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.

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.

fabulous biking, no progress on the drops

Here I am almost a week after my last post and I have not been able to increase my Cowden antimicrobial rotation drops at all.  I'm still at 28 drops!

Symptoms seem a bit stronger than earlier too.  But I'm not sure.  How can you be sure when there are so many symptoms in your body and they are so strong, yet so subtle.  I say 'subtle' because I am convinced I ignore most of what is going on symptom-wise most of the time.  This isn't to say that I don't take care of my body (+ mind + spirit!) in the absolute best way I know how on any given day.  But if I focused on the symptoms, I have little doubt that I would go out of my mind with frustration and suffering.

On second thought, I may have actually already gone out of my mind with frustration and suffering even without focusing on them.  HA!

Anyhow, is a week at 28 drops okay????  Am I doing this wrong?????  When will I feel well enough, confident enough, to increase again?  How many freaking weeks will it take me to get to 30 drops???? I can't know.  So I just keep moving forward (or not, HA again!) day by day.  We have been on short little bike rides every day or two.  Still 100% in love with it.  I can only ride on smooth pathways - bumpy roads are agonizing.  But we live near a gorgeous bike path next to a river.  So, how about that awesomeness??!!  Lucky.  But what I mean to say when I talk about the bike is that maybe it's not the 28 drops, but rather the new activity that is keeping me at this level of meds.  Maybe it's a combo.  Maybe the biking has nothing to do with it.  Again, who knows?

Grateful for the tandem bike loan.  Grateful for the bike path.  Grateful I have a husband who is willing to do all the work on the bike - essentially towing me along until someday I have regained the endurance, strength, balance and judgement to be able to ride on my own again.  Grateful I can bike alongside the kids for the first time in half of their lives. Grateful that it doesn't matter if I ever get that well again - I can still bike!

And hoping that these days of 28 drops on Houttunyia and Enula are doing great, great things in my body.

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!

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!

Licorice root tea

Hot sweet herbal tea is hitting the spot right now. Sore throat, chilled body... emotionally in decent shape, surprisingly. But craving some physical comfort. Mmmmm!

Licorice root tea is more than just my fave flavour of herbal tea, it's also healing for the adrenals. I just leave the bag in and it gets so deliciously strong and sweet. Heaven knows my lyme-stressed adrenals can use the nourishment. Although I don't have numbers for that yet. Went to the lab for an 8 am/4 pm cortisol blood test today. (So twice, went to the lab twice in one day... extra extra fun. Would it be okay if I took two numbers from the little paper take-a-number machine first thing in the morning? Puhleeeeeaaase???) Anyhow, I guess I'll find out results soon enough.

In the meantime, I'll be soothed and grateful for this wonderful tea!

***Note: this is not my fave mug. And it's not Christmas time right now, it's April - spring! However, it's by far our largest mug. :)

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!

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.

My first post

Stuck in bed day after day can quickly turn to year after year with chronic illness. I have a lot of practice with this now yet it still blows my mind how difficult the journey is. I had no concept of how hard it could really be until it happened to me.

But... the silver lining. Dealing with the pain, exhaustion and social isolation of chronic Lyme disease for nearly four years now has led me to find joy and appreciation in the smallest of things. Maybe forced me is a better way of describing it. I was determined to find some way of finding good, and lots of it, in the midst of the physical and emotional pain that had taken over my life.

Chronic illness or not, I now believe that this is really what having a good life is about. Enjoying what is available to you from moment to moment. Letting go of the need for more, bigger, better. Letting go of comparing to what others may have, do or be. Letting go of the desperate need to escape where you are right now. I don't mean giving up on hopes or dreams. Hold on to those. Enjoy those! But at the same time, submit to the now and appreciate the beauty it too can offer.

This blog will be my journal of appreciation. A documentation of gratitude for little, regular, every day things. To celebrate on the days I am up for joy, and to remind me on the days I need reminding.