Easter came and went in a semi-horizontal haze of pain. Brain fog swamped me, nausea, sweats and shivers, aching legs, sore chest, ringing ears, emotional hours when all I could do was sob over the fate of the Titanic 100 years ago! I'm not often down, but last week, everything I read, combined with how hopelessly ill I was feeling, seemed to drag me under.
Nothing made sense. Nothing seemed nourishingly joyful. Niggles on message boards and comments on statuses seemed negative and nitpicking. I found my normally buoyant mood deflated each time I came to the laptop. Sometimes I was too sick even to read, much less respond.
I'm known as a peacemaker and natural mediator. Suddenly I felt like I was in danger of drowning in other people's conflicts, as if I couldn't keep one foot on the bank to help pull them back from the flood without ending up sliding under the current of grief and rage myself.
So much negativity! People fighting over and over the same few inches of ground we've been stuck on for decades with the sickening politics of M.E. People misunderstanding other people's motives when both were surely on the same side. I guess most of us feel those suffocating, helpless, tail-spinny feelings every so often.
With M.E. we put so much of our hope these days in "breakthroughs" and "research". Yet all the evidence seems to spell out that when breakthroughs come, as they do, when research shows the disease is physical, the powers that be simply won't let it get us anywhere. Heads appear over the parapet of M.E. research and awareness, only to be shot down again. Petitions and campaigns are built on people's honest, hard-won "spoons" only to be rejected by the government. They CAN hear. They DO hear. They just don't want to change. It doesn't pay. It doesn't suit.
Sometimes, even within the very supportive M.E. community spread across many social networks, groups and gatherings, we see different strong-minded, opinionated characters tearing one another apart online, forgetting we're all fighting the same, or similar battles. We don't have the time left, some of us, for the luxury of in-fighting. It fritters away what little strength we have. It wastes our focus and energy. We have precious little energy even at our best. We CAN do it together. But we are on a hiding to nothing if we pull ourselves apart!
Conflict, for me personally, leeches and sucks away everything that keeps me going. When I was so sick this last week or so, I just had to peel my eyes away or be submerged in despair. If I despair, I'm no use to any of my friends online and elsewhere who depend on me to stay positive, compassionate and empathetic so we can all move forward together and maybe make a difference for those who like us, are caught up in this illness, willy-nilly. (That's like the hokey-cokey but with the fun taken out!)
I'm usually known for being resilient and hopeful. Last week these gifts almost deserted me, as the overwhelming "emotional lability" of M.E. (as in other neurological conditions) pinned me mercilessly to the mat and drained my personal inner Pollyanna of her lifeblood.
So I drew back for a little, or my struggling sick body drew me away from it all for a while to try and recover my usual sunny equilibrium.
Sometimes we all need to make sure we're watering the roots of our own happiness flower! Doing what puts the smile back in our hearts when we're feeling down or crushed and ridden by our emotions. Maybe chopping down the weeds a bit. Maybe cutting down on spending time staying with situations that are drains not fountains for our spirit. Not focusing energy on people who bring us down. Not wading daily through dialogues that have no intention of going anywhere joyful, or thankful or gracious and humorous but rather seem to prefer to dwell on blame and shame. Life and spoons are too short. Mine certainly are, as I learnt again in this latest M.E. crash.
I'm still not up to much blogging.
Sense may still cease to be made at times!
I may still blubber unashamedly over the Titanic.
I may still feel steamrollered by people's personal battleplans.
But I can still laugh and let the love flood in.
I can still count my blessings.
We all can.
First, here's a brand new video I saw today that's really worth a watch and a share: complied by friend and fellow sufferer Giles Meehan : This is M.E. (Myalgic Encephalomyelitis) - 34 people with M.E. tell it like it is!
Plus ten personal things that make me glad I'm alive that have made me smile these last few weeks:
1. A friend's little boy making himself (and us!) laugh with his made-up (no, not obvious at all!) knock-knock jokes and spotting a Great Spotted Woodpecker through my telescope before any of us adults (Knock -knock! Who's there? Interrupted Sheep. Interrupted Sh... Baaaaaaaaaaaaaaaaaaah!)
2. A bunch of tulips and daffodils given to me by a visiting friend that turned into a smorgasbord of extra textures and colours when some of the expected golden trumpets turned out to be cream and lemon swirls of jonquil and narcissus too!
3. A Song Thrush visiting my patio day after day, eyeing up nearby bushes as a venue for his nest ready to bless us with sprinkles of echoed melodies and speckled young
4. The weather cocking a snook at the weatherman who swore it would be rain, on a day when only sweet sunshine and flossy cathedrals of white cloud were on the agenda in reality
5. An electric heat mat given by a friend some years ago now, glowing its comforting warmth into the agonising crook of my back and aching gluteals as I lay in bed, unable to bear the light through the bedroom windows
6. The lovely Easter messages and greetings, emails, posts and tweets from friends to brighten and bless my days, even though my plans to go to some Easter services went awry this year through illness and exhaustion. God is good! He mystifies me daily with his grace to me!
7. Yorkshire Water sending me a cheque in compensation for low water pressure last month, and the dread as I opened my winter quarter gas and electric bills evaporating into hilarity when I found both were so much smaller than I'd estimated!
8. The Wren, that we hardly ever see, but daily hear singing with a loud trill that punches way above his tiny body weight, hopping just inches away from me through the glass of the back door.
9. Discovering quite by chance on a free podcast download, "The Occupant of the Room" by Algernon Blackwood, a short story I heard on Radio 4 when I was in my 20s, which I've been trying to trace for 30 years, not being able to recall author or title. Spinechilling!
10. My diabetologist, after 30 years of unannounced hypos, Dawn Phenomenon, Somogyi's Effect and all the needles, whistles and bells of Type 1 Diabetes, finally saying those immortal, rare words: "Would you like to try an insulin pump?" when only around 3% of insulin dependent diabetics have one in the UK.
I'll stop there, cos I did say ten things, not dozens! Cos my wrists ache like crazy by now.
Oh yes. I have such a lot to be grateful for. Nothing is going to rob me of my joy.
Please make quite sure that nothing and nobody sidles by to rob you of yours, either!
