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.