So, I asked for help last week and many of you responded with your usual enthusiasm. Thank you.
I received the message below from my M.E friend Ryn (I can't believe that we met through Foggy and have only met in person once....she is a true friend now though xx) . It was much more than I had expected and she has given her permission for me to use it as a blog post.
So, here is Ryn writing about her experience with dentists since her M.E diagnosis.
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And here I am again, being given the opportunity to clear some more clutter from my headspace. Thank you Sally & ME Foggy Dog for this golden opportunity.
My dental issues whilst having severe M.E. began four years ago. It was the year I first became ill with a nasty virus, was then diagnosed with Post Viral Fatigue Syndrome (P.V.F.S) then later, after undergoing various tests at an Infectious Diseases Clinic, received a confirmed diagnosis of Myalgic Encephalomyelitis (M.E).
Looking back, I was at times truly one of the many ‘lost millions’ of M.E sufferers. Those of us who have or know someone with severe M.E. know our tolerance to movement, sound, light etc. is zero – we can’t cope with ‘normal’ life in any way. We sleep, we rest, we exist. We fight constant pain in our muscles & joints, from our head down to our fingertips and toes. We have inflammation in our glands, our spine and our brain. Over my four years with M.E I have been totally dependent on my husband for literally everything I need, for months on end but particularly during three serious M.E. relapses.
I was bedridden & sleeping 24/7 for months, relying on my husband to help me to raise my head to sip water thru a straw, to hold a biscuit to my mouth so I could nibble the edge of it. Too weak to toilet myself he would change my incontinence pads, lift me from my bed to toilet me on the bedside commode, to wash my face and help me to swill a little mouthwash as I was too weak to manage to brush my teeth or allow him to do it for me. I was too weak to leave my bed, my house or attend the dentist for regular check-ups. However, I had persistent pain in my mouth that wouldn’t go away. My husband manhandled me to get me dressed and downstairs to the car and drove me to the dentist for an urgent appointment. It was confirmed, I had an
That first course of antibiotics the dentist prescribed didn’t work. My husband telephoned the dentist to ask for a repeat prescription for more / different antibiotics and was told it was dental policy that he would have to bring me in to see the dentists again. Even knowing I had a debilitating illness, they could not make an exception. My husband explained I was too weak to leave my bed and return at that time. Three weeks later and still very weak, he managed to get me to the dentist where I was prescribed Amoxicillin 250mg x 21 tablets.
Unsurprisingly, this weaker strength antibiotic didn’t work. And by then my M.E had again left me too ill to leave my bed. My husband rang our GP and explained the situation - we have been with the same GP practice for over thirty years so they know us and were learning about my M.E. illness with us. For a month, my GP prescribed two courses of two different antibiotics to be taken together. The first week was a course of Metronidazome 400mg x 3 daily for 5 days and Amoxicllin 500mg x 3 daily for 5 days. The second week was a course of Metronidazome 400mg x 3 daily for 1 week and Erythomycin 500mg x 4 daily for 1 week. Shortly after this last course of antibiotics, the appointment for tooth extraction under anaesthetic came through.
On my appointment day, my husband and daughter helped me prepare and took me to the appointment. However, the anaesthetist doubted and confirmed my not being strong enough to handle the anaesthetic when he asked me to grip his hand. I was unable to grip his hand tightly enough because the physical effort (even with help) it had taken me to leave my bed, dress, get in the car and be driven to and walked into the dentist treatment room had left me barely able to stand even with my husband supporting me. So, no anaesthetic for me! Thankfully a very understanding dentist, aware of my limited abilities, if not the actual illness M.E (and reasons for my dentist-related anxiety), allowed my husband to remain at my side to comfort me, while he gently injected the inside of my mouth multiple times, removed the affected tooth and cleaned away the abscess from my gum. Apparently, the abscess had been large and had gone down to the bone – unsurprising considering the length of time and courses of antibiotics it had been treated with. Thankfully my mouth healed well but the whole episode again led to me being bedridden and sleeping 24/7 for weeks.
Since changing dental practices it is only in the past 18 months that I have been able to attend dental check-ups, still with my husband's support and use of a wheelchair, but our new dentist is faultless, and very understanding of my limited abilities if not the actual illness M.E. But what happens if I am too ill to attend an appointment? The severity of the M.E illness’ symptoms fluctuate daily and throughout the day. I can literally be walking with my walking frame one minute then desperately needing to be horizontal and resting or sleeping the next. Dental policy is that I will have to pay for an appointment I can’t attend at short notice (at least three days’ notice of cancellation from what I recall). I understand this is so the practice can offer my appointment to someone else, an opportunity to charge that other person for treatment which is after all the nature of the business.
I currently consider myself to have a moderate level of M.E – I’m doing well :) I am unable to work or lead the independent, spontaneous life I once enjoyed but I keep positive (mostly) only occasionally thinking of the next relapse lurking just round the corner.
Thank you Ryn. She has told me that she and her husband had to write EVERYTHING down when she was going through her diagnosis. There was so much going on! That would explain the accurate info in her blog post! I can remember writing everything down too, it is so easy to lose track with brain fog as well as everything else!
Love,
Sally xx
and Foggy (OBVIOUSLY)
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