Monday, May 23, 2016

Day 12 at the FAR Clinic - the battle continues

Well...just when you are sure it can't get any worse, it does!  I am pretty sure today is my worst day.  I hope it is anyway.  They told me at the clinic they are secretly very excited for me, because this has to happen and has to be this bad, for them to know its working.  As shitty as I feel, that is great to hear.

The other sweet justice in all of this is seeing the clinical signs change as you feel worse.  So it tells me none of this illness was in my head in the past.  The days you can't get out of bed are actually because your heart rate is crazy, your blood oxygen level is low and your strength and abilities are gone.  It has nothing to do with motivation, will power or stamina.  Your body is simply unable. I was able to compare all my abilities and levels today to when I first came here and they were worse than ever.  And I agree, I feel worse than ever.

Tomorrow is a new day and it has been three crappy days, so I'm done.  I told my mind and my body that.  Mind you, I have told them a lot of things over the last three years and they didn't listen.  Funny I say that to myself, because lately it kinds feel like three of us fighting, me, my mind and my body.  Each one of us has good days, rarely together.  But its kinda like we are all trying our best for each other.  When my physical abilities are low, my mind works overtime trying to think and say the right thing to make the difference.  When my brain can't operate properly, there is a brute strength inside trying really hard to make things function.  All the while, me, I'm just pleading for it to all come together, so life doesn't have to be so hard anymore.  I just want to get on with life.

I am sure that last paragraph sounded a little off the wall, but there seems to be incredible conversations going on inside of me all day long.  I sometimes wonder if some of them come out in my outside voice lol.   I guess with writing that last paragraph, I let one slip out.  I may regret writing that but it isn't the first time I have said and done weird things.  After diagnosis, I was warned to caution visiting too many "chatrooms" with Lyme patients.  We all struggle with a lot of internal turmoil.  And as a result a lot of what we say and do can be a little out there at times.  I am sure that is the case with many aspects of this blog and I know some of it seems a little depressing.  I don't mean for it to be.  I just want it to be real so that someone else in my place won't feel so out of place.

Probably the thing I feel most guilty about is my impatience.  I was told two or three days, so I wanted it to be two.  Now its three and I am impatient and frustrated.  My competitive self wanted to accomplish the shortest possible time frame.  AND then I feel bad and think to myself, some people don't have the chance to get better.  So who am I to be impatient and frustrated.  I know I am getting better and I have been given a gift with this treatment.  So, the "three of us" have another little internal conversation and straighten each other out...and move on.

Dr. Earl came in today with a bit of a pep talk. I can only imagine that some consider giving up at this point.  You feel shittier, your too tired to do anything, let alone fight.  The treatments that made you feel better days ago, now are really hard and make you feel worse.  I feel okay that way, I have been really honest with all the staff and they have been very compassionate and honest lately too.  That I appreciate.

Matt is the nurse.  He of course is very comfortable with the science behind all of the treatments and will answer any question in great detail.  I listened today to him describing the treatments to a new patient and he has an incredible ability to get into the very fine details of what is happening with the treatments and in your body as a result.  Yet, he also has an impressive ability to say it in such a way that the general person can understand.  It also made me realize that there is so much more going on with the treatments, but I can't remember exactly what he said, it just made a lot of sense at the time.

Now Ashlee is very sweet, kind and knowledgeable too.  She is the nutrition specialist, but does so much more.  I love her ability to share her wealth of information but when I ask her a question, she answers it openly and honestly but also wants to look into things more for you.  She knows so much yet never appears like that and is always open to new things.  She often is the one checking on my symptoms and mental stability (poor girl) but she is very sympathetic and makes you feel really comfortable.

And then there's Lindsay.  She takes care of more of the logistics and patient intake.  I like her because she's very honest and straight forward.  I kind of like the situation laid out on the line for me and you can count on her for that.  We are probably a lot alike that way.  She is the one that warned me of the hills and valleys, and has repeatedly said, this bad bout is good.  I find often she says the things I need to hear - good or bad.

So I know I am in good hands.  It weird to think after three weeks you leave people who have seen you at your worst and then hopefully as some of your best. I also have to travel home on Wednesday for an obligation that I need to fulfil and will be returning right away.  It is not the ideal situation for treatments, but they are being really helpful so that I can figure out ways to continue thing during the day and a half I am home.  Or atlas not lose any traction.  And as luck would have it, it is also my son's 16th birthday.  So it feels really good to know I will be home for that and can see my family.  So this time in 2 days, I will have completed two full weeks of treatment, see my son and daughter for a quick visit and be returning with my husband.  Life is Good!

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