The whack-a-mole nature of chronic pain

And how seeking help can feel exhaustingly lonely and frustrating

So the thing about chronic pain is…it’s chronic. This means (as I am sure you know) it’s constantly or persistently recurring. What a pain in the ass, right?

Sometimes it’s fine because you get used to managing the nature of your pain, and then other times it will decide to blossom and bloom into something new for you to learn about and tangle with. That’s the whack-a-mole, and it’s where i’ve been at for the last couple of months with my right shoulder, and more acutely for the last two weeks.

I absolutely do not write this seeking sympathy. Thank yewwwww. 🤣

I am ok and I am not ok at the same time. It’s ok and normal for me to feel defeated and despondent about the fact this pain isn’t getting better at the moment; that’s an appropriate response. It’s even ok to struggle through and still have to miss PT classes, fall behind on writing and work because I can’t get my arm to function, or to weep and vom with the intensity of the pain sometimes. It’s honestly all ok, because these things mean I’m accepting, engaged with and actively appraising my situation. As my friend Kris might say; ‘I’m alive to do those things’, and being able to do that means on some level I have faith it’ll improve, and it will.

I know that sounds strange to say I’m ok, because it’s patently not ok, but when you’re IN IT you have to just tell yourself it is, until it ebbs or you find a solution (however temporary). If you keep telling yourself ‘IT’S NOT OK!! I AM NOT OK!!’ then you just make your body panic, tense, catastrophize and things get worse. So I’ve become pretty adept at watching myself from a little distance when I’m consumed by pain;  letting it be until it shows me what I can do.

For those of you who love and know people who manage chronic conditions, this is perhaps a bit of reassurance that it’s ok to let them be upset about it and feel low when they do; they know you can’t fix it and they don’t expect you to. Sometimes having someone just make space to hear that it’s rough, and hold that knowledge without doing anything else, is a medicine in itself. 💛

Annnnyway, back to me again. lol.

Unfortunately none of my regular avenues have worked for this f*cker, and I’m beginning to figure out that it might be a message rather than just an injury; that things in my life still need to change, or my body will make them change by stopping me in my tracks.

I am a firm believer that if you don’t listen to what your body or situation in life is telling you, it’ll just tell you louder and louder until it gets you into a spot where all you are left able to do is listen, and accept what needs to be done. For some people that’s to leave a marriage, for others it’s a change of career and for others still it’s letting go of a belief system. There are many ways the body tells us things that our heads aren’t hearing, and this might be one of those times. We’ll see! 

My therapist has some other rather excellent suggestions too, such as me possibly self-sabotaging on a deep level just as lots of projects are about to reach fruition and I might be ‘seen’. This being ‘seen’ could equate to me being a ‘show off’, which we know from my previous posts is a terror more than any other for me. Lol.

Anyway, I’m learning and listening to my body. I’m functioning ok with some days of less functioning which I forgive myself for. It’s all part of my journey and it makes me VERY grateful for the pain-free times, which are coming soon (I just know it). And, I’ll be super interested to see what happens to my shoulder pain when I’m walking the coast path for a month rather than being at my desk and trying to juggle 100000 plates each week. :) Maybe, just maybe, it’s as simple as giving myself a holiday, and one that can immerse me in all the things I need in life: books, walking, nature, healthy food, silence, sleep and kind people. 

What am I figuring out that’s new this time around?

Because I am always learning, I thought I’d gather together a few things I’m learning about shoulder and neck pain, the connection with my ADHD, and why it’s so fucking hard to solve. I’m also going to get mad about physiotherapists - sorry in advance and stop reading if this is going to piss you off* (and if you ARE one I am sure you’re very lovely). 

* I warned you, this is punchy**

** I am cross about physiotherapy and go in on it below (in case that wasn’t clear)

LOL ok LET’S GOOO

The Physio Stuff

I’ve never yet met a physiotherapist who hasn’t made me feel like crap in some way; demoralised, confused, small and demeaned.

(OK THAT WAS SPICY - sorry if you’re probably a really lovely physio and reading this!)

My most recent and expensive foray to a physio in Truro for my ongoing shoulder issue made me feel so pathetic, insignificant and irritating for having the injury I do, that I wept (and was curtly asked what I was crying about) and then continued to weep all the way home. It was deeply humiliating, especially as I had gone there seeking support and in a very vulnerable state.  Of course, I decided that it was probably my fault and I was just being sensitive, so I went again for the next appointment and the same thing happened.

I can’t remember ever being made to feel so ashamed of my body and so useless that it wasn’t working properly. Surely physios aren’t supposed to be so curt and disdainful? That’s not a one off -  my last try at physio for the same thing was in Falmouth last year, and it was equally awful but in a different way. When expressing pain moving my shoulder in that session, I was told ‘don’t be so silly, this exercise doesn’t hurt, just do it.’ Both of these were paid, not referred by NHS btw. The Truro one was PRICEY, which rankles because I defo could have talked shit to myself for 50 mins in the mirror for free. 

So, what am I learning here? Can it be possible that physio isn’t right for me ever? That I can never get better? Am I genuinely naive and it’s silly to think physios should have some empathy or be interested in your condition as a whole? I don’t think any other modality or intervention I’ve tried over 20+ years of pain and physical management has ever felt as ‘small’  as physio has, which is why it’s never been something I’ve tried much. I AM hoping there might be a route forward though, as I’ve been doing intensive research and I think I might have found someone who works with neurological conditions and mobility, which might be able to help. The reason for the neurology aspect becomes clearer below..

(also, please do comment with any positive physio stories you have, or any suggestions! And for all the nice physios out there - thank you and GOOD JOB)

Please can I have some proprioception for Christmas this year?

So to give you a more detailed picture, my ongoing shoulder pain has become so bad recently that that I have to sling my arm for periods of time, and it’s also made me quite sick (just pukey with the level of pain). I have what’s apparently called scapula dyskinesia  which is whaaaack (and just a general term for ‘not moving right’ I think), but I have also learned that a huge part of the problem with it is my very poor proprioception. 

“Proprioception, or kinesthesia, is the sense that lets us perceive the location, movement, and action of parts of the body. It encompasses a complex of sensations, including perception of joint position and movement, muscle force, and effort.”

Sciencedirect.com

Poor proprioception is something that practitioners have often mentioned to me when treating me throughout my life. I would lie ‘straight’ for treatment only for them to kindly say I was more like a banana, but I still  wouldn’t even know in which direction I was bent, and they’d have to tell me so I could straighten out the right way! I also find it interesting that it relates to not being able to gauge how much ‘force’ you’re putting into something. Dad used to tell me not to be a ‘bull in a china shop’ or when turning off taps ‘don’t wring it’s bloody neck off!’. Or I’ll slam my car door thinking I only pushed it gently etc. but it would go BOOOM SLAM, and I would also often break things by accident and not know why or…how? I would say “But I barely touched it!” and I would mean it!

I’ve learned that poor proprioception is very common in people with ADHD and hyper-mobility, which I have. Since I was diagnosed with ADHD I’ve read more about it, and have realised it has contributed to a lot of my past pain issues. In short, my brain isn’t great at keeping track of where my body is in space, or what it’s doing. Sadly, this doesn’t let me off the hook for sometimes flipping the bird at people (seems unfair, right?) because apparently I do know my arm is doing that, but it does explain why some of my muscles are so agonised, and others are asleep even though I am shouting at them with my brain. 

But how has this caused my current clusterf*ck you may ask? Well, it’s clear that my right shoulder-blade has been pretty disconnected from my brain from a long time, and won’t do as it's told. In fact, when I was assessed recently it was quite shocking for me to realise that although I can move my left shoulder blade, my right just doesn’t want to move, even when ‘in my brain I’m moving it around’. Nope - no matter now much focus and effort I put in, I can’t get a piece of my body to shift around how it’s supposed to, which is pretty upsetting. It’s especially hard as this is in an area I can’t visually ‘see’ either, so it’s harder to work with it to fix it. My lovely PT pokes it for me when I’m working on moving it, which actually helps a lot to cue the right pathways.

These communication issues with the scapula  means that the muscles around the shoulder blade don’t really know what they should be doing, but they damn well know I need to move my arm, so they all try to help…all the time. They all overwork, and what this does is flare them up with exhaustion, pinching nerves with the inflammation and triggering numb fingers and shooting pains. I think recently, with overworking myself generally, all those muscles have just said ‘enough’.

As my therapist also said, perhaps I’m being told physically by my body that I’m ‘shouldering too much’ in every sense. (Told you she was good).

So what’s next? There’s always a way through…

You never know what people are dealing with when their conditions are invisible, and you never know how hard they’re trying to get well, and how exhausting that in itself can be. And we’re everywhere actually; getting through with a smile and the occasional apology for being short or irritable, or being late returning a text or email because we can’t sit at a desk today (but don’t want to look weak, so don’t say so). But we’re doing our best (I see you doing your best!).

So, I ended up going to the doctor this week as it was so bad. This can be a stressful experience for me as I’ve spent a lot of years desperately explaining my pain and body to different doctors hoping for answers. For a long time in the past this was met with blank walls and the (mostly self-imposed) feeling that I was either making it up, it was in my head or that I was a nuisance. The doctor I’ve had for a long time now though is truly wonderful (Dr Rogers - if you’re out there, thank you). Alas, it’s a 6 week wait to get an appointment with him, so I went with whoever was available on the day.

I arrived and actually cried as discreetly as possible in the waiting room the whole time 🤣 . Have you ever felt like that? I knew I had to muster energy to explain to a stranger what was wrong and give the past context, but all with my foggy pain brain, my ADHD brain AND my anxiety about not being believed. It felt like a lot (but I was very quiet with my crying and made sure to face a wall, lol). When I got in the room, I asked her for help and explained I had finally come because two of my fingers were now numb, I had lost 50% dexterity and grip in my hand, and was experiencing the feeling that I’d be been stabbed in the right middle of my back by my shoulder blade, which was referring everywhere. I couldn’t quite get all that out at first though, because I just sobbed “HELP MEEEE” at her as soon as I sat down. But we got there in the end.🤣

I explained I’d tried hard to fix if for myself the last few months with physio and chiro and Bowen but that it was just getting worse. She was very nice and didn’t make me feel shit, but as usual didn’t have many answers, because my body is contradictory and never presents a simple problem for anyone. I don’t fit in any ‘box’, even though I could see she tried (in the best way). She wasn’t sure what it could be, and told me Doctors can’t refer for an MRI from the GP surgery anymore, so she has requested an X Ray for me and then the musculoskeletal team will take it from there. Back in the system.

And so I wait, with some Naproxen again (after years of not needing to take it) to add to my codeine, which is brilliant. It’s meant the last couple of days there’s been much less pain, and can write again properly! Hooray! There are ALWAYS WINS.

I might be £160 lighter from those two shitty physio visits, as well as the cost to my confidence and sense of dignity, BUT the upside is that it caused me to lean more deeply into my own learning. I know about my body, my shoulder joint (I’ve even ordered a physio model so I can visualise what I can’t connect with!) and how my ADHD might have always contributed to my pain. It also meant that I was forced to see the GP and might get some answers that way too. In the mean time, I will work on feeling good.

I’m always learning, and that in itself brings me great pleasure. Soon this pain will recede and I’ll be able to teach myself some exercises in order to connect with my scapula and improve my movement ongoing - I just know it. I’ll be swimming again, doing overhead presses in training and able to get things off high shelves without nearly fainting (jokes). It’ll all be even more ok than the sub-par ok I have now. In fact, it might even be on the mend already! Here’s hoping, and until then the naproxen has got me operating on pretty much all cylinders.

Kindness rules OK

I don’t have a pithy takeaway from this piece this evening. I just wanted to give you an honest window into the silent stuff that goes on with people who look like they’re doing ok, but sometimes they’re using a heck of a lot of energy and time managing their whack-a-mole conditions. These can be dormant for years but then float unbidden to the surface to f*ck with you for a bit, before they sink again for a while. It’s just part of the deal, and I don’t know if we acknowledge or mention it enough in a way that isn’t perceived as miserable or bleak. It’s not bleak; it’s the reality, and it’s one many people deal with, and deal with very well.

No sympathy needed here, truly, but comments and insights welcome. Perhaps over the next couple of days be extra kind to yourself if you relate, or extend that kindness to someone you know that once mentioned a chronic thing to you but hasn’t mentioned it since, because they’re probably still wrangling that mofo in the dark sometimes where no one else can see. Maybe let them off that they didn’t come to that thing they promised they would - I bet they wished they could go just as much as you did. 💛

With much love, warmth and positivity,

Gail xx