Thursday, June 2, 2016

Day 22 - At the FAR Clinic

Still going hard and it is harder than ever.  Only one day left to go and the thought is overwhelming.  Did it work?  Did I do enough?  Did I go hard enough?  Did I make any mistakes?  I think after years of misdiagnosis and doubting your symptoms and feeling, you doubt everything about this process.  Yes, I know it was right, I know it has already helped...I just hope and pray, I don't and didn't do anything to mess it up.

The thought of getting on with my life in a few short months is a little shocking.  I really don't know what that looks like anymore and maybe it will be a whole new way.  I look forward to seeing my kids play their sports again and not have to figure out how to rest and save energy so I can do so.  Nor to have to spend the day in bed sick after I do anything like that. I want to go to them when I have to talk to them and not call them into the bedroom.  I want to remember the things they ask of me and know they don't have to worry about reminding me...all the time.  They have been so great to me...helpful, caring, responsible, compassionate and very, very patient.  I no longer want to have to ask so much of them anymore.  I am lucky that they are young adults and able to take care of themselves.  But I am still a mom, who wants to be there for them.  For the first time in a very long time, it looks like that opportunity is near.  Seems too good to be true.

This last grand hurrah of symptoms and challenges brings a lot of things to light for both Brian and I. Since we are able to be together without a lot of distraction he is able to identify a lot of things, that I try very hard to ignore.  So I am not getting away with a lot these  Brian is really seeing my silent struggle to sort out simple things.  I am delayed reacting to what is going on around but in some cases can't actually sort it out at all.

The one symptom I try to overlook, to no avail, is my speech troubles. You know the word you want but you cannot pronounce it no matter how hard you try.  It used to come out as a different word but now I am just not able to say a word at all.  I start it, try, but the word in my head cannot come out of my mouth.  Thats where this disease was going before I got here.  I know of one girl that had to have speech therapy after she started to recover, so she could learn to talk again.  It is incredible the havoc those little bastards can do in your brain.

It may just be a consequence of loss of short term memory but sometimes you just have to stop what you are doing and get your bearings all over again.  It often happens if I am focussing something. Its kind of like, if you focus on one thing, you have to lose all the others.  Its a freaky feeling to say the least.  You all of a sudden realize you need to stop and regroup.  Where are you?  What were you doing?  What do you have to do? Was there something important you were focussing on?  You almost feel like you have to start with the basics, your name, place, was I grabbing something, putting something down, going somewhere...It all comes back in a flash.  You just have to stop everything so you can refocus.  Its like an incredibly brief wave of amnesia...that sorts itself out really quickly.  But you can't sort it out unless you stop everything else.  I would love to learn the physiology behind it, but thats definitely beyond me comprehension abilities right now.  BTW did I mention I DON'T LIKE IT?  (wow doing those words in caps locks were very challenging...)

Today, is much like the last, flu, nausea, fever, anxiety, muscle pain, joint pain, swelling, headache and very limited cognitive skills.  I feel like these are the last few days of feeling this bad for the rest of my life.  Its my one last chance to remember how much I hate those little bastards (I seem to be saying little now. I think they individually are getting smaller but so is their army.) As sick as it sounds, I have identified with these symptoms for a very long time.  I won't ever miss them but I also don't ever want to forget. I never want to lose appreciation for my health.  I don't want to forget how far I have already come and I always want to keep in the front of my mind how lucky I am to be given this opportunity.  So as I sit here feeling shittier than ever, a part of me wants to hang on to this I never, ever forget.
I am sure I am winning the battles with lyme because no one would feel this crappy for no reason!  I no longer feel the need to keep score, whether I feel good or bad, I am winning these days.  Bad days don't worry me anymore.  There is only one more score to keep that will come months down the road and thats the war.

UPDATE: I did get a response to my "Letter to my Canadian Medical Clinic".  Not only does he not answer either of my questions (although he says he does).  The only suggestion is to book another appointment with the same Doctor I was complaining about.  I think its safe to say, they don't want me back.  There is a lot more to this war on Lyme than just what is going on in your body.  Sad but true.

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