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.