Over last weekend I experienced hyperacusis (sound sensitivity) and tinnitus (ear ringing) at unbearable levels that I cannot find words to describe. This is caused by the infections in my brain and while I have experienced these symptoms at a lesser level for some time it became much more intense. It started on Friday evening after we were out visiting family, we stayed out much longer than usual (about six hours) and I knew around supper time that it was too much so I went to another room for a while but I think it was just too late at that point. On the way home my kids were being, well, kids, and crying and fighting and I felt like I couldn't breathe and my head had so much pressure and pain in it from the noise I thought I was going to throw up. It threw me into a panic attack as I was stuck in the van and couldn't escape the noise, all I could do was scream and bawl my eyes out... for a second I even thought about jumping out of the van but thankfully was with it enough to know that we were driving down a highway. Of course all of this scared the kids and was the worst drive I think we've all experienced. This is not easy to share but the horrible and not nice to talk about times are just as real as the good times and I wouldn't be being honest if I sugar-coated all the terrible symptoms and what this disease can do to a person. I held my head in my lap during the rest of the drive home just crying, I found that music was helping me drown out the other sounds if I focused on it hard enough. Once we were home I put in my ear buds, turned on some music and thankfully this is what got me through the next two days. I know it might not make a lot of sense, but it worked. I was told this is because our brains process music differently than other sounds. That must be true as it is the only "safe" sound that doesn't throw my body into fight or flight mode. I just put my ear buds in and it blocked everything else out. I even napped this way, I was in bed almost constantly. Kyle took the boys to the air show on Saturday with my Dad, brother and brother in-law so this kept the house a bit quieter. Bonus that the boys had a fun day out with Dad.
 |
| ... a reminder from Lucas on Sunday morning <3 |
Along with the sound sensitivity I have been battling horrible fatigue, my arms and legs have been aching and I'm feeling feverish and flu-like, with no fever. I have also had increased muscle cramps around my heart, its a very sharp pain that makes it difficult to move or breathe for about 30 seconds. This just indicates that the infections are in there too and not liking treatment. But I am thankful that over all pain levels are still lower than my average.
As you go through treatment and the infections die off new symptoms will come up as well as more minor ones will become more severe. This is a result of either the bacteria dying off too quickly and releasing too many toxins into your blood stream which exacerbates symptoms, or from the infections trying to escape the medications burrowing themselves further into your body (in this case my brain) causing worsening or new symptoms.
Dr. C said that these kinds of intense herxheimer reactions are more common when you are pulsing the medications like I am currently doing. On Friday, the day the sound sensitivity started, I restarted a 10 day cycle of an antiparasitic medication that targets babesia which is a malaria-like parasitic infection, so it is clear that this medication is what's causing this herxheimer reaction and that pulsing it is doing a better job than just taking it constantly. The circular rashes on my arms that were pretty much 100% gone even flared up this morning. The bugs aren't too happy but Dr. C said I'm making good progress and to keep going with everything and detox, detox, detox. While these symptoms are awful they are unfortunately part of Lyme treatment and are considered positive signs. No one said treating late stage chronic Lyme disease was going to be easy.
With my sister Sherene, her daughter Jaida and my boys on Sunday evening:
Pictures often do not tell the full story, do they? Pictures don't always show what it took for a person to be out, how much pain they're in or how tired they are. If I had just shared these pictures and not told you about the war going on in my brain all weekend, aside from a little puffy and tired eyes, you'd think I was doing just fine. I did have a good time and am so glad I went... even shared a few laughs. I don't remember what about though. :)
Then on Monday Kyle and I celebrated our eighth anniversary. We didn't have much planned as I am so limited in what I can do, but we think it's been since last year's anniversary that we went out so he took the afternoon off and we aimed to run a few errands that we've been been wanting to get to for a while without kids in tow and then go to a Lyme meeting and maybe go for a short walk and a coffee/tea after somewhere.
We recently sold our patio set with the intention of replacing it with some more comfortable chairs we can relax in as I couldn't sit on the chairs we had. So we did that and also went in to get my wedding ring resized. I haven't been able to wear it much in the last four years because I lost 40lbs during my pregnancy with Brandon and then another 20lbs when my health really crashed in April 2014... needless to say it wasn't safe to wear because it fell right off so it was put away for too long!
 |
| Roses from Kyle <3 |
A friend brought up the comfort we find in Lord's Day 1 of the Heidelberg Catechism a couple weeks ago, and I've found myself reciting it in my head often ever since...
Lords Day 1
Q. What is your only comfort
in life and death?
A. That I am not my own,
but belong with body and soul,
both in life and in death,
to my faithful Saviour Jesus Christ.
He has fully paid for all my sins
with his precious blood,
and has set me free
from all the powers of the devil.
He also preserves me in such a way
that without the will of my heavenly Father
not a hair can fall from my head;
indeed, all things must work together
for my salvation.
Therefore, by his Holy Spirit
he also assures me
of eternal life
and makes me heartily willing and ready
from now on to live for him.
