Disappointments, Direction and Decisions: Visiting the Musculoskeletal Clinic

Yesterday felt like a big, anxiety-inducing, sad-making day.

I woke up early knowing I had to attend my MSK Clinic appointment with butterflies in my tummy and a raspy dry throat. Perhaps it seems a little over dramatic to feel this way, but I’d be lying if I said I wasn’t anxious.

Truth is, I had been waiting for this appointment for months, having had to be re-referred to a different service in a different part of the country since moving back after my university studies. This appointment would determine what kind of support I’d be entitled to back in my hometown, and having got used to the routine and effectiveness of treatment back in my university town, I was extremely anxious at the prospect of having no support at all, which seems like an exaggeration, I know.

You see, it is very much a postcode lottery when accessing healthcare.

As much as I love the NHS, I must say there really is a huge difference with regards to provisions and accessibility depending on where you are in the country. It’s all a bit touch and go with certain services, as each have different approaches. Back in East Yorkshire I’d been lucky enough to receive frequent acupuncture treatment, excellent mental health treatment through several talking therapies, and access to a neuro consultant, occupational therapy and physio. Though I’d seen a physio and neurologist a long time ago back home, I hadn’t ever seen an occupational therapist despite having cerebral palsy. I also hadn’t had frequent acupuncture, or had monitoring of my curvature since the age of sixteen. It made me anxious to think all the fantastic progress I had made in Hull could possibly be stripped away just because the services and provisions aren’t available here.

All of this explained the butterflies and raspy throat, I guess.

As I suspected, things have changed. Much to my disappointment, they don’t offer acupuncture here. This was a little hard to swallow (and accounts for my exclamation of ‘oh no!’ in the consulting room) and though I was offered facet joint injections back in East Yorkshire, I was told I probably won’t be able to have them over here for a few years owing to my age. I might also have to consider a spinal fusion in the future (eek!) so they’d want to reduce steroid exposure to a minimum.

Again, fairly disappointing.

It’s not all bad, though. I will be discussed at their monthly review -‘they’ being made up of doctors, spinal consultants, neurologists, nurses and pain management specialists – and it is likely I’ll be able to access support to help with the mental struggles of the cerebral palsy and scheuermann’s, which is really quite exciting considering this aspect has never been discussed. I’ll also have specialist physio, with therapists who know the condition, and will be able to advise me accordingly, a change from the ‘I’ve never actually seen scheuermann’s in a person before!’ physio I’ve had previously. So, I’m feeling a bit mixed-up about this one. I am seriously gutted I can’t have acupuncture, and will be looking into private treatment options.

However, I am feeling a glimmer of hope, and really feel that the mental health focus will help. It is also lovely to know I am not alone, so a big thank you to Ben for coming with me to my appointment. This is a start, and I have at least some direction, and I’ll just have to hang tight and see what’s in store.

I’ll get there, I’m sure.

Sending warm bear hugs on this chilly day…

Heather x

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Today has been great…

…although it didn’t necessarily start off that way. This morning I was sore and cranky but I took some painkillers and made it into uni (after some cuddles with guinea pigs of course). Here’s one with smudge which is super cute, if I do say so myself .

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Smudge saying hello

Emma has been here since yesterday which is super lovely. It’s great to have a catch-up with my best friend, especially when ice cream is involved. She accompanied me to my pain management so we went for hot waffles afterwards which were as good as they look. And yes, they are m&ms on the top…and cream….and chocolate sauce. And I had two scoops of gelato; banana and nutella. I know, I really do have a big sweet tooth!

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If you’re ever over this way, be sure to visit caffe gelato. It’s a popular haunt for families and students alike, and when I was battling my way through final year it became a fabulous incentive: unhealthy perhaps but delicious all the same.

Emma is a really creative and crafty person, and she crocheted me a purse which is amazing!! I love anything handmade; it’s so thoughtful, and no-one else will have the same thing.

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It was nice to have pain management today because I’ve really been missing it and feeling it, too. I had an orthopedic appointment last week which is useful because they’re going to review my spine, which I think is needed. It will mean having a full spine mri but hopefully all will be well and I won’t have any more problems with the vertebrae in my spine to deal with. Fingers crossed!

Things are looking up, and this week I feel on top of all my work and errands which makes a change.
Although admittedly, I still feel like being an adult is hard, and I still think I’m about 6.

Shame I turned 22 the other day!

Anyway, I better get going. We’re going to chill out tonight with some films and snacks.
It’s so lovely to have a little bit of a break in my schedule.

Has your Monday been going okay?

Let me know, and keep your eyes peeled for my Wren Kitchens post…it’s going to be a good one!

Heather X

Ps here’s a cute pic of Patch…I know. I’m officially a crazy guinea pig person.

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