Bloody Lymey

A Blog About Living with Lyme Disease

Less Hope, But Not Hopeless …….

on April 27, 2012

Somewhere in this haze, somewhere beneath the joint pain is a fire. I have to reach it. A lady on facebook that I casually know posted about the importance of walking. She described her tenure working in a nursing home and how many of its residents were ladies who hadn’t valued walking and exercising, deteriorating early in their elder years. I have to get better. I just have to.

I work on the main street in our town and constantly see people cruising the sidewalks in scooters. They are overweight and have clearly become immobilized by their sedentary lifestyles. It bothers me how much time I have spent on the couch or in bed this week. It’s a miracle I have worked my hours this week – I had to work a long day on Tuesday to compensate for the mere three hours I worked on Monday, but wow. I thought I was going to die that day.

This is the worst week I have had health-wise in over three years. The arthritis symptoms are rather severe and more widespread than they ever were. Generally I can count on my hands or my knees to be achy – sometimes in outright pain. It’s now basically anything on my body that is meant to bend or twist.

My son sleeps at my mom’s on Fridays and she called me 15 minutes after I was due to arrive. I distantly heard the phone ringing, and didn’t care. The fluffy blanket, my position, and the fact that I was nearly sound asleep accounted for this complacency. My 8 year old answered the phone finally.

“Damn kids,” he huffed after no one answered his “hello.”

Mom called my cell phone. All I said was hello and she asked what was wrong.

She came to pick him up. Looking me over, she told me about a lady she knows who had Lyme. HAD Lyme. This friend of hers was debilitated for years but managed to see someone in Boston who helped her with both conventional medicine and homeopathic methods. She has been cured? In remission? I don’t want to jinx her. Oh, yeah. It’s been six years. That’s a lot better than the ten months I had in 2009/2010.

I have to get better. I just HAVE to. I have a lot of living to do. If this week isn’t some fluke, then I’m honestly headed toward collecting disability. I can’t get there. Yesterday I felt awful and was tinkering with the notion of taking the day off. But I realized that “resting” is simply a respite from feeling bad. It doesn’t charge me up. It doesn’t pay off the day after and subsequent days. It’s just a reprieve and nothing more. Coming home after finishing the day was far better for me than it would have felt to succumb to my body and stay home.

But it is becoming increasingly necessary.

Last night I rode a bike with my son. I didn’t realize how doable this is as long as I don’t attempt hills when my joints are this bad (it’s amazing what can happen with a hill – we have to grip the handle bars more tightly, we have to exert more with our legs and this leads to a bit more resistance, and then it gets in my shoulders and elbows from holding on tighter……..). I never thought about the minimal impact compared with walking.

I’m going to try to ride the bike every day. Even if it’s just for a couple of minutes. Just something to get myself moving. I’m also going to try to get the name of my mom’s friend’s doctor(s) in Boston. This just isn’t working anymore and what ever it is, it’s progressing.

Chronic Lyme? Post Lyme Syndrome? I don’t know. Both terms have been thrown at me. What ever it is, I’m not taking this lying down.


6 responses to “Less Hope, But Not Hopeless …….

  1. A low-impact exercise activity that I enjoyed when I was very sick was taking water aerobics in a warm water therapy pool. The Arthritis Foundation has a neat aquatics program in which instructors at pools around the country have been trained how to teach the exercises. You might want to check it out and see if there’s a class available near you.

    • Becki says:

      That sounds awesome. I will have to check it out. A friend of mine with RA swims a lot – almost obsessively – so I’ve had this in the back of my mind. I think my pride and being seen in a bathing suit might be what’s keeping it from reaching the FOREFRONT of my mind, though. That’s kind of lame, isn’t it?

      • It’s not lame at all. I felt the same way. Lucky for me, I was the only person in my class under 50. It was a small center, with the dressing rooms really close to the pool, so most of the ladies would sort of rush out of the dressing room and get in the pool right away so no one would see them! You can also get jackets (and I think pants, too) that are made out of swimsuit material to stay covered up. My mom likes to wear a jacket in the pool so her arms don’t get a lot of sun.

      • Becki says:

        I just used to be SO athletic. I think my hikes and mountain-climbing were what did me in. ๐Ÿ˜‰ Well, maybe this will embolden me! Thank you. ๐Ÿ™‚

  2. Your fight is admirable and I look forward to the day I can walk down the stairs of my house and walk around the block. I did this in February for a few weeks before I relapse. I am jealous that you work as I miss my 19 years spent in a pediatric office watching kids grow up. I have no ability to drive yet and last 3-4 hours without needing a nap and am up every 2 hours at night as Lyme is what it is. I fight every day to stay out of bed. Facebook is my connection to the outside world of old friends, new lyme friends and family. I still try to spend only an hour here or there on it. I want to let you know that the LD I am now being referred to is in Watertown, Dr. Jean Hubbach and she understands the holistic side of treatment. Other than her, Dr. Sam Donta is on the Cape and I don’t recommend him. I would love to know if you get another name as I haven’t made my appointment yet. My LLMD for over 3 years is still on medical leave. Best wishes for continued perseverance.

    • BloodyLymey says:

      Thanks for the feedback. I count my blessings that I am able to work. I am working 30 hours and am so grateful for the flexibility my boss affords me. The company I work for helps people with disabilities, so thankfully they are understanding. I get scared when I get this bad because our parking garage is rather far from the office and our office is on the fifth floor and down a LONG hall from the elevator. Our parking area in the parking garage is on a ramp so it is the farthest point from the elevators. Sometimes I have missed work simply because I could not make this trek – never mind the workday itself. I saw Dr. Hoadley in Longmeadow. I have mixed feelings about her since my PCP (who is VERY smart) doesn’t like the duration I spent on antibiotics. She warned me about body function, antibiotic-resistant bacteria, etc. She kind of kept me on Ceftin, too, so I’m not sure how helpful it was. Though I was in her care during my 10-month period of remission (well, until she “graduated” me and we thought we “got it.”) When i get another name, I will post it here. A lady with 6 years of being lyme-free or simply free of symptoms is inspiring. I’d settle for 6 years. LOL.

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