UGGHH TO HYPERMOBILITY!
Last week I had a lot of odd feelings and pains in my arm/shoulder. It felt really heavy, tingly, loose etc I’m pretty sure it has been slipping and been close to subluxing or has been subluxing.
When I woke up on Sunday morning I felt as though I couldn’t breathe as my pain was so intense. I assume I subluxed my shoulder during the night. The pain was far too much, it was more pain than I’ve had in my shoulder before as well as definite nerve pain.
As things usually resolve themselves I thought I would wait it out. However, my pain wouldn’t reduce, it looked a little odd and there was something that I just didn’t feel comfortable with.
Sunday night James and I went over to A&E (I must admit I went to the cinema first because if I had to deal with so much pain I was going to find some sort of enjoyment, I’d definitely recommend the Incredibles 2!).
A&E were actually pretty good, I was seen within 5 minutes by triage, sent straight for X-rays which happened very quickly however, they had to take quite a few as they weren’t too sure on what they were seeing but they concluded with it wasn’t out of place but it probably had been but none of us knew how, what, why, when, where.
I went back to the waiting room but because the X-ray was okay I had to wait quite a while to see someone. I really struggled with the wait, I was in so so so much pain, I felt overwhelmingly nauseous. I eventually saw an emergency nurse and honestly I felt like he was trying to brush me off but then he began to talk to me and I don’t think I could have left with a better outcome.
The nurse said that he was worried it’s currently too unstable so wants it in a sling to keep it in place. Before they put in me in a sling he wanted to see what sort of movement I had. I had a lot of movement he was fairly gentle moving my arm but it hurt like hell. When he was moving it we were all quite shocked when there was a loud pop it seriously hurt but I also had about 10-20 seconds of amazing relief!
They gave me a new sling which I love it is a fabric one, it has an extra pad a little like what you put in your car on a seat belt to stop it rubbing on your skin. It also goes around your waist for extra security and comfort. Sadly they couldn’t give me any other pain meds though as they don’t stock any like my current daily pain medication let alone anything more!
Whilst the nurse was looking at my shoulder he asked me a lot of questions about my hyper mobility specifically my shoulder and how regularly I believe it to be subluxing. There was a point in the conversation where I began to wonder if he didn’t believe me, he was acting odd and not at all like anyone I’ve spoken to in regards to my shoulder.
Then he said this… “Well why hasn’t anyone done anything or looked into it more? You shouldn’t have to live your life like this. That isn’t fair. I’m going to refer you to the trauma clinic because I think someone needs to have a look and listen to what’s going on. If they can’t do anything then I am sorry but it is worth an ask.”
My response to this? I CRIED. I really really cried. I had been in so much pain all day and in the waiting room that emotionally I was crying but physically I was too exhausted and too overwhelmed by pain to cry but these words from one nurse brought in the tears.
When you’re chronically ill/disabled you most likely visit many many medical professionals but it is rare to find someone that is hearing you. Let alone someone that hears despite you not saying a thing. I gave up asking questions about my shoulder(s), sometimes I give up telling people it’s not fair that I should have to live like this, day in day out.
However, on Sunday there was someone there ready to ask questions, to hear me and take a chance by giving me a referral to someone else. The odds are nothing will come of this but the fact that someone else (a medical professional) could see unfairness and pain in the situation means the world.
The nurse referred me to the Trauma Clinic who I see this coming Tuesday (24th July). They may not have much to say and they may not know what to do but at least we are trying, at least someone gave me the chance.
I have never dealt with a Trauma Clinic before so in theory they either send me home or they refer me onto someone else whoever, they feel is the most appropriate. Either way I will ensure to update you all.
For now though I am continuing to use my sling, I take my arm out at least once a day for some movement but the sling really helps control my pain. I sleep with what I can only describe as a pillow fort! However, I still seem able to roll onto my sides in the night and twice now I have some how managed to free my arm from my sling in the night…
as I said we have no idea how I have managed this!
Also bought another pillow which arrive today a V shaped pillow and so far I love it!
If you have any tips on dealing with partial dislocations and nerve pain then let me know!
I hope you’re all having as good a day as possible and I will catch you up again soon.
If you would like to keep a little better updated then you can follow me over on Instagram: @worldin_mywords as this is where I tend to post and update the most!
Have you read my previous blog post? ‘Regaining My Independence with the Alber E-Fix!’ if you missed it you can read it here.