Hi, I was planning on informing everyone on how my consultation went last Tuesday but I've really not been good since then, so not been up to doing anything really.
We had to set off for Wales at 7:30AM! So we were all still half asleep with the car filled with bottles of water my Dad always hands out on any long haul journey. In the end I took an entourage with me Callum, Mum and Dad :)
Another rare glimpse.
She literally is in the middle of nowhere! Finally we got there!
We arrived bang on time at 11:30AM for our hour consultation with Dr. Myhill. I have worked with her before but not in any detail at all, she is the top mitochondria/cell specialist in the country and one of the leading doctors in M.E/CFS working privately. But since my relapse a month ago I knew I needed to really go and see her properly and see what suggestions she had.
It was a really positive consultation, there were alot of long biochemical words, she an amazingly smart woman and seriously knows her stuff!!
1) To sum up without boring everyone she says I have a 'fermenting gut' which is yet another part of M.E and is quite common. Years of medication & your typical 'Western diet' will do this to you. Along with me having 'low stomach acid' - basically nothing is being absorbed hence me losing weight but eating a normal amount of food! She suggested a change in diet, to dramatically limit carbohydrates & sugar because they worsen the matter. I am to be really strict with the 'Stone Age/Paleo diet' - think as to how the Stone Age man or woman would eat, meat, veg... thats about it really. No preserved, artificial foods. I do have a good diet but no more treats for me. Great. She's also added in some supplements to help the matter aswell. Paleo Diet
2) Sleep is a big thing on Dr. Myhill protocol. Strict bed before 10PM. We gain the best sleep before the hour of midnight so the more sleep before 12 is a bonus and we are to wake early at 6AM (again like during the Stone Age times). But if she thinks I'm awake at 6AM she is mistaken.
I know alot of people will think it's a load of rubbish (Callum being one), but I think I need to figure out a way to live away from all these gadgets.
- Change in diet
- Further tests to be done
- Change in medication
- Get some good sleep
- Look at environmental factors
- Address emotional problems
Dr. Myhill kept referring to me as a bucket with holes and we need to fix the holes. But at the moment I feel more like a siv I have that many holes and problems wrong with me. She wants me to report back in 3 months.
The diet is the hardest part, I have had a few paddies. End of the day I just want to be a normal 21 year old & I'm sick and tired of being sick & tired but if doing these things will help, I guess I should give it my best shot.
I wish I could go the the GP and she could give me a pill & all would be OK. Unfortunately, this illness is so much more complicated than that. It takes years to work on and can cause multiple complications, you have to chip away at the problems & do your best with what your given. I'm one of the lucky ones who has support & has access to the best doctors & treatment but there still is no magic pill. If only.
Wow Becky that is *hard* - it is a testimony to how very difficult this is that you're willing to make such tough changes in order for things to improve.
ReplyDeleteI'm impressed by your will-power, it must be incredibly difficult on the days you wish you could just be 'normal' and yet knowing that eating the wrong thing will have a nasty effect.
You may be a sieve, but you're working hard to plug up those holes. Im praying. Xxxx
Becky, I can relate to your posts so much. I've had CFS for almost 18 years now. I got the beginning of it when I was in college, recovered a bit, but then my health totally crumbled beneath me just 6 months after graduating college. I understand all too well what it is like being a young 20-something and too sick to even get out of bed. When all the people I knew who were my age were out "conquering the world" and enjoying all the energy that a young 20-something should have, I was struggling just to crawl to the bathroom. On Tues, I turn 40 and I still struggle with relapses some, but most of all, I get to enjoy a full life. I have a job that is flexible and understanding. I have a husband who helps me when I'm down and I even have a little 4 year old despite my fears of having a child with CFS. I want to spread hope to you to hang in there. Last year, I began to write about my journey with CFS. I'm still working on writing more. Here is my entry from last year. May it give you hope. God bless you, Becky! http://selah-myjourneywithcfs.blogspot.com/
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