37 and counting

Tomorrow will mark 37 times I have ridden the cosmic orbit around the sun. That sounds so much better than saying "I'm 37."

I have come to care very little about my birthday in recent years. This year I seem to be reflecting about it more. Maybe this is because there is so much happening in my life. I'm not sure. I do know I appreciate the well wishes, prayers and the chance to pamper myself even a little.

Earlier today (after gagging on a nasty medicine) I was thinking about how sick I am of taking 15 medicines twice a day (I just counted for the first time tonight --- and this doesn't include as needed things). Then I shifted that thought to, "I am so lucky to have a condition that even has a possible treatment." That shift in thought is a great example of the intention I have for this next rotation around the sun.

I have always loved the Gandhi quotation, "Be the change you want to see in the world." I think I will make that even closer to home. "Be the shift you want to see in your life." It's really time. Let the shifting begin.

My goddess fairy sister gave me the most lovely birthday card tonight. These words she wrote sum up my intentions for this coming journey, "I am wanting one thing for you this year -- to be yourself, fully well." Fully well -- my time is here! Yippee. 

Flexibility and Fluidity

Flexibility and fluidity have never been my strengths. I want firmness. I want to know what has happened, is happening and is about to happen.

I haven't had a crushing headache for a little while and I wanted it to stay that way. I was feeling stronger and happy about my little accomplishments. I wanted that theme to continue into today. Today was a day with no commitments, sunshine and even some energy. That was the plan for today. Get the house cleaned, have free time to pamper myself and then have a date with my husband.

I spent time in the garden. The house did get clean thanks to the help of my wonderful teenage daughter. (Never mind that I have to pay her for her cleaning services) I went for a walk around the block with the dog (first time around the block in as long as I can remember). I had a yummy lunch outside. I laid in the hammock with the kitty feeling the warm sunshine on my face. But since then I have been laying in bed zoning out of re-runs because I have a mind-blowing headache. Just the pressure of my feet touching the ground is too much. It is to be expected I guess. I increased my dose of medication last night. I had been getting sick when I did this over the last month.

(Here comes the "but" and the anger.) But, this didn't happen last week when I increased my dose. This isn't supposed to happen anymore. I am suppose to have a day of feeling good and enjoying my day off -- right?

"Okay Faith....get a grip. You have a choice. You have laid in bed so your head didn't feel like it was going to explode. You are bored now and getting out the baseball bat to bloody yourself. This is not a good decision. You said the bat was retired. Get up and go check on the diabetic cat in the kennel that isn't eating, do your evening prayers and do something special for yourself in the last hour of the evening. You have a sauna and hot tub. Use it!"

Hmmm. It sounds like I should listen to that little voice. She sounded pretty powerful.

It is okay that there was a blip today. It was still a good day. Just cause' the f-ing headache returned today doesn't mean it won't leave. This is no step backward. The body is still healing. I need to just go with the flow.

I guess I can choose to go with the flow or I can kick and scream and be taken downstream anyway. I think I will choose the flow. Time to get up. I'll fake it and make it if I have to.

SHOUTING about accomplishments

I have often found it easy to see what is not done or what I could do better. This perfectionism which leads to self-flagellation is really no longer serving me. And inevitably once we get tired of beating ourselves up with words and thoughts we turn that negative attention outward towards our loved ones.
It am ready for a change in this oh-so-old behavior patten. It is time to celebrate the improvements even when they seem ever so small.

1. I HAVE ENERGY! I no longer have to take a nap in the morning. (This is a huge accomplishment!) I used to get up, shower, do my morning meditation/prayers, take medicine, make lunches and get my daughter off to school and then I would have to lay back down for 2 hours. Now I can make it until about 2:30 p.m. without collapsing into the heated bed.

2. MY MEMORY EXISTS! My memory seems to be getting better. I am still very forgetful but at least I am not routinely forgetting what I am saying mid-sentence. There was a funny lapse of memory yesterday that is worth repeating. I had bought a container or lettuce and spinach starts at Down to Earth. I asked my daughter to get them out of the car. I couldn't remember the name "plant starts" and instead said "earthy growy things." At least I made her laugh. I find comfort in knowing my lack of memory and choice of words can be of social service to others.

3. THERE IS SPACE IN MY HEAD FOR THOUGHTS! I no longer have a crushing headache 24 hours a day that fills every corner of the head with pain leaving no space for any thinking or functioning capacity.

4. NO MORE HERXING! I don't have a fever and flu-symptoms when I take my medicine.

5. THE BACTERIA IS DYING! When I increase my dose of medication the pain is not so bad that I have to be in bed for 2 days.

6. GETTING STRONGER! I can walk to the end of the street (most days) without feeling like I need a wheelchair ride back. Next step -- a yoga class.

7. MOVING FORWARD AND SEEING IT! People see me and say, "You look so much better." At first I wanted to respond by saying, "But I feel like shit." Now I can see that I am better in many ways.

8. CALM! This week I am not having panic attacks that last all day.

9. PINK SKIN (or at least my normal olive skin tone)! My skin color is not so pale that it makes people want to call 911.

10. STRENGTH IN CONSTITUTION! I can stay upright for more than 2 hours without feeling like I am going to faint.

11. FIERY! I have enough energy to actually get mad and fired up about something (sometimes).

12. GARDENING! I can weed the garden for a few minutes before my thighs start to protest.

13. THE MEDICATION IS WORKING! I have pain in my body and a worsening of symptoms sometimes in relation to my medication dose, which shows it is working and the Lyme bacteria are dying.

14. SURFER GIRL! Instead of focusing of having nightmares about being sick the rest of my life I am visualizing being strong enough to paddle out into the ocean and ride a wave! Look out world...Faith's gonna be a surfer girl!

15. PHYSICALLY STRONG! I have a physical goal to work towards and I am extremely excited about it! I am going to cut out pictures of female surfers and post them everywhere just in case I get discouraged.

16. WORKING! I actually work 40-45 hours a week between my job as a nurse and a kitty kennel owner. I am tired in the evenings but not feeling near death.

17.  GETTING PAID! Working my regular schedule = earning my regular pay. This means I won't cry when I see my bank balance at the beginning of the month.

18. I AM HEALING! EVERY DAY IS A STEP FORWARD!

I decided to SHOUT my accomplishments. (I have been reminded of how fun this is from watching the Italian baker family on Cake Boss. Netflix in the afternoon is how I distract myself when I feel icky.) Why not shout? I'm half Italian so I have the right to shout as much as I want, even about the good stuff. Hmmm. Now I am imagining climbing to the top of a mountain SHOUTING about how strong and healthy I am. This is a lot more fun then getting out the bat to beat on oneself! I will continue to make the conscious effort to retire the bat and keep it in retirement. It's about time!

Can I have a cup of energy please?

Earlier today I felt like I had a little energy. That feeling has exited as quickly as the air releases in a balloon. Now I feel like I am carrying an extra 100 pound weight as I try to move about the house. Everything hurts.

I thought a little rest in bed with the laptop would rejuvenate me. Wrong. When am I going to learn the laptop shouldn't be my partner in bed? I think it is my attempt to "zone out." That works sometimes, but not when I am really exhausted. Truth be told, nothing works when I really exhausted and in pain. I should re-phrase that. In the past nothing has worked, but in the present there are endless possibilities.

I just got up to let the dog out and suddenly realized I had left the milk sitting in the car for the last two hours. Oops. Hope it is still good. It felt cool still. Once I let the dog out I thought I would take the trek to the mailbox and then get the milk. That journey has resulted in another rest on the couch. This time with the laptop to do a little blogging.

This would be a perfect time for a cup of strong black tea or coffee. Except I have been abstaining from those items to give the adrenals a break. Maybe the adrenals have rested long enough. That is a great idea but it seems doubtful. I could also use a nice cupcake or donut or maybe even some pie. Abstaining from those too. So boring.

Okay, I guess it is time for me to put down the laptop and to dig deep into that self-care list to find something that is rejuvenating. I'll start by ending this complaining session with something to be grateful for. Hmmm. I am grateful to have excellent hearing so I can hear the symphony of birds outside my window. They do sound delightful! I guess that is a start in the right direction.

Surfer Girl

My childhood memories are surrounded in water. I swam in Fishing Bay (while living on Elliott's Island, MD) as early as March and I remember getting in the Atlantic Ocean at Rehoboth Beach, Delaware in April. I would stay in a pool from sun up to sun down if it was impossible to get to the beach that day. If I needed to feel my body's strength, to relax, to have fun, to be alive --- I would get in the water (especially the ocean).

Since getting sick in the mid 90's I have not been able to get into water that was not very warm unless the air temperature was over 90. I have watched my body get weaker and weaker. My time in the water has been limited to hot springs and hot tubs.

Hot water is nothing to complain about, and I am blessed to have the means to immerse in hot water whenever I want to. That said, I long for those days when I could stand in the ocean feeling strong and powerful.

Since starting the treatment program for Lyme Disease I have thought I wanted to set a physical goal to work towards, something to focus on other than how sick I feel most days. I have thought of various things -- walk a half-marathon, climb a mountain and/or go backpacking. All of that sounds great but none of it has felt like the "shining light" that I have been imagining that will keep burning and reminding me why I am going through this.

Today it came to me so very clearly. I want to learn to surf. I want to be strong enough to put on a wetsuit and paddle out into the Pacific Ocean. Now for those of you that are fearing for my life or think I have lost my mind, please know that I have a plan. My husband has surfed for most of his life. We have a wet suit and a surf board that would work for me. I would even like to travel to Mexico (never been there) and start with lessons in a bathing suit (before I have to put on the extremely thick wet suit that makes me claustrophobic). Then I can venture up to the Oregon Coast's frigid and rough waters.

To even think about being that strong is both exciting and terrifying. For now I will take baby steps. Continue to walk every day even if 10 minutes is all the energy I have. Keep doing gentle yoga at home and work up to an actual yoga class. Start dancing again. First in front of the Wii with my daughter and maybe eventually a NIA class. Then, longer endurance and a stronger core --- bike riding, swimming, core strength building exercises.

The plan is there. I just have to keep seeing and believing it. It is possible. Although some days are still really hard, I get glimpses of having a little more energy. The doctor said this would happen. "Your better will start being a lot better as you improve. The hard days won't be as hard." I look forward to this and can see it beginning to happen.

I remember being 19 years old walking home along the beach at 10:00 p.m. under a beautiful moonlit sky. The Atlantic Ocean was glistening and so inviting. I had swam it that ocean since I was a infant. I respected her and knew her so well. I remember being entranced that night and swimming by myself as others watched in amazement. I also remember swimming with dolphins at sunrise and barely escaping the razor's edge of the jetty because I didn't want to say goodbye. I remember those days and long for them. I long for the salt water in my ears. I long for the feeling of sore muscles that doesn't mean I will be incapacitated for days on end.

I am excited to explore the ocean again. This time in the cool waters of the Pacific. An ocean that I don't know in the same way I knew the Atlantic. Her fierceness will require amazing strength and trust and intuition. I have to believe in myself. It will be a journey. Definitely something to look forward to.

Snakes and Roses

The snakes of depression, anxiety, hopelessness seem to have slithered into my life again. They have come many times over the years. Sometimes the bite is severe and other times I can just be aware of their presence and somehow manage.  To be going through Lyme treatment and the associated side effects of the bacteria dying in the brain at the same time as my week of PMS (when the snakes like to come) feels like too much. I wonder if finally I will get bitten by a rattle snake and be put out of my misery.
Then the reality hits that the snakes are not really there, nor is the misery. There needn't be a cure for an imaginary snake bite. All I have to do is remind myself again and again that I am still the same person this week as I was last week. I just happen to be living in a "as though" snake pit at the moment. I know all the cliches, "This too shall pass. Look on the bright side." Blah, Blah, Blah. I can even one up that since I have been studying Vedanta for years. "You are the limitless happiness that upholds the sadness." I have the same response. Blah, Blah, Blah. I know on weeks like this it is just about survival. Putting one foot in front of the other, staying as present as possible, self-care, etc. When you feel as if the giant cobra snake is squeezing the life out of you self-care just doesn't seem feasible. I think I have to do more than just have an intention to use the self-care tools I know that have worked in the past. Drastic times call for drastic measures. I think it is time for a list....

1) Make fresh herbal tea from the garden
2) Pick roses (focusing on the beauty and not the black spot)
3) Lay in the hammock and read or just listen to the birds
4) Sauna and hot tub (since I am blessed to have both)
5) A leisurely walk with the dog
6) A trip to the rose garden with my daughter
7) Call my friend to help me buy flowers and plant them in my two empty beds
8) Listen to inspirational guided meditations
9) Gentle yoga
10) Back Flower Essences
11) Finally open the deck of inspirational cards my co-worker loaned me
12) Pray in the beautiful shrine that happens to be conveniently located in my backyard
13) Make lavender wands with my daughter
14) Fill in a mandala in the coloring book
15) Pick fresh herbs to dry
16) Make yummy food from the fresh veggies and herbs in the garden

I must say I feel calmer and less "snake infested" just typing this list. That was the goal. Now time to pick something of the list!

How Many Spoons Today?

To answer that question, I am very low on spoons today. I will explain that in a moment, but first a little aside. 

My husband sent me this picture as a present last night. I have always associated Borage with one of it's medicinal qualities - courage. Borage for courage. I can use a major helping of that today!

I started writing this post last night so I guess I will go ahead with it. Not inspired to write today.

It is interesting how many people tell me how much better I am looking lately. On one hand that is encouraging. Apparently for months I was this awful pasty color. It is nice to know I look alive again. 

One thing to remember is just because someone looks "good" doesn't mean they feel good. It may mean it is better day or it may mean they are just really good at faking it. The longer one feels sick the better one gets at faking it, especially if your "lousy" is still lousy but a little less lousy than the lousiest of days.

I recently was gifted with a story and an analogy that I related to so much. It is called the Spoon Theory. Please check it out:  http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I like that the website is called "But you don't look sick." I can really relate to this. There are some days that it is so obvious how I feel, but most of the time you probably wouldn't have any idea. This is both a blessing and a curse in some ways. In the healing process I am coming to both accept this body as it is and also visualize it doing things and feeling ways that I haven't imagined in years. I like to visualize walking a half-marathon or climbing a huge mountain. Heck, walking for more then 15 minutes would be just as big an accomplishment at the moment! I know I will get there. I just need to have patience, visualize this treatment working and trust the power of this body to heal.

I must say that the Spoon Theory (which uses spoons as an analogy for energy) has given me great language to refer to the amount of energy I have. One day after I spent an hour arguing on the phone with AT&T when I was supposed to be resting, my husband called and said, "Honey, you don't have enough spoons to go wasting them on AT&T. Now get some rest." That still makes me smile.

That is the thing about chronic illness (of any type). You can't just push your body to the limits and expect energy to come or to rest up tomorrow. Once you are out of spoons (energy) you are out. And if you borrow from tomorrow then you could end up in major spoon debt. Apparently that is what I was in the last few months. A wise Hindu monk recently shared this story with me including that I was in spoon debt. Immediately I started noticing how much energy it took to get up, to take my medicines, to shower, to make breakfast and lunch. By the time all this was done I had to lay down and rest. If I didn't then pretty soon I was halfway through my spoons for the day and it was only 9:00 a.m.! 

I think the Spoon Theory has helped me to see the reality of what my body can do right now and how to work within it's limits. For that I am thankful. At the same time I am constantly envisioning when I will have limitless "spoons" again and be able to run, walk, bike and just play without thinking about it!!!