Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Monday, January 28, 2013

Disappointment on the ice

I'm so frustrated by what Lyme disease has done to my poor body, even though I've practically recovered from the illness.  Yes, I'm dealing with a small relapse at the moment, but I'm not really talking about that.  I'm talking about the residual effect Lyme has had on my body.  I'm definitely not the same woman I used to be, health-wise.  I remember reading a couple of years ago a quote from someone who said, "Once you have Lyme, you never feel the same again."  That seems to be true, even if you've finished treatment and gone into remission.

First, there are my aching muscles and joints.  Not really a Lyme arthritis.  Just achiness.  When I get out of bed in the morning, I feel like an 80 year old!  My feet really hurt, and I hobble to the bathroom.

Second, there is the tiredness.  It comes and goes during the day.  Sometimes I think I feel 100%, and then 30 minutes later, I feel like I need to lay down and rest for a bit.  It's a weird kind of fatigue.  It's certainly NOT the crippling fatigue I had during the height of my illness, when I could barely wash and dry my hair.  But it's a "come and go" kind of thing.  I just never feel energized for an entire day.

Then, there's the weight gain.  Oh my!  I've never weighed so much in my life....not even when I was pregnant!  It's funny how some people lose weight like crazy with Lyme disease, and others gain.  I know that the meds I was on didn't help - sleep meds, an SSRI, in addition to my many antibiotics.  The SSRIs, which are an anti-depressant, are notorious for packing on the pounds. 

I guess I'm a little ticked off at how Lyme has messed things up in my life, even though I'm supposedly all better now.  Yesterday, for example, I decided to go to the skating rink for some exercise and to try out my new skates.  I decided to invest a little more in this pair of skates, as I had my last ones, so I went to a skating apparel store where they could heat up the skate and mould the boot to my foot.  I just wanted a decent pair with good support, especially with the foot issues I've been having.

Now, although I love skating, I'm not a really good skater or anything!  No spins or jumps here.  I took some lessons as an adult 20 years ago, and became a lot more comfortable on the ice, learning some basics like how to stop, cross over, skate backwards, etc.  Really, I just love the feel of the experience.  So off I went to the rink yesterday with my brand new skates, happier than a bird with a french fry!

Disaster!  (Thank you, Lyme.)

After about 10 minutes on the ice, my feet started to ACHE with a pain I'd never felt.  It wasn't from the skates; they are actually comfortable.  It was from whatever is wrong with my feet now.  The ache was so bad, I went over to the players box and sat down.....and almost wondered if I'd need to remove the skates and walk in my stocking feet across the ice to get off!  It was THAT bad!  Then, I did a little self-talk, and convinced myself to just get up and tough it out.  Do a few more laps!  Maybe your feet will get used to it.  The skates are new.  You're breaking them in.  Don't be such a wimp!  So back onto the ice I went for several more laps.  But my poor feet just kept on hurting.  I got off the ice after about 15 minutes total.  What a disappointment.

So, what do I do about this?  Go to my family doctor?  Get referred to a foot doctor?  Go to a physiotherapist?  What?!  In the end, will any of them really be able to help me?  They all know nothing about Lyme disease!

That's such a huge problem with Lyme.  We always have to come up with our own solutions and treatment options.  There's no one around, locally, to guide me through this.

I guess I'll be talking to my LLMD about my poor feet.  By the way, I have a phone consult with him on Thursday to discuss the future of my treatment with my relapse.  We'll see what he says; I'll let you know.

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