Sunday, May 22, 2016

Day 10 & 11 at the FAR Clinic

I think it's safe to say I've hit rock bottom if that is such a thing with this disease.  Strangely though, I don't think people are relieved and so filled with hope when they hit rock bottom, so I am sure that is not the right term for this.  I admit the Bastards did knock me down a peg or two this weekend.

Brian and my friends were trying to figure out who was going to come this weekend.  You have to know greater powers are at work when things like this happen.  Because as much as things have been up and down while being here, I have managed (as any pigheaded person would).  But I know this weekend would have been too much to handle on my own.  So I am very blessed they are here and they know me well enough to help while making it as fun as possible.  It really has distracted me from what is going on.

They told me yesterday at the clinic that this situation is pretty text book for Lyme recovery.  Although the timing and exact symptoms vary a little, this bad bout is likely to last 2-3 days.   The second day is coming to a close and I can say I am feeling more encouraged that discouraged.  Mentally, I have to wonder if this would have been too overwhelming on my own.  I really wasn't able to cope and do most things.  Elanda always said she would come get me when things got too bad, which is nice to know.  But its even better when you have good friends that just go with the flow, join you as if they want to lol, and make it all seem as normal as possible.  The last two days have had their moments, but crazy friends can make the best of many situations.

I am also told to expect one to two more setback near the end of week two or the beginning of week three.  Except, it is quite likely that it will not be as bad as this one. Now, that is music to my ears.  I can't even fathom the thought of never feeling this bad again.  It seems too impossible but makes me so happy all I want to do is cry.  That might be my hormones trying to stabilize from the disease (which I am told are often heavily affected).  No shock to me (or my family for that matter lol) but a little stability would be nice :-) 
So for the sake of other sufferers, this is what the worst feels like. The anxiety was building for days, so I knew things were "brewing".  The chest pain gets so tight and intense, your ribs and back hurt.  You feel you can't breath enough to get up off a couch.  The thought of taking a shower take the mental stamina and physical exertion of running a marathon.  And then you need to nap afterward.  But I think the tougher part is the joint pain.  If you don't move it stiffens and aches, but when you do, movement is painful.  It seems to take on major joints, like shoulders, hips and radiates into large areas all around.   You lose feeling and gain it back, headaches come on with instantaneous intensity and fatigue comes on and consumes you like a wave, with little ability to push through.   

Because today is a day off I was encouraged to replicate some of the treatments with home made version.  So we went hiking on a short trail.   The altitude sure kicks my ass, but the improved breathing after, is a nice feeling.  I had to stay hydrated and take my medical smoothies.  The hot tub helped bring up my body temperature but the real benefit was it relieved some of the joint pain for a while.  It is very empowering to find things to help yourself, and have a better sense of what will help or hurt.  The thought of a hike sounded like the wrong thing to do when I was feeling so lousy.  It took a lot to convince myself to do treatments yesterday and especially hike today.  I feel discouraged at times, because I know I could do so much more, faster, farther with the old me.   Then I think back only a few short weeks ago and have to feel good about how far I have come.  It may not feel great, nor is it easy and a lot of mind game comes in to play to get it done, but I did it! With great people around, a lot is possible. 
We had a very cool experience yesterday when we went to a restaurant that does meals for another Lyme doctor in the area.  It was an Asian Fusion restaurant and owner, Chef Hai, literally sat down at our table to find out what my requirements were and whipped up a special meal that not only worked with our favourites it complied with all the special requirements I have these days.  He also was quite versed in Lyme and beneficial foods for health.   It was an experience, lesson and adventure all in one.  I love meeting people who love what they do and he is certainly one of them.   
So I feel I am on the way out of a big hump. A sense of relief is in the air.  Mentally and physically there is a bit of a bumpy ride ahead, but the end is in sight.  I also know that I have great people at home and because of that I know anything is possible.  I really hope to be that person that conquered Chronic Lyme, not manages or lives be done with it.  And if I can do it, it means there is a solution out there for so many others.  How exciting would that be?! 
So the bastards may have one won a battle this weekend but not all because I brought in more recruits.  And they sure know how to fight.  So I will give them one, but we get one as well -  Bastards 4 - Kristy (& friends) 8

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