Living with pain: trials, tribulations and tripping bear balls

I write this to you, my readers, after a five hour nap and after calling in sick to work for the millionth (OK, possible exaggeration, but you get my drift) time in the past 19 months. I’m also off my rocker on co-codamol and naproxen, so if there are any spelling mistakes or I just lay on the keyboard and write  something like ‘dfjvhibijsndcn’ you’ll know I’ve either a) fallen asleep drooling or b) totally zoned out ‘Fear and Loathing in Las Vegas’ stylee (insert trippy lizard scene here).

This isn’t a cry for help, nor is it a ‘woe is me’ pity party which you are cordially invited to (best dress only, darlings). This is me telling the ones who may listen what it’s been like to live like this for almost two years and understand that although I might come off as a Regina George type caricature, It’s more wounded animal than a reflection of my true self. So please bear with.

The extreme pain started back in November 2014, though has been on and off since around 1998. Here’s my gig: I suffer from hypermobility, and no I can’t squish myself into a jar, bend over backwards or do the splits though I do have freakishly bendy joints (and no I won’t show you). I also have valgus deformity of my hip joints (also known as hip dysplasia) which basically means the bone in the joint is deformed to point outwards. To put the cherry on the cake why not chuck in some bilateral labral tears of both hips joints and a crumbling disc (S5-L1) in my lower back for good measure. I’m feeling pretty fucking sexy right now.

When I first went to my GP back in November 2014 and DEMANDED an x-ray they actually said to me “Well, we could do, but we probably won’t find anything”, I had TO BEG my GP for an x-ray as I was in that much pain. Thankfully they finaly gave in to my pleas and off I trundled to the closest hospital (about a 30 minute walk from my GP). Yes, I walked there, you may question this as I say I was in pain however I’m stubborn as fuck and will crawl up the street like the girl from ‘The Ring’ to get to where I have to go if it means I can get a little bit of exercise in the mix.

They usually say the results from x-rays take around 7-10 days turnaround, I actually had a phone call less than 24hours after having my x-ray (queue middle fingers up to aforementioned Doctor and cries of relief that I wasn’t making it up/ going bananas). The x-ray showed some clouding over my lower back and left hip joint. Marvelous. This lead on to various Doctors appointments, hospital appointments, an MRI scan and referral to a specialist hospital in Oxford which I won’t go into in too much detail, however it was a waste of time, money and emotionally draining.

After months battling to get my joints sorted (almost a year of daily pain at this point in time), being brushed off by many of the NHS doctors I’d seen (not dissing the NHS, many people I encountered were sweethearts) I made the decision in October 2015 to go and pay to see a private specialist. To get a gist of where I was mentally at the time, here’s the e-mail I wrote to them:

From: xxxxxxxxxxxxx- personal email address, you ain't having that!
 Sent: October 09 2015 08:57:01 AM
 To:portsmouthwebform@spirehealthcare.com
 Subject: General enquiry from Spire website

You are receiving this email because the user specifically selected Spire Portsmouth Hospital.

Please enter the details of the person below into CCMS, and respond to the enquiry using the contact details provided below.

Enquiry type: Appointment request
 Enquiry: Good Morning,

I have been in terrible pain for almost one year now and despite having had x-rays, MRI scan and being referred to Nuffield Orthopedic Centre in Oxford they have decided they do not want to do anything and have dismissed any form of treatment. I spent most of last night crying as I can't cope with the pain any more. I sometimes feel like I'm paralyzed by pain from the waist down. Last night I couldn't sit up in bed and it felt as though I didn't have any muscles in my core to even try and lift me to sit up straight. It's been like this almost daily a year and I'm not sure how much longer I can cope?!

My MRI results have shown bilateral labral tears and early degeneration of the discs S5- L1 in my back. For the past year I have been in pain daily, mainly first thing in the morning where I can hardly move a millimeter without having shooting pains then continued stiffness throughout the day. I always sleep with a cushion between my knees to alleviate some of the pressure.

I regularly wake up with searing pain in my hips and the middle of my back downwards. The heat helps and my pain killers (naproxen 500mg, co-dydramol 500/10mg and omeprazole 20mg) do take the edge off slightly, but I still had to spend two days in bed recently as it hurt too much to walk. A lot of the pain is searing/ shooting pain if I move slightly, followed by daily aches, pains and stiffness. My hips also feel like they are throbbing throughout the day if I've not been able to move around much.

I started to have physio at St Mary's hospital in Portsmouth, though this has done nothing to ease the pain and I stopped going.

I feel like I've been dismissed by the NHS. I know my body and feel that something isn't right. I really don't know what else to do. 

Hope to hear from you soon,

Kindest Regards,

Alanna

Dramatic, non? Oui, but that’s what it’s like folks.

Within 10 days I had an appointment with a specialist who cared. He told me everything would be alright as I sobbed over his desk and promised that he would look after me. This Doctor referred me back to himself on the NHS so I wouldn’t have to pay for further treatment and had I took the option of having a therapeutic injection into my right hip joint back in February 2016. The other option was to have to my hip joints broken and reset (also known as a triple pelvic osteotomy)and to wear some gorgeous cast for a couple of months and not be able to move (if the cast somehow could come in a nice Liberty print, I might consider it in the future).

Compression stockings. Tres chic, though not desirable bedroom attire.

I had a check-up back in April 2016 and everything felt as though it was running smoothly like a well oiled machine, though things have since started to deteriorate again (these injections are only temporary).

Today I woke up feeling like someone had stabbed me in the lower part of my spine and that a giant was trying to prise open my hips with his massive hands and tear a piece of me off for breakfast like a human version of a chicken drumstick. Every time I call in sick I feel guilty, I feel like a fraud, but I’m learning not to beat myself up about it anymore as resting and trying to get better is the best thing that you can do. The only time I have gotten out of bed today is twice once for a drink and secondly for the insistent postman who just wouldn’t stop knocking, Postie:”I was knocking for ages!”… me: “I’m in bed sick, look at me!”, Postie:”Oh, sorry”. I’m now starting to feel like Colin from ‘The Secret Garden’.

Like Shakira, these hips don’t lie (but they do fucking hurt).

What’s the point to this story? Well, I guess it’s me just reaching out to educate that although people might seem OK on the outside they might be crumbling (in my case, literally) on the inside. Maybe you know some people who cancel plans last minute and unawares to you are too embarrassed to say why (because it’s an ailment that they feel they shouldn’t have), or that people become reclusive and you think they’re being shitty people like Regina George. It’s really because people need time to heal mentally and physically, but if/ when they do reach out don’t give your opinion or think you can fix them because you can’t. Just listen, give them a hug and (if they aren’t on too many meds) maybe share a glass/ bottle of vino together.

I’d also like to say if there are any people reading this who are experiencing pain, whether that be mentally or physically DON’T GIVE UP! There is help out there, there are people who care and will support you, but you’ve got to believe in yourself and look after your own well-being. I got your back.

 

 

GIFS found via Tumblr Photographs my own Big thanks goes to my boyfriend, family and the friends who have supported me through this

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