Living with Multiple Complex Chronic Illnesses
It’s difficult to know where to begin with this, there is so much I could talk about and yet settling on one subject seems to be so difficult. So, I’m going to tell you about my life, about the ups and downs, and how I’ve managed so far. My name’s Alley and I’m 23 years old; and have a long list of physical chronic illnesses, and a few mental health issues as well. I’m going to list them for you now;
• Elhers-Danlos Syndrome Type 3
• Myalgic Encephalomyelitis
• Postural Orthostatic Tachycardia Syndrome
• Partial Paralysis below the waist
• Chronic Bladder Retention
• Non-Epileptic Seizure
• Cranial Cervical Instability
• Irritable Bowel Syndrome
• Complex Post Traumatic Stress Disorder
I didn’t add my autism to the list because for me, I don’t see it as a mental health condition or illness, it just means I see the world in a different way, and sometimes this can impact on how my other conditions affect me. For example, the sensory (light, sound, touch, smell etc.) sensitivity caused by my ME is exacerbated by my autism. However, my autism causes me to have many good qualities such as creativity, attention to detail, honesty, loyalty and observance. People with autism can be good at being non-judgemental, analytical and good with animals. I have written a more in-depth blog post about autism on my own blog, which I will link to at the bottom of this post.
I’ve had some health issues all my life (including some joints dislocating and abdominal pains,) but the main problems started for me after a horse riding accident I had when I was 17 years old. Before the accident I was an A grade student, who was working with horses and hoping to go far in the equine world. I was fit and relatively healthy, I had a decent group of friends and a good life.
Since the accident, things have been up and down. Long stays in hospitals have become the norm, both for physical and mental health problems, and although my mental health is much better controlled than it used to be, my physical health is on the decline.
I’ve had feeding tubes and still have severe difficulties with eating and nutrition due to my gastroparesis. Each mealcauses severe pain and nausea, and whilst I’m maintaining a healthy weight, getting nutrition into my body is one of the most difficult and miserable tasks of the day. I get through by eating fairly plain food like scrambled eggs, and drinking fruit juice to keep my sugars up. But if I even drink that too fast the nausea is unbearable. However, I’m so grateful that my feeding tubes saved my life, they brought me up to a decent weight from being underweight and very poorly (I’m still very poorly but nowhere near as bad as I was just before I got the tube.) I’m grateful for being able to manage to keep weight on without the tube, but sometimes I miss it, due to the fact I didn’t have to experience such terrible symptoms whenever I was fed because the tube bypassed my stomach.
I have a relatively severe case of Myalgic Encephalomyelitis, which is a neurological condition that affects my brain and spinal cord, causing severe fatigue, sleep problems, cognitive issues, dizziness and fainting, muscle pain and weakness, digestive symptoms, sensory sensitivity, flu-like symptoms, post-exertional malaise and so much more. In my severe case it causes seizures and partial paralysis too. I have had ME for almost 6 years, it was triggered by my accident and I’ve had periods of being completely bedbound for months on end. Luckily now I’m able to sit in my wheelchair for a few hours a day, a couple of times a week. I sometimes also spend time laid on my sofa when well enough, so I can maybe watch a little television. ME is such a difficult thing to cope with, especially as there’s no cure and doctors often say ‘there’s nothing more we can do for you.’ However, I’ve met some amazing friends through having ME and it’s taught me a lot about patience and perseverance.
My other main condition is Elhers-Danlos Syndrome, Hypermobility Type, which is a connective tissue disorder where collagen is not produced correctly in the body. It causes joint pain and dislocations, fatigue, soft skin which can bruise easily, digestive problems, and so much more. Gastroparesis and Postural Orthostatic Tachycardia Syndrome (increased heart rate when changing position from lying to sitting or sitting to standing) are both comorbidities of hEDS. My diagnosis was a very special moment for me as it explained all the problems I had as a child. Since my diagnosis I’ve been welcomed into the chronic illness community with open arms, and as EDS is a rare condition, it’s great to meet people who also go through the same struggles as me.
So, how do I cope with all this pain and illness? Well I love animals, they make up a huge part of my life and although I’ve had to downsize my numbers of animals due to poor health, I still have 4 cats, 4 rats and 2 hamsters left. The cats are called Bagheera, Winnie, Boots and Toothless; the rats are called Eeyore, Bear, Velvet and Suede; and the hamsters are called Ariana and Walnut. The cats especially help me through the long painful nights, and Bagheera can detect when I’m going to have a seizure and alerts me, stays with me through the fit, and then claws me to help me come around. It’s amazing what animals can do and how much of an impact they have on both physical and mental wellbeing. I also love graphic design and crafting with polymer clay. These hobbies are a distraction from the everyday grind, and really help me to relax and think about something other than medical things.
Bravery bottles has helped me too, I’ve been making bracelets (when my hands allow me to) to sell and raise money for all the amazing work Katie Fant does. Keeping track of my acts of bravery with beads has helped me realise just how much I get through each day and how determined I am to keep going despite the circumstances I’m in. Katie has become a great friend to me and the recent ‘design a bag’ competition has been great to participate in. Thank you so much for letting me hijack your blog Katie, and I hope you’ll return the favour by writing for Alley’s Adventures!