Ups & Downs

Wow.

From couch-bound to riding a bicycle and playing in the sun to being couch-bound again.

The weather can do some tricky things to folks with Lyme. Especially cold weather. My prayers are going out to all my fellow Lymies who have roommates that are being strict about the heat situation in the home - enforcing low heat and demanding you wear layers.

I cannot tell you what a nightmare it was for me while I was living in Seattle with the extreme low pressure system and cold, damp rain. I had a roommate who was willing to spend thousands on material possessions and hundreds each week on going out to bars and drinking, but was tight when it came to the electric bill. The heat was kept on 60F - which might be tolerable for normal, healthy folks. I suffered tremendously and lived in enormous amounts of pain. Suffice it to say, I am no longer friends with this person (even though we grew up together).


At some point, you have to learn who your friends are, then simply walk away from the ones who are hurting you with their unfeeling irritation toward your situation. You should first try to inform them, though. Give them a chance or two. Then, when that fails, just walk away! If you're stuck with them, DEMAND WARMTH. I don't care if you have to throw a fit for it and have an awkward living situation - it's better than the pain that will result in being cold.

So, here I am in chilly North Carolina, couch-bound. I recently took a trip down to Orange Beach, AL with my boyfriend (which added to our debt, but it was so worth it) and it did wonders for my pain. I was able to ride a bicycle around a neighborhood block and do some walking. I knew that I could do so much more if I just wasn't so weak. All I would need is the right climate to become strong! So we are seriously considering relocating very soon.

Here's a little video we made on the topic:




It's also important to have a temperature regulated home. Never turn the heat OFF to conserve energy while you're not at home. Think of your power bill as a medical bill! Keep it warm and well ventilated in your bathroom while showering - because you may well know that a chilly bathroom can make showering a long and painful experience.

Anyway, those are my thoughts/tips. I'm writing to you from the couch right now. I'll post again soon about some serious issues I've been having. Some things I'd like to share in hopes of relating to some other Lymies.

Take care, warm hugs, & thanks for reading!

~KT

Couch-bound

I don't mean "couch-bound" like - that's where I'm headed - no... I mean I am bound to my couch more than ever these days.

I can see the trees shaking violently outside as the wind whirs and dances around them, sending a message that Winter is on its way.

Winter.

Such a cold word.

Such a painful word... for Lymies, especially.

We should all go live on an island together with a temperate climate of avg. 70F year round. I personally wouldn't mind it getting up to 90F every now and then with a nice breeze. Mmm, Summer. My favorite season of all. 

Summer is also wonderful for a Lymie, considering many who lack energy or the ability to exercise can at least get some energy from a light swim. :)

Otherwise, so many of us spend our days sitting and staring - mostly at a computer. Couch-bound.

I used to sit in that chair - for months - this Summer. I have since relocated to the couch. My house doesn't have central heat, so I rely on one baseboard heater in the living room and one in the bedroom. I'll put a little space heater in the bathroom prior to showering.

The cold air and the warm water = the most painful experience. Showering becomes less frequent and I become more miserable. I can barely talk myself into getting out of the bed because of the cold air while under the warm covers.

What does it feel like? you ask.

Hmm.... You know that feeling when you're standing in the snow without clothes on and you're soaking wet? Probably not, but imagine it anyway... Mix that with the feeling of your body going numb, tingling (like poor circulation or a limb being asleep) with each impact of every tiny little drop of water or cold air. It doesn't seem to matter what temperature the water is when the air is cool, it's going to be painful. It also doesn't seem to matter how much you layer your clothes, the uncomfortable attack of irregular temperature creates unimaginable pain. A cold face + warm body = irregular temperature = pain!

Surprisingly, nothing like this experience happens (or at least far from it) when the weather is warm or you're living in a house with regulated temperatures in every room. I dream of finding an affordable home with central heat.

Unfortunately, my boyfriend is the only person making an income between us while I can't work (he waits tables), so we really can't afford it.

So here I sit.. uncomfortable and exhausted.. each and every day. I keep wishing I could just strap on my roller skates and sail off into the abyss with a smile on my face and the wind in my hair... but I shake my head and bat my eyes and suddenly, I'm just here... sitting on the couch... starting a blog on blogger.com. :\

I'm going to use this blog to vent my thoughts and talk about life, and hopefully connect with other Lymies, while informing friends/family all about the many magical wonders (yeah, right!) of Lyme Disease.

Welcome to my crazy world. Enjoy. :)



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