Firstly, thank you for your patience with my absence. Secondly, blogging for me is about being honest. Sharing with you how things like music make me feel, experience and my general thoughts/opinions. Therefore this post is me being as honest as I can about why I’ve been distant from blogging and reviewing for so long. And to explain what’s been going on since December 2017.
So in December 2017 I plucked up the courage to go to the doctors, to try and get them to understand what I was dealing with. At 22 years old I had been living every day for the last 9 years with chronic pain in my knees. A chronic pain which had spread to my left shoulder, hips, wrists and fingers, ankles and toes, elbows and lower back. I am suffering with joint movement, where often my knee cap wouldn’t be in the right place, and could be visibly seen. My left arm would be much longer in appearance as my shoulder would partially dislocate. My hips would move around often resulting in serve pain. And finally they listened and referred me to a Rheumatologist!!
Along came the appointment in January 2018, where I was asked questions that if it wasn’t a doctor I would usually lie about. Had to do things like touch my toes, stretch my arms out and show how close my thumb can get to my wrist. Then the Rheumatologist confirmed I had scored 8/9 on the Beighton Score, I had severe Hypermobility and would need an Echocardiogram, MRI of my lower spine and pelvis, blood test and would be referred to a specialist Physiotherapist.
In February the results of my blood test where back. Low vitamin D levels and Coeliac Disease. That was the biggest shock, as I didn’t know it was being tested as I only knew about my Thyroid being tested. This meant a Gastroscopy was now needed and I must live a Gluten Free life. But the best news from that was no sign of any arthritis kicking in yet (as I am prone to getting it at an early age). Buzzing! Then I had my MRI & Echocardiogram done.
MRI results weren’t the best as they showed problems with discs in my spine, meaning I have things to look out for which could mean an A&E trip. But on the flip side my pelvis was okay, which was great news!
So April lead to another doctor’s trip as now my right foot was turning in. With anticipation I explained what was going on, and after an examination was referred again to another specialist who then referred me to Podiatry.
Roll on to May and I’ve had the Gastroscopy test (sedation is a very strange experience I must admit), and the results are back confirming I must live a Gluten Free diet due to having Coeliac Disease – 100% confirmed. It is great to have confirmation that I am doing the right thing by eating Gluten Free, but even better results came back for my Echocardiogram! The results showed no problems with my heart, so at least my heart is behaving!
Physiotherapy sessions are going well with each one so far focusing on different areas of my body. There are talks of moving from exercises to physical activities to try and feel more active and like my old gym going self before the pain and dislocations got too much.
Podiatry have told me no more Converse (but I can’t part ways yet so still wear them but not as much) and high backed supportive shoes are a must! I’m still looking for a pair that I like and can wear at work as I work full time in an office and I need the support as I can often be on my feet for long periods due to being a trainer. More so I need the high back and support because I have to wear an insole in my right shoe, which makes me look wonkier than normal which is a little bit funny lmao.
With all this I have had to come to terms with a lot of things the last few months however I am now in a good place. With all these tests now nicely finished, and only regular trips to physiotherapy and podiatry, I am getting back into my routine. I am doing yoga, and looking to start cycling again (as advised by my physiotherapist) and getting back into writing. Which has all contributed to me being ready to get back to what I love; blogging, reviewing and sharing my thoughts/opinions with you all. I’m looking at music and adventure posts like before, but now looking at food and hypermobility posts too! I have found my silver lining…
So… I am 23 years old living life with Chronic Pain, Severe Hypermobility Syndrome and Coeliac Disease. I am learning to be open about things, to be realistic and to let go of feeling ashamed that I will not be able to do everything without help – when I said learning I definitely mean it with that bit as I am so stubborn aha. As well as learning to listen to my body and trying very hard to not see my conditions as massive negatives.
My advice to anyone regardless of age or how you feel about what you’re going through, make the doctors listen! Listen to what your body is telling you. It knows you better than you know you!
If you have any questions please feel free to get in touch in the usual means!
Thank you all again for your kindness during this time of disappearance xo
Music n What Not 