I’m back!!

Hello lovely readers! I’ve not blogged in about.. a year? (Probably longer) and I’m really really sorry…

I’ve been incredibly busy.

I actually got that PhD place I applied for – I know, I can hardly believe it! It’s a fantastic job, and I do love it, so I’ve been working incredibly hard ever since I started in Jan 2014.

I’ll admit, I’ve had to give up a lot of my hobbies in order to be able to pace sensibly and unfortunately blogging was one of the ones to go. When I started my PhD I was working alongside another researcher unfortunately they were unable to continue with the course and had to leave. This meant there was a significant portion of time where I was working alone in trying to fulfil both roles which was very stressful and highly exhausting.

Thankfully now I have a new co-researcher is very hard-working and also pretty awesome so work is once again actually quite enjoyable.

Part of the reason I’ve decided to start blogging again is because I’ve got surgery upcoming in about two weeks.
The story goes as follows…

The initial injury

In January 2014 I was putting on a coat and my shoulder slipped slightly out of joint, this is what is known as a subluxation – it wasn’t quite a full dislocation. I know this because I was able to put my shoulder back in by pushing and shrugging.
Me, being the stubborn sod that I am put the shoulder back into joint and got on with my day. I don’t actually remember it hurting very much for about an hour afterwards.

That night it was very very painful but I know what it’s like to treat soft tissue injuries so I didn’t bother going to the doctors or the emergency room. About a week later I was having a rucksack fitted and had scheduled a bra fitting and I caught sight of myself in the full-length mirror.

My shoulder was a slightly unusual colour and didn’t look very shoulder shaped, it was a bit greeny-yellow and slumped white forwards and about an inch down. I decided I needed to get this thing to because is very painful and definitely didn’t look right side called up for a doctors appointment and a week after the original injury I got to see a GP.

Finally relenting and seeking help.

My GP was really awesome. She decided that she didn’t want to relocate my joint because she wasn’t equipped to, however she did to try and hunt down somebody who would treat me. She called rheumatology, the fracture clinic and some other hospital departments and all of the refused to treat me.

She called me up about three hours after my appointment telling me to go to A&E as soon as I possibly could in order to ensure prompt treatment as there was no other pathway for me to be treated through.

I went into A&E and was triaged fairly promptly, I had an x-ray and a fairly thorough investigation from the nurses and was put in a sling and sent home to return the next day for fracture clinic appointment. (I felt this is very ironic since they had already refused to treat me once that day).

So the next day was my birthday, I spent my 25th birthday in the fracture clinic. A doctor saw me, pulled my shoulder about a lot and made it very painful, told me off for not coming in straight-away and then told me that there was nothing they could do and I need to be referred to physiotherapy. They did mention that if physio didn’t work to fix the problem quickly, I may require some surgery.

I saw the fracture clinic physio that day and he told me to keep my sling on to prevent further injury at least while travelling.

It took me a few weeks to get a referral for physiotherapy at the shoulder unit, my new physio was utterly fantastic she really understood how difficult it can be to do exercise while in chronic pain and really understood fibromyalgia too. We spent the first few months doing pain management exercises, and focussed on strengthening for the surgery that the Fracture clinic had suggested may happen in my initial consult.

When I returned to the fracture clinic in approx June, my shoulder had re-subluxed in my sleep a few times. The fracture clinic was reasonably happy that the physio was working to some extent however by this time my physiotherapist to discharge me under the assumption that I would be referred for surgery fairly quickly. The surgery she thought I’d have is called a capsule (or capsular) shift. It involves tightening up ligaments. I explained that I’d been discharged, and the Dr. looked at me with a blank face, and told me to keep doing the exercises myself.

The fracture clinic were not particularly helpful to be perfectly honest, there was an awful lot to go away and wait, and we’ll see what happens in the long-term. As a result of this I have repeated subluxations in a lot of pain. I’ve also gained a lot of weight from the stress of it and it started have an impact on the rest of my body.

MRI Arthrogram – needle phobia disclaimer.

Finally I managed to get a referral for an MRI arthrogram which was one of the most unpleasant experiences of my life so far. The appointment was early October 2014. Consider this your needle-phobia warning!!!


The beautiful bruise from my arthrogram – maybe 2 days after?

An MRI arthrogram is basically where they inject contrast agent into your joints and it fills up the cracks or damage in your cartilage and bones. It involves being x-rayed while they inject the liquid into your joints, and is often done under local anesthetic.

There was however an interesting thing that happened here…

It turns out I do respond to local anaesthetics so I could feel the entire thing. If I wasn’t afraid of needles before a bloody would be now!!! Apparently it’s not uncommon for people with HMS to not respond to local anaesthetics. (Which I did tell them before they did it – so they were prepared when I almost jumped off the damned table.)

The nurse and radiologist were awesome and kept talking to me all the way through and managed to prevent me having a panic attack, however the consultant wasn’t nearly so useful and kept making comments about how I wasn’t relaxed enough to make the procedure easy for them.

The actual MRI afterwards was completely fine, it took a long time because the blankets kept knocking one of the safety catches in cancelling the scan, but after being prodded with needles and held down on the consultation bed, being stuck in a cold, noisy, small tube was absolutely fine(!).

I got a pretty neat bruise afterwards though!

MRI Results and further investigation.

So the MRI showed precisely nothing, which I wasn’t surprised by because I figured that the cartilage wasn’t actually damaged. The next investigation I had was the nerve conduction study which involves a electrical impulses being shot him on your nerves and the speed with which they travel is recorded. Basically a nurse electrocutes you – and claims it has a medical purpose!

They were investigating for cubital tunnel syndrome, which I’m told is like carpal tunnel syndrome but in a different bit of your arm. These investigations came back negative as well. These tests were December 2014.


So the anniversary of the original injury came and went, I had a fracture clinic appointment in February and I had finally had enough. I was exhausted tired, and felt totally abandoned by the system. I was in a lot of pain, I had no course of treatment and no proper painkillers because nobody would diagnose what was wrong. I nearly ended up crying in the consultation because I was so sick and tired of being told to go away and wait.

The annoying thing is I’ve never seen the same Dr. more than once at the fracture clinic, is always trainees and they never realize how complex my condition is. Every single one of them asked me to do the Beighton criteria, and they don’t appear to realize just how painful it is to do some of those things. In fact many of them I can no longer do purely because I have been injured so many times. I’m one of the least bendy “Bendy” people I know.

On this occasion the poor trainee Dr. gave into my demands and suggested an arthroscopy and potentially some ligament repair. He never mentioned that this is actually a surgery.

I was referred to the pre-surgery unit (in March) for an assessment, I found that it was on my records that they expected to do an operation called capsule release. This is actually the wrong surgery anyway because this would loosen my shoulder, not tighten it as required.

The surgery I’m actually scheduled for is called a capsular shift for Multidirectional shoulder instability, where all the tendons are tightened up within the shoulder. The expected rehab period for this surgery is about 20 weeks, with 3 to 6 weeks of that with my arm being completely immobilized against my body.

Denial and anxiety.

I have to admit I didn’t realize quite how scared I was until about two weeks ago.

I started to think about the things I can’t do with one hand and I’ve realized I’m going to be very limited. Reading books will be difficult as I won’t be able to of the hold them and turn pages at the same time, I don’t know how I’m going to wear some of my clothes, or wash my hair or even got my own shoes.

Thankfully I have a partner who is understanding and patient and hopefully will be okay, but that doesn’t stop my anxiety prone brain worrying about it.

I’m really quite scared, so to help express my anxiety and deal with it I’ve decided to start blogging again, with a little bit of advice from a good friend.

I’m actually testing out using DragonDictate in order to be able to blog without typing, because typing will be very difficult with just my right hand… So if you see any spelling errors or sentences that make absolutely no sense – you can either blame the software on my strong Bristolian accent.

I may blog a few more times before the surgery, which is on 30th June just to keep you up-to-date with how things are going. I have to admit I’m not doing an awful lot that is particularly interesting lately because I’m mostly trying to get ahead of work in case I get signed up for a sizeable period of time.

Hopefully even after a year of not blogging, perhaps a few people will still read this.

Wish me luck!! It’s only taken 18 months to actually get treatment!



Grovelly not posting post and a lot of news!

Grovel grovel grovel…
If you had as much going on as I did in the past few weeks, you’d forget where you’d left your blogging heads too!

  1.  I got a job! – Counting people and room use at my old university. It’s only 4 hours a day, but requires me to walk 11-13km per day.
  2. My knee is, although still sore, getting better. My physio seems pretty good (and is rather easy on the eye!) I’ll admit since starting the counting job, I’ve not been doing as much physio as I should. Must work harder.
  3. One week into having my new job, I got an email offering me the PhD I have been pining after. So on the 2nd of January, I will be re-enrolling at my uni as a PhD student, demonstrating in labs. I’m there for 5 years, but am so excited about the possibility of it all that I can barely contain it. They pay my tuition fees, and pay me for demonstrating. It works out as roughly minimum wage, but the benefits programmes they have are amazing (they even have their own physio, who I may have to sweet talk!). (Clearly this means I’m leaving my current job after less than a month, but they’re quite understanding)
  4. Our flat is now almost finished… So far we have had the following things done/fixed
  • Bath replaced due to crack in wall.
  • Remaining bathroom suite replaced to match.
  • Lino glued down onto kitchen floor.
  • Bath edges sealed with clever plastic screening.
  • Bathroom painting.
  • Shower replaced (and switch relocated to outside).
  • Resulting holes plastering up.
  • Resulting plaster painted over.
  • Window keys replaced.
  • Shelf in kitchen fixed.
  • Boiler pilot light modified to allow easier lighting (finally done today, which is good since it was flipping cold before!!)
  • Carpet dividers re-screwed to the floor.
  • Fridge light replaced.
  • Kitchen blind fixed.
  • Upholstery laundered (courtesy of our landlady!)
  • Carpets professionally cleaned to kill all the little beetles that were living there from the previous tenants (EW!)

I think you’ll agree that our landlord and landlady are firstly possibly the most excellent people in the whole world, but secondly, they are very good at their jobs. All of this has been done by qualified trades or the landlord himself, and done to a really high quality. I’ll upload a photo of the bathroom and stuff now it’s finished once it’s all cleaned and organised after the carpet cleaning escapade. 

I think that’s about it for now, but I’ve got a meeting about the PhD on Monday, so will probably blog even more then and be all excited. We’ve also got a load of draught proofing stuff coming (curtains, thermal liners, foam window seals etc) and I’m thinking of making draught excluders for some of our doors, so that’ll be my first DIY blog!

There’s also a few things still to do:

  • Boiler timer needs fixing (as it’s too expensive to leave running, but too cold to get up in the morning to turn it on!)
  • Curtain poles need fixing to the wall (once they arrive). We’ve only bought one window’s worth, but it’s cost us about £130! We have big windows.

In the meantime, wrap up warm and stay safe!




Hot water as pain relief.

Since we moved into our new flat, I have been unable to have a bath. I can still have very cramped showers, or wash at the sink, but there’s a crack in the bath, and we would like it if we didn’t flood the shop downstairs.
As such, my usual hot water therapy has stopped. I use it to help my back and shoulders relax, as the pain and lack of strength in my tendons causes my major muscles to tense and basically never relax. The muscles in my shoulders end up so hard from tension, it gets pretty difficult to tell the difference between them and bone.
But today, we are getting a whole bath suite! I love our landlords! I can’t wait to have a bath and make myself relax. I have some cheap, good bath products that help me relax, which I will blog about (probably after the bath).
As a person with erratically sensitive skin, I often develop sudden intolerances to things I have always been fine with before. I tend to be very brand loyal, so long as I don’t develop these reactions.
So, upcoming girly blog! Consider yourselves warned!

Gabapentin (Neurontin)

For Shaun over at Praying for One Day. Thought you’d appreciate a well researched piece on Gaba. 🙂

Elle and the Auto Gnome

The author is not medically trained, and not advising one way or the other on this medication.

It is very easy to end up with only a part of the information available when trying to find out about a medication. Without more information from more than one viewpoint we have far less of a secure foundation to make a decision which is ultimately going to affect our health. I am not writing this to sway you one way or the other. I would always want any patient to make-up their own mind. That is our moral and legal right to do so.

Any medication has pros and cons. The key is weighing up the odds and deciding what works for our particular body with our particular condition(s), symptoms, medical history and so on. This is something for you to discuss with your doctor / medical team and a pharmacist, and not…

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Do Not Lose Your Sense of Humor!!!!


Do Not Lose Your Sense of Humor!!!!

Not everyone is going to understand an invisible illness, especially chronic pain. People have judged me most of my life because of this invisible illness and it used to make me so depressed. I look fine, I’m in good shape, I have a college degree, and on the outside I appear to be the happiest person you will meet. Chronic pain sucks. There is no way to sugar coat it. But, do NOT allow anyone to make you feel less of a person because of your illness. Ignorance is everywhere. We cannot make people believe that we have chronic pain. So what? If someone doesn’t believe you then you are better off without them. I have lost a lot of friends due to chronic pain and maybe it is a sad thing but I am actually at peace with that now. I do not need anyone to believe me. I…

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30 Things About My Invisible Illness You May Not Know

I am planning to add my own answers to these questions, but this blog illustrates the feeling of living with a complex and chronic condition.

Life Through the Eyes of a "Cat"

Invisible Illness Awareness Week

Even when we have known a person for decades there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.

You never know what you may have in common with others around you.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ehlers-Danlos Syndrome, Chiari Malformation, Syringomyelia

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: I was a small child

4. The biggest adjustment I’ve had to make is: Realizing that I am always going to have to struggle with everyday tasks…

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