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.