[NB: This blog post was written in 2018]
Let me tell you a bit about my parents. They have worked relentlessly hard to care for me so incredibly well for over 13 years since I became seriously ill during my first term at university. They have given up everything for me but frequently tell me that looking after me is their honour and privilege; they never make me feel like a burden.
They go above and beyond to look after me and my needs. There are the basic care needs (which are no small thing, especially as both my parents are in their sixties now and it’s hard work, especially as Mum has a bad back): emptying the commode, cooking food that I am actually able to swallow (lots of homemade soup; Dad makes amazing soup), supplying me with daily essentials and bringing them into my room as quietly and quickly as possible (I deteriorate the longer someone is present in my room) etc. but also things like doing all my admin, dealing with (awful) doctors, replying to any social messages sent to me (I sometimes am able to reply to people on social media but not often or consistently and only a with a very short message). They also have to endure watching me deal with acute, ceaseless suffering day-in-day-out, and daily life-threatening situations.
I think the worst possible thing for a parent is to see their child suffer, and especially when the suffering is so intense and for so long. They have done everything they can to fix it, seen the best doctors, and they must feel completely powerless because they can’t stop my suffering. The constant grief and loss must be overwhelming for them. Nevertheless, they have helped me to achieve my crazy ideas in my multiple fundraising efforts for research into Myalgic Encephalomyelitis and Vascular Ehlers-Danlos Syndrome. I wouldn’t have been able to do this without their physical help setting things up and organising the things that I’m unable to.
In 2013, they sold their house in Cleethorpes and moved all the way across the country so that we could live near who we thought at the time was the best doctor in the UK for severe Myalgic Encephalomyelitis (this was before I was diagnosed with Vascular Ehlers-Danlos Syndrome, a genetic life-threatening illness, a rare form of Ehlers-Danlos Syndrome). We moved house again in February this year because the landlord needed his house back!
Any sound or noise for me is agony and causes acute physical distress and deterioration, so my parents spend their lives staying still and tiptoeing around the house when they have to move to use the bathroom or prepare food/drink, and speaking in whispers, so that they don’t make me be in agony and get worse. When moving to this house in February, they spent tens of thousands of pounds (of money they don’t have) trying to make my room soundproof. Soundproofing would have allowed them to try to regain a bit of normality and sanity in their lives (as well as protecting me from noise) because they would have been able to move freely and have family come to visit. Unfortunately the soundproofing didn’t work at all; the builders let us down big time. When roadworks with a pneumatic drill popped up outside our new house days after we arrived, and would be there for weeks, they temporarily moved me to a rental property to get me away from the noise of it, despite the cost. They’re amazing.
Due to even small scents/smells affecting me badly and making it hard for me to breathe, my parents make sure not to use perfume, deodorant, scented soaps and shampoo. They make sure not to use air fresheners and chemical cleaning products in the house and just use natural ways of cleaning. All these things they do and sacrifice for me and do so without complaint. No outside carer is willing to sacrifice any of these things (scented shampoo, soap, deodorant etc) and no outside carer is as quiet as I need it to be and that my parents are for me.
My parents also sacrifice having any family or friends come to visit us at our house because of the noise that would bring. They miss out on attending family gatherings and events as a couple because one of them always has to stay behind to look after me. They miss out on seeing their sons and grandsons as a couple, and not nearly as frequently as they want to because of looking after me. This is a huge loss for them and the source of much grief. They also lose contact or closeness with friends because it’s hard to maintain friendships with all the challenges they face and not being able to have people visit the house or go anywhere together as a couple. They never make me feel bad or guilty about any of this.
These last five months have been extra horrific and exhausting for them (and me). On top of the ambulance journeys for the house moves, which have been physically devastating for me and I nearly died, they’ve had to watch me suffer with a new scary symptom since the end of December. My body is too fragile and my heart too unstable to be moved, even in an ambulance again, so they have been searching and phoning people every day to try to find a doctor/consultant who is willing to help with this drastically life-altering symptom, trying to find someone who understands (and has actually heard of it before!) and would be willing to bring the necessary equipment to the house to do a transcranial doppler ultrasound to get proof of what’s happening to the blood inside my head and neck. Hospital is out of the question in this state (the noise, light, movement and presence of other people in the same room as me would kill me) and far too dangerous for me (often doctors have never heard of either Vascular Ehlers-Danlos Syndrome or Myalgic Encephalomyelitis, and when doctors don’t know about something and have never heard of symptoms like I’m experiencing, they get hostile and suspicious; you can easily end up being sent to a psychiatric ward through their incompetence and ignorance). For over five months my Mum has been searching for help but hasn’t found anyone with the necessary specialism or even someone who is open-minded in dealing with something that they haven’t heard of before (it’s very rare) with a willingness to help. No doctor seems to understand how urgent it is. It’s looking like that until I get to the stage of having a stroke from this new symptom, we’re not going to find someone who believes me. People will help then but not until then. My parents have become increasingly desperate and it just takes up the whole of their lives. They’re so stressed, worried for me and beyond exhausted but they have no choice but to carry on, day after gruelling day.
It has taken me a very long time to write this, tapping out a couple of sentences each day with my thumb on the screen of my phone. I just wanted to be able to say a big thank you to my parents. I am convinced that I won the parent lottery and that nobody could look after me better than they do. I also know that other people don’t realise what they go through and sometimes you have to spell things out to get people to understand. I just want my parents to be happy; I hate being the cause of their misery. I wish that I could be the one looking after them at this stage of their life. Nobody is there to look after them. I love them so much and they deserve so much better than this. They are superstars.
What is Myalgic Encephalomyelitis (M.E.)?
This is when a virus or enterovirus (or an as-yet-undiscovered retrovirus) causes:
• inflammation of the brain, spinal cord and neurons
• immune system deficiency and dysfunction
• mitochondrial malfunction (the body’s energy is manufactured in the mitochondria), which leads to muscle failure (including heart failure), and heavy exhaustion
• damage to and dysfunction of the heart
• dysfunction of the digestive system, including poor absorption
• extreme sensitivity to noise, light and movement
The hallmark of Myalgic Encephalomyelitis is deterioration upon any slight activity/exertion/movement. Gradually trying to increase your activity can cause permanent damage. The severity of the disease varies greatly. Unfortunately, I have a severe case and am bed-bound and unable to speak. I struggle to breathe and swallow. My heart is so unstable and my condition so fragile that my body cannot be moved.
What is Vascular Ehlers-Danlos Syndrome (vEDS)?
It is a mutation of the gene COL3A1. This mutation alters the structure, production and processing of a protein in the body called collagen. A significant amount of the body is made up of collagen; it provides structure and holds our bodies together. This is why having faulty collagen is such a big problem and why my body is falling apart in so many ways. As you get older, the condition deteriorates. This is why it is getting increasingly difficult for me to breathe and swallow (dysphagia), why I have craniocervical instability, why my eyesight is worsening and why I have faulty heart valves.
The vascular type of Ehlers-Danlos Syndrome, which is what I have, is life-threatening and the majority of people with vEDS don’t live beyond their forties. This is because the blood vessels and hollow organs in a person with vEDS are fragile and prone to spontaneous rupture, due to the defective and weakened collagen.
It is important that paramedics and doctors be educated about vEDS so that in an event of a rupture, patients be dealt with correctly and quickly, which is key to our survival. For example, aortic dissection is pretty common among vEDS patients but it can easily be mistaken for a heart attack so it’s essential that awareness amongst the medical profession be raised.