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!