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 4^th 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.