29 ways to have fun when you're chronically ill

Okay, that last post was super negative - ack!  I cringe reading it now.  But this is the reality of illness, right?  Some days we're down, other days we can see things in a more rational light.

But feeling 'stuck' and not being able to do anything really.. not having the fun you see everyone else around you having - this is what I miss the most about not being healthy.  Hubbie misses it too.  The loss isn't quite as strong for the kids, but I know they feel it somewhat too.

So what can you do for fun when chronically ill?  When you have no energy, too much pain, no stamina, and probably little to no money?

I've been brainstorming on this as I (clearly!) can sometimes use more options for cheering myself up. A change of pace.  A little break. Getting out of my head!

Now I am very aware my list won't work for everyone - it will depend on whether you're bedridden or not, pain levels, whether you can walk or sit up, whether you can leave the house, whether you have a friend or family member to drive you places.  Personally, I've journeyed through the fairly bedridden stage (about 18 mos) and am now a lot farther on (yay!). But it's still tough and scary to be out of the house for more than 30 minutes to a couple of hours at a time and I prefer not to drive anywhere due to the condition of my head.

I truly hope this list can offer up a few practical ideas and if not, at least inspire other thoughts that could be useful!

So here goes...

Incorporate rituals and items into your daily life that just make you feel good whenever possible:

1. Drink herbal tea (or your lemon water) from a mug you absolutely adore.  One that brings you joy just by looking at it, holding it, feeling the shape and texture in your hands.  Also, experiment and find a tea you love.  Oddly enough, as I hate actual licorice, my fave right now is licorice tea.  If you leave the tea bag in it gets really strong and sweet and mmmmmm! And as a bonus, it's supposedly also good for the adrenals.
2. Open your window blinds or curtains as wide as they will go to let plenty of daylight into your bedroom or home.  I especially love doing this when the sun is shining.  I'll move over on the bed or sit on the floor so that I'm covered in sunbeam.  I pretend I'm on the beach.  The best! Big fluffy snowflakes or a good rainstorm are also fantastic to watch through the window.  Nothing like the soothing power of nature.
3. Bless meds and supplements with love before you take them.  This helps me with gratitude and keeps me in a more positive head space throughout the day.  Keeps me out of the this-is-a-pain-in-the-butt mindset too. You want to nurture yourself whenever you can.  Taking meds is like being a loving parent to yourself.
4. Have whoever buys your groceries pick up some affordable cut flowers for you to put in a vase in the room you spend the most time in (or the living/dining room if you don't want the scent in your bedroom).  We don't do this often, but hubs just brought home a $6 bunch of daisies and they literally brighten my mood every time I look at them.  I feel pampered, nurtured, loved.
5. Use your favorite household items whenever you can...  so your fave towel for your shower, your fave colour toothbrush, your fave colour throw on your bed, your fave cozy sweater, an adorable collar for your dog or cat, a beautiful throw cushion on your bed.. you get the idea.  A happy feast for your soul wherever you look!

Fun stuff to do at home:

1. Have someone regularly bring you a stack of books from the library. If you are well enough to read of course - or try books on tape, or videos!  DH takes the kids to the library regularly (we sure don't have the budget to buy books!) and does his best to bring home a bunch of novels for me.  And then I order titles online too.  There's always a big stack waiting by the bed.  For when I'm resting, nights I can't sleep.  My eyes and brain aren't always up for reading, but I enjoy it when they are. It also feels so good to see a big stack show up - 'for me?! ooo, thanks!'
2. Go outside!  So many possibilities here.  In warmer weather, sit in a hammock ...oh how I LOVE my hammock - it's a 'chair' style and is super soothing! Put bare feet on the ground. (I know, not if there are ticks around!) I'll walk in bare feet on the driveway, on stone walkways, even up the sidewalk a little bit. Feel the warmth of the sunshine in the ground, or the cool of the shadows. Go for a little walk, whatever suits your fancy.  I always feel better after being outside.  Except maybe in the -30s... then I sit in my sunbeams indoors!
3. Get someone to plant a tiny veggie garden for you.  I love my garden.  My friend brings the plants and my hubbie does the hard work.  I will pull a weed here or there and also clip fresh greens, or grab some peas for my lunch... all summer long. Love. If you don't have a yard, you could just do a pot for your balcony or even indoors.  Whatever floats your boat!
4. Watch a movie - from the library, on dvds lent from friends.  If you can tolerate popcorn it can be a special movie-night treat a couple of times a week.  Often I just drink a nice cup of tea with my movies.
5. Find an old tv series on Youtube and watch it all the way through over a period of weeks or months. I've done this lately with The Cosby Show and also Roseanne.  Not sure what's next!  It's fun when an old show has 8 or 9 seasons and you can watch them in order.  A different experience then when I watched off and on as a kid.  It can take some clicking around, but I've managed to find Youtube channels that have a lot of old shows for free. Stand up comedy can be fantastic too.  There are times when you really need a laugh and I find stand up can transport me out of a funk in a jiffy. (If only briefly!)
6. Do something nice for a friend or family member, even if it's silly and unconventional.  My kids were making valentines for their friends last month and I ended up making (just a few) for some of my friends too!  I felt really weird even contemplating the idea at first, but then convinced myself with hey, why not?  They were handmade (and terribly done really!) but I sent them in the mail and my friends were delighted.  Us adults don't get little messages of love in the mail that often.
7. Knit or crochet.  I'm not great at this and can't do much at a time as my hands hurt and are too swollen.  But I did a wee little bit with my kids last summer and we yarn bombed our front yard tree.  It looks like a really small scarf wrapped around our maple.  Makes people smile as they walk by and makes me smile whenever I look at it.  We chose bright fun colours and did a lousy job and it was still fun and totally worked out.
8. Have a friend by to hang out with you.  Just tell them up front how long you will be okay to last for a visit.  I've had friends sit on my bed with me, in the hospital with me, on the couch with me when I could sort of sit/lie down for a conversation, and even, as of late, sometimes at a coffee shop!  Love this so much.  I can't do it nearly as often as I would like as it's too exhausting.  But it's great to book something like this as regularly as you can - once a month, once a week, etc.  Whatever works for you right now.
9. Write little notes to your family to leave around the house.  A joke, a smiley face, a note of gratitude or love.  This brightens anyone's day.
10. Organize or tidy something up.  You'll need a good day to do this sort of thing on, but I find it does wonders for my mood if I can clean out a drawer or simply just tidy up my bedroom so it looks nice as I survey the space from my stack of pillows in my bed.  I've cleaned out drawers, shelves, shoeboxes of stuff, and even closets on days of peak energy.  The key is to really assess where your energy is at and go small - better to do the bare minimum and then choose to do more when you are done the first task than to go big and get too tired and discouraged in the middle of the job. After years of illness, I find my house just keeps getting more and more decluttered.  Super slowly, but surely.  If you can't do this on your own, maybe you could have a friend help you out if there is a particular area that is getting on your nerves.

Fun stuff to do NOT at home (imagine - ooooeeeee, wild!):

1. Go to the beach.  If there is one nearby and you can get someone to drive you and cart the blanket, drinks, etc, this is amazing.  Sitting on the sand and watching the waves - maybe even wading - is at the tip top of my happy place list.
2. Go to a park.  Same as above.  Or maybe there is one uber close to you and you can walk there. Find a nice bench or bring a blanket and sit or lie on the ground.  Heaven.
3. Go for a walk.  Just as far as you can.  The front porch.  The end of the driveway.  Half a block.  Around a block.  I'm doing well enough now that I can often walk for 20 minutes.  My strategy is to always walk in something of a circle around my house.  So I can head home whenever I need to and it's not that far away.  A cell phone is also great.  So if you get stuck in pain or stiffening up too much then someone can pick you up.  
4. Sit on a bench on a busy urban pedestrian-filled street.  The noise can be a lot, but I find being outside makes it easier, and if you can tolerate it, the people watching is fun. Makes you feel part of the outside world.  If you have a dog and can bring her all the better.  People always want to pet your dog and chat.
5. Visit a neighbour at their house.  Maybe you have neighbours who are friends and you can pop over to their place for literally 10 minutes.  It's out of the house, it's social, and hopefully it won't put you in bed for 2 days to recover. This is one of my absolute faves.
6. Chat with a neighbour outside.  A 5 minute chat on the sidewalk when someone is outside walking their dog or hanging out with their kids can be fabulous too.  We don't need formal or lengthy - just a bit of human connection can do wonders!
7. In the winter, just find some way, any way(!) to get out of the house.  With budget, stamina and energy at a premium, I have struggled with ways to leave these four walls during the -20s and -30s we've had this past Canadian winter.  So far, I've managed walks around IKEA (someone drives me there and walks very slowly around the store, I sit as I need to), walks around Canadian Tire, the grocery store, Walmart, the mall.  And yes, sometimes I've sat down in odd places.  But in big stores like that no one really notices too much. I also make sure to go at quiet times of the day.  I.e. first thing in the morning when a store opens.  Unless you can go somewhere where you can easily park close to the store and just sit on a bench and people watch.  That could be fun too.  But mostly I find too many people puts me in overwhelm.  So I try for quiet times. Hubs and I have done 'date nights' like this.  Literally a half hour walk (with sitting to rest in between) around a store.  I mentioned it to a friend once (not sick!) and she told me that was a pathetic date night.  It didn't hurt my feelings though because for us it's not pathetic.  It's really nice.  It's a change of scenery, it's window shopping, we can afford it because it's free, and we hold hands as we slowly meander through the aisles. Put your mind in the right space and it can be totally romantic. 

Fun stuff to do with kids:

1. Movie night!  (Or afternoon, or morning!).  A no-brainer, but if you can handle kids movies, this is a nice way to hang out with the kiddos while you're on the couch or in bed.
2. Play a board game.  This one is tough for me, as cognitively I find my head usually hurts too much plus I just don't have the patience.  BUT, I have found I can watch!  So sometimes the kids will play each other and I can watch and make silly comments.  Sometimes they will play with DH and it still feels like a family affair because I am there, hanging out.
3. Chat.  For example, short chats in bed.  My kids will just show up in my bedroom sometimes and we hang out a little.  Sometimes this is a 2 minute check-in, sometimes it's half an hour.  Sometimes I invite them into the bed with me and we snuggle.  Love it.
4. Bake or cook.  Now I really don't have the stamina or patience or head space for cooking with my kids.  I can't even have them in the kitchen when I am doing it by myself!  BUT, I have found that I can sit on a bar stool and coach them a little from the sidelines if they are almost capable of a task, but not quite.  Not every day.  But once in awhile.
5. Walk.  Sometimes I'll take a kid with me on one of my short walks around the block.  We go slow.  We hold hands (if they are in the mood - love it when they are!).  Nature, family, exercise, connection.  Can't go wrong.
6. Sit outside and watch them do stuff. Shout encouragement from the sidelines.  My kids will do chalk drawings, make long hopscotches, skip, hoola hoop, etc and I just sit in my hammock or on the porch steps and watch.  And smile and comment.  It can be okay. Sometimes we go to a park close-by and I sit on the bench while they play.  
7. Text or email your kids.  I don't do this very often, but sometimes I'll text my daughter as she's on her ipod in the next room.  She gets a kick out of it.  We use a lot of emoticons.  It makes me laugh too.

Chronic Illness and Tests

Do tests make everyone with chronic illness angry, or is it just bad ol' attitude me? 

I know I should be grateful.  Grateful for the opportunity for testing, for the chance to improve my health based on personal results.  Living somewhere where testing is accessible. Having the means to do the tests. An amazing gift.  Yet, why is there still this all-encompassing psycho rage that rears its ugly head every time my doctor orders tests?  I have to force myself to be civil and act happy, like woohoo, can't wait to see what this one tells us!  ... right. 

The last two weeks I have been in to the lab for bloodwork 3 different times, done a scan at a different clinic, and completed two different urine tests. This equates to dearest husband driving me for testing purposes 5 times in the last couple of weeks.  The whole family has to get up earlier, the morning schedule is thrown off, so he can drop me at labs before he drops the kids at school.  And then of course pick me up afterwards and be late for work himself. Work he is paid for by the hour.  Sigh. And there are still more to do.

When results come in, they are usually a disappointing combo of either normal or way off-normal.  The normal ones of course should reassure me, but instead make me mad that I wasted everyone's time (let's not even get into the money!).  Then the off-normal ones usually lead to another round of tests... or more money on more meds or more supplements... stuff I have doubts will help and may make me sick if I react to them as I often do.   And I get mad all over again. I just want to be left alone!  I don't want to try anything else!  Make it stop!  ARGHHHHHHHHHHHHHHHHHH!!

I suspect the truth of the situation is that I'm simply frustrated with being sick.  Feeling at the end of my rope near the end of a long, cold, bitter winter. Wishing the money we spent on this stuff and then further required tests, meds or supplements, could be spent on something fun instead.  Wishing we could have a family vacation.  Wishing I could buy something fun for the kids or the house or go out to dinner. Wishing really for just a little break, somewhere.  A little tiny one. Anywhere??? Please???

This is my Lyme disease

I am awakened at 6 am as my husband hands me my first meds in bed to start my day.

This is my Lyme disease.

I take the 3 pills and drink the glass of antimicrobial herbal drops that he has sweetly prepared for me. If I'm aware enough, I feel gratitude for this amazing medicine. These meds work to kill the lyme and co-infections and dissolve bio films, without destroying my gut in the process. Half an hour passes and I mindfully set positive intentions for the day. This helps override the sick fluish feeling in my body and mind. It helps give me the nerve to pull myself out from under the covers and face another day. If I don't do it, sometimes I want to barf with the fear and dread of facing this all once again. Then I take more meds, do some gentle energy exercises, clean up the bedroom, and head downstairs to the kitchen.  Carrying as many empty glasses as I can from the day before.  They tend to build up on the night table!

I drink warm water with freshly squeezed lemon juice to alkalize my body. I take iodine drops in water to support my thyroid. I make and drink either a glass of freshly juiced green juice and/or a green smoothie. I take fish oil. I take about a dozen other supplements to support my body... My dear body, fighting so hard against these illnesses. I prepare and eat a nutrient dense breakfast too because I feel light headed without a little bit of solid food in my stomach. This whole process takes about 3 hours. I hate it when I have a rough night and sleep in a bit because it throws off the whole thing.

This is my Lyme disease.

I tidy the house, maybe pay a few bills on the computer, answer some emails, make phone calls. My head is clearest in the morning so it's the best time to do anything where I need to actually think. Or not mess up my bank account. ;) Or stand up feeling relatively stable. I sit to meditate on my meditation cushion in front of the gas fireplace. I can't sit too long so eventually lie on the floor to finish. I can't regulate my body temperature very well so the warmth of the fire during the cooler months is essential. Upon finishing, I stretch in a few easy yoga poses.  Then I go for a walk, if I'm well enough and the weather isn't minus 30. I walk slowly, but at a better pace than I have managed in the past. I walk anywhere from a few minutes to 30 minutes on an awesome day. Bad days, the pain in my body becomes too great. I get a massive headache and my entire self hurts like it's full of arthritis and I'm 99 years old. Plus I get a feeling of nausea to go with it as a bonus.

This is my Lyme disease.

I return home and prepare another antimicrobial cocktail for ingestion 30 minutes before lunch. I carefully count the drops of each herbal addition. It terrifies me to mess up and put in too many as an error of even one or two drops could make me extremely ill. Yet I despise messing up my counting, becoming unsure if I've overdone it and having to toss the whole glass down the sink. A dosage lost. This stuff isn't cheap and we're not exactly made of money right now.  I'm very tired at this point but ensure I prepare and eat a nutrient dense lunch plus a few more supplements along with it. I need to fuel this exhausted body with good stuff so it has a chance of keeping going. 

I go to bed as early as noon, sometimes managing to stay up until 1pm. My head is spinning and I welcome the opportunity to lie down with relief. But sometimes I resent it too. This is it for the day. I need to sleep now, but I won't feel as good as I managed in the morning again until tomorrow.

This is my Lyme disease.

I drag myself out of bed between 2:30 and 3:30 pm. I sleep and wake at these times every single day but that fact doesn't help my body want to get up. I feel cranky and hungover. This is normal. I get up to take more pills and hydrate with water. I greet my children as they come home from school. I'm happy to see them but am in a bad mood.  Must force myself to be cheery with them. It's fake and I don't always do a good job of it. I hate that.

Depending on the day and if I feel up to it, I may look in the fridge and begin supper prep. My kids know they must leave the room, get off the first floor of the house. I have intentions in my head as to what I'm doing but it's a big effort to make my hands do what my head wants. And my head is full of fuzz so I have to fight each thought through that too. I can't talk to someone at the same time. I can't parent. I'm exhausted and working too hard without anyone around. 

At 4 pm, I make more meds to drink and take more pills. Dinner is usually around 5 or 5:30. A big basket of supplements gets carted to the dinner table so I can swallow more pills throughout the meal. I'm so tired afterwards that I go to bed to rest. The kids and hubby clean up. Hubby takes kids to any activities and deals with other stuff that comes up. Despite how bored I am, I usually can't do much in the evenings as I feel too gross. I can't think well enough to do anything that requires brain power. I can't play games with the kids or read to them or hang out with them because noise is too much, patience is too much, parenting is too much.

This is my lyme disease.

My kids used to ask us for playdates but I can barely cope with parenting them. They don't ask much anymore. They used to ask to help me in the kitchen, but I can barely handle myself in the kitchen. They don't ask anymore. They used to ask me to play games with them, now they ask if I need them to leave the room. They don't ask to go anywhere or do anything because they know the answer will be no.

This is life growing up in a family where your mom has Lyme disease.

I try to do something to detox in the evenings even though all I want to do is curl up in bed in a foul mood. But I don't want to curl up in bed either. I am so beyond bored with curling up in bed. I make it, usually by hanging out in bed, until 9 pm and take more meds in water. More pills. Sometimes stuff that disrupts my sleep and gives me nightmares. After all this time trying to heal, I still hesitate to take it, staring at the capsule before I swallow it... like that might make it gentler on my body. By this time of night, my face is pitch red, burning hot and blotchy with the exhaustion of the day, fighting these bugs, herxing. I feel disgusting but mostly ignore it. Helps my sanity to pretend everything is sort of normal. 

I spend the nights sleeping a fair bit. What a blessing. It wasn't like that for a long time. I'm up several times to stagger to the bathroom. Holding the walls and bed frame for support as I go. I wake parched with a dry mouth and lips, and drink the water always beside my bed. I wake with sweats and chills. Itching like crazy sometimes too, although not as much anymore. So grateful for sleep. So grateful to not be in terror with brutal symptoms at night like I used to be.

I pray. I'm grateful. To be so much better than I was, to be healing ever so slowly. To have people in my life who love me and treat me as me, not the disease. To have been able to have my kids before I got sick. For me to be so far along in this journey that I am able to pretend to forget I'm on it for moments here and there.  Not sure if it's because of how much better I am or how much practice I have at pretending.  Probably both.

This is my lyme disease.

I'm living a dream compared to how sick I was 3 years ago. When my body hurt so badly I couldn't hug my kids, and I would lie in bed 20 hours a day. Mostly in agony. Scared, exhausted, fighting the biggest, darkest fight of my life. Freakish symptoms appearing randomly, constantly. Never really knowing what to do but try to hang on another hour, another day. There are so many out there suffering worse lyme symptoms than I have had, and yet others battling different diseases and life situations beyond the suffering I can imagine. Wow, it's a lot.  I never knew it could be so much.  I'm deeply sorry that it can be.

I know without a doubt how precious life is. And I will know that and be grateful for it every day for the rest of my life. I  am out of my mind tired from this fight, but so pleased to be alive.

This is my lyme disease.

Caregiving continued... Heart attack scare

Things have been crazy again... and I am not keeping up with this blog.  I didn't foresee this last scare happening, but then I look at my last post about my sweet hubbie and his caregiving role and think, 'How could I have NOT foreseen it?!?'.

Oh yeah, maybe the brain fog and feeling sick all the time and just how ridiculously hard it is simply getting the family through each and every single day in one piece.  That could be why I didn't foresee it. Maybe. 

Two fridays ago, I had to call 911 as DH thought he was having a heart attack.  Massive pain, sweating, nausea, numbness in his arms... the whole experience.  It was intense and scary.  My adrenalin levels didn't fall for a good 12 hours afterwards.  And I have to say I'm usually really really solid in such situations.  (Of course I am!  Of course DH is too!).  Anyhoo, to make a long story short, we had the paramedics come (they were great - always love the paramedics!!), then they took him to the hospital for tests... and... tada - no heart attack - hooray! 

Turns out it was an anxiety attack from stress. 

The paramedics asked him if he was under stress, the hospital did too.  His doctor, in this follow-up appointment, asked if he was under stress.  It comes across as such a ludicrous question to someone in our situation.  How does one even begin to answer that question when it's been literally years of non-stop spirit-breaking complete-exhaustion-inducing stress?  Caretaker for a partner with chronic lyme?  Essentially a single dad, with mom hanging around sick ALL the time.  Serious money worries.  Ridiculous concern as to what the future holds. Even just the basic 'nothing 'fun' to look forward to'. Ever.  Can't travel as too sick.  Can't go on vacation because of no money.  A staycation would be great, and it's what we do, but I can't actually DO much of anything on one.  And the kids get grumpy and he gets the brunt of it all.  Always.

So I think he looked at the floor and said 'yes, I am under some stress'.

Geesh.

When will it stop?  It could be years. It could be forever like this.  We don't know. We can't know.

We're doing what we can to improve things for him.  Making sure he gets sleep and he starts to exercise again.  We can do this.  Small stuff.

I hope it's enough.

Let's Not Forget Our Caregivers

I am blessed beyond words in that my dear hubby has been here through the thick and thin of this chronic lyme mess and continues to care lovingly for both myself and the kids.  It's coming up on 5 years now and he has never given up.  Never hinted at throwing in the towel. 

This blog focuses on gratitude, and I have heaps of it for his hero husband of mine. I am also well aware that there are many suffering from chronic lyme and other chronic illnesses who are suffering alone.  This journey is too hard.  And my heart breaks for all of us, but especially those who are soldiering on alone. You are playing both rolls, caretaker and patient. I can only imagine the insane amounts of extra strength this takes. :(

Caring for someone sick, non-stop for years, takes a massive toll.  The rougher patches seem to come and go, but I can really see it in him this last month.  Christmas and New Years brings up a lot of tough feelings for those with chronic lyme and their families.  Memories of better times, hopes that this year will be better than before, hopes that in the future maybe life might go back to normal.  Hopes that can be dashed pretty quickly without all the extra stress, pressure and exhaustion at this time of year. It's devastating.

And never mind what the bitter cold weather does for our emotions!

DH and I have been forever hopeful and positive that we're going to get through this. From day one.  (In between the panicking. haha!)  I am healing. I will heal.  Life will be more okay again one day.  An okay life of course where I am really careful not to overdo it - there is no way ever I want to hit remission and then be knocked right back out of it by overworking myself or something like that.  But now, we're several years into this fight.  Things have improved.  But nowhere near enough for it not to be a little frightening.  Not better enough for me to consider basic Mom/wife/adult norm duties - like going back to work even part time.

What if it doesn't get better?

Physically, I don't want to think about that scenario.  Being in a state like this for the rest of my life.  I know deep down, after going through all of this nightmarish madness, that I could do it.  We could do it.  But I'm really not in the mood.  (Because that makes a difference... yaaaa.  Ha!)

Financially, (if we want to get pragmatic), it's terrifying.  Hubs and I have been through the budget literally (sigh) hundreds of times.  We should be able to sort of survive long-term.  If we do nothing, and buy nothing but meds and food. And if absolutely nothing else goes wrong or comes up as an emergency - ah ha ha ha... cause it never does in life, right?

Unsurprisingly, emotionally we're a train-wreck at this point.  So tired of keeping on keeping on.  I'm at my wits end just trying to get through each day physically, emotionally, spiritually... trying to be a Mom my kids want to remember having in their childhood vs Momzilla. He's not in a good state either.  Emotionally, but also physically because he does everything.  Cleaning, errands, dogs, kids, social events, holding down a job.  I'm not in bed all the time anymore.  I plan. I tidy!  I make meals here and there. But he never knows if I will be up to which tasks or if he'll be on the hook for even more chores when he gets home from work each day. How fun.

Emotionally and spiritually speaking, he's also a boy (or anatomically speaking??!).  Why don't they talk like us girls do???  How do they get the support they need? I'm here for him.  But he could use more.  I push him to go out with the guys for a beer when I can tell he is desperate for it (and yes, it would be better not to wait until he is desperate!).  But they talk sports.  Meaningless guy talk.  Which is great to help DH forget his normal life for awhile.  But not so great for receiving authentic empathy.

Came across this article yesterday and it of course was just perfectly timed for our troubles:
http://www.psychologytoday.com/blog/turning-straw-gold/201401/not-do-list-caregivers-the-chronically-ill

Shared it with DH and it resonated.  It became clear immediately that he is not NOT doing all this stuff on her list either.  Oops.  Shocker.

I know it's his life which he is the boss of. And he is very private.  I will continue to be open with him about this.  I'll continue to encourage him to go out with friends when he can.  (Difficult due to both budget and time, but we can prioritize it).  Maybe get him to share these thoughts with his family. 

Grateful beyond anything to have him in my life.  Wishing like crazy I could help ease his burden.

In the meantime, I will let compassion flood my heart... for all of us struggling to make it through.

Happy holidays and happy 2014! Very very late...

I haven't posted since November!  Ridiculous and certainly not in the plans. Plans schmans though!  If I have learned anything from this healing journey, it's not to pay too much serious attention to one's plans.

In a nutshell, December turned out to be particularly busy - no surprise there.  I do my best to keep things calm and plan in lots of time for rest, but when the community around you is going crazy for the holidays there seems to be only so far you can go with this. Extra commitments all over the place. No time just for me to be sitting down, in solitude, blogging.

About 5 days before Christmas, I ended up catching the nasty flu going around.  I figured, 'no problem, lots of time to take uber-good care of myself and be fine for the big day!'.  I had been fighting the bug pretty successfully off and on all December, but what put me over the edge was a dinner out with friends where I got really chilled in the restaurant.  I had been so careful.  But it has been so stupid cold out there! The -30s C is no good for anyone.

I did  NOT get better for Christmas.  I did NOT get better for New Year's.  I did NOT get better in time for the kids to be back in school.  I'm getting closer now.  Closer!

Craving to be back into my routine so much.  Bored out of my mind.  Lyme is bad enough.  The flu plus lyme for 4 weeks ...  Utter torture?  Oh right, that's lyme by itself.  We had to cancel almost all of our social plans.  I lay on the couch, chewing garlic, with a scarf over my nose and mouth the throat pain was so bad.  I steamed my head.  I drank soup and tea.  Non-stop for the first 10 days or so.  And off and on ever since. 

Luckily, the kids still had a good time.  Santa came.  Life is good as a kid.  Even if your Mom is super lame.  Thank goodness!

I can chalk it up as one of my weirdest holiday experiences ever.  Hanging out with my immediate family, but not extended family.  Minimal contact with friends. For 6 days I couldn't even speak.  That has never happened to me in my entire life.  Over Christmas it was both an incredbily frustrating yet also enlightening experience.  Imagine essentially not sharing any of your thoughts for nearly a week.  Over the holidays. Certainly gave me insights into our regular traditions and more ideas about how I want to authentically spend the holidays next year.

(In case you're curious: forgo cooking the bird for Christmas - hubby was in the kitchen for 8 entire hours.  Usually we're distracted with having company around, but this time it was obvious how much sheer work it is for little return on a day we would prefer to be hanging out, relaxing, nurturing ourselves. We'll figure out a vegan lasagne or such that can be prepared in advance next year.  Maybe do a turkey in January or a few weeks before the holidays so we still get the good bone broth and turkey soup out of it. Less baking.  We did some gluten-free, sugar-free, nutrient-dense baking but it was still too many goodies on hand.  Hubby and I are both still suffering from the indulgences.  Enough for Christmas Eve, Christmas Day, and New Years would be perfect. More nurturing and relaxation in the month leading up to the holidays.  More of it during the holidays too.  How can I turn the Christmas holidays into a time of rest and renewal and reflection during the darkest time of the year? Spa days... ?  Good thing I have a year to think about it!)

After all of that, I find I'm clueless as to where I'm at with lyme.  Clueless and a little angry! Just finishing up my Samento/Banderol rotation.  The one I have been looking forward to for months.  The one I feel the best ever on thus far.  And it's gone.  Lost in the chaos of the flu. Probably a good thing that I wasn't herxing to the max while fighting the virus.  But I was looking forward to feeling good for a bit.  Pretending I'm more on the normal end of the scale than the sicko one.

Maybe next time.

another week another couple of drops

This week I have gratitude for myself.  For the 'staying power' I somehow summon up to keep on keeping on in this grand old healing from chronic lyme disease journey.

I have gratitude for all the other people out there who are courageously keeping on in their own journeys too.  People with chronic lyme, people with other chronic illnesses, people with entirely different issues that are challenging them beyond what they ever dreamed they would have to handle.  Yet handle it we do.  All inspirational.  And I'll take all the inspiration I can get. :)

I've now hit 27 drops of the houttunyia/enula.  Yippee. (Sarcasm, yes).  And despite that I've been going at this for over a month, I've decided to keep going until I hit the 30 drops I was supposed to start the rotation with. (!) Hoping to achieve this in another week or so.  Which makes me realize that I had better up the dosage to 28 drops this afternoon.  (Sipping my 27 drop before-lunch concoction right now as I type...). 

Oh joy, joy, joy.

So... it has really not been fun.  Is it always this horrendous??!! (I think it probably is... and then I conveniently, or more likely lyme-brain-foggily, forget how bad it has been until I hit the same rotation again) 

This rotation is not getting easier.  I am not sleeping well.  I get red faced and chills and generally gross feeling in the evenings. My head is foggy nearly all the time and it hurts too.  My eyesight is worse. My eyes are more tired.  Harder to read when I'm lying in bed. I'm having nightmares. 

I'm taking the Cowden protocol's Zeolyte HP for heavy metal detox too - every third night - and that often is what puts me over the edge both symptom and nightmare-wise.  The last dose I dreamt about being chased and slashed with a knife.  Over and over again to all different parts of my body.  I would wake up, realize I was dreaming, and fall back asleep and keep dreaming the same dream.  Erg.

The light at the end of the tunnel here is that my next rotation is Samento and Banderol.  Ooooo hooo hooo!  If I have a chance of feeling good on any of the antimicrobials, Samento/Banderol are the ticket!  AND... bonus of bonuses... it should coincide with the Christmas holidays.  How nice would that be to have a chance at feeling a bit better while my kiddos and dear hub are off for the holidays.  

you never really know

So here I am a month in on my houttunyia/enula rotation.  And it's been tough.  I've just hit 25 drops (started at 20).  I haven't been sleeping well, there has been indigestion.  Belching - ugh! My intestines feel out of whack.  And I am going SLOW.  My brain fog is up and my fatigue is higher than the previous month.  I want to cry a lot.  I feel down and of course everything then feels harder.

Then two nights ago, I went to bed feeling okay, and actually slept through the entire night!  Without waking up 2 hours after falling asleep.... like I regularly do because of discomfort throughout my body. 

So why the shift?  I don't really know - it could have been a fluke.  It could be that my body is finally getting used to this rotation and not reacting as badly.  That happens with time. However... I am a little extra curious... as I am doing an exchange with a friend of a friend.  I'm helping her with Nutrition and she is giving me Access Consciousness sessions.  She 'ran the bars' for me for my first time ever on the day I slept through the night. I have done a lot of energy work in the past - some learning myself and I have also gone for various treatments.  Reiki, reconnection, allergy energy work, Chinese medicine, etc.  This one was a new one for me me.  And it felt a bit different.  Very light and gentle.

At the end of the session I did not feel profoundly different - although definitely 'lighter' and happier.  I smiled for a long time afterwards.  (Which was great in contrast to the 12 hours I had spent pretty much non-stop crying a couple of days before that!!!).

So yes, the night after my Access Consciousness session is the night I slept through.  And then I had a good day afterwards.  I even cleaned out closets and decluttered - AFTER dinner!  I never have energy like that after dinner.  I ended up red faced and feeling a bit woozy - as usual.  But I did it.  It felt great.

Then I went to bed last night, had trouble falling asleep, did not feel well at all while trying to fall asleep (itching like there were bugs all over me, general aches, chills and discomfort) and I did not sleep well again - woke a few times feeling gross.  So back to the regular ol' houttunyia/enula rotation pattern.  Weird.

I'm really interested to see if the next time I have an energy session I see such a difference again.

Parenting with chronic Lyme disease

A friend shared this article on parenting with chronic illness with me and it really struck a chord.  Made me want to weep with empathy for all going through this type of experience. Made me want to be gentler on myself. Be easier on my family.

I would imagine that the people most of us with chronic illness are surrounded by are those that are well.  I have no illusions that this is life and everyone is going through something - of course we all are!  But those of us ill and mostly housebound probably see a lot of others around us that can still actively parent their kids.  I sure do.  I don't have anyone in my neighbourhood or circle of friends that I see regularly that are dealing with what our family is. We see moms and dads that leave the house with their kids.  A lot!  That volunteer at school.  That take their kids out to do sports and piano lessons.  Parents who regularly socialize with other families and have all their kids hang out together. Parents who take family vacations and go to the mall with their kids. Parents who can afford to get a babysitter once in awhile so they can go out and enjoy themselves.  And when they do go out, not feel so sick that they have to fight through it to enjoy themselves.

It's not that I am not crazy happy to be here.  I'm so grateful to still be on this earth and to be able to be here for my kids in the capacity that I am.  I see them every day.  I hug them and kiss them.  I talk to them. I've even been taking them to swimming lessons.  This is huge, massive, fantastic.  I am in love with it.

But sometimes, there is that natural overwhelm that slaps me in the face as I am constantly reminded what I can't do for them - that all their friends' parents seem to be doing.  My kids weren't allowed to have playdates at our house for several years because I didn't have the energy to supervise and I couldn't handle the noise and chaos.  They lost friendships because of it.  Now they are allowed one once a month or so. This is hard on them for the lack and hard on me for the effort. And I'm too strict when they have playdates because I still can't handle noise and chaos! We don't do sleepovers for the same reasons.  And I'm grumpy, a lot.  I wish I wasn't, but I'm tired and in pain and have trouble standing up a fair bit of the time still (lightheadedness/dizzy).  Then there are the meds that bring on anxiety and rage. (Fun!) I'm also not at work so we just don't have the cash to do the 'cool' birthday parties or buy them the latest clothes or toys.  Not that I was ever a huge believer in that sort of stuff - but sometimes it would be nice for them. I never volunteer at school because I soooo can't.

My kids hear 'No' all the time.  You thought a 2 year old's 'No's' were over the top?  Try me!  'Mom, can you help me with my homework?" "Mom, can you do this craft with me?" "Mom, can you make me a snack?" "Mom, can you read this book with me?" "Mom, can you play this game with me?".  It saddens and embarrasses me to an extent that most of the time they don't even ask me these questions anymore.  Because I almost always say No.

So that can get me down.  Can you imagine reading those statements before becoming a parent and thinking Oh yes, sign me up!  Can't wait to be such a horrible parent to these poor kids! Oh the therapy they will need when they grow up!  Dysfunction - bring it on!

So I consciously pull myself out of these thoughts once again.  I'm here.  I exist in their lives.  I can listen to them on a daily basis - maybe on my terms, but I can.  On the rare occasions I can pull myself together to play a game with them or read to them, then I do.  I embrace those times and go for it and it's amazing. With all the knowledge I have gained as I heal, I am teaching them how to take good care of their bodies.  To hear their bodies. I'm teaching them that it's not money or popularity or stuff that matters.  We don't need any of that.  It can be fun sometimes, sure.  The people around us can got caught up in it and make us think we need it too.  But it's not what true happiness is built on.  These lessons come up over and over again.

I'm blessed to have these fabulous kids in my life.  They are a ginormous part of what keeps me going.  Like the woman in the article says - faith, family.  These are the biggies for me too. I just hope the good that I'm teaching these dear children outweighs the negativity they face on a daily basis.  I really do.

Happy Halloween :)

I've switched to my Houttunyia/Enula rotation and it is kicking my butt a bit.  On just 20 drops.  But this is always my roughest rotation so I'm not shocked. Feels like I'm on Benadryl and Red Bull at the same time.  Exhausted but strung out. Feeling drunk in my head when I attempt to converse with anyone. Oh well. So be it.

Nevertheless, I've been on this rotation a few days now and it's getting a little less intense.  Managed a good nap yesterday and a wee one today (unlike the days/nights before - exhausted but pounding heart/wired feeling).  And then yesterday, on Halloween, I made dinner and was also able to totally enjoy handing out candy to all the trick-or-treaters.  Chatted with parents, stood outside and watched the wonder of the night... beautiful, normal-people kind of stuff.

Two hours of trick-or-treaters at the door later, dear hubby and youngest daughter got home lugging a boatload of candy.  This child had never lasted so long in previous years - so she was pretty proud and pretty pumped.  The three of us took some time to catch up on each others' nights and then I ventured out for a little walk.  Time to enjoy all the decorations and cool jack-o-lantern carvings myself!

I strolled slowly around our block, appreciating the Halloween enthusiasm clearly expressed in the neighbourhood, and even had a good chat with a woman I hadn't seen in a few months along the way.

Shortly after I arrived home, my eldest was dropped off - she had been trick-or-treating with her friends in another neighbourhood.  So the mom and I caught up a bit, standing on the front porch in the beautiful night.  It was close to 9pm at this point - and I was still standing!

All in all, I didn't get to bed til around 10:30 and then was too wired to sleep - a combo of everything that went on, but mostly the potent houttunyia!  I finally was able to fall asleep around midnight.

I was tired this morning, but okay.  Really okay.

I like this soooooo much! My hope is high these days!  I may not be out of the woods, but I don't feel like I'm hopelessly lost in the scariest, darkest bits of it any longer.  Lyme can still frighten the pants off me if I think about it enough, but I'm focusing way too much on living to care right now.

But I hope I'm not fooling myself... Uh Oh...

After publishing that last post 5 minutes ago about how well I am doing, I just scanned back over the blog and realized I started my current Cumanda/Mora rotation mid-Sept.  And today, as I type, I'm still on that same rotation and only up to 25 drops.  I started on 20.

So I'm going slow.  Terribly SLOW.  I hope that is okay.  I hope it's not making me feel artificially 'good' when really I should be increasing my drops faster.  But when I do, I herx a tonne.  And as I just mentioned in that last post, my head feels like crap even at this rate. Sigh.

Hmmm.  I don't know.  I think I need to switch out to my next Cowden rotation in the next few days.  6 weeks seems like a long time to be on a single rotation - especially now that I'm on these maintenance rotations.

I will ask my doctor, but I don't think she knows either.  Trial and error.  Just not keen on the error part - this is a long journey without it!

Doing well!

This is the type of post I have read by other lyme bloggers over the course of my illness that I thought I would never perhaps be so lucky to write.  Well, it isn't exactly that post, but it's not so terribly far off to be depressing. ;)

I'm doing well!  I say it's not "exactly that post" as I can't yet make big claims like 'I'm 90% healed!'.  I still cross fingers and aspire to that day.  But right now, I'm healed enough that I am more of a participant in life than not.  The balance has swung so that I'm out of bed and living more than exhausted and in bed and wondering when I'll ever get out again.

I'm no longer out of my mind with boredom from days on end with little but the monotony of pain and fatigue to keep me company. I'm not nearly as grumpy because my head and body aren't screaming at me in that just-below-the-surface agony 24/7. They hurt, but not that bad.

It is so amazing.  I have to say I feel like I have a renewed love of life.  This state of being makes me not want to think about lyme much.  And then I wonder...

Is it a mistake not to think about lyme much when I still have so far to go?  What percentage 'healed' am I? How 'healed' do you need to be before you stop thinking about lyme so much? How do you even start to calculate where you are at anyhow???  Does anyone many years into this journey even have a clue as to what feeling 'normal person good' really feels like? 

My last post, I wrote about how I had just seen a psychic for the first time.  Well, oddly enough, I then had the opportunity to speak with another woman a week later who had medical intuition abilities.  At one point, she 'felt' inside my head and exclaimed that it was awful, the feeling in my head made her want to vomit.   I thought about it and realized yes, the feeling in my head kind of made me want to vomit too... but I mostly ignore it so I don't really notice.  It's more that I think to myself 'Erg... maybe I should sit or lie down for a bit until it subsides a little'.

All that to say, I don't think I have any chance at making an anywhere near accurate guess as to what percentage my healing is at.  However, if I HAD to say for the sake of this post... well, I'd probably say I'm at 70% better or so. 

I'm happy.  I'm making supper some days.  I'm driving my kids to swimming lessons once a week! (10 min drive, but still!). I often will do something every single day of the week taking maybe one or two days mostly in bed to recover.  I still nap every afternoon.  I still feel really bad at various points during my regular days.  But I'm living - I'm living and I absolutely love it!!!!

Spiritual lessons in lyme

Don't get me wrong, I wouldn't wish chronic lyme on my worst enemy.  However, this blog is about gratitude... and I have to say I spend a lot of time contemplating the spiritual gifts or lessons that chronic lyme offers us.

There is little chance I would have learned so much and so quickly in the last 4 years of my life had it continued on its merry way ...without the big lyme crisis blowing everything apart.  I had a good, but full, busy, and quite stressful life - sort of the norm for us North American moms. I had very young children, a full-time highly demanding job.  A home, marriage, social life, pets to take care of too.  I was learning stuff. Dealing with some chaos. But nothing like what came afterwards. ;)

I came across this fabulous post by Laura Bruno a couple of years ago and find it fascinating to this day.  She is a medical intuitive with both friends and a husband with chronic lyme.  She says "Lyme seems to show up like a roto-rooter, forcing people to dig deep and remove ALL blocks to creativity and healing. To the outside world, these people usually look like they have no blocks because they’re moving so effectively through life, but Life has other plans. It’s as though these people came in with a bigger mission than their current lifestyle or world view allows."

I don't know what you think - but for myself - this fits.

Note: I'm not psychic myself in the traditional sense - more of a clairsentient.  Which took me years to discover and was a huge relief when I finally realized it consciously.

Anyhow, I have had two readings this year.  One at the beginning of the year - a New Year's tarot card reading.  And then, just last weekend, I went to a psychic for a quick 15 minute reading.  I've never gone for a psychic reading before.  An intuitive friend of mine felt compelled to go and to bring me along - so, in the spirit of my go-with-the-flow and whatever-the-day brings philosophy, I went.

My New Year's reading was fine.  I was a little scared as I have had tarot readings that predicted things wouldn't go well in the past - and they didn't. They really really didn't! But this time, it was good. And the actual topic of my health did NOT come up.  At all.  Weird.  A relief. The conclusion made at the time was that my health is a non-issue in my life.  Which is confusing as hell on the one hand - as the state of my health is dictating how much I can parent, how little I socialize, how I can't work, the hours I spend each and every day taking meds, supplements, prepping and cooking the right foods, napping, etc! But it makes sense on the other.  I'm on my path... lyme or no lyme... on I go with life. Which has been, for the most part!, what I have been striving for.  Not to be defined by lyme.  But just to live my life.  And take heed of various limitations as I need to.  Just as you would if say you had a bum knee.

And then in my psychic reading, guess what... my health didn't come up either.   And maybe the guy just wasn't very good right?  Not so psychic?  Well, he nailed a lot actually... and I didn't give him anything to go on... in words anyhow.  No questions, no talk about my situation, my family.  Nothing. I just stayed quiet for most of it.  Nodding here and there. He was spot on for a lot for my friend's reading too.

For me, he didn't end up making a lot of predictions though... instead he spent the first half of our session exclaiming a bit over my energy. (And it was only a 15 min session!). He had met only a handful of people like me.  In 25 years of doing readings.  Was amazed at how much I want to learn.  Last life to this life, within this life thus far.  Awakenings I've already had. Interesting.  And whether true or not true - I do wonder if it all goes back to lyme offering up some pretty cool opportunities for those of us pushing to learn a lot in our lives this go round on earth. (If you happen to be the believe-in-reincarnation type). 

So maybe there really is a silver lining.  Well, I know there is. I did have a decent perspective on life before the lyme experience. But with it, I've grown a lot and gone so much deeper.  My true values become clearer with each passing month.  I'm redefining how I want to live my life.  Pretty cool.

Simple entertainment

One of the tasks that has fallen way way way by the wayside since I have been sick is that of washing the sheets on all the beds regularly. How gross! But I can't do it. The kids have loft beds too so it makes it that much harder to strip the beds. 

Solution of course is to have the kids strip and remake their own beds. Reality check downfall to this plan is I have to find the energy to nag them to do it. And oftentimes I dont have that extra bit of fight left in me. Not for sheets anyhow!

I've resolved this issue somewhat by just addressing one bed at a time. No, it's not enough. But yes, it will have to do. For now. And maybe a few more years. ;)

Today, youngest child stripped her bed with no complaining and after the sheets were washed (by me - go mom!), hubby lugged them back up into her room. I asked her to make her bed. She's little, sheets are big, and it's a loft bed. I get it. She tried.

Before she managed to get it done there were various calls for help to her dad.and then in the middle of it all she showed up like this in my room. 

I was resting in bed exhausted from the laundry and supper and the day in general. Nothing like a child in a pillowcase to cheer you up. :)

I heart lyme bloggers! Problems with Lyme tests and IgeneX Western Blot testing instructions

Reading lyme blogs has helped me so very much during this healing journey.  I honestly don't know how I would have managed emotionally without them.  Knowing someone else really understands.  Evidence that you're not actually crazy but that this truly is an experience to hell (and then more hell and then more hell... etc, etc, etc) and back. But you can do it.  Other people do it.  People make it through. The possibility is there.

All that said, I have had Canadian friends ask me how to go about getting tested for lyme in Canada.  Which of course is a big joke because the Canadian testing is flawed.

CanLyme, on their website, states "Evidence suggests that Canada’s Lyme testing methods are flawed. False negative test results are common, especially in the early stages of Lyme. It takes time for antibodies to develop, so early tests often miss the bacteria. Contrary to bureaucratic statements, late stage Lyme disease antibody testing is much less accurate." CanLyme talks a bit more about Canadian testing here. And Dr. Mercola talks about some of the testing issues here.

Nevertheless, I was lucky to come across fantastic instructions for getting tested via a Western Blot test kit for Lyme by IgeneX in the States here. This is so handy to be able to pass along to others who are desperate for testing. Huge thanks to the lovely woman at Lymed Out who took the time to write directions up so clearly! :)

Happiness Habits

I came across this article today on the habits of supremely happy people.  Friends and acquaintances have asked me on a number of occasions how I stay so positive in the face of a nasty illness like chronic lyme.  I am honest and tell them I am truly not so positive every minute of every day and that there are days where I cry and cry.  Days where I am in a rage.  Moments where I am fine and then the next I am in a rage.  It's lyme, right?  Extremely unpredictable emotionally as well as physically. Yay! ;)

Nevertheless, since day one from diagnosis... well, okay... maybe month two or three or five after a whole lot of major freaking out :) ...  I decided that literally the only way for me to survive this experience was to be as positive as I could.  I was scared to lose my life, but the more immediate fear was to first lose my mind. So I promised myself to constantly look for the good.  This was extremely, crazy, psycho-difficult at first.  No kidding, right?! Especially considering that the first 18 months or so of treatment I spent primarily in bed, in pain (from quite uncomfortable to agonizing) and exhaustion.  Barely sleeping from the lyme symptoms and the herxing.  And herxing non-stop.  (Detox schmetox - why wouldn't it work!?) Plus scared of the symptoms.  Scared for my life.  Scared for my family.  And so on...

People would ask me how I was doing during that time and I would always answer 'Oh, a little tiny bit better - it's coming along'.  And I could not tell if it was.  I had no idea if it was.  It terrified me that it might not be.  But that's what I answered.  Because I had to.  Something in me had to.

I clearly remember being frightened to fall asleep each night, yet at the same time desperate for a break from the exhaustion and agony.  I would keep the phone beside me and make my husband promise, yes promise, to check on me every 20 minutes in case I died.  And I was well aware that that was sort of a stupid plan - i.e. why check to see if someone is dead?  If they are dead, they are dead! But I needed the reassurance that maybe he would somehow save me in time and I could stay alive.  The phone would be right beside me to call 911.  I was really that scared.  For many months.  Ugh.

The other part of night time that frightened me was to have myself actually fall asleep, but then wake up in an even worse state of agony and have no choice but to call 911.  I got to the point where I would rather stay awake and watch the progression of worsening symptoms and then decide to go to the hospital versus falling asleep and waking up into an emergency situation. Apparently I'm not big on surprises. ;)

Ah the fun of it all!

But through all of that, I kept holding on to the positives.  The sunshine in my window.  My dogs furry bodies cuddled up next to me.  The hot water bottle.  My cuddly socks. The fact that my sweet husband would actually promise me over and over again to check on me.  And would listen to me freaking out repeatedly.  What about the toll on him?  What about the toll on the kids?  What about the toll on all my family and friends?  What a mess.  As anyone who has or is going through this or similar knows all too well.

Anyhow, I can't say that things are easy-peasy now because I am still struggling on a daily basis.  We, as a family, are hence still struggling on a daily basis. And there are still too many times where I am scared.  But way way less than before.  For the healing that has occurred, I am so deeply and incredibly grateful.  Of course I also continue to regularly lose my sh@t due to fear, depression, guilt, anger... all those dark emotions.   I like to try to honour their course - I am human after all!  But then I pull myself out again - bring on the gratitude. Settle back into faith that this all makes sense and is okay somehow. 

Do I think I can say I am a completely 100% happy person?  No, not at all.  I wish I could.  I wish I could get to that point of faith and trust.  But there is still too much fear.  I know there are sayings like 'The only thing to fear is fear itself' but I don't buy it.  (I want to buy it!  Puhleeeeassse!) I fear pain.  I have been in such pain that I wished I was dead even though I didn't want to be dead.  I have not wanted to fall asleep at night because I don't want to wake up and have to face another day of this hellish existence.  Nevertheless... I'm still pretty happy all things considered.  Traumatized, yes.  Scared of the future?  Sometimes.  Sometimes a lot.  But I'm going to keep going - moment to moment, doing the best I can, enjoying as much as I can.  Because this is my life!

So... back to the article.  Here are the items it lists as keys to happiness:

1. Surround yourself with happy people
2. Smile when you mean it
3. Cultivate resilience: "Fall seven times, stand up eight" (Love this!)
4. Try to be happy
5. Be mindful of the good
6. appreciate simple pleasures
7. devote some of your time to giving
8. let yourself lose track of time
9. Nix the small talk for deeper conversation
10. Spend money on other people
11. Make a point to listen
12. Uphold in-person connections
13. Look on the bright side
14. Listen to uplifting music
15. Unplug from all the technology
16. Get spiritual
17. Make exercise a priority
18. Go outside
19. Rest
20. Laugh
21. Walk the walk - i.e. hold your posture in a more positive way than depressed way

This list helps me see why I am managing to be happy!  How exciting to see it written out like that! ;)

The strongest ones for me are #s: 1, 3, 4, 5, 6, 9, 12, 13, 16, 18, and 19 (ha!!!!!).

Of course, a lot of these are modified for me due to the lyme - for example, exercise may mean stretching my body one day, a short, slow, painful walk the next.  But exercise is on the table - I value it and I try.  Sometimes I have a nice walk where I sort of can pretend I'm a regular person too.  WOW.

In-person connections can be difficult to uphold when you can't leave your bed.  But I've always kept my connections as best as I can.  Emails, phone calls, friends sitting in bed to visit me.  Don't get me wrong - when I was at my sickest I was extremely lonely because there gets to be very little to say and people maybe don't want to be around when someone is that sick.  But I still held on as best as I was able.  And so, thank goodness, did my family and some of my friends. I also can't listen to music due to noise sensitivity, etc, etc... but for the most part - I see me in this list.

Cool.

Return of the fog and receiving to heal

Day three of my next Mora and Cumanda rotation.  This is generally my mid-level difficulty rotation. If I was to rank them. :)  Currently, after 2.5 years of being on Cowden (and many other supplements and various meds of course) I find I have the best chance of feeling good on Samento and Banderol.  I rarely feel good on Mora and Cumanda, but it's not as bad as Enula and Houttunyia.  So we will see how these next few weeks go.

With the new rotation, I noticed almost right away that my brain fog levels went up.  And my 'get up and go' seems to have left me for the most part.  What I do ever have of it anyways.  I think I notice so much because I'm coming off the Samento and Banderol.  Where I have the most clarity in my head and the most energy in my body.  So the contrast is obvious and of course a little depressing.

But maybe it's time to once again take a conscious look at what gifts this lack of both energy and clarity bring?  It's better than the other choice...

It's not that I haven't considered the gifts of chronic lyme before.  I have, many times. On some occasions in a state of actual happiness.  On other days in total desperation for something, anything, positive to hang on to.  To make it through. It's the premise I began this blog with.  Gratitude.  Life opening up in a way it never could have before.  The gifts of chronic illness. 

So far, in between the masses of heartbreak, I have found the gifts to be many. Although I still don't trust 100% in the process of letting this journey take its course. I desperately want to.  Believe. Trust. Let go. ( But I can't always. Why can't I?  WHY???????????) I'm honestly there sometimes and then there are many moments when the doubt creeps in.  And I have to talk myself out of it. My hope is that someday I will be there, most of the time, in that state.  And be able to anchor myself in it - no matter what may be happening around me. 

I, like so many of the rest of us, have learned through my education, my career, my mere existence in North American society... that the way to live is to come up with goals and then quickly achieve them.  And I got really good at this.  (Well, I think so!).  I can plan, organize, and get things done like nobody's business.  If you need someone you can rely on to follow through and make stuff happen - I'm your gal.  Well, I used to be. 

And now I realize that it, life, is NOT up to me.  It's not really up to any of us of course.  We just live in a culture that makes us believe that we can (and absolutely should!) be in control.  So we grasp at that concept and live in massive subconscious fear that this precious control may be taken away from us.  When chronic illness hits and all the planning and intentions and fruits of one's labours go straight out the window it's one heck of a shock. So we grieve and, naturally, try desperately to regain domination over our lives.   

I freaked out initially upon diagnosis and did my fair share of grieving and grasping at threads of control.  I could no longer work, lost my home, lost my ability to parent, lost my social life, lost most hope of ever feeling less than tortured in my own body... you know the drill.  Health and financial concerns skyrocketed. I went over and over budget spreadsheets hoping to make them work somehow.  Thinking that if I put in enough effort I could magically make life turn out okay - at least on paper.

And what about now?  It took me maybe six months to start (baby steps!) learning how to let go. I'm getting better at it.  "To let go, and let God" as they say.  I do believe it's the answer.  Or at least a huge part of the answer.  (And I've given up enough that I no longer believe I can ever really 'know' the answer - and I'm good with that!). The true way to live one's life.  And honestly, at this point, what other choice do I really have if I don't want to agonize through each and every moment?

Anyhow, I have been following Life Beyond Lyme Lifestyle on Facebook the last while (https://www.facebook.com/LifeBeyondLyme) and Angela had this cool little quote that inspired me.  Apologies as I can't remember the first half of it AND I can't even seem to find it again, but the second half of it said something along the lines of 'you need to receive to heal'.   I have read so much about healing being about loving yourself.  And if you think you are loving yourself, you need to love yourself even more.  And I can understand that conceptually but at the same time it wasn't really super sinking in... in a way that touched me at my core.  This last statement did. 

So I'm watching now... watching for the ways I can receive.  For the gifts that are naturally there for me.  To love myself and nurture myself more.  To fill myself up so there is so much more to spill over and give to others. 

What does more brain fog, less clarity, and less energy offer up?  Well, less talking, less thinking, more silence, less doing, slowing down, more resting, more hanging out, less frantic and hectic, more peace and calm. And I'm here - in case anyone needs me.  Someone to talk to, to listen, to hear.  I'm available for the most part.

Except for when you're fighting FOMO, there aren't too many ways to go wrong with more peace and calm and being able to be there for your friends and family. :)

I'll keep watching.  And being grateful for these beautiful spiritual and life lessons I am receiving.

So glad to be back

It's been a month since I last posted! :(

This is not what I was planning when I began this blog. I want to write regularly. But I guess that's what can happen when you've got chronic lyme and you're at home for the summer with your kids out of school.  And then hubbie was off for 2+ weeks in the middle of August.  So a whole lot of chaos going on and me using every ounce of energy towards trying to enjoy the family time.  Or simply just trying to hold it together.

So how was it, you wonder?  I was expecting our family staycation to be fantastic, relatively-speaking, this year.  I was going to be on my best Cowden rotation - the one I have been on the longest, and herx the least with.  Samento and Banderol.  The rotation I consistently have been feeling a bit better on the last few times.

But, it didn't work.  I was pretty sick.  Lyme sick.  And I was so confused about why!  And super duper frustrated because I have been sick for 4 years now and I was really looking forward to a family vacation I didn't spend primarily in bed.  Is it not time, yet??  Come on!!

Shows how much I have learned to let go and take things in stride, doesn't it.  Not, apparently. HA!  Actually, I do think I am a lot better than I used to be with letting go and just enjoying what the day does or doesn't bring me.  But I guess I still have way too much of the 'human' in me that also gets excited and dreams and looks forward to certain things in her head.  And then reacts in anger and despair when it doesn't happen ... like a toddler having a tantrum.

All that said, we still managed to have a really nice few weeks.  Hubbie and the kiddos did the more active staycation activities on the days I was the worst - water park, hiking around a farm, that kind of thing - and I stayed in bed to rest.  I went with them to go carting - it was just an hour and a half outing - and I got to take pictures and enjoy them all zooming around the track.  I went to the beach with them.  And sat on the sand and waded a little as they swam.  It was summer.  It was hot.  It was hanging out and relaxing. I adore all these things.  I just had to let go of the illusions I was holding about the definition of what our family vacation would mean for me this year.  I knew it would involve little participation - but I still thought it would be a lot more than what I ended up managing.  

So now it's half way through the first week of school for my kids.  And what an amazing difference from the summer!  At the time, it didn't seem like it was that hard to have the kids home.  They are so sweet and self-sufficient and easy for me (for the most part!) - they know how much I struggle and they cut me slack as much as they can.  But it is still so much more restful when they are out of the house, safely at school, not my immediate responsibility - and I know they are learning and having fun with their friends. Not stuck inside bored because Mom can't get out of bed to supervise them outside.

Looking back, I think this is why I got so sick in August.  Despite how diligently I tried to care for myself - taking my meds, supplements, naps, bedtime, etc seriously - it still threw me off balance having the kids home.

Let's see how September goes!

Still going... and being made fun of

Well, a week later and I'm still going on the 30 drops of the houttunyia and enula.  And herxing in a way that's turning me into more of a cray cray person than I usually am.  It's not nice.  It's making me mad.  Why am I still herxing so bad?????????

But... in all this awful sick-o madness, I can still find some gratitude.  Gratitude that I have been well enough - for long enough - to even be able to feel the difference.

I used to feel this bad all the time.  Tired, bone tired, like my head is a massive boulder tired and my body cannot be pried out of bed no matter how hard I try.  "Sick tired"!  (LOVE this post on 'sick tired' - describes tick borne illness fatigue incredibly well!) I actually used to feel much worse than this. So, it's super fantabulous good news really. (I remind myself of this frequently!)

But my attitude in general is extra pissy!  Dear hubbie came home from work the other day and my daughter told him, eying me up sideways, "She has been like this all day!  Complaining, whining.  I feel so bad.  I'm so tired.  I have to lie down.  AGAIN!".   She was right on the money about it all too. In my defense, I felt I held it together pretty well for getting them fed, out the door when I needed to, etc, etc.  All the little things you do that add up quickly to hours of work but that your kids don't even notice.  However, in between all that, I may just have complained several times.  It was actually pretty funny how she called me on it.

(HA!  I also have gratitude for when my kids make fun of me!!!)

However, it's been a month and a half on the same freakin' rotation and here I am herxing and herxing.  Up all night for a couple of nights in a row now too.  That twitchy bugs-crawling-all-over-you restless but exhausted feeling lasting until the wee hours of the morning.  Finally falling into blessed sleep only to have to awaken a couple of hours later to start up on all the sweet meds that are doing this to me... yet again.

Healing me.  Healing me!

Anyhow, there it is.  I am grumpy.  I am sick tired.  I am in need of an attitude change apparently.  My family is once again out enjoying the summer without me because I'm too sick to pull myself out of bed for any length of time.  (See, whiny lady!!) 

There is that gratitude though.  And I'm a little proud of myself too.  Proud of how I went through literally years of feeling this bad (worse) while sucking it up as much as possible and pushing through with a postive attitude for the most part.  Between the hours filled with worries and fear.  Learning to keep faith.  Learning to look at this minute, not the future.  Remembering to look at what I have now - and what I can do with that - versus looking at what I think I may have lost.

So, once again, I will not focus on the boredom or frustration, but will consciously relax as much as my anxious and twitchy body will let me.  Into the soft bed.  Into the pillows.  Breathing into the tight muscles and letting go of the headaches and body aches. I will enjoy the peace and quiet of a house to myself.  Look forward to the stories brought back to me from the world by my family. 

maybe too fast, but I did it

Since I wrote a week and a half ago, I have increased my Cowden drops from 28 to 29 drops.  And then again, on the full moon, to 30.  I have read that a full moon really brings out the spirochetes and that it is hence a great time to blast them with antimicrobials.  My ssymptoms flared up with the appearance of the full moon anyhow - so, with fear in my heart, I went for it. 

I wasn't actually that scared. It was more like dread.  After two and a half years of this, I don't like big herxes.  The first two years, I herxed almost non-stop.  I think it was necessary - I was that sick.  And I needed to blast the bugs to make progress.  Now, I continue to make progress, but I've slowed down the blasting rate.   I could be at this, treating this disease, for several more years to come.  (And I don't want to think about it if it will actually be for the rest of my life, so I don't - one day at a time!).  And if I can help it, I don't want to be so super sick from the herxing on top of everything the lyme and bartonella are already throwing at me.

So increasing to 30 drops that quickly did end up making me herx.  Badly enough that I had tongue and throat swelling by noon for the last few days, difficulty speaking clearly, massive brain fog, pain, that feeling of bugs crawling all over your skin, exhaustion, irritability, headaches.   And hives.  It's summer and my arms and face do not look pretty right now.

But this is consistently my toughest rotation - the houttunyia and enula - and now I'm finally at the desired 30 drop dosage.  I made it!  I'll go for another week or so and then switch to my next rotation.  Samento and Banderol on the horizon.  I'm excited.  I'll be vacationing in August (staycationing is more like it!) and Samento and Banderol are the meds I've been on the longest.  And that I feel my best on.  Hooray!

Looking forward to it.