A Blog Post to Myself

When you live with a chronic illness, you go through a lot of emotions in a single day. Some days are easy; some days are not. Today I hit the two year marker of my treatment of chronic Lyme disease. Two years! I simply cannot believe it. And in true Lyme fashion, this day was both easy and difficult.

Last night, I had an amazing massage that gave me so much energy. I was able to accomplish so many things today and that felt like nothing short of a miracle. That doesn't mean that I wasn't in pain, nor does it mean I wasn't exhausted. It just means that I was able to do more than normal, and for that I was grateful.

But alas, all good things must come to an end, and this ending involved the "bursting" of the burst of energy from my massage. I had what I refer to as a Lyme crash. I found myself stuck in my car in the driveway, too exhausted to get out and walk inside. I stayed in my car for about 20 minutes before I could muster up enough strength to move. There is no end to the many ups and downs with Lyme disease. But there was a time when I couldn't even get out of bed...

Over the course of these two years of treatment, I'd like to remind myself of a few things and a few lessons that I've learned along the way. So here goes.

Dear Alyson,
First and foremost, I'd like you to remember to always try your best to be gentle with yourself. You are doing what you can, with what you have, where you are. And you are doing a great job. Yes, it's hard. Yes, you often want to quit. But you don't! You persevere and you are strong. You are not afraid to ask for help when you need it. 

When you feel overwhelmed at the prospect of living the rest of your life with this illness, you're focusing too much on the negative. You are still able to do so many things in spite of your illness. Yes, you have to work much harder than most people at many things. But you don't give up; just look at all you've overcome!

Other people can be there for you and help lift you up when you are down (literally and figuratively), but ultimately you are the one in charge of your health and your mental outlook. You are your own best friend, so act like it. Thank your body for all of its hard work in healing. 


Way to go, Alyson! I'm proud of you!


Love,
Alyson

PS, Never give up on a cure! Some day, some way, you--and all of the others suffering from this disease--will be healed.

Cape May Point, NJ

For nearly two years of my life, I've given everything I've had to treatment of my chronic Lyme disease. Everything. A few months ago when I was doing really well, I was okay with that, but now that I'm relapsing and I feel like I'm back where I started from, I've been really down in the dumps and mentally burnt-out.

I'm happy to report that I'm freshly relaxed (and tan--a rarity for my pasty old self) from a week at the beach. I went with several family members (over 30 people!) to Cape May Point in New Jersey. Because of my rapidly declining health, I did not decide up until the night before we were supposed to leave if I could make the trip or not.

Our Beach Path

The original plan was for me to go to the beach, take a week off of treatment and just relax and enjoy being on vacation. But I started going downhill really fast and thought I'd better get in touch with my doctor before leaving. She said something of the nature that if I was feeling bad enough to call her, then that was probably a sign that I needed to start my new treatment ASAP. Starting a new treatment meant there was no way I would have been able to travel and/or enjoy my vacation.

I love my doctor and I would not be here without her incredible wisdom and knowledge of Lyme disease and co-infections. She has lovingly guided me through these two incredibly difficult years of treatment and brought me back from the brink of death. I know there is nothing more frustrating for a doctor than a patient who doesn't heed their advice, but this was one time when I had to listen to my heart.

It was a gut wrenching decision for me to go against the advice of my doctor--something I've never done--and to go on this trip knowing that the odds were high that I could get much, much worse being off of treatment for a week. But I made the right decision. This vacation put the fight back in me.

Sunset over Sunset Beach

You can't actually take a sick day when you have a chronic illness, but this trip was as close as I could get to my own personal version of Ferris Beuller's Day Off. Yes, I was beyond exhausted; yes, I was in severe pain; yes, I got sun poisoning from one of my medications, but it was all worth it to "call in sick" from Lyme disease for a week! Now I'm ready to go back to school, er, treatment. And Dr. P., if you're reading this, I hope you won't put me in detention for not listening to you and I promise never, ever to do it again!

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Hace un Año

Today marks 365 days with my beloved Icelandic horse, Fjóla. Her love and devotion absolutely blow me away. She drops everything to come tolting to the gate when she hears me call for her. She loves to be brushed just as much as I love to groom her. I ride Fjóla bareback and bridleless: no reins, no bit. I steer her with my legs and occasionally a small crop for when she "forgets" my leg cues. When I put her back in her field, she stays by my side until I leave. My pony loves me and, wow, do I love her!

Tonight, because I was feeling so sick from my Lyme disease, I had to park my little 13.1 hands high "low-rider" horsie right next to a chair so I could climb on her back. Icelandic horses are very small and generally, even on "bad" days, I can still manage to clamber my way up. I didn't even have the oomph to try tonight. My health has been steadily going downhill over the past few months, and it has been taking a huge toll on me. As badly as I felt, I knew that I mentally needed to ride my horse tonight. 

Fjóla and I have begun practicing steering (with my leg aids) during the tolt (her fast past). She is generally very poky and takes plenty of coaxing to get moving (we like to joke that her quarter ran out). Tonight, however, she gave me a beautiful fast (but not too fast) tolt. Round and round we went, her mane dancing in the breeze, with my little ponytail floating out behind us. It dawned on me that not only did I have a giant smile plastered on my face, but for that fleeting moment, my pain was completely gone.

I can't explain why even though there are times when I can barely walk, I can still somehow ride my horse. Magic and healing can be found upon a horse's back, and so, then, can I. My pony carries me away from pain and sickness and while I am on her back, I am free of Lyme disease.

Sometimes, when I don't want to take my medicine, I call for some assistance.

Om nom nom!