Jenny’s health continues to deteriorate. As most of you know, she is bed-bound and unable to sit up. Symptoms of cardiac insufficiency are present at rest and discomfort is increased with any slight physical activity. She is lucky if she manages to wash once a week and it is very difficult for her to talk and eating is also very difficult for her (and the exertion of doing so gets her worse).
People ask how Jenny is. The best way I can answer that is listing her main symptoms:
– Even at rest she has shortness of breath, her heart strains to pump (a constant 24/7 uncomfortable pounding; feels like it’s beating wrongly/stiffly)
– Stabbing chest pain, left arm pain
– Heart often misses beats, sometimes is fluttery/trickly
– She experiences both tachycardia & bradycardia (obviously not at the same time!)
– Swollen hands, especially at the end of the day
– All the above symptoms increase with any slight physical exertion. Her heart misses more beats, increased chest pain/crushing pain in middle of chest, left arm pain and shortness of breath.
– Insomnia: she gets approx 2 hours broken sleep per 24hours
– Low grade fever
– Sore throat
– Low blood pressure.
– Chronic constipation
– Exhaustion and muscle pain
– Severe headaches (hurts to move her head)
– Painful lymph nodes/glands in neck – sometimes swollen
– Muscle spasms/twitches/tremor
– Noise and light sensitivity
After moving to Norwich, Jenny has not had good experiences with GPs. The first two she tried were rude, bordering on abusive, and didn’t believe in M.E. as a biomedical condition. The third one currently seems to be ignoring her, despite her telling him of the worsening situation. All she wants is for them to help her with her increasingly restricted capabilities.
Jenny has been on Dr Chia’s Equilibrant (Oxymatrine) tablets for 3weeks, though they could take a year to work. We’ll see.
Jenny was on the waiting list of a top M.E. doctor in the U.S. and although she has 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)
– Jenny’s Doctor Who poem called ‘The end of the tenth Doctor’ came runner-up in a competition judged by Adrian Plass and Authentic Media: http://bit.ly/be6lWy (4th poem down)
– Links to all the reviews of my poetry book ‘Rainbows in my eyes’ are here: http://www.twitter.com/JKRowbory
Thank you to:
– Christine, Rachel, Alex, Laura, Victoria and George for keeping in touch when you can. Jenny finds it frustrating/upsetting that she cannot reply when you send a message or letter. She has so much to tell you all, but is unable to. She hopes you understand and that you keep sending her messages when you can. She thinks of you often but understands it’s hard for you to keep in touch with a person who can’t reply.
– Mum, Dad, Simon & Keith. Likewise, she finds it upsetting that she has things to say and tell them, but has no strength to talk.
– People on Twitter. Jenny goes on Twitter on her iPod touch. She is extremely ill whenever she writes a tweet and feels guilty that she can’t reply to everyone. She asks that you don’t ask ‘how are you?’ – she knows that it’s only very well intentioned and because you care, but she doesn’t like to keep telling people bad news! Also, she likes to use her limited tweeting capabilities for fun things/her interests.
‘How does Jenny spend her day?’: People are still asking this question, although Jenny answers it on the website:
Her life involves just about managing to prop herself up enough to eat, getting to the mini portaloo in her room, shuffling to the bathroom once a week/fortnight to wash in the bath. All these “activities” cause her symptoms to get even more severe and she has to lie still in between them in order to be able to do them. Her treats involve watching a bit of television from her bed (though audio and visual stimuli are also exhausting) and going on Twitter on her iPod whilst lying flat. She can sometimes manage a few tweets a day, but that takes a lot out of her too.
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. Please keep praying and praying and praying (if you are of that inclination).