After gaining 9A* and 2A grades at GCSE and 4 A grades at A-level (including the joint highest score in the country for one of them), and having been a member of netball, hockey, football, swimming and athletics teams, I arrived at university in September 2004 to study Medicine, a healthy individual. All that changed when I became ill with a virus in my first term there and then BAM!
For the last 7 and a half years since that day, I have been bed-bound, unable to sit up and unable to talk. I have unbearably severe symptoms* at rest because of heart failure (diastolic dysfunction). Any slight exertion (even talking) causes my condition to rapidly deteriorate. I have to stay as still as possible so that I don’t have a cardiac arrest.
That would be enough to deal with on its own but I also have severe headaches that mean even a tiny movement of my head causes agony to shoot through it; dizziness/vertigo so great that it causes the room to spin; muscle pain and weakness especially in the arms and legs, meaning I’m not able to hold anything; insomnia – 2 hours broken sleep per 24hours if I’m lucky but I often go for months without any sleep at all; exhaustion; painful and swollen glands and lymph nodes; a constant low grade fever; poor digestion and absorption; agonising stomach pain; spine pain; muscle twitching and spasming; a tremor/intense vibration; severe noise sensitivity, chemical sensitivity, light sensitivity and movement sensitivity, which mean that if anyone comes into my room, it is agony for me and I rapidly deteriorate after just one minute of someone being present in my room, even if they are quiet… these are just a few of the symptoms!
I don’t want your pity. I want you to understand…and to read on to raise your awareness. This is severe Myalgic Encephalomyelitis (M.E.), which means inflammation of the brain and spinal cord [absurdly M.E. is also called Chronic Fatigue Syndrome (CFS)]. The only way I am able to write this is via my iPod Touch, a couple of sentences per day. A slow process but it’s the only way I can communicate.
My life involves just about managing to prop my head up enough to eat (eating is extremely difficult and I often don’t have enough breath or strength to keep chewing and the exertion of doing so gets me worse) and sliding onto the commode beside my bed. A nurse comes roughly once a month to give me a bedbath and I spend the rest of the month barely recovering enough so that I can have another one. All these “activities” cause my symptoms to get even more severe and I have to lie still in between them in order to be able to do them. My treats involve watching half an hour of television from my bed (though audio and visual stimuli are also exhausting and painful) and going on Twitter on my iPod whilst lying flat. I can sometimes manage a few tweets a day, but that takes a lot out of me too.
In 2009/2010 I raised enough money with my poetry book ‘Rainbows in my Eyes’ to have treatment with a top M.E. doctor in the U.S. However, although I have raised enough money in the Medical Fund Society to see him and get treatment, there is not enough for an air ambulance there and back (~£90,000 more). So I hope to continue to raise money with the poetry book. This is my only hope of getting any better from the unrelenting torture I live through everyday.
I so desperately long to get better: To be symptom-free. To be able to spend time and talk with my family and friends; I miss them so much. To be able to sit up and stand up and walk and run; I miss the sheer joy of running about everywhere. To see the sky and feel the wind on my skin. To be able to read books. To go to the cinema. To see the sea and walk barefoot on the sand. To not miss landmark family events; it broke my heart to miss my brother’s wedding. To hold cutlery. To wear clothes. To write. TO BE FREE!
[Written in November 2009. Updated in May 2012. Photo from 2008]
‘Why care about M.E.?’: http://www.jkrowbory.co.uk/2011/05/why-care-about-m-e-m-e-awareness-week-2011/ Please click on this link to understand the situation that M.E. patients face in this country and the medical abuse we encounter.
Reviews of my poetry book ‘Rainbows in my eyes’: http://www.jkrowbory.co.uk/2011/05/reviews/
“In conclusion, I think Jenny is holding her body together with sheer will power and determination. She is fighting for her life with all the strength she has and still hopes and believes that she will return to health.”
*Even at rest I have shortness of breath, my heart strains to pump (a constant 24/7 uncomfortable pound; feels like it’s beating wrongly/stiffly), my heart often misses beats, sometimes is fluttery. I experience both tachycardia & bradycardia (obviously not at the same time!), and both the pulse and force of pulse noticeably vary greatly and change very suddenly when lying still, constantly. With any slight physical exertion, my heart misses more beats, there’s increased chest pain/crushing pain in middle of chest, left arm pain and shortness of breath.