Bloody Lymey

A Blog About Living with Lyme Disease

Lyme and the Mind Video ……..

Another amazing video.  Thanks, Jarryd!

 

 

While it seems like the prognosis is simplified in this video, I think it is a great illustration of the many possible ways it affects us all.

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Positive Attitude = Better Days with Lyme Disease

I had to repost this:

http://www.marcandangel.com/2011/12/11/30-things-to-stop-doing-to-yourself/

Thirty things to stop doing to yourself.

I think with chronic illnesses, it is natural to feel jealous of people who have good health. I think it’s natural to fixate on blame – blaming doctors for not finding it faster, ticks for carrying their biological warfare ….. It’s easy for us to reject new relationships because we don’t feel like we’re as much fun. It’s natural to feel sorry for oneself now and then. Sometimes we feel compelled to explain ourselves to other – why we “forgot” something or why we were unable to adequately complete an obligation of some kind. We try to “make” people understand. We look pretty good. We’re not skinny or wasting away. So we chirp on and on about the fatigue and weakness or pain or whatever the malaise du jour is.

This post, thirty things …. if I could do every single one of them on a given day, my life would be outstanding. The closer I come to doing all of these things, the better I am and the better my coping skills are.

Also, for this recovering alcoholic who is in AA – it’s a layperson’s list of a remedy for “stinkin’ thinkin’.”

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Saturday was a Miracle ….

I have had some ups and downs with my symptoms. From the summer through early February, it was mostly downs. I finally saw my doctor and was put back on Low Dose Naltrexone and my neuro symptoms got better, the arthritis is more bearable, the fatigue is way better.

I planned a surprise party for my better half and spent Saturday shopping, cooking, and dashing around to visit with 40-some people in our house. All in all, I spent about 8 hours on my feet. ON MY FEET. Does this sound like a lymey thing to do? Uh-uh!

By the time people left, I had to sit on the couch for a while with my feet up. I only required fifteen minutes. With some help -which I’m getting better at accepting – I was able to finish up. My boyfriend’s mother and sisters helped before they left. My impulse was to say “I got this,” because they’re guests. But I swallowed my pride. I needed the help – and it helps to get to know people , too. After everyone left, my boyfriend helped. I wanted to tell him “I got this, sweetie. You’re the guest of honor.” But I sucked it up. I would have helped him if the shoe was on the other foot. His son and his son’s girlfriend helped. Again – I wanted to tell them to relax since they have a 3 year old and they work and came all the way out here to be at the party. But? I sucked it up.

Sucking it up is one of the best things for helping my symptoms, it really is. And it’s the hardest.

But the fact that I did all of the things I did that day is a miracle. The timing of my doing well is impeccable. Thank God.

I had a 10-month stretch of 100% “remission.” I wish to God I knew what I did to get there. This good wave I’m having now is nothing like that, but I’m far more functional. Thank God, Thank God.

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Groundhog Day and How a Good Attitude Helps Lyme Days

Remember that movie? The one with Bill Murray?

Every morning he woke up to the strains of Sonny & Cher caterwauling “I Got You, Babe.” It was 6AM. It was Groundhog Day. Again.

Each day he encountered the same people, the same places, the same situations. Each day he reacted differently and had a different attitude. Some days he actually killed himself, only to wake up – inescapably – the “following” morning to Sonny & Cher. A daily blizzard prevented him from leaving this Pennsylvania hamlet.

I hadn’t seen the movie since it came out. And I was a much different person – pre-Lyme, pre-Alcoholics Anonymous. This year we watched it on Groundhog Day, and I saw it with new eyes.

An annoying ex-classmate came dashing toward the Bill Murray character. “Phil? Phillll? Philllll!” The man cried in an irritating voice. One day Bill Murray ran away from him. One day he punched his lights out. Another day he hugged him [not out of love, but simply to mess with him]. Another day he was decent to him. And so on. Each day played out like this, different attitudes and different approaches.

We can only live our days once. Some days I wake up feeling mediocre and I dwell on how the mediocrity sucks. Other days I wake up in horrendous pain but can maintain a decent attitude. Other days I wake up feeling fine and I feel invigorated and upbeat …..

It’s hard to control my mood when I’m feeling sick. But with a little work, any day can be a “good day.” And considering where I was before I was treated, I’m in a way better place – even if it hurts sometimes. Even if I can’t function as well as usual. But my attitude makes all the difference. Does having Lyme disease suck? Yeah, sometimes. If I have the “why me’s,” then I should wonder “why not me? Why should someone else go through this?” Today my attitude isn’t the best. My knees are killing me and I had a long meeting at work out of town today so I spent the day sitting. The lack of mobility makes my aches a little worse sometimes. Am I prone to the ‘blame game’ today? A little bit. I’m fighting it. I guess I wrote this blog to remember how my attitude dictates what kind of a day I had. I know that my body can sometimes feel like a prison, but my soul doesn’t have to be another cage or another strand of razor sharp barbed wire.

Is the glass half empty or is it half full? Honestly, it’s always full. You can’t always see air, but it’s there filling up the other half.

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Lyme Support Group Berkshire County, Western Massachusetts

Here’s the newsletter I got –

I haven’t been to any of their meetings yet, but they have been going on for some time now. They must be pretty good! I hope to get out to one soon. It’s fairly accessible to Eastern New York and Southern Vermont. It may be a stretch, but Northern Connecticut, too. Lyme Disease is a pretty lonely illness – there’s support if you need it. I know there are other groups out near Springfield, MA as well – Longmeadow area. Here’s info on the Berkshires one:

The monthly Lyme Disease support group hosted by the Lyme Alliance of the Berkshires is set to meet this month and has also scheduled meetings for March and April.

Adams Free Library
92 Park Street
Adams, MA 01220

6 to 7:30 pm

Next Meeting: Tuesday, February 28th, 2012

Upcoming Meetings: March 15th, 2012 & April 19th, 2012

I look forward to seeing you there.

Sincerely,
Kenneth

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Successful Treatments / Lifestyle Changes So Far

I was thinking about things that have helped me with chronic lyme disease so far and thought I should make a list with a quick summary. It’s important to note that I don’t think any of these things are a “cure” but they are things that make me feel better for longer stretches:

1. Diet – this was the one thing pushed down my throat the most and the one thing I fought tooth and nail to not do. I was happy slugging diet soda all day in stead of water. I was content eating more breads and carbs than vegetables and fruit. I rarely ate meat and was alright with that.

One day my gut seemed very big to me. It bugged the hell out of me. I spent the next few days reflecting on what changes I was willing to make. Here I am on the 17-day diet. It includes vegetables that are renowned for their anti-inflammatory properties. I have more energy. My gut is getting smaller.

2. Reiki – I was astounded by how well this worked. I was astounded by the lasting results. I felt wonderful and calm for days on end. I have only used one practitioner (a friend of mine) so I don’t know how to find a good one. I also firmly believe the secret is to have an open mind and not go there with arms folded and a scowl, expecting it to not work.

3. Vitamin B – this is a good antidote to fatigue if lyme disease has weakened your thyroid and it’s supposed to offer support for the nervous system. Lyme disease seems to have an affinity for my nervous system – from my sometimes buzzing legs to the nerve pain to the vertigo to the numbness in my hands and feet.

4. Antibiotics – Indeed, the treatment didn’t cure me. I am not lyme free. However, I think about where I was before treatment and where I was after, and it made SUCH a difference. If you are prescribed antibiotics, follow the directions verbatim and don’t stop until your doctor agrees to. Take probiotics and eat yogurt to maintain your digestive system’s health and to prevent candida overgrowth. Drink lots of water to help flush out the neurotoxins the bacteria emit when they die off (herx reaction). Get lots of rest.

4. Salt Protocol – I will say that I first started it and hadn’t read the directions completely and didn’t take so seriously what I had read. I herxed worse on that than I did on antibiotics. I am positive there is something to this. I am currently using himalayan salt when I cook instead of just swallowing a nasty spoonful. I’m drinking water. I do feel the motion inside me that the article talks about. (Google Lyme Photos for more information. Some of it sounds extreme and perhaps it is. But it’s worth trying. I recommend trying it to the letter and not trying to adapt the protocol to what you’d prefer).

5. Mental Fitness – and this may be the most important of all. I can’t say that I accept this disease every second of every day. But my sponsor in AA has helped me to see seemingly unlikely gifts in this situation. He has reminded me to just get through today. If I start thinking about how long it’s been or how long it’s going to be, then I could drive myself nuts. I can’t think that this is “the rest of my life” or “it will get worse”. I have to enjoy today. I have to talk and get support. There are plenty of well-adjusted people with chronic illnesses and chronic pain. They’re great to reach out to, even if they don’t have lyme disease. Unfortunately, I don’t always do that.

6. Low Dose Naltrexone – this has helped me tremendously. It is a medication intended to support the immune system and suppress the auto-immune response to lyme disease. I felt so much better initially that I cried. It’s used to treat MS and a slew of auto-immune disorders. I forgot what a help it was until there was a lapse in my insurance and I was unemployed and had gone without it for a while. When I started taking it again, I noticed the difference. It is tied in to dopamine-support.

7. Zoloft – I’m not depressed, but my primary doctor thought it would help the muscle fatige and exhaustion. It did. I feel more alive. They think it’s the serotonin-support.

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Chronic Lyme Disease ….

This is the term I’ve been using more often. I’ve resisted it for a while now.

If I talk about having “lyme disease,” then there’s the implication that I recently went for that hike and found the bull’s eye rash perhaps a month ago.

I feel silly talking about it as “lyme disease” when I’ve been treated for it for over 3 years and I don’t know when I first got it. I remember symptoms as early as 2 years prior to that.

By switching gears and using the “new word,” I am not going to lay down and let it take me out. I am simply admitting that I’m up against something bigger than I’ve wanted to admit. I’m going to keep on keeping on. I’m going to keep on trying to feel as good as possible.

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When Pain Shows….

Grarrrrr! I hate it when I’m gimpy. I hate it when my pain is noticeable.

Then comes the paradox – I love that people care enough to ask if I’m okay or what’s wrong, but I hate people noticing my pain. I bristle at the sympathy.

I went to see Stone Temple Pilots in Hampton Beach, NH recently and it was “general admission.” Nowhere to sit. I sat on the floor during the opening acts, knowing that my knees would hate me halfway through the main event.

Being hot in there, the bouncers opened the door. I could smell the ocean across the street and feel the cool damp air. It felt great at first and the air quality was wonderful to breathe.

After a while, my knees started to rebel. I alternated the weight of my body on each knee, trying to give each of them a much-needed break.

The sea air …. the sea air and standing…. woof.

By the end of the show, I was limping. Going down the stairs was a painstaking event. Gimping the three blocks to where we parked was embarrassing.

I think my pride hurt worse than my body. In fact, I know it did.

Maybe this is why my symptoms are coming and going. I have more “work” to do on myself. The inside self …. a part of me that anti-inflammatories can’t touch.

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Get Me Out of Me …..

There is no way to get out of my body, to get out of the pain. Astral projection is not feasible for me at this time. Especially after watching “Insidious.”

I no longer drink or do drugs. This is not an option for “getting out of myself.” I probably could have gotten a prescription for most anything at all, but opted to simply take more Motrin (per my doctor’s approval). My sponsor helped me clarify the fine line between what I “want” and what I “need.” What I wanted was the pain eliminated. What I needed was for it to be eased. More Motrin did the trick.

Nothing touched the nerve pain. Lyrica was on the table, but the side effects cited included fatigue and that was my worst lyme symptom. I opted to suck it up.

Sometimes, what I NEED is to get out of the lyme-induced emotional state. The best way to do this is to do something for someone less fortunate.

Having worked with the homeless, I was able to do this daily at work. Being an active member of AA, I am able to do this with newcomers or people struggling to stay sober.

In AA they suggest, “Move a muscle, change a thought.” Sometimes just going to a meeting helps. Sometimes just going for a walk helps (if my knees aren’t awful). Sometimes calling someone and saying “How are YOU?” and listening helps. Sometimes reading for a bit ….. or watching a movie ….. There are plenty of ways.

I think the worst thing for me is to sit around and dwell on how I’m feeling. It amplifies it.

Today I had a good health day. I was fortunate enough to encounter someone I knew from the shelter who needed help. I spent some time with him, listening. It helped me probably as much as it helped him. In this world we only have each other.

At night, I was home – home … what a beautiful word – with a heightened awareness. I was more aware of (and more grateful for) my son and I chasing the ice cream truck. I was more aware of the balmy evening walk we embarked on – and so grateful for it. I was more aware of cooking corn on the cob for me and my son, a nice taste of summer and food in our bellies. I could stand there in front of that boiling water and endure it … happily. I was more aware and more present when I read my son a book. I had the concentration tonight. I had the mental alertness. I was present. I was involved. I was grounded. That’s luck.

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