In the early hours of Sunday 5 March I was admitted to Queens Medical Centre (QMC) in Nottingham for a flare up of back pain that had worsened. At this point, it had already lasted three weeks but I'd developed new symptoms and even my home supply of strong pain medication wasn't doing anything to diminish the pain. QMC were brilliant, they did all the right blood tests, did a new MRI of my spine, gave me the best care I've ever had (barring one rude doctor who assumed that because I was sitting up that I was well enough to go home), did all the right checks and took all the best precautions when I started collapsing, and ensured that the physiotherapists gave me crutches and did some occupational therapy checks so I'd be safe once I got home. The whole experience was a little scary at times as. One of the times that I collapsed I had to be given oxygen and a doctor had to be called, my blood sugar levels kept dropping really low at points - I think 3.1 was the lowest it got, and a patient opposite me took ill in the early hours one night and emergency measures had to be taken to save her which was terrifying to listen to. And it's always hard when you have to go into hospital on your own, away from your family and they can only visit once because you're so far away.
As far as the actual problems with my back, I was diagnosed in 2012 as having something called Syringomyelia. It's a cyst or syrinx in the spinal cord that can cause a variety of symptoms, many of which I experience. According to a variety of medical sites, it's apparently rather rare, although not untreatable. I was told by my consultant at my London hospital that the Syringomyelia wasn't causing any problems but that they were going to continue investigating to find out what was wrong, and they bluntly refuse to drain it (which can cause more problems if left). During my recent stay in hospital, it was made apparent to me that the doctors at QMC felt it was the syrinx that was causing problems - which certainly makes sense when I compare the symptoms it causes against my own. I've been mad at my consultant for years for lack of communication with me, and to know that I was diagnosed with something but told that it wasn't an issue despite all the problems it's causing me is heartbreaking. It's hindering my ability to progress with my life the way a regular 22 year old woman should be, and the impact of these flare ups extends across my academic, financial, and personal life.
And it's crushing me to feel like my consultant doesn't take me seriously, and thinks I can manage with these worsening flare ups and every day symptoms on my own.
Im not very well versed in rare conditions, nor do I know much about my own spinal condition. All I know is the impact it's having on my education, my friendships, relationships, employability, and my mental health. The anxiety of going to bed worrying about whether you'll be able to walk when you wake up even if you went to bed feeling fine the feeling low because you have to frequently cancel or just avoid making plans and can't go to your classes, the frustration of realising that you need assistance brushing your teeth and getting to the toilet because of being immobile/in too much pain. It can be absolutely devastating, especially at 22.
I'm so thankful to have such a wonderful support network. My family, my closest uni friends, the amazing women I did my NSPCC internship with, and my closest friends from home have given me so much strength and support. I would be truly lost without the support network I have and not for a second do I ever take any of them for granted. I was lucky enough in my last relationship to have someone that was so supportive and caring when it came to my back problems and the toll that it could often take on the relationship. While lots of other things may not have gone right, his support and fierce encouragement to get the medical help when I needed it is something that I will always be thankful to him for. More often than not I still think "what would he advise me to do?" to gauge what I should do when I'm in a medical pickle!
I don't really know what the future holds for me with regards to my spine. I still have high aspirations and I know the path I want to take with my career. I know the plans I have for my future, it's just a matter of making the adjustments now to make sure my back cooperates. But it doesn't mean that it's any less frustrating that it's been nearly 7 years of investigating and we're not really that much closer to finding out what to do next. I'm prepared for the worst but always hoping for the best. I don't want my syringomyelia to define me, but it is a significant part of my life at the moment.
