The little poets sing of little things:
Hope, cheer, and faith,
small queens and puppet kings;
Lovers who kissed and then were made as one,
And modest flowers waving in the sun.
The mighty poets write in blood and tears
And agony that, flame-like, bites and sears.
They reach their mad blind hands into the night,
To plumb abysses dead to human sight;
To drag from gulfs where lunacy lies curled,
Mad, monstrous nightmare shapes to blast the world.
~ Robert E. Howard
I spent some time with my Lyme Doctor yesterday. I’ve not been travelling well on my current meds. In fact, since mid December I have been spiralling further and further into an abyss.
You might not know to look at me. I look better. For morale purposes I make an effort to wear a little lipstick, keep my hair soft and clean, and I choose lovely perfumes that smell of flowers and grass. I’ve had some sun on my skin, and my sister took me shopping for some pretty clothes.
Most days I don’t look too bad.
Until you get inside my skin.
After my retreat, when I went back on my meds, things went downhill.
I suffered a seizure during herxing just before Christmas. A seizure that threw me out of bed and left me tangled face down on the floor, unable to move until my husband found me half an hour later.
I cut the meds right back but still my symptoms piled up, which is distressing after having felt so much better just a month before.
My fatigue has become so bad that I usually get one or two good hours in the morning. Some days it’s all I can do to move from bed to chair. I keep waiting for it to get better, but so far it hasn’t. Bed is my happy place.
The soles of my feet are on fire, and they feel as if someone has beaten them with a truncheon. The tendons in my calves and ankles are so stiff that I can only hobble until I have warmed up sufficiently to gain some kind of normal movement. This has nothing to do with ambient temperature – here in Australia we’re in the middle of a heatwave. Of course I have chills some of the time, so I’m coping with the heat better than you’d expect…
Nerve pain keeps me awake at night, and has swollen my forearms.
Strange red scratch marks have blemished my skin.
My major joints have the sort of anguishing pain normally reserved for divers with the bends.
Arthritis has returned and the strength in my hands has gone. When we went for breakfast last week, my dear friend Carly had to cut up my food so I could eat it.
My vision has deteriorated. I have constant fevers and night sweats. Brain fog. My glands are swollen, I can’t sleep, and weird things are happening to my ears – which are hot, cold, burning, and giving me a range of hearing issues as well as pain and pressure.
My chest pain has returned, as well as shortness of breath.
I’m anxious, agitated, exhausted and despairing. The pain is only just bearable. It’s taking all of my skills as a meditator and optimist to keep myself afloat right now.
In short, I’m not having fun.
But my doctor is thrilled. From my new list of symptoms he is positive he can diagnose a big flare up of Bartonella in my mix of tick-borne diseases.
So I have a raft of new drugs to go with the ones that are already making me feel so awful. We’re going to hit this hard. And I’m totally okay with that. I’m ready for my big break-through!!!
On New Year’s Day I wrote about the energies of 2014, and the different types of year we might be facing. It’s dawned on me that I am facing the first kind of year:
1. Re-Cycling. We have not learned what we needed – travelling through life asleep, unaware or ignorant. Or perhaps we just weren’t ready to make that change. This year we can learn very fast – choosing to face the lessons head on, or cycle back to the very beginning of our pattern or our story and start the whole learning cycle over with the new cycle then lasting many years. It can be a pattern-breaking year, and a major turning point or a bend in an endless loop. The choice is yours.
That’s the thing about these Lyme-like diseases. You have one good chance to sort it all out and make a clean recovery.
This is my chance. I can’t be faffing about looking after everyone else at the expense of myself. I can’t keep putting on that brave face and struggling forward when all I want to do is collapse in a heap. 2014 is my year for looking these pathogenic monsters square in the eye, not backing down, and then hitting them with all I’ve got.
I’ve given the best years of my life to this illness. I can’t keep doing that. I want my life back. I need to live without rationing spoons, without planning and living within massive limits, and without playing nice when I feel like screaming.
So I will keep fighting this thing with everything at my disposal. Drugs, herbs, science, food as medicine, meditation, rest, nature, alternative therapies, prayer and good-old-fashioned stubbornness. There is no way I am giving in to this. Recovery is my biggest priority right now. It has to be. I don’t have the strength to keep doing this dance endlessly.
Meanwhile I keep reminding myself something I know to be true: My life is already blessed. It’s worth fighting for. Imagine how it will look when I am well!