jurien Bay. Our accommodation was accessible, so I could use my wheelchair the entire weekend. 

When we got back to my sister’s house in Clarkson, without prompting or any pre-discussion, my sister Alex greeted me at the car door with my manual wheelchair. No words, no “I know you need this”, not even “I think this is a good idea.” That evening, I set the table, unloaded the dishwasher and hoovered, and I know my sister was struck by the difference in my independence and energy levels.  Not having to pretend was a relief for both of us, and I was surprised by how easily she accepted my need to use the chair – without question. She didn’t say she was sad, or disappointed, or ashamed – that was purely the narrative I’d woven in my own head, a stick I was using to beat myself up with. 

It got me thinking about the wider issues of equality and acceptance which, if you’ve read any of my other blogs, you’ll have gathered is something that I’m passionate about. But how can I expect other people to subscribe to the idea that disability is located outside the self, if I don’t? If I continue to connect my self-worth to my body’s ability to adapt within a society which, directly or otherwise, serves to exclude me, my self-esteem will plummet through the floor! More pertinently, I am handing the systems that discriminate against me a viable excuse to do so, on a silver platter. And whether I like it or not, I am not just an “I”. I am a “we”, a part of a wider collective trying to change attitudes and remove barriers, something I will not be able to do until I change my own attitude towards myself and accept myself in all its wobbly entirety.

Being underemployed at the moment, I cancelled a load of my subscriptions, but one I held onto was an affirmation app, which sends me random affirmations during the day. I admit I don’t always read them when my phone pings, but this morning I just happened to flick through them on my watch, as I sat on the toilet. “I am allowed to take up space,” “It is okay to have a hard day,” “I am patient with myself”, and “I have the motivation to create change,”” are just snippets of the messages that come through hourly. We need to change the messages that we as Disabled People are absorbing and, consequently, sending back out into the world. Most importantly, we need to change the stories we tell ourselves, about ourselves.

I often feel like a right pain in the ass when I write this kind of blog, but this – along with other authentic voices of Disabled People – is the only way to change the narrative around disability, for ourselves as well as within wider society. When we take control of the narrative, we can write our own endings, hopefully depicting a fairer world of acceptance and inclusion.