I am struggling physically struggling at the moment. Mentally other than being frustrated by my lack of ability to do much, I am ok. I am so exhausted all the time it can make putting a blog post together extremely difficult. I can’t really concentrate and my mind wanders. So today’s offering is going to be short and sweet. It's frustrating as I have a few pieces I want to write but just can’t, my arms won't work properly to be able to type and my speech is buggered after a while so the voice recognition software I have installed is making a real hash of things or maybe it’s just me?
I am still currently waiting for an appointment to see the neurologist. Last Friday I emailed my PoTs consultant, as I wanted him to know that the mestinon was resolving my ptosis (as it always has) and that I was only taking half a tablet, 30mg as I know what a number 60mg does to me. A whole tablet works wonders on my whole body, it relieves the weakness and brings me back to my normal levels. However 60mg comes with consequences due to the bowel adhesions I have riddling my abdomen. To be blunt it feels like I am being disemboweled when I take 60mg, I don’t have diarrhoea or sickness with it, it just feels like someone is trying to extract my intestines through my belly button for around 4 hours at a time, until the dose wears off. I explained this to my consultant, who ideally would like me to take 60mg up to 4 times a day. You can understand my reticence.
I received an email back an hour or so later, letting me know he had forwarded on my email to the neurologist that he has referred me to. He was obviously keen to let her know that the mestinon works. I had explained to him in the email that I had taken a bit of a nose dive since I had seen him. I then panicked and must’ve read and re-read the email that I wrote making sure there was nothing in there slagging off neurologists. Neurologists aren’t my favourite brand of medicine, I have been treated appallingly by some in the past, although I landed on my feet with my neurologists last year.
On Sunday morning I received an email from the neurologist, which surprised me. I hadn’t expected any kind of response from her at all. She wanted to know if I had my appointment through yet to see her and could I let her know as she would chase it up. She wanted to see me as soon as possible. She also asked me to ask my gp to prescribe a medication called propantheline, this would hopefully stop the awful cramps / pain I am getting when I take more than 30mg of mestinon. Both she and my PoTs consultant want me on 60mg four times a day as soon as possible. I have taken propantheline before and it has been effective. I am hoping that it works, if and when it is prescribed.
So really that is all that is happening at the moment, I am just trying to keep myself on an even keel, not push myself to do stuff and try to not get too frustrated when my body refuses to obey my commands. As my husband told me this week in one of his profound moments “this is a temporary state”.
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