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Severe ME and me – my story

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.

Jenny and Harry

For the last 12 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 that 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 spine pain; stomach pain; muscle twitching and spasming; difficulty swallowing and breathing; 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 wrongly sometimes called Chronic Fatigue Syndrome (CFS)]. The only way I am able to write this is via the touch screen of my iPhone by jabbing a couple of sentences per day with my thumb. It’s 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. 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. In recent years I have been too ill to even have a nurse come into my room to give me a bedbath. It’s an horrific choice between being either alive but dirty OR dead but clean.

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.

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. 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 be present at landmark family events (it broke my heart to miss my brother’s wedding). To hold cutlery. To wear clothes. To write as much as I long to, without the restraint of only being able to manage a few sentences per day. TO BE FREE!

[Written in November 2009. Updated in 2015. Photo from 2008]

[UPDATE: In May 2015, after genetic testing, Jenny was diagnosed with Vascular Ehlers-Danlos Syndrome. This is on top of her diagnosis of very severe M.E.]

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‘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.

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About me:

My greatest wishes on my 29th birthday (+ health update): http://www.jkrowbory.co.uk/2015/04/my-greatest-wishes-on-my-29th-birthday/

Ten years: http://www.jkrowbory.co.uk/2014/10/ten-years/ (My fundraising attempt to raise money for M.E. Research UK with #PoundsForPoems)

My Favourite Things: http://www.jkrowbory.co.uk/2013/11/my-favourite-things/

When it hasn’t been your day, your week, your month or even your 8 years:
http://www.jkrowbory.co.uk/2012/12/8-years/

My Buzzfeed listicles: http://www.buzzfeed.com/stroopwaffle