France: Life can be a pain

“OK, are you ready?”

“Yes, let’s do it”

“On 3 then; 1…..2……”

“NO! NO! NO! NO! NO!”

And so went another failed attempt to stand me up. The pain was too great. I slumped back onto the bed to regain my strength ready for the next attempt so I could walk off some of the intense discomfort I was in.

Unfortunately this mini-ballet had been in progress throughout the night on Tuesday. Rachel, with my arm draped around her, valiantly attempting to lift me to my feet from bed, and me unable to take the resulting pain from trying to stand up.

But how did we get here?

New GP appointment

Things had been getting gradually worse with my pain, and after 4 GP appointments (2 UK, 2 France) I still had no idea what was actually wrong with me or what I could do to make it easier. My world, and what I’ve become able to do without pain, had grown smaller and smaller.

Gradually I had started to lose the ability to grip, push or pull with my hands, which is pretty frigging scary. Try reorganising your pillows at night when you literally can’t pick them up. Teeth started to become very handy for this.

As a result of seeing a new doctor (Dr Danny) on Monday, things began changing quickly. He could see that I was in significant pain, and now that this was including the fingers of both hands too it was getting harder to imagine that it was caused by sciatica or frozen shoulder. He called the Rheumatology consultant at the hospital in Colmar directly to discuss my situation, and a small pile of post-its began to build up of actions to take.

We walked out with two prescriptions; one for a wide range of blood tests and another for CT scans to take in all the points of pain I was now suffering.

Unfortunately, the prescription list didn’t include any actual painkillers; my prime purpose for the visit. Dr Danny said these could interfere with the test results, so after six weeks of a variety of painkillers I was now having to go cold turkey.

We went straight to the Laboratoire de Biologie Médicale Barrand for the blood tests, then Rachel was fantastic in lining up the CT scans at Radiologie Bartoldi for Wednesday. But we couldn’t make the all-important appointment with Rheumatology until the results had been received. Rachel gave it a try, but was told on the phone that Dr Danny needed to make the appointment!

This takes us to our opening scenario on Wednesday morning. A sleepless night and much clock watching prior to the Radiology appointment at 11am. With no word of a lie, this had been the worst 24 hours I’d experienced in my life. Little did I know what was yet in store for us…

Radiology

I was very worried about trying to walk down the outside steps of our apartment, getting in/out of a car and driving any distance to Radiologie Bartoldi. Rachel tried her best to have an ambulance take me, but this would have only gotten us to the emergency unit and not my appointment. So we gave it a shot and it all worked out far better then expected.

Once checked in I didn’t dare sit down prior to being seen in case I couldn’t get up again (and also low, hard metal seats were a guarantee of pain after 5 mins), so I shuffled up and down the corridors for 15 mins. Finally we were ushered into an ultra-modern radiology suite with the largest, sexiest scanner I’ve ever seen! The radiologist was lovely and very understanding/helpful so things started well; me stood in just my underwear arranging myself in any of the poses she called out for. I’m like that, particularly after a few drinks.

And on it went. And on. And on. Ever been at one of those weddings where you’re required by the photographer to be in every shot? (Actually, could you imagine the disappointment of having me in my underpants in your wedding photos?) Well, that’s what it felt like.

When we’d finished scan 28 I could feel my legs wobbling from the effort, and I began getting that tell-tale high pitched noise in my ears warning me I was going to faint. Rachel and the Radiographer were on it instantly in getting me on a stool. But, unfortunately, that didn’t exactly leave me in a secure position and I passed out and slipped off the stool.

My next sensation was one of enormous pain in my legs. I had essentially folded them up under me with my full weight, which in normal circumstances would have been fine, but this was a huge no-no for my legs in their current state and I let the world know it. Loudly.

Lying helplessly on the floor surrounded by well-meaning people that had no idea how to help me was frustrating. Pain in my hands meant I could not be pulled up. Pain in my shoulders, arms, hips too brought the same challenges. I was so tired and weak that I couldn’t pull myself to even sit, so I barked at Rachel to sit on the floor behind me with her back to me so I could at least sit up with her back providing me support.

A wheelchair was brought into view, and I couldn’t help wonder how they thought I could get into this. One particularly pushy member of staff (let’s call her ‘Snotty Vache’) told me I couldn’t lie there all day. This was really helpful as it instantly removed the extreme pain I was in and I sprang to my feet and danced a jig. Just kidding.

As ever, Rachel was on hand to solve things; she instructed the staff to call an ambulance and take me to the emergency department. Thank God she did. By now I think my loud moaning had frightened off all the other patients.

Les Pompiers

Before too long I was surrounded by well-meaning people that DID know how to help me - Les Pompiers! But shouldn’t they be out fighting wildfires?

Once I’d been through with them my pain points it was clear that it was ‘mountain rescue time’ using a Stokes Litter to get me off the floor and onto a proper stretcher. This worked a treat, and after I begged for some support under my furious legs they did that too! All-in-all I’d gone from agony to the most comfortable I’d been since bed.

It’s weird how circumstances unfold, as I’d almost forgotten Rachel in all the efforts to get me off the floor to keep Snotty Vache happy. I think I had a quick glance of her before I was wheeled off to the ambulance, but I guess the glut of TV medical shows I’ve watched meant I was expecting her to turn up in the ambulance to ride along with me, abandoning our car for the chance of yet another chorus of “Ouch, fuck that hurts” from me.

I’ve since learned that she was settling bills for the Radiology work and hugging some of the staff for their help and understanding. If only I could have asked her to poke Snotty Vache in the eye.

Emergency Room

More TV clichés ensued with the classic ‘lying down looking upwards watching the ceiling move’ shot as we moved through the hospital to get me checked in. A quick name check, the crew offloading what they’d done and what was wrong to the nurse, and I was wheeled into a room, door closing with ‘the doctor will see you soon’.

And then I was alone in a room with a closed door.

I know I wasn’t bleeding, in danger of dying or any of the numerous other issues presented to doctors in an emergency room. But I was in some pain with no way to let anyone know. And without Rachel I felt so alone.

As the pain grew stronger I was back to moaning out loud again, but also talking to a non-present Rachel. If only I’d thought to grab my phone before we got split up I could have talked to the real one.

The doctor did eventually come and I begged her for pain killers. She asked for all the information about the blood tests and scans, which was all with Rachel. I said to check the waiting room (who knows a phone number without a phone?). Thankfully a nurse turned up soon after with a collection of drugs - no idea what I took but it did chill me out a lot.

What I also learned from the doctor was that Rachel had spoken to Dr Danny and he’d secured me an appointment with Rheumatology on Thursday, but they were going to see if they could admit me to the ward.

At long (too long) last Rachel was allowed into my room and we caught up on everything with streams of tears, declarations of the other being the most wonderful person ever and solemn promises never to be parted again.

Before long the Rheumatology consultant, Dr Philippe, dropped by to say there was a bed available so I could be monitored overnight and they could get on with treatment.

And before you could say “The NHS could never achieve this level of coordination if they tried” I’d been collected by a porter and taken down into the subterranean tunnels below the hospital.

Rheumatology

The trip to Bâtiment 43 (Rheumatology) was quite the thrill ride. My bed had been slotted into a protective plexiglass surround by the porter, which (as far as I could tell from my horizontal perspective) included a motorised section at the front, as we were no longer at walking speed. It was a blast! Made me wonder how far these tunnels extend.

Emerging from the depths into Rheumatology I was greeted by five doctors! And that’s one of the things that strikes you about being in hospitals here; you don’t feel they are overstaffed.

They were keen to get their hands on my joints so Dr Sophie and her colleague took first pick. They gave me a thorough ultrasound on my hands, shoulders, knees and hips. It was weird watching the screen (which I didn’t really understand) as it looked like my bones overlayed with images of the wildfires on them, each one flashing away at various points. I’m guessing it was my blood flow?

Then they took some liquid from my knee for testing - apparently there was plenty kicking around. It came out looking like strawberry cordial. But this, my friends, was going to be the key to working out what was going on.

And work it out they did! While I’ve been assuming that my aches and pains are due to old age and not looking after myself properly, the truth is far more interesting. Looks like I have spondyloarthritis (or ‘spindly spondly’ as my daughter has christened it), which is a group of conditions with a common purpose; generating antibodies that attack my joints and their muscles. As Rachel put it ‘what a stupid illness!’

So, the approach to tackling this git of a disease is less about managing pain and more about letting loose a batch of little soldiers to kill off these unwanted antibodies. This would be via subcutaneous injection every month, and for the rest of my life - it’s not an ache that’s gonna go away.

Have to say it was a relief to hear from Rachel that the insurance we had to take out to get the visa will cover the hospitalisation, but they won’t cover the ongoing medication. So our best hope is to self fund this for a couple of months until we get signed up to CPAM, where with a bit of luck it might be considered the sort of medication they fund in full.

This morning

After another great night’s sleep and being back on anti-inflammatories, much of my range of motion has been restored (remember; this is the temporary and inefficient fix) so I have literally been dancing around my room this morning to get the legs and knees used to the idea of doing something again.

I’m being discharged tomorrow but (are you listening NHS?) they will keep my bed open over the weekend in case I have a setback and need to be re-admitted.

Dr Philippe will continue to see me as outpatient, and I need to find an MRI appointment ASAP so that they can confirm their diagnosis and get me on the good drugs (did I mention they have NO side effects?)

It’s been a rollercoaster, but not one I’d choose to go on again. What has got me to the end has been the unbelievable French health service and the fantastic staff at Hôpital Civils de Colmar. But of course (as my opening para shows) my amazing wife has been the absolute rock I needed and can’t live without.