Monday, December 07, 2015

Catch up on Chronic Illness. Now they call it Multi-Systemic-Infectious-Disease.

In America, the powers that be (the CDC etc) are trying to change the name of Myalgic Encephalomyelitis(ME) to SEID which stands for Systemic Exertion Intolerance Disease. In the UK the PACE trial was found to be poor (or rather rigged) research but they will not officially retract their paper from The Lancet nor has the Lancet itself retracted/rejected it like they should have when it was first submitted for publishing. Anyway the the flaws have been exposed elsewhere but that knowledge is not likely to filter down to the general practitioners and specialists who continue to follow its so-called findings which advocated Graded exercise as a treatment for ME. If the authors and Lancet would admit fault publicly then such practices would stop. They need to stop because that sort of torture is continuing to cause suicides especially in those who are institutionalised. Here in Australia it is still called Chronic Fatigue Syndrome(CFS) and it does not rate much of a mention anywhere unless it is associated with what we now call "A Lyme-like Illness" instead of Lyme Disease. Can you believe that the Senate has called for submissions for an enquiry into Lyme-like disease in Australia. This time next year maybe I'll have some good news. Nothing much has changed for me when I look back and read May 2014's birthday blog. My teeth continue to crumble and crack and be repaired and I still hate wearing a plate mainly because of this darn Burning Mouth Syndrome which no-one knows how to treat. I don't wear it at home so I get caught without it too frequently. I'm in pain all the time you know. Has not ceased since I bought a whole body vibration machine with a credit card although the machine is long gone. I had a really bad time with that triggering fibromyalgia flares and then stiffness and more osteo-type pain which requires Celebrex and a restriction on how long I can sleep for before becoming so stiff that I can not move without impossible pain. It was then that I tried Endone from a friend and loved it because it helped so much that my mood changed to happiness. I asked Dr Jo for some and she said no. I asked Dr Norton for some and he said I can't now that Jo has said no, I'll send you to a pain specialist. That will be in February if I can even afford to go. I feel decidedly worse after walking any distance, even just from the chemist to the bakery and back or after dying or shampooing my hair and if I don't rest up accordingly after, I am likely to be in more pain and have more flu-like feelings, sorer glands, more pelvic pain and ofcourse sleepiness and slowness even with an elevated heart rate the next day. I still get mini-fevers, half a degree or so higher than my usually low (less than 97 degree) temperature. Lately, standing up for more than 5 minutes makes me feel usually I sit right back down except when I am caught out the front talking to Flora who is usually talking to Miss Milo. It was bad enough turning 60 in Hervey Bay with Mum and Debbie (and the kids and grandkids)
photo of Mum, Deb, Brett and Cohen
In the motel at Hervey Bay
My last gourmet birthday mudcake
then finding out that both my blood glucose and blood pressure were too high when we got checked at temporary health screen stand. That led to taking Deralin and a diagnosis of Diabetes type 2 eventually. But I was still getting around back then in between a few recovery days. Everything I have done or rather taken in the form of supplements eg. to treat my MTFHR and COMT polymorphisms, seems to make me feel worse. Anyway I came home from Hervey Bay with itchy bites, so I thought. They became hives and spread eventually up my body. I still have the brown marks quite visible on my pale stomach skin. I blamed the Deralin after considering the mosquito/sandfly reactions of the past but after I insisted on an extended RAST panel that focussed on an area that had been uncovered as a food allergy group, I quit eating eggs and the hives went away almost immediately after months of trying everything to relieve the itch. The strange part is that the high blood pressure vanished even before that so I no longer needed the Deralin which I had blamed for the hives. I have not needed it since so I have not re-challenged with it but I assume it is safe and it sure is much easier to take than metoprolol which for some reason is fatiguing to me. I surely do not need that. No sooner as I had sorted out the hives and while mourning my beloved eggs (my gut likes them) and sugar hits (gut digests sugar easier than most things too), I started having major gut problems. The bowel attacks were back. Partial bowel obstructions and passing-out kinda pain...but I did not pass out so when I did actually go to Emergency one time, they just left me to rot. No pathogens were unearthed from the tests I had then including ones done by the doctor but I was passing blood by the end of one of the attacks. Oh, you have an internal hemorrhoid, no worries. But what was never looked at was my stomach transit times and I swear my stomach would stop working before each of these attacks. I have never felt so much nausea. Nausea so intense than once again I thought I may pass out. It was more a nausea pain because although I wanted to vomit, I never do. Never have...once I did for a few days...that was before all my gut problems started...but not since. Very weird. I am really sure I had gastroparesis in a way that I could recognise it as such this time and I do not want to have it like that again. I couldn't eat, didn't really want to, because my food would not go down. It seemed stupid to stuff more in. I started following the gastroparesis guidelines but ultimately just did what I have always known to do since I was in my 20's....go on a liquid diet. Very difficult when you are supposed to have quit sugar. I had no idea until then that there is no such thing as a sugar-free nutritional liquid. You have to have some sugar I was told. I gave up and had ensure and stuff that was loaded with sugar. Anyway, I got through it and it has happened to a lesser extent since then but I have been able to adjust my diet from my now usual, low carb, high fat, high protein diet. I was not losing any weight though and in my mind, that was the key in making this diabetes 2 go away. It looks like I have started losing weight now though. I have lost 5kg since September. Not only was I eating far less carb but I also had managed to suffer through the prolonged withdrawal associated with switching from Effexor (which I blame for causing the most weight gain) to Lovan (which I used to be on in the past). Everything I have done has been hard work, involved a lot of online research, taken a lot of will power, cost me more money than I was used to spending on food etc. I am glad something is paying off. It has also involved going against the standard advice for diabetes. Yeah I went to a diabetes dietician but her diet did not go anywhere near far enough into cutting carbohydrates (my favorite food). Even low GI carbs were putting up my blood sugar too high. I had a tool to prove it and I used it well. Now I don't bother as much. The safest thing for me to do would be to eat meat and drink water but I'm not that pedantic about it. I'm sorry to say that I have taken up artifical sweeteners in soft drink. I just had to have something that tasted sweet. Never ever wanted that stuff in my body and managed to avoid it for 60 years but my diet ginger beer is an important part of my staying sane. Too much self-denial is bad for the soul. I felt very sorry for myself initially. Diabetes sucks but over it I have some control unlike all the other things I have suffered from since getting glandular fever when I was 16. Actually, I do have more control over the rest in a small way compared to back when I was listening to the masses because I no longer push myself to soldier on (unless it has something to do with my grand kids). It seems to be the worst thing you can do for things like fibromyalgia, ME, CFS, and vector-borne infections that have become chronic. Listen to your body. It cries. Be as nice to it as you would have been to anyone else who you were wanting to help. You are not going to tell that sick friend of yours to flog themselves so don't do it to yourself.

1 comment:

zena said...

5kg great