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.

A little bit of biking!

Here I am - nearly a week since my last post, and I have just increased my Houttunyia and Enula dosages to 28 drops today.  This means it took me a full week to go from 26 to 28 drops.  It's slow.  But I'm living a little bit. :)

The kids were at the Grandparent's place for three days last weekend.  That meant hubbie and I had some free time together - wooeee, baby! I love my kids, but oh do I also love the freedom of not having that responsibility once in awhile too.

So, we packed in the frugal, uber-relaxed fun.  What do other lymies do for fun?  We are on a super tight budget, so spending in any big way is out - no shopping sprees, expensive dinners, movies and popcorn, hotel mini-vacations, spa days, etc.  And of course my fatigue and brain fog are huge still too (much better, but huge compared to a healthy person).  So we can't hike or run or zip line or anything like that either.

We ended up going to the beach for a wee walk in the water - just up to our ankles.  Heaven feeling the sand under my feet!  Water is super grounding for me too.  Then we sat on the beach for a long time.  Chatting and chilling.  We did actually go to dinner too.  But we tend to go to an organic, vegetarian place where you pay by weight.  So I get a LOT of salads.  Which I enjoy because I rarely have the energy to make these at home - a real treat.  And the food is actually safe for me to eat at this place.  We also went for a little walk around a downtown neighbourhood (my husband drove us there in the car).  We both love the architecture of the old houses as well as the lush, full gardens and mature trees in these types of neighbourhoods.  Inspiring. Tried to watch a movie one evening at home but we were too tired.  The evening before we went to a movie out - a real movie at the cinema!  This isn't in the budget, but we ask for movie gift certificates for birthdays and Christmas gifts.  A total mini-break from reality.

So these are our date night ideas... walks, a cheap and healthy bit of food out, nature that is close-by, a movie treat.  Sometimes we people watch too.  Sit on a bench in a busy area and just hang out.  Pretty fabulous considering I spent over a year primarily in bed and in pain, but I still wouldn't mind more ideas. 

(And of course all of this fun - with ample resting in between mind you! - resulted in the worst symptoms I have seen in awhile. Major word slurring, brain fog, more body pain, etc.  But I didn't care!)

I need to get to the coolest part of this post though!  We ended up at an end-of-school party for the kids near the end of June.  The host family happened to be a car-free family with a bunch of bikes.  Hubbie and I had previously played around with the idea of getting a tandem bike - so I could sit at the back, barely peddle, and not have to balance or steer.  I miss biking with my family! We searched for a bit on kijiji, but quickly realized that tandem bikes are pricey - way out of our budget.  And we didn't even know if I could actually do it.  Well, this generous family were going out of town on vacation and have just lent us a tandem bike for a few weeks!  We went for our first bike ride two nights ago.  The first time I have biked in literally years.

I adored it.  Do you remember how it feels to bike?  I don't even remember what it feels like to walk without pain - never mind run, or swim, or jump...   We went for a 20 minute ride.  It was scary and a little painful, but mostly massively awesome.  I could cry with the joy.  It's hard to absorb, it's that great.

Right now, for the record, I can walk for about 20 minutes on a usual, 'good' day.  And I'm sore, and sometimes feel like my ankles will give out, but I do it.  Riding in a car as a passenger - with pillows beneath and behind me - has the pain start at about 40 minutes into the drive.  At an hour it gets bad.  If the road is bumpy (Ontario roads!) I end up in tears from the pain. 

So being able to bike - just for a little bit - feels like a miracle.  Gratitude for little miracles!

My family's patience

I got mad this evening. Really stupid angry. Ranted and raved and was not an example of the patient, wise mother that I strive to be. My little one did something I asked her not to, but in a sneaky way. She didn't actually break the rules but still did exactly what I had asked her not to do. Normal kid stuff. But it enraged me in a way it didn't need to.

I finally gave up on calming down and headed up to bed, closed the door, and am now taking a long (very long!) mommy time out. 'Space' is what we call it in our family. "Mommy needs some space". No $!&@ing kidding she does.

I can still feel lingering anger. It's crazy train. I hate this about the lyme. I don't know if it is 'Lyme rage', or simply the fact that my buttons can be pushed more easily when I'm worn down from fighting this illness, stuck in the house too much, and grumpy from symptoms and herxing.

I can be so nasty! I am sure the illness is a big part of it but that doesn't really make me feel any better about myself. In the months I was super duper insane in the membrane sick (vs the somewhat less sick but still ridiculous state I'm at now) my temper was so short. Outrageously short. I apologized a lot. In between the ranting. Yikes. Lately it's been better. Which is perhaps why it bothers me so much when I lose it in a situation that I know the normal me wouldn't be losing it in? Funny how things are harder when you're a bit better. Harder when there is farther back to fall.

So I am incredibly grateful for my family's never ending patience with me. With my moods. Still able to see the real me underneath and between it all. I am one lucky, lucky mama.