Here I Go…

Going to heal myself of Fibro and CFS naturally

Here I Go…

Hello world, indeed…guess I’m officially a blogger.  Going to use all the information I’ve been gathering to heal myself.  I am currently on long term disability due to Severe Fibromyalgia and Chronic Fatigue.  Getting further into the autonomic dysfunction now with the orthostatic intolerance (OI) , dizziness, blurred/double vision, sweating and tachycardia.  I suffer from post-exertional malaise and feel totally depleted of energy after very little exercise of any kind.  I tried physical therapy hoping to gain some relief for the pain of the Fibromyalgia, but after the first session, (which, incidentally didn’t bother me at all when I was doing it) put me in bed for the next 4 days.  I ain’t no spring chicken I know, at 58, but I should have a little life left still and I don’t want to spend it in bed.  I’ve tried everything the doctors have dished out and just keep getting worse.  SO…I’ve changed my diet to mostly fruits/veggies and lots of fish.  Cut WAY back on bread…well except for the radish and butter sandwiches that I absolutely love.  Weird?  I thought so too until I finally tried one.

Anyway…its a journey.  I am so determined to get well.  Looking into the Amygdala Retraining by Ashtok Gupta.  Reading up on alternative treatments and supplements. I’ve already started several.  I’ll get into all that later.  Just the diet change and addition of a few key supplements is giving me a little more energy already.  AND, my negative ion watch arrived in the mail yesterday…didn’t make it to mailbox until today. So I’ve been wearing it for almost and hour and a half now.  No results yet.

If anyone out there reads this, you probably think I’m a nutcase…but I’ve dealt with this disease since the late 80’s.  That’s 25 years or so.  And I am not better… much worse.  With all the new research, there does seem to be some hope.  I’m tired of doctors and I’m tired of pills and their side effects.  I’m not going off the ones I need yet.  Going to take this slowly and mindfully…that’s my new word…mindfully.  With what little bit of a  mind I have left.  Many people over many years have thought I was just lazy or just a slacker.  A hypochondriac.  Quit trying to prove to people that this “disease” is REAL a long time ago.  Don’t care what people think…takes too much energy to care.  Just want to get better and be able to go to my granddaughter’s softball game without ending up bedridden from pain and exhaustion for the next 2 days.  So I’m ready to try ANYTHING.

I want to do the things I love…gardening, cooking and sewing to name a few.  I want to draw and paint again.  I want to swim in the lake nearby.  I want to enjoy shopping again.  Right now even a trip to the grocery store puts me in bed.  Then all the lovely fresh produce I bought and fresh meat sit in the fridge and lose their freshness because I’m too tired to cook.  So I end up with a whopper and fries because that’s what my husband can “cook”.  And I appreciate that…because he has taken over most everything else.  Couldn’t make it without his support.  He now does most of the cleaning and all the yard and garden work.  I try to cook on good days and keep up with the dishes.  Its important to me to “do my share” and home cooked meals are the most important thing I can do for both of us.  So…I try to conserve my energy for that purpose.  It sometime takes several hours to prepare a meal with all the “horizontal breaks” I have to take.  Got to get that blood back into my brain and slow down the sweating from the tachycardia.

Over the years, I’ve had many other health problems as well and often wondered if they were related.  I know some are…like the autoimmune thyroid disease.  I also had Avascular Necrosis with 3 surgeries that finally resulted in a total hip replacement.  That was fun!!!  The horrible migraines have let up somewhat since I’m not working a full time job.  I think they are definitely related to the whole Fibro/CFS thing.  The anxiety and hyperventilation have also subsided somewhat.  I still have plenty of anxiety, but I think it has “internalized” like the theory of Dr. Gupta…the amygdala and unconcious tension that has sensitized my nervous system…autonomic/sympathetic/etc…etc…don’t fully understand all that yet…its a process.  I was hospitalized not long ago for … shoot I can’t think of the name of it.  Part of my colon died due to lack of blood because my blood pressure was so low.  Ischemic Colitis?  Yea..that’s  it….I passed out in the bathroom and my husband called 911.  Most of what I remember is they couldn’t get my blood pressure up in the emergency room and they added another “banana bag” to try and get it up.  I was ordered to eat lots of salt.  Well…my husband had griped at me for years about eating too much salt….told him my blood pressure was always on the low side so it wouldn’t hurt me.  Vindicated!

Turns out I was also dehydrated.  Had been feeling bad and didn’t want to move.  Not even to get up and get myself a glass of tea…my beverage of choice.  But that’s over…just have to be careful to hydrate and eat plenty of salt.  Colon healed I guess.  They said it would.

The Orthostatic Intolerance or POTS or whatever they call it has been the most devastating.  I literally must take “horizontal breaks”.  Yes, I had the tilt test and all that stuff…tested for a myriad of diseases, even rare ones like pheochromocytoma and myasthenia gravis.  I’ve had MRI’s and ultra sounds and CT scans and adrenal tests and you name it, they did it.  To no avail….finally just said it was autonomic dysfunction.  WHICH it seems is a progression(?) of the Fibro/CFS.  Still learning.  My wonderful rheumatologist attributes all my ills to the Fibro/CFS…but I went with the other doctors’ tests just to be sure something else wasn’t going on….and I guess Dr. L was right as usual.

With lots of salt and plenty of fluids, I can now stand for about 20 minutes before I have to lie down….usually dripping with sweat by then and exhausted.  I try to take breaks more frequently…that’s a lot of up and down when you are trying to do something.  Took me 2 days to hem and iron 2 pairs of curtains.  Crazy.  They were for my son’s houseboat and I had been promising him I’d do it forever…so I finally tackled it only to find that my bobbincase had disappeared from my sewing machine…so I ended up hemming them by hand…afterall…I could do that HORIZONTALLY.  BUT the measuring and cutting and pinning and pressing all had to be done standing.  Hence the 2 days…but it gave me a great deal of pleasure to have accomplished something I “used to do”.

I have a lot of “used to do’s”.  Want to do those things again.  TV got old quickly.  I can read more easily now since I have a Nook AND Kindle for PC.  But my eyes give me fits after awhile.  The computer has been a lifesaver.  I shop, socialize and LEARN on my little laptop that my youngest son gave me.  Couldn’t sit at my desktop for very long, so hadn’t even checked my email for ages.  Just gave up on it.  The laptop is my constant companion in bed and my connection to the world and my family.  And NOW a means to log my journey and if its successful, maybe even help someone else in the process.  Everything I’ve researched is all a jumble in my head right now…that short term memory problem doesn’t help at all either.  Don’t know if I’ll be able to write every day as I have some pretty lousy days at times.  Here’s hoping they will be “fewer and farther between”.

Thanks for listening, cyberspace.  Feels good just to kinda’ gather my thoughts and put them into print.  If no one ever reads this but me, it’s still a positive move…this is afterall my solution to my problem.  Wish me luck!

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