Tag Archives: chronic pain

Tuesday Thoughts: Hip Hip Hooray!

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It was during the first Covid lockdown in 2020 when I, like everyone else in the country, decided that I would step up my fitness regime. I started using the treadmill every day, and I ordered the most beautiful looking mountain tricycle from trikes.ie. As time passed, I felt frustrated that I didn’t seem to be getting any fitter. The more I walked and cycled, the more pain I was experiencing in my right leg. Admittedly, I didn’t think much of it at the time. I just put it down to not having cycled properly in years, maybe being a bit rusty. Then in September 2020, I fell backwards while crushing some plastic bottles under my foot for the recycle bin.

For nearly five years, I thought that this was the moment that changed everything dramatically, for the worst. Now, it seems it may have happened long before this, and I didn’t realise it.

As a wobbly walker, I fall over so often that it’s rare that I remember it. My body sports cuts and bruises that I don’t recall acquiring, never mind how I got them. A few weeks after this fall, I realised that the pain wasn’t subsiding, and that it was going up and down my leg. Sometimes, my knee felt like it was giving way below me. Other times, it felt like a trapped nerve. That was the diagnosis the physiotherapist gave me in July 2021: that it was periformis syndrome. Being me, I googled it, and learned that it should ease within a few weeks, provided I adhered to a religious physio regime.

It didn’t ease. In fact, it got worse, and soon I was getting no more than two hours’ sleep a night. The doctor referred me to Tallaght, but the specialist there couldn’t identify the source of the problem. One doctor prodded me in the back, and because I jumped, agreed with the physio that it must be periformis syndrome and nothing could be done, unless…. It was at this stage that I heard the words “pain injection” for the first time. However, getting a steroid injection into your periformis is a risky procedure with no room for error. I didn’t care. This was the end of 2022. I was sent home and was told that they couldn’t find anything wrong.

In July 2021, I was offered the opportunity of a lifetime – I won a place on the Play It Forward Programme, an initiative headed by Skein Press, The Stinging Fly, the Arts Council, and, in my case, Independent Living Movement Ireland through a bequeathment from founding member of the original Center for Independent Living, Declan O’Keeffe. I’d never met Declan, but I felt that I owed him the decency of making the most of this opportunity. Meanwhile, the pain would not abate. I lay awake every night, trying to get comfortable and wondering where I’d gone wrong, both with my body and with my career. I had a fantastic mentor, the talented David Butler, but I just couldn’t manage to put in the work required to complete my novel. Ideally, the end product of the Play It Forward programme for me would have been a bestselling debut, but obviously this wasn’t the case.

Every day, I scolded myself for wasting such a wonderful opportunity. I didn’t make the most of it, and it is only now that I accept that this was because I couldn’t, not because of laziness. I considered emailing everyone involved in my bursary award and apoIogising for squandering their money, but I knew that emotion was clouding my judgement. Instead, I went to the doctor and told her that I was having non-stop pain and depressive thoughts. The doctor explained that sometimes mental illnesses can manifest in physical ways. I wanted to scream. 

This was January 2024. I had been in a depression spiral since September 2023. I was exhausted and paralysed by a pervasive sense of failure. I didn’t recognise myself. I withdrew from disability activism. I got some proofreading and editing jobs during this time, but not enough to earn a living. I stopped texting and calling friends, though some particular friends refused to be pushed away. The week before my daughter’s confirmation, I went to my doctor and told her that I was having dark thoughts and that I didn’t think I could carry on. She prescribed Sertraline, which I never took.

I never took it because I knew that it was the pain that was messing with my head. It was ruining my life. All I seemed to do was complain, and I was so sick of it.  As I grew more tired, I felt more useless, like I was a burden on those who loved me. I was too tired during the day to write, or to find work, or do anything other than scroll or watch nonsense on YouTube. Taskmaster became my comfort blanket. This is coming from someone who once would rather read or listen to radio or do anything other than sit and watch a TV programme.

In February 2024, still on a crusade for answers, I went to Neurology in Naas hospital, where the doctor there again gave me hope that I could get a pain injection into the periformis and made a referral to have it done.  I should point out that, at this stage, I’d only had a back x-ray, which showed up no abnormalities. We were planning on going to Australia in July 2024, and I wanted desperately to be able to enjoy it pain free. Unfortunately, that wasn’t to be, as I’ve written before. On 7 June 2024, we travelled to Tallaght and I was all ready for my injection, only to be told (a) that they couldn’t find my sciatic nerve, or any sign of damage, on the scan and (b) that they thought my pain was likely the result of a “contusion”.


i.e. That they thought it was impact pain from the fall, that I’d had four years previous.

Are. You. Fucking. Kidding. Me.

I really thought I was going mad. We went to Australia, and I relied heavily on painkillers and my TENS machine to get me through the trip. I couldn’t even walk around my sister’s bungalow; I needed the manual chair. I was so tired and frustrated. When we came home, I slid back into the Netflix binges, completely exhausted. Was this my life now, at the age of forty? No job, no prospects, a life overshadowed by tiredness and pain? What was the point of getting (two) university qualifications, and all those writing courses I’d done since 2014, if I couldn’t use them to build a career?

In January 2025, I rejoined Writer’s Ink, an online writers group spearheaded by bestselling author Sam Blake (Vanessa Fox O’Loughlin) and coaching guru Maria McHale, and I revisited my novel, once again fantasising about how the world needs to hear Rachel’s story. At first, things went well. I did a prompt exercise every day and before long I was discussing my would-be novel with literary agent, Simon Trewin, who seemed impressed. However, by April, I was exhausted again, struggling to get to the end of the day. Another frustrated visit to the doctor, another set of blood tests that showed everything was normal.

“Come back in,” the doctor said. “We need to get to the bottom of this.”

She was taking me seriously, possibly sick of my constant complaining. She brought up my files, and we went through the absolute shitshow that has been the last five years, going through the letters from the consultants, the lack of findings. Suddenly, she frowned at the screen.

“You’ve had a back x-ray. Have they ever x-rayed your hip?”

My hip? No.

“Okay, let’s do that next.”

I duly attended the  “urgent” x-ray appointment, feeling I was wasting my time. A couple of days later, my doctor’s number flashed across the screen.

“It’s your hip.” She was excited. “Significant arthritis. It’s very shallow, by all accounts. I’d say you’re looking at a replacement.”

This was the 22nd April of this year. Nearly five years of looking for answers. And although it didn’t feel like it at the time, it was possibly the best birthday present I’d ever been given. I wasn’t going mad. I wasn’t a hypochondriac. I was suffering – and I use this word deliberately – from arthritis. Five years on, I finally had an answer.

Since that phone call, my life has changed so much. I now go easier on myself, knowing that I will have good days and bad. Not only am I paying more attention to my body, I know what exercises I have to do, how to look after myself properly. In June, once the reality of what lies ahead sunk in, I went back to the doctor to discuss my long-term options.

I need to be a good mum and wife. I need to get back to work. What way should we approach this?

She arranged an urgent appointment with an orthopaedic surgeon. When the appointment came in, my husband and I were stunned.

“Surgery,” he said. “That’s where we are now, and what you’ve fought for.”

I dismissed his words with a wave of my hand. “It won’t come to that.”

My dear reader, as it turns out, it may well come to that. On 4th September 2025, I foolishly attended the appointment alone, reasoning that I would be perceived more capable and confident if I asked the questions. And I was right, but the news landed like a lead brick. After half an hour’s discussion with the surgeon, during which he went through my symptoms and x-ray in detail, he handed me a leaflet – What You Should Know About Hip Replacements.

He said that although wear and tear might be a factor, my hip has possibly always been shallow and that many people (not just wobblies) have it and only discover that they have it when it plays up in their forties. He said that he has replaced the hips of at least four CPers. Best of all, he said that he would attempt a pain injection into my hip. Not just to give me relief, but also as confirmation that the hip was the cause of my pain, before cutting me open.

“Oh God,” I said. “Don’t dangle the dream. I’ve been here before.” I explained my journey so far, but he was confident he’d be able to do it.

He was right.

On Friday 17th October, with the help of an amazing medical team, I finally received a pain injection into my hip. It was relatively straightforward: I lay still enough, and the procedure took ten minutes. I burst into tears, because I felt so proud of myself for not giving up and persisting in finding the answers. I won’t know for sure until the end of the week if it has worked, but I do feel some relief already. I’ve had four good nights’ sleep – apparently, I didn’t hear Rupert barking the other night, which feels wrong – I always am the one to hear him and let him out. Last night, I was doing a crossword puzzle in bed, and I sat with my knees up and the book resting on them. John Paul remarked that I haven’t sat like that in years. Today is Tuesday, and I feel exhausted, five years of sleepless nights catching up on me. But I’m not in pain. It feels like being on holiday from my own body.

I know I shouldn’t get too excited. After all, it’s still early days and this injection mightn’t work long-term. And if I do need a replacement, recovery will be long and arduous. But for the first time in a long time, I feel hopeful that I can get back to myself and to who I was before all of this started. 

I suppose I’m sharing this for two reasons. First, to apologise to the many people I’ve lost track of in the last five years, and to offer an explanation – not an excuse. Second, to give anyone who finds themselves in the same position some hope. I believe you. Please don’t stop looking for answers. I offer you love and light xx

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.

Grasping the Nettle

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I believe in the importance of words. I’m a writer, someone who tries every day to forge a career by stringing words together. I know that some words can have more impact than others. Some words are deliberately provocative, while others can hurt as silently as a nettle’s sting – irritating, but unnoticed by the nettle itself. The nettle’s sole purpose isn’t to hurt; it’s to protect itself, to grow. In fact, nettles have fantastic healing properties. And though I’m not an adventurous eater, one day I hope to accumulate enough courage to try nettle soup.

It’s also said that if you grasp a nettle, tight in your hand, it won’t sting, or at least not as badly as it might if you just brush against it gently. And of course, the good old dock leaf is a tried and proven antidote to that peppery red rash. But, I needed more than a dock leaf to draw out the sting of the consultant’s words in Tallaght two weeks ago.

I’ve had pain on and off for over two years now. I’ve been on a strict physio regime, which I’ve obediently adhered to, but some nights, the cramping in my leg keeps me up for hours. Which means that I’m tired the next day, too tired to use my exercise bike or do any writing. My physio said that I have to choose my tasks carefully, and frankly, I detest being told what to do. Granted, some of the things I’ve been known to do is downright ridiculous. I used to dust my skirting boards on a regular basis. I like hoovering on my knees because it’s easier to keep my balance, also, it’s easier to spot the dirt on the floor. The physio has forbidden me from doing these things, which only makes me do them more. Surprise, surprise!

So, when I went to see the consultant in Tallaght, after travelling all the way up on the train, I was devastated to hear him say the words “long-term chronic pain condition.” I hadn’t been calling it that; I’d been referring to it as “a bit of leg pain,” “sciatica” at worst. (They don’t think it’s sciatica, but they reckon the nerve is trapped inside the periformis muscle). The thought of having broken sleep indefinitely was devastating, but there’s nothing they can do. I’ve refused the medication offered because I’ve read about the side effects, and owing to the involuntary movements, I’m not a candidate for pain injections. Go home, and do physio. It may improve, it may not. Nobody knows.

The guilt I felt was overwhelming. Despite all of my best efforts, I was now feeling like a burden to my husband and daughter, something I’d never wanted to happen. I felt like I’d failed my parents as well, after they’d invested so much time in making me mobile and independent. Chronic Pain condition. A different CP, another label used to define me. Hadn’t I enough of those already?  The consultant said that all I could do was go home and do my own research. I’ve changed my diet, and I’m starting to come around to the idea of pacing out more onerous tasks. One thing that my husband and I discussed was getting a manual chair for knocking around the house in, on days when the pain is particularly bad. But I can’t bring myself to do it. Every time I look online for chairs that might be suitable, or asking the HSE for one, I end up folding the laptop screen down and saying not yet. I’m not ready. I might become lazy, or overdependent on it. I’m tired of being tired, though, and something’s gotta give.

Yesterday, I was trying to write, when a friend of mine called in unexpectedly. I was so excited to see him, having not seen him in person since the beginning of Covid. We had a good chat about various things, and suddenly he smiled and said, “Do you realise that something you said changed my life?”

I laughed. “Something I said? Take all my advice with a grain of salt.”

He recounted the incident. It was about seven years ago. We’d been at a personal development day together, and the facilitator asked us to set out our short term, medium term and long-term goals. My friend’s long-term goal was to be able to walk from his house to his gate, without his stick. And in front of everyone, I’d asked him why this was so important to him.

I relived that horrible feeling of shame. “I regretted it the minute I said it. I’ll never forget how hurt you looked.”

He smiled at me. “It was the best thing you could have said to me. After that, I decided to concentrate on what was important, and what I could do.  And to re-evaluate my relationship with my stick. This stick enables me to walk and keep my independence. Because of the stick, I can stay mobile. I can go to meetings and get involved in local activism. It’s nothing to be ashamed of. You taught me that.”

It’s true – I did. I really wanted my friend to understand how the social model liberates us from blaming ourselves for our disabilities.  And yet, here I am now, having to wrestle with a whole new meaning of what independence means for me.  A definition that, for much of my life, focused on my physical abilities and strengths. I’ve always been fit. I used to cycle everywhere. I’m still walking a bit, something I didn’t think I’d be doing when I fell and acquired my injury, two years ago. But as difficult as it is, I need to reassess my priorities. Is it really important to be able to scrub the grouting of my tiles with a toothbrush? Can I successfully balance the roles of mother, wife and writer while avoiding as much pain as possible?

If I had the answers to those questions, I’d be laughing. The only way I’ll know is trial and error. Isn’t that how we make all our greatest personal discoveries? I wish I could be a little easier on myself. If I can find the courage to grasp that nettle, maybe it won’t sting too much in the long run.