I don’t need to rewind too far because most of my story is published so let’s go back to… Wow, my 2002 Alice In Wonderland diary! An entry reading “weird neurological sh*t, double vision and tingling all over” then an admission to Fulham’s Chelsea and Westminster hospital for investigation… “Neurological episode with idea of cause”. These episodes very slowly increased in occurrence and longevity to now practically daily for hours.
I’m literally falling down the rabbit hole into Wonderland.
Basically I suffer with – either together or separately – erratic paraesthesia all over, left sided sensory loss, numbness, dizziness and blurred or double vision, breathlessness, worsening fatigue and my funny turns. Diagnoses? Extensive examinations from multiple disciplines revealed functional neurological disorder aka conversion disorder and “downbeat nystagmus” (sounds like a joke Roman name from The Life of Brian).
And stage 2 heart failure as a result of dilated cardiomyopathy. Whit da feck??? That was found on an echocardiogram a year ago and 24hr ECG. I’m stunned. On Candesartan and Bisoprolol and see heart failure nurse plus a phone call away should I need advice/support. One of life’s progressive problems.
It’s quite funny how my psychologist deemed me politically progressive and I enjoy progressive dance music. I’m a progressive borderline strong with mousey brown hair. My favourite animal is a mouse and Mouse is fittingly my nickname.
No way!
© Copyright: Sharon Lawson™
Sharon Unfiltered 
I’m so sorry Sharon. I honestly hope one day that we can use our creativity and innovation to find better ways to treat illnesses. One without debilitating side effects that make things even harder.
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Thanks for your reply. Some conditions are so crazy and desperate for relief, cures, anything. The nervous system is a nightmare, I’m finding it hard to keep sane lately but I love losing myself in movies and videogames. Having support helps me cope 💜
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I wish I could offer a solution to you. Have you tried other alternate medications? I’m not familiar with your ailment so not sure if something like that would help. I’m glad that you have something to distract you from the pain and a support system.
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Thank you 😘 I’ve tried herbal remedies to ease things but they’re not very effective. Keeping calm and attending appointments seems the best way plus plenty of distraction techniques, relaxation and support 💜
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I wonder how much of medicine’s inability to effectively treat conversion disorder is because people still think, somewhere in the back of their minds, that it’s because of the uterus wandering around in the body…
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Endometriosis maybe? I am flummoxed by everything! I’ve had so many appointments with not much enlightenment. They can’t do an MRI because of my spinal cord stimulator 🤯
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Sounds like being on an out-of-control roller coaster.
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It really is, you’re so right! I wrote about being on a rollercoaster. A crazy big dipper!
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