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. 

Taking some recovery days

Here it is Wednesday and I still can't seem to recover from having out of town guests last weekend. My body is wanting rest. A tonne of it. I'm grateful that this week is a quiet week and I can give in to a lot of resting. But my poor mind feels like it is going crazy with all this exhaustion. I'm used to a fair bit of fatigue of course, (and I'm sure that is putting it mildly as I tend to minimize it all in my head as a coping strategy) but I guess I've also gotten used to having a bit of routine whereby I'm not in bed quite this much or fighting my body to be out of bed quite this much.

All an amazing indication of the healing that has gone on these past two years. :)

The solution of course is well known to me at this point in my healing journey. I need to listen to my body and give it what it needs as best I can. And listen to my emotions too. Honour my frustration and honour the grief. Honour the anger. I can, and am, doing all of this. Letting it flow.

Yet I still feel like I am going crazy!!! So this too, I honour as best I can.

So, is it worth it to have company stay? I honestly think, at this point, that I'll need to limit it in the future. I did a lot of prep before our guests arrived, I rested a lot while they were here. I stayed up too late in the evenings chatting though because it was fun. And I probably cooked and cleaned up a little bit too much while they were here. I need to learn to ask for more help. Next time I think it might be wisest to limit an overnight visit to one night too.

Lyme is really hard. I still want to be able to have guests and visits but I need to balance this with honouring my limits. And not feeling guilty about it.

Out of town guests when you're sick

Hubbie and I slept in a few extra minutes this weekend morn, but there's not much sleeping in to be had when there are rounds of meds to be taken. And when your best energy is first thing in the morning. I wanted to get up and properly nourish myself and then make both breakfast and dinner so my guests would be properly taken care of, for today.

Well, more or less.

What do you do when you're chronically ill and there are guests to be entertained and cared for? I default to making sure they are fed, and then chat as much as I can, while resting in between. This works out okay... I hope.  I'm okay.  I'm too tired but I cope. I am so grateful to have people who love us take the time out of their schedules to travel and hang out with us. I end up feeling guilty about being a poor hostess though. Who goes back to bed right after their guests have risen for the day and been fed breakfast? It feels weird.

I'm working on acceptance and losing the guilt. It's far from how I would ideally entertain, but it's pretty darn great for our current circumstances. Which means it is perfect for today. Not so different for someone who isn't ill and is hosting. You do your best and let love take care of the rest.

Good days

I haven't posted in a little while simply because I haven't been lying in bed as much.  How absolutely freakin' fantastic is that?!  This has happened to me a few times now in the nearly 4 years that I have been sick, and 2 years that I have been under treatment.  Literally, a FEW times.  Once last fall, once in December, once in January, and now this last week.

Yippeee skippy, happy days!

I like this.  A crazy lot.

I'm on my best antimicrobial rotation - Samento and Banderol (Cowden Protocol) right now.  The one I have been on the longest.  The one I now herx on the least.  It's my first week on it for this go round and I have been up'ing my dosage very very slowly.  Trying a new idea out...  What if, heaven forbid, I increase my dosage drops at a rate that does not make me herx to the point where I feel brutal all the time?  And the answer to that question is that I honestly don't know.  I love this protocol.  I'm healing.  But I herx nearly all the time and hence am an inflamed, sicko mess nearly all the time.  Pulling myself through the days on sheer willpower, faith, and feigned enthusiasm.  Which are all great - but how about giving myself a break for a bit?

This is what I want to try.  Not much of an experiment when I start out on it with my best rotation.  But, I have to start somewhere and this is the next one up. It doesn't hurt that summer seems to have appeared out of nowhere too.  Snow two weeks ago and 27 degrees today.  Such a relief!

I've still been in bed enough.  The usual nap-time calling my name from 12:30-2:30 each afternoon.  Forcing myself to get up when I wake up.  Bed enticing me to retire for the evening at 7:30 pm or so...  But the time I'm up in between isn't as difficult as usual.  I'm in a better mood because my head isn't spinning and hurting as much.  My body still hurts too, but maybe not as much either.  (I don't know - I tend to ignore it a lot to keep the positive vibe going). I'm more active though.  Doing a bit more, sitting a bit less.  Did some weeding in the garden, took not one, but two walks with my child - even took the dog along which usually I don't have the patience for.  Cooked a bit, cleaned a bit, a few loads of laundry, swept the decks and patio.  Fun, fun, regular person weekend stuff.

I love the good days!

Quiet

Hanging out here, resting in bed... after supper. One kid already asleep in her room, the other watching hockey with her dad in the basement.

My bedside lamp casts a warm, comforting glow. It's quiet. So quiet and calm that the pups don't even look up when I shift positions. Everyone is content. I don't care about the pain in my body, or overwhelming fatigue in my head. Because I feel so peaceful.

Fuzzy blanket!

Today it's this warm, fuzzy beige blanket I'm grateful for. An odd material, I can't recall what it is actually made of. But it is comforting against my skin that is tender and sore to the touch. Strangely soothing to the nauseated-headache-y sensation that seems to have engulfed my entire being.

Writing this, I suddenly realize that it is like snuggling up to a giant, warm, lightweight teddy bear. No wonder it soothes!

Studying

As sick as I have been, I can sometimes still study in bed. I just have to do it in short bursts with lots of rest in between. No schedule, just heeding when and how much my body says is okay.

I'm learning about holistic nutrition to help me heal. And I've discovered an absolute passion along the way. Lucky, lucky me. :)

My bedroom window

The sun is pouring in this morning after too many days of dark, cold and grey. Warming up spots on my bed. Heavenly.