Reality check!

I love to blog about doing lovely things, as in the last post, 'I Follow Humbly'. This is unfortunately not always the reality of life however. I managed that Lark Rise trip through careful planning and taking it easy in the days leading up to it, so that I could enjoy it. Thankfully it paid off and I had a great time.

Since that trip things have conspired to bring me back to earth with a 'thump'! It is sometimes my own doing, cos I push myself to my limits (and sometimes beyond em) but this time I am largely blameless!

Work has been more than usually stressful this last couple of months, building nicely into a semi permanent 'teetering on the edge of crash' state! I find I am unable to sort a particularly knotty issue out, caused by circumstances out of my control, all getting a bit much with this illness that hates stress.

Whilst my energy levels have been worse there are the usual culprits that appear when things aren't going so well. That bone crushing, aching tiredness and weakness that can stop you in your tracks sometimes- the body that's suddenly too heavy to take another step, and a brain that might be able to do the Times crossword one minute but can't find the words I need to complete a sentence the next, (sorry, that's not strictly true-I don't think I could do the Times crossword even when well!) Hearing sensitivities, tremors, muscle spasms and brain-fuzz of the most debilitating 'I can't remember what i am supposed to be saying' kind are also here and look like they're staying!

I am prone to muscle spasms in all sorts of odd places but my lower tummy has been really troublesome just lately, with horribly painful spasms and tension in the area around my pelvic floor muscles. I just cant relax them at all, night or day. Night is worse as lying down seems to make the pain more intense...no sleep for days now! Is this just my own brand of ME/CFS or do others get similar symptoms too?

Things aren't always good in anyone's life, they're sometimes very hard, painful, lonely and frustrating but I have an unshakeable faith that things do change, and hopefully for the better.

Will someone remind me of this please, when I'm mired in pain, fatigue and a basement low mood!? It's sure to happen, not as yet as I am definitely upbeat, but, as they say, "it's not over till the fat lady sings!" (But, don't worry, I'M keeping MY mouth firmly glued shut!!!!!)

Dissolving Concrete!

There's been a change in the weather here, from incredibly hot and humid, to plain old chilly with water falling out of the sky! Its been so long since that happened I've forgotten what it's called! Something to do with cats and dogs maybe?

It's a great thing though, it seems to have rained through my head, and taken some of the concrete with it, who'd have thought it, dissolving concrete! My head is clearer, calmer and I can think! Well, I know I'm maybe 'bigging up' my cognitive abilities, but it's all relative!

The world should get ready today as there are some knotty issues out there which I have been a bit remiss in sorting out. It's hard to have legality/policy based conversations with people when you are having trouble remembering what you were saying halfway through saying it!

There is a little teensy weensy bit of a downside though, cos we have ME/CFS and it's effects are always there - even when the concrete has trickled through the cracks in my brain. My head is clearer and feels great and I'm loving it, but my body is putting up a mega protest of it's own since the weather change.

I woke in head-to-toe pain yesterday, not something I usually suffer from. I generally manage to stay asleep if pain comes on overnight, it just hits me in the morning as I struggle with the usual joys of waking up. But this time I woke and was unable to move, call out, or poke my hubby to wake him! I just had to lay there for what seemed like an age, sweating and breathing my way through it till my arms would move and I could take the tablets which are kept in the bedside cabinet. When the pain had gone a little I was able to get up and go lie somewhere else, so hubby could sleep on.

I worked yesterday, even though I was a little drugged up on painkillers etc, but I made it through. I'm gonna have another go today as there are a couple of meetings I should be at, and I have tomorrow off anyhow.

It's a hard thing to do, to try to explain to healthy friends/family why I'd try to get to work through something that they would definitely stay in bed for. I think it has a lot to do with the constant sickness that this disease brings. We have to get used to a certain level of 'feeling ill' as being a good day, and if we stayed at home for every ache and pain we would, most likely, never be out at all.

I'm happy to put up with this level of pain (drugs accepted of course!!) if it means I get my head back and can carry on conversations and READ!

I hope that wherever you are the weather is being kind to you,

Gorillas Don't Like Pasta Sauce.

A slow start today, mostly cos my body had a few issues of it's own first thing. There seemed to have been some kind of stampede whilst I slept, and everything in it had run over me, or, my arms to be exact!

My arms are always the first to go... weak and very sore. It's strange but they seem to be most painful in one small spot on the front of each bicep. Hubby (henceforth known as Mr.H as it's easier to type) thinks I'm bonkers when I complain that a cup of tea is too heavy, and feels like I'm lifting a bucket to my lips!

I'm blogging from my bed, my typing arm propped up on Mr.H's toy stuffed gorilla! He's a great shape, hugs your arm and is so comfy! Slightly bizarre, but comfy! I read a post by my friend Kerry, (Lemon-aid online) where she extolls the virtues of her many pillows and cushions, and I NEARLY confessed my love for the hairy, cuddly toy that I use to prop my sore/weak arms up with-but I didn't! (For those who are unsure, I am still talking about the gorilla! Mr.H is kinda cuddly, but there's not so much hair there these days!!!)

After spending a few hours in bed, I'm off to organise dinner. Mr.H is busy somewhere, so I hope my son can whip-up a quick pasta sauce and meatballs-I'm sure he can! I'd volunteer, but I'm sure it's the kind of job I need arms for, and I don't want to get pasta sauce on my gorilla!

Myself to blame...!

Well, it had to happen didn't it? I only have myself to blame today, the payback for being healthy enough to go out and do something lovely yesterday has me in it's clutches. That elephant is HUGE - he's dancing on me from head to foot this morning....

Enough of him, lets talk about the 'something lovely'.

I own a pretty cute pony and carriage, as you can see he is a very good boy. My hubby and I took him out yesterday for a trot through the most gorgeous countryside and villages. The sun was out, roads were quiet, pony was happy-blissful! Heck, I even got to talk to hubby about some stuff that had been bothering me.... can it get any better?

The sound of hooves on the road, birds in the hedgerow, and distant farm machinery heralding the start of the farmer's busy season, spring had finally got sunny. We had to stop for photographs, people often leap outta cars and snap us as we pass by - or people in the villages smile and greet us. It really is the most wonderful way to bring on payback, that i know.

But, (and there always is one isn't there?) by the time we trotted back into the driveway, I knew I had overdone my day. The dragging feeling had taken my strength, it was all i could do to climb down and lead Merlin away. Hubby sorted him out, fed him and put him away for me and I came home to bed. Which, if I'm honest, is where I've been ever since - but what a way to get payback??!!

I know that people who see me driving the pony, smiling and enjoying myself, cannot comprehend how it affects me when I do this. They don't see how much pain I have, or the muscle weakness/shaking, headaches, neck and spine that is sore to touch, skin sensations, dizziness and treacle-thinking frustration that hits me soon afterwards. Maybe if they did, my life might be easier.

Should we allow our friends to see us when we are bad? I allowed one once, and after a long time had passed (I think she needed recovery time too!!!) she contacted me and we are still friends, but with a new understanding - I know she believes and understands me better now. Should we let our close friends in to see us at our worst-payback? Would this finish or strengthen a friendship? I dunno, and don't really want to experiment, the stakes are too high.