“How do you do it?” she asked. “Just how do you manage to keep it together in spite of how miserably sick you often are? It is just so hard to keep doing this, you know?”
It is a question I get asked often, and there are a number of answers.
First, a rundown of what we’re dealing with.
The common perception of someone with one of the Neuro-Immune Diseases (NID) of Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), chronic Lyme disease or other tick-borne disease (TBD), is that it can’t really be as bad as we say it is, we’re lazy, or, we’re making it all up. Or, that we’re just depressed and “need to get out more.”
Nothing could be further from the truth.
Every victim of these very real, physically devastating illnesses I know actually is quite skilled in hiding their true level of discomfort and pain from their family and friends, struggling to hold on to some semblance of normalcy in their life until it simply becomes physically impossible.
Patients with mild ME/CFS, NID, etc, can sometimes work part-time, look after their families, and have a social life.
But for severely ill patients, that is not the case. Not at all. They ever so slowly get worse, and enter the phase we call “the living death.”
A really brief “refresher course” for those not familiar with our illnesses:
“The Before Times”
Virtually every patient I know was very active in “The Before Times, ” – what we call the years before these horrible illnesses blindsided us.
Many of us were “outdoorsy” types – campers, hikers, runners, gardeners, and a disproportionate number of us were horseback riders (perhaps – or perhaps not – because a strain of Bartonella has been found to infect horseflies and be transmissible to humans).
We were not lazy folks, generally speaking, and we’d all love to be strong and healthy enough to take up our previous pastimes. What I wouldn’t give to be able to ride again!
But you know, we’d really all just be happy if we could function well enough to take care of ourselves, and not be a burden on the family or friends we’ve come to rely on for everyday care.
I’m intensely grateful for the loving care my youngest daughter, Rhiannon, gives me every day, and her partner, Ben’s care, too, as well as the support I receive from the rest of my family.
Some of us don’t have anyone, and suffer alone, in a sheer struggle for survival. My heart goes out to them, and if you are one, I urge you to get active online in some of the forums and facebook groups, and build yourself a virtual support network.
Grieving My Losses
I think an important first step in dealing with these illnesses is recognizing all that they have taken from you, and grieving your losses. And then, grieving for them again, because I don’t think we ever really finish the grieving process – it’s a spiral, not a circle.
All those things I love to do, but can’t anymore – the horseback riding, the gardening, etc – periodically come up to be acknowledged again, and I try to remember that I led a life full of unique and rare experiences before I became ill, and to be grateful for what I had, rather than regret what is lost.
However, there are always new things to grieve, as I get sicker.
Many of us have been avid readers, but the ability to lose ourselves in a good novel is often one of the first things to go. When you can’t remember what you read the day before, or keep track of charechters, it becomes impossible… and yet another thing lost to these illnesses.
Recently, my migraines and light and sound sensitivity have gotten so severe that I’ve lost the ability to watch TV, even with the brightness, contrast and sound down. I’d love to go to a movie, but haven’t in a long time, and doubt I could handle one.
So, I acknowledge the losses, but I then let them go, and embrace what I can still do.
Blogging has turned out to be far, far more than I thought it would. I started blogging just to keep my family updated on what crazy health stuff was going on, but then I found my voice… and I was found by fellow patients, some of whom have become dear friends.
Many others have emailed or messaged me telling me how a blog post has really touched them, sometimes bringing them to tears (usually the good kind), often expressing that if they’d had the ability, they could have written exactly what I had. Sometimes people have questions, and I do my best to answer them.
Slowly, the realization has come to me that maybe this blog was the point all along, maybe it’s my “work” here on Mother Earth. I always wanted to write, but never had the time. Now, I do, and plenty of subject matter.
There are a lot of really sick people out there, suffering from these very misunderstood illnesses, and a lot of very odd “coincidences” and connections have been made to bring some of them into my life.
I’ve seen that my writing is making a difference, which is huge. I may spend 90% of my day in bed, but I’m still having an impact in the world, and for that, I am so very grateful.
Mother Nature is strong medicine, and while I used to enjoy Her during epic horsetrekking trips or camping, now my options are more limited.
But, that doesn’t mean they aren’t there! I’m blessed to live in the mountains I’ve loved since I was a child, with amazing views right from my bed. A screened in porch with a hammock-chair is well used, many times a day for very short periods of time (that whole “vertically challenged” thing).
From there, I can watch gorgeous sunsets, the deer amble through the “yard,” fawns in tow, observe the nesting birds, flight of the hawks, occasionally spy the fox, and watch as the seasons change. A few steps away is the container garden on our deck, with fragrant herbs and flowers.
Friday, I watched the Blue Moon rise above The Mountain, alone in the moonlit forest, and it was wonderful, if only for a little while.
Beauty, natural beauty, is integral to my staying sane.
I have many friends on Facebook, but most importantly, a strong, loving and supportive Circle of Sisters, most of whom are also ill. We catch each other when we stumble, cheer each other on, and commiserate over the pain. It is somewhat ironic that after being pretty much a loner all my life, with few friends, I now have more friends who I deeply love than ever before.
I am gratefulfor each and every one, and all the Love they bring into my heart and my life.
It may take me a month to do something a healthy person could do in a couple hours, but it doesn’t matter. What matters is that I work at it (usually “it” is crafting a bead from fossil ivory) as I’m able, 10 minutes here and there, and when I’m done, I’ve created something beautiful.
(Bet ya saw this one coming.)
Maintaining an attitude of gratefulness for all that I do have – a loving family; wonderful, supportive friends; a home I love in the mountains I adore; good medical care; access to the internet with all its fascinations and distractions, etc – helps tremendously. When things get rough – and they’ve been very rough lately – I try to remind myself of all the good things I have.
…none of that is enough. Sometimes, I wilt under relentless migraines that go on for weeks at a time, or get so frustrated at my inability to accomplish even small goals that I just want to scream.
I’m not the perfect pillar of strength that some people seem to think I am. And like most of my more seriously ill friends, I’ve watched as I’ve become more and more of a burden on the people who love me.
Those are the days I either contact one of my spirit sisters for support, vent to my mom, relentlessly sand a bead to distract my aching brain, whine a lot, reach for a klonopin…
…or, all of the above.
As one friend and I say, those are the days we get by, one breath… one moment… one hour…at a time.