The Mindful Lymie

The sun is shining. The air is warmish. April has left all the fools behind and now we can release a collective sigh…. Ahhhh. Spring will arrive!

With the advent of Spring, I’m always eager to try something new and/or clean up my past. I was lying in bed thinking how I’m so tired of not creating anything. I want to watercolour, scrapbook, collage, and write poetry. I sign up for online classes hoping they’ll motivate me. When I have the energy, I attempt to create but cannot find the focus and give up after a few minutes. Or I quickly become fatigued or uncomfortable. Or I have the focus and motivation but not the energy.

I’m not alone. I belong to a few Facebook groups for people struggling with Lyme disease. The question of how we spend our time has come up in conversation before. I had an “aha” moment this morning.

  1. I need to find a way to create. Even if only for a few minutes a day.
  2. Creativity is an important part of healing.
  3. Other Lyme sufferers need an outlet for creativity but face the same limitations as me.

So, I’m starting a Facebook Group called “The Mindful Lymie“. Each month I’ll have a list. Each day will have a prompt. Members of the group will then take the prompt and create something. Anything! A poem, a photograph, a sentence, a collage, a drawing, or even a Facebook post. It really doesn’t matter. The purpose is to take a few moments a day to make something new, to focus on possibilities, and to express yourself. Creativity is not about being a great artist. It’s simply about making something.

I’ll encourage members to then share whatever it is they created. Or to even just talk about whatever comes to their mind regarding the prompt. We share similar struggles but most of the support groups are about symptoms, treatments, and advocacy. All very important issues that don’t leave a lot of room for anything else. Creativity is a great way to express feelings, struggles and pain. It can be cathartic, joyful or just plain fun. At the very least, it can be a distraction!

Here is the April list of Prompts.

Here is my attempt for April 2nd.


So, if you or one of your family or close friends has Lyme disease, please join my group, the Mindful Lymie!

Getting Ridiculous!

It wasn’t that long ago that I found out that my MSIDS (Multiple Systemic Infectious Disease Syndrome) was a large contributor of my crazy dreams. Ok, I’ve always been a vivid dreamer but the past couple years my internal dream machine has been thrown into overdrive. My theory is that the more boring my life becomes because of this debilitating disease, the more my dreams try to make up for it! I’ll spare you the details. I need a switch to turn that stuff off!

 

I woke up this morning blogging in my head again. I’m trying to remember what exactly I said. Something about hatred. A friend recently posted on her Facebook wall about the nature of hatred. My takeaway was that hatred is when you wish something did not exist. Ah, that’s right, I was thinking about something I hated. Now what was it? Cicadas! Yes, I realized that I don’t actually hate Cicadas. I just hate their sound. If they could exist silently, I’d be a much happier person. I had this thought upon awakening because the constant ringing in my ears reminded me of Cicadas. 24/7 Cicadas. I do hate tinnitus.

I spend a lot of time talking about dreaming, waking up, and napping. I sense a theme, don’t you? My life revolves around sleeping. I tried to stay awake all day. I sat on my closet floor organizing clothes and stacks of paper that have been tucked away in bins for far too long. It felt good to take on a task. I keep hoping I’ll slowly declutter and clean this house inch by inch. After I quit my task (note, I did not say finish or complete my task) I went to run my bath water. I grabbed the bathroom cleaner and a sponge and scrubbed the baseboards and tiles as the tub filled. I didn’t even care that it made my body ache because I knew I’d be soaking in the tub. It occurred to me that this was a great way to get things done. I’m going to be more mindful about how I can accomplish tasks in small time fragments.

I caved by mid-afternoon and napped away the rest of the daylight. It was a good sleep at least. Now I am going to plan out the goals I’d like to achieve this week. I won’t schedule specific time for them as I can’t predict when I’ll feel up to the task. That just leaves me feeling tense, agitated, and frustrated. Instead, I’ll keep the tasks in mind and dedicate moments when I can.

It’s all going to come together! I just need to reframe how I view my life. Things can get done and I can feel useful again. It’s just a matter of readjusting my outlook. Wish me luck!

Well, that wasn’t fun!

The morning is almost gone and I had no idea. I developed a bad headache yesterday. Nothing new. I almost always have a headache to some degree. It worsened with every tick of the clock. My sleep was spiked with unbearable pain. While drifting from dream to clarity, I pondered what deems pain unbearable? What is a pain scale? If 0 out of 10= no pain, then is 5 a lot of pain or just a regular headache? Is 10 the worst ever pain or just a migraine? Can you go off the scale? Is it subjective? What are the RULES? I decided I was off the scale and wondered if a hammer would end all my struggles. Around 4am, I wanted to go to the kitchen and get a drink of water and an ice-cold pack for my noggin but I couldn’t move. I needed to not move. To stay in the same exact spot and try not to anger the headache god any further. I did however manage to grab my phone from the nightstand and text my husband a plea to not wake me at 7 and to get the kids ready and on the bus for school. There was begging involved. Why did I text him, you ask. I was sleeping in my daughter’s bed and she was sleeping on her pretty awesome new fold out bed mat thing next to me on the floor. Dysfunctional household? Perhaps. Let’s not judge.

My dear husband respected my wishes and even brought me a cold pack, coffee and medication. At some point I found my way back to my actual bed and propped my neck with a bean filled neck rest and a cold pack, sipped the coffee, swallowed the meds (which I doubted would help), applied another cold pack to my forehead, pulled up my divinely soft and warm blanket over my cold and clammy body and drifted off to sleep. Right before unconsciousness I questioned where my eye mask went but darkness quickly overcame me before I could answer the question.

I woke up and was disgruntled that I hadn’t slept. I was certain it was only 9:30. My headache was down from some ungodly number to what I would call an “8”. Progress! I was so snuggly in bed but needed to get up and feed my belly to keep the headache away. The clock read 11:03. What? Wow, I can’t remember when time passed by without my being acutely aware of it. No wonder I felt refreshed.

What is weird is that when I awoke I was writing blog posts in my mind. Words were flowing so fast and freely. Instead of attempting to put them down right now, I’m instead telling you a more mundane story. I don’t really have a good reason why. Just describing my morning.

Now I’m not completely off the hook for feeling “better” now that my headache has settled down somewhat. My hands are shaky. Perhaps from the medicine I took? Now let’s be clear. It wasn’t strong meds. It was two Tylenol and a sinus pill. It was only half a coffee. All of which were taken hours ago. I’ve eaten food. But the shakes are not leaving. I had a bath (standing in the shower was too much effort) an hour ago and feel nice and clean but I’m still sweating. My upper lip perspires constantly. It’s the damn Babesia polluting my body.

Oh, and did I mention why I think my headache was so intensely rotten? I started a new medication to treat my bartonella. In my usual half aware state, I took the full dose yesterday. I’d forgotten that I’m supposed to gradually increase from 1 drop to 10 drops over the course of a couple weeks. The adverse effect of taking too much at once? A Herx. That means the medicine worked so well, it killed off some of the illness but too much too fast and left me reeling. That’s my layman’s explanation anyway.

Ok, I’ve reached the point where I need to put the computer away and rest.

And as always, a picture for all your trouble. Until next time, take care….

Books | Melanie Ritchie

Books I’m attempting to read this week.

How shall I use my spoons today?

An average healthy person has unlimited energy in a day, assuming they eat well and take breaks now and then. Let’s say a spoon is required for each act they perform. They’d have more than enough spoons to get them through the day. An unwell person has limited stores of energy and must make conscious choices on how they will use their small stash of spoons.

This morning I feel like I have a million spoons! How awesome is that? I know! However, from experience I know that feeling will change almost without warning. I’m sitting here trying to decide how to use my spoons. I was slightly tempted to go to the store but I know that will use up all of my spoons and I have a list of things to accomplish this evening. I have to ration my energy. Ok, so what can I do that will only slightly deplete my energy? I signed up for an online watercolour course by Mindy Lacefield so maybe I could finally sit at my craft table and put brush to paper? Or I could get some computer work done? Or I could try to tame the mess that is taking over my house and choking my sanity? No way… that one would put me out for weeks! Ugh, what to do?

http://www.publicdomainpictures.net/

I gave my 16-year-old long haired tortoise shell Persian cat a haircut the other day. She hated it. I hated it. It had to be done. She had matted hair because she refuses to be brushed. She must have been relieved because she’s been at my side ever since. She keeps pawing me for my attention. I cut her nails too but they keep digging into my arm. My arm is bleeding. I really wish she’d stop. I can only pet her so many hours of the day. It’s incredible that she wants my attention so badly. Usually she sleeps in her cat bed 23 hours of the day and our 1 year old cat vies for my attention. I love her but she’s driving me batty! Not only is she pawing me to possible death, she’s also drooling on me. Poor sweet Chloe!

Chloe

I’m so clumsy. Soon after my Lyme disease symptoms appeared (long before a diagnosis) I began to lose my grip. Jars, cans and objects would fall from my hands. I thought things weren’t as bad now but maybe I’m just used to it? Things don’t get placed where I am aiming. Cups fly across the room or crash to the floor when I was simply setting them on the counter. Today I managed to spill tomato sauce on the counter, spill spoonfuls of rice onto the floor, and send a bag of dates flying out of the fridge. All before 8:30am! I’d keep a safe distance if you see anything breakable or heavy in my hands. It is frustrating.

My mantra has become “it could always be worse, much worse”.

Chloe has finally settled into sleep on my left hand. I can still manage to type, mostly. I’m just relieved she’s not scratching me. Her scratches are itchy. I should buy stock in Polysporin. I’m not too worried about infection because I’m already on two antibiotics and several herbal supplements. I am already fighting Bartonella (cat scratch fever) that I acquired from the tick bite. Kind of a bonus freebie for when I got Lyme. I also got Babesia and who knows what else….

Well, I’ve come to the end of this post and I still have energy! I thought this activity would take up at least a spoon! Ok, onwards… let’s get some $#!% done!

The night is still aglow with light

This morning I awoke to the rush of my husband’s footsteps as he dashed to the basement to see why we had no water pressure. He got as far as the light switch when he realized the issue was a lack of power. The ice storm caused a power outage in the neighbourhood. He escaped to work and the kids and I took the opportunity to sleep in. The power came back on mid-morning. Yay, power! Out here where we live, that means flushing toilets! It also meant coffee!

Winter | Melanie Ritchie

I also awoke with a migraine. Tonight I felt really horrible. Nothing would make the hammering pain in my head go away. My ice pack had thawed twice. The tylenol I didn’t want to take did nothing. My other medicines were making me nauseated. I had no energy to do anything and trying to sleep just felt painful.

I was lying there for hours and then I decided I’d make some tea. Once downstairs I thought I’d enjoy the lights of the Christmas tree. It’s still up because I haven’t had the energy to take it down. I had just enough energy today to make the kids lunch and a Swirlio (ice cream out of nothing but frozen fruit). So, now I’m on the couch enjoying my tree even though the festivities are winding down. I was too lazy to wait for the tea to boil so I’m having a V8 instead. A small cheat in my diet as I’m not supposed to have tomatoes (nightshades). I took my chlorella pills and I’m hopeful that sleep might come to me soon. For the first time today, my headache is aching less.

Today I had hoped to get a few chores done and to play a couple games with the kids. They got a cool Lego toy I wanted to build with both of them. Luckily, they were in a good mood and played together nicely without me. I spent most of the day in bed while they chatted with me before disappearing to play another game with rules that only they understood. I was supposed to go out for dinner with a friend but the weather worsened (I didn’t think it could!) and it was better that way because I would not have been good company!

While I was lying in bed I was thinking about my “to-do” lists. My council work, my design work, my house work, and my personal work. At this moment I don’t know how I’ll get back to my council work. I can’t even wrap my head around the things I need to tackle. Right now reading  a recipe feels like learning a new language. Simple emails feel complex. My design work I’ll worry about next week. My house work, oh dear, my housework. That is a never-ending story. My personal work… I’m itching to get started on One Little Word, to paint something, or to digitally scrapbook a page (I’m not up to making a paper one). I can’t decide what word to choose to work on for 2017. I thought about “heal” but am also considering “rest” or “pause”. I just don’t know. Too hard to think about.

Oh, and I really really really want to take a bus to the Women’s March on Washington in a few weeks. A group from Ottawa is traveling down to the march and  coming right back afterward. Since I find making lunch to be a completely energy depleting task, I’ve decided I’m probably not up for the trip. I hope the March is a success. There is so much that needs to be done.

I think I’ll try that sleeping thing again. Nighters!

 

So, that’s what happened.

In the Spring of 2013, I decided to plant a Japanese garden in my back yard. The mosquitoes were bad that spring. I remember having several large bites and even asking a pharmacist if they were bull eye rashes or just large mosquito bites. I was told I just have a mosquito allergy and to use Benadryl. I also had a sore and hot red mark that I thought was a spider bite. First it was just a red bite mark. Then it was hot and had a little black speck in it. Then the black speck got bigger. Finally, I scratched it enough to pull out a little teeny weeny spider. No, I did not. It was a tick but I didn’t know that then.

That summer I thought I had a “summer flu” that never quite went away. By the end of the summer, I was exhausted. Just an average day of activity left me lying on the bed by the time the kids were ready for their evening bath, I’d have chills and flu ache. I’d wake up drenched in sweat. My nightgown would be soaked. The next day I’d be even more exhausted.

One day at the end of summer I went to Niagara Falls for a couple days. I was feeling very tired and anxious. I’ve had anxiety for a number of years so I just assumed it was the drive that scared me. I get anxious in cars since I was in an accident a decade ago. At dinner with my friend and her visiting family, I began to have a panic attack. I’d never had one before and it was truly terrifying. It does feel like you’re dying. My heart was racing, time slowed down and I did everything I could to stay calm and focus on my breathing. I had no idea what was happening. I tried to act normal (my version of normal) as though everything was okay. I was confused because I was enjoying my dinner. There was nothing overly stressful about the occasion. I thought maybe it was due to my low iron. I was also beginning to experience shortness of breath, chest pains, and heart palpitations. I wondered if maybe it was all part of the anemia. I’d even read that anxiety can result from anemia. So I kept popping my daily iron pill.

The fatigue, chest and heart issues, and malaise continued. I had an annual Physical in the fall. I tried to tell the doctor about my various issues but got cut off. She told me I was only allotted 20 minutes and that included the examination. I said “but I’m only sharing everything because I thought maybe you’d see a pattern in all the symptoms.” She said “ok, tell me one more and then we’ll move on”. Um, ok.

I was feeling so guilty. It was my last year with my kids at home. My daughter was in half day kindergarten and I had all morning alone with my son. I wanted this time to bond with my son. I thought we’d make crafts and play games. I’d make his alone time with me special. Honestly, I think most of those mornings, I napped while he watched TVO cartoons. He didn’t mind because he got to watch his choice of show without his sister arguing with him. He’d try to learn from the shows as they were educational and he’d ask me all sorts of questions and I’d try to hold a conversation with him in my half-asleep stupor. We did occasionally paint, make crafts, scrapbook (his favourite) and play games but not nearly as much as both of us would have liked.

My little guy | Melanie Ritchie

My little guy during my first year struggling with the onset of Lyme disease.

At the same time I was becoming more focused on the increasing pain in my left knee. I could barely walk on it. The leg would give out. I wondered if I’d twisted something. It wasn’t until I felt a lump on the underside of my knee, that I went to see the doctor. She couldn’t see what would be wrong but agreed I should get an ultrasound. The lump was a lipoma and after seeing a specialist months later, I was told it did not need treatment and it wasn’t likely the cause of my knee pain.

Despite all these issues, I did manage to have a lovely vacation at Disney World with my family. It was exhausting and wonderful, all mixed together!

Disney World | Melanie Ritchie

Somewhere in that winter, I also went to the doctor about the possibility of fibromyalgia. Or maybe celiac disease. Or whatever might be the cause of my issues. Fibromyalgia was dismissed as I didn’t have all the “tender spots”. The doctor didn’t want to test for Celiac. I can’t remember why. Later that year, she did put me on a Gluten-free diet when I said I was still having the same issues.

I also visited the eye doctor about the sudden onset of migraines. I’d get multiple auras in a day over the period of a few days, every few months. I felt a lot of glare all the time, and found night driving difficult. Everything seemed too bright.

I had career ambitions and was working on various plans (teaching online classes, designing, and illustrating). Again, I felt such guilt. I couldn’t concentrate on my work. I couldn’t focus on writing proposals. It was a miracle I was able to accomplish the things I did finish. I felt like I was ruining my reputation with some colleagues I deeply respected. I’d been dependable up until now. Why couldn’t I get my act together?

The chest pains, breathlessness and feeling of vertigo and dizziness worsened. In the Spring of 2014, I went to see my doctor and he told me I’d tried very hard to manage my anxiety without drugs (counselling, meditation classes, etc.) but I really needed to take medicine to help me get to a place where I could cope. Then when I was less anxious I could wean off the drugs.  If the drugs didn’t help the anxiety, we’d know it was something else. I agreed. I had a variety of side effects but I knew that was common so I wasn’t too concerned. I’d been warned I’d get very tired and have hot flashes. No problem, I could handle it and I did. For the next two years, I accepted that my quality of life was diminished due to my fatigue. I accepted it because the drug had helped with the anxiety and the chest and heart symptoms were almost completely gone. I figured the issues must have been anxiety all along.

My kids were both in school full time the Fall of 2014. It was my first time with the house to myself in 6 1/2 years! I was sad and excited… bittersweet. I was sad that this phase of our life was over, but I was excited to be able to focus on my art, and to have a moment to myself. I had so many projects I wanted to finally take on and complete.

Instead, I slept. I couldn’t help myself. I’d try to pick something to do and I’d dive right in, get exhausted, take a “quick” nap, and find myself waking up just in time to get the kids off the bus. I was designing digital art during this time and writing blog posts. I wasn’t completely inactive but I wasn’t doing nearly as much as I had hoped. Every deadline was a struggle as I fought to keep my eyes open and see through the brain fog to brainstorm new designs.

In the Fall of 2015, I decided to become more active at the kids’ school. I became co-chair of the School Council (PTA). Some days I did my design work. Some days I did my council work. Often, I napped. I’d forgotten what life was like when I had energy. I assumed it was the anxiety medication. I assumed it was turning 40. I assumed it was sleep deprivation from having kids. Too many assumptions.

In the Spring of 2016, I felt I couldn’t do my design work anymore. I had tried to work on my proposals for other work projects. I decided to hold onto one small job I do every month. I wanted to be “present” for my kids in the summer and I couldn’t be juggling work and parenting.

It was then that my Mom mentioned reading Ally Hilfiger’s book “Bite Me“. She said Ally’s struggle reminded her of me. So I got it out of the library and read it too. All the pieces of the past three years fell into place. OMG, do I have lyme disease? Suddenly, it was all I could think about. I read the Horowitz Lyme-MSIDS questionnaire by a leading Lyme Literate Medical Doctor (LLMD) Dr. Richard Horowitz.

Bite Me by Ally Hilfiger

All the issues I’d seen the Doctor for in the last three years were on this list. As well as several things for which I never sought help. I had the classic onset of symptoms. Except I never knew if I had a bullseye rash or a tick bite. WAIT A MINUTE… in a flash I recalled that spider bite and the horrible mosquito bites. At the time, I knew about bullseye rashes made by ticks. I didn’t know that ticks burrowed into your skin. I didn’t even know what a tick looked like. Suddenly, it was very clear. I didn’t know if I was bitten in my backyard or at the lake where we sometimes visit. It didn’t really matter.

I went to see my doctor and told him my fears that I might have Lyme disease. I handed him the completed Horowitz questionnaire. He asked me why I would think I had Lyme disease and I explained a short version of what I have written here so far. I also mentioned the neck pain I’d seen him for, the ringing in my ears for months on end that he also treated me for, or the lump in my breast and colostrum that had no business appearing. I told him how I had trouble finishing thoughts, fumbled with words, couldn’t concentrate on books or TV, smelled cigarette smoke when there wasn’t possibly any around, dropped things all the time because I could no longer fully grasp items, couldn’t tolerate loud noises or bright lights, and how my whole body ached. He diagnosed me with Chronic Fatigue Syndrome and advised me to get tested for Lyme Disease and Co-infections (Babesia, Bartonella, etc.) with IgeneX.

By the end of October, I revisited the Doctor with my results in hand. He diagnosed me with Lyme Disease. He gave me the name of a LLMD in New York State. She was expensive and taking trips there would be costly for us. I did a little research of my own and found out a reputable Lyme Literate Naturopathic Doctor works in Ottawa. I immediately booked an appointment.

The first week of December, I had my appointment with the LLND. I was so eager to finally get treatment. She was better than I had hoped for! She assessed me and prescribed supplements and asked for me to have a Doctor prescribe certain antibiotics. She uses a variety of methods to diagnose illnesses. With my health background forms, the questionnaires she’d asked me to fill out in advance of the appointment, the test results I’d given her, a physical examination, and auricular assessment, she was able to diagnose me with Multiple Systemic Infectious Disease Syndrome (MSIDS). So basically, I have Lyme, Babesia (similar to malaria), Bartonella, and a bunch of other issues suppressing my immune system leaving me sick and vulnerable. Each with its own long list of symptoms. Some of the issues can be resolved but the Lyme can only be treated into remission. It will be a long process.

One of the problems with Lyme Disease treatment is that you get worse before you get better. When the bacteria is being killed off, toxins are released into the body causing a Jarisch-Herxheimer Reaction. A “Herx” happens when your body can’t rid itself of the toxins as quickly as the bacteria is being killed off. To counteract the risk of a reaction, my LLND gave me a schedule to add new drugs and supplements slowly. I am now on everything and for the past two days, I’ve had constantly tingling hands (think pins and needles type stuff), hot flashes and sweat, sudden chills, dizziness, and physical fatigue.

Drugs | Melanie Ritchie

My supper time meds

I drink lemon water and take epsom salt baths to aid my body’s detoxing. I’m taking supplements that also help with the detoxification process. I’m struggling to take all the pills at the right time. I use an iPhone app to help me and it reminds me to take pills at 12 different times in the day!

Mittens | Melanie Ritchie

Mittens, the ever loving kitten keeps me company in bed, on the couch, or at the edge of the bath.

In addition to the pills, the LLND prescribed a new diet for me. It’s horrible! The only upside is that I’ll lose the weight I’ve gained since all of this started. I’m still trying to figure out exactly what I can and can’t eat. It’s confusing because I was given some specifics about the diet and then also told to follow the Wahl’s Protocol Diet. So, my understanding at the moment is that I need to be sugar-free, gluten-free, and mostly dairy-free. I can’t eat potatoes. I think I can’t eat tomatoes but I’m not completely sure. I’m pretty upset about the potatoes. I can’t have vinegar, except for cider vinegar. I can eat sweet potatoes! I can eat avocados. I can eat two pieces of fruit a day.

The worst part (aside from the sugar and potatoes limitation) is that I’m supposed to add meat to my diet. I’ve been vegetarian for 21+ years! Wow, wow, wow. So last week, I dragged myself to the butcher that gets their meat from local farms that are organic, pesticide-free and run like farms rather than factories. That’s the only way I can make peace with this change. I want to know those animals had at least a semblance of happiness before they were slaughtered. I’m not thrilled but I’m prioritizing my health as more valuable than the life of the chicken. I’m not sure that’s fair or right, but that’s what I’ve chosen to do.

file_002

My first meal of chicken in over 21 years! Thank you nameless chicken for giving me your life. I’m sorry it has to be this way.

I’m still having my morning coffee, sweetened with stevia (on my ok list!), with a splash of cream (pretty sure that’s a no-no). I fully intend to cheat on Christmas Eve and possibly Christmas. Hopefully, I don’t regret it!

So, that takes me to now. My husband is very supportive and loving. My children are struggling to understand and accept that their Mommy is sick. It pains me to see my daughter’s anxiety over this. We’ll figure this out. We will.

I’ve made peace that I’m not crafting my way through Christmas like I usually try to do. No December Daily, no fancy photos, no Christmas crafts, and no sweet treats. I cut back on the decorations. I didn’t write Christmas cards. I just can’t do all those things right now and that is okay. Right now, the priority is to get better and spend time with my family. My biggest goal for the holidays is to play board games with the kids. Time together is all that really matters. And sleep. That matters too!

Little Elf | Melanie Ritchie

Photo techniques I won’t be trying this Christmas!

Thank you for reading my story. I’m sure if you were to read back over my blog posts the last few years, there would be moments where it was obvious something was wrong. Hopefully my future blog posts will guide us to a place where something is going very right! I’m going to try to write more about what I’m experiencing. My design work for the most part is on hold. This blog won’t have lots of scrapbooking, designing, or art projects for the next while. Follow me along for my journey and hopefully the art will return sooner than later!

Merry Christmas and Happy Holidays! May you have moments of great peace and joy in the coming year!