Elise’s volunteer story update

Blog » Hip Dysplasia (DDH) » Volunteers Stories

I have been on very long health battle since I last wrote. Unfortunately, due to increased hip pain, I was unable to sit my A-Levels last year; but my school were great and arranged for me to re-sit them this year.  

With the increased hip pain, my gait dramatically changed – my right knee kept giving way every time I stepped on it; so, after an appointment with my hip surgeon who was unsure what was happening, I was referred to a neurologist who diagnosed me with a functional gait disorder. Little did I know this was the start of something bigger. With this new diagnosis, I started an intensive 6- week physio programme to normalise my gait, which thankfully did improve and I was able to go on a cruise holiday with my parents for a much-needed break after my year of surgeries, hospital appointments and endless physio. There was a lot of walking, which really increased my hip pain, but it was worth it to see all the incredible places we went to. On the holiday with my crutches, my gait improved more, and a few weeks after we were home, I was fully off the crutches again.

In August, I was now ready to return to school after 2 years off. I was understandably very anxious about how I would manage with the residual hip pain and fatigue, and fitting in to a new year group, but I was very lucky that I was made to feel very welcome and I have made a few new friends for life. I was worried about people finding out about what had happened to me; I was having a very hard time trying to hide the pain I was in, and was very self-conscious about how I walked and having to use the lift, and I felt like I needed to explain myself. So, I decided that I would share my testimony and how my health has impacted my faith during SU, and it felt like a weight off my chest now that everyone knew. Sharing this made me feel less self-conscious using my crutches on bad pain days, or using my orthopaedic cushion on the very uncomfortable school chairs! I found sitting on the chairs very painful even with the cushion, but my teachers were great and they let me go for a walk during class if I needed to. My friends were all really supportive and offered to carry my bag for me when I was struggling which I really appreciated. I did have a few incidents where my hip locked up and I could not move and had to be rescued – which I found embarrassing, but thankfully everyone was really understanding.

A few months into the school term, my walking had improved a lot. I was still in pain, but I was coping with it, and I made the mistake of really pushing myself. I think I was struggling to accept my limitations and was feeling quite left out at how far everyone else could walk, and I was really overdoing it and walking several miles a day before and after school. I think somewhere inside me I just wanted to forget about what had happened to me and I was in denial about my disability. Even though it was agony, I was just so proud that I could walk so far and just kept pushing myself.

In March, me and my friends were outside taking photos and I felt something lock up in my hip. Next thing I knew I was in severe pain, and I could not straighten my knee or move my leg at all. Moving even slightly brought tears to my eyes, so I asked to be sent home and got an emergency physio appointment for the next morning. The physio worked with me for an hour and even he could not move my leg at all. I came back the next morning and after another hour with no movement, we ended up going to A&E. I was admitted due to the pain I was in, and was given morphine and was then transferred to the orthopaedic hospital for a week. After a week of being given all sorts of painkillers, muscle relaxants and being attached to a CPM machine, I got to see my surgeon who discharged me, with an urgent referral to a neurologist.

I saw a neurologist who diagnosed me with a condition called functional dystonia which is part of a condition called FND (Functional Neurological Disorder). I was now waiting for admission to a neurology ward. However, before this I randomly developed a tremor in my head which was constant, which then led to my first seizure which was absolutely terrifying. In June, I was admitted to the neurology ward, and the first night, I declined rapidly and had a 3 -hour long seizure. I was now having between 6–7-hour long seizures a day. I was so relieved when I was finally allowed home. The only good that came out of the stay was that with neurophysio I managed to come off the crutches again, but I was now left to manage with unpredictable seizures.

My seizures did decrease for a while after leaving, but I was still having at least one a day. During this time, I really got into reading, I was reading up to a book a day! I have found that reading is a form of escapism for me and a great distraction from my symptoms. Having unpredictable symptoms and seizures, I started wearing a sunflower lanyard in public, which finally led to me accepting my disability, and being comfortable with it and happy within myself.

Unfortunately, my health has declined again, I have also received another diagnosis of Ehlers-Danlos syndrome (hEDS), which finally ties all my symptoms over the years together, and could explain my residual hip pain. I am now currently using a wheelchair due to the fainting, but I am so grateful for it as it has given me freedom to get out and about. I am currently waiting for urgent cardiology and gastroenterology appointments to investigate possible co-morbid conditions due to my EDS.

I do not know what the future holds for me; but my faith, family and friends have got me through this far, and I will keep fighting for my health, advocating for myself, and raising awareness of these conditions. There is still a lot of fight in me, and I will keep holding on that there is hope for healing.