Doh!

Ok, time I came clean about why I'm feeling a bit down at the moment.

Most of my 10 years of elephant carrying has been fairly predictable. After an initial year spent bed/housebound I made it back to a level of functioning which allowed me to work, and even attempt a degree course (which I was unable to finish I'm afraid!).

I mostly poddled along day to day, coping with my symptoms and limitations as best I could. These were at times quite debilitating, but occasionally I managed periods of relative wellness, (it's ALL relative isn't it?) at one point I even managed a trip to Mongolia and rode horses for days on end!

At some point in each of the last 10 years I have had a relapse, crash, setback, whatever you call it, it's the same old beast! These crashes have always been debilitating, disabling, difficult to manage, mood-shattering, and above all scary. Who's to say how long you'll be feeling this way, and what happens to family life, work and all those other commitments whilst you are unable to contribute? Your daily energy, health and resilience reduced to a fraction of what it was just weeks before.

These relapses have meant I needed months off work, only able to return when I felt it was possible. Work were always understanding, and some semblance of a normal life (whatever that is?) could be resumed. This last 'crash' has been quite different however and has opened up a whole new set of worries for me.

In October last year I had an accident, and a week or so after that my latest relapse started to kick in. My injuries made it hard to lie or sit down, so in the initial period after the accident I was not able to rest as I would have been doing normally. As I write this and read it back I am beginning to see how stupid I was to be surprised I had a relapse..... injury then no rest...."Doh!"

Still, I had an initial month off work and a 'managed' phased return to work was agreed and started. Yes, I know it makes no sense NOW! Just a month off for a ME/CFS crash! I thought that the slow and steady return to work was going to be the best option and I stand by that...... but I should have been healthier and taken more time to recover before trying it!

Since December's return to working just two part mornings a week, I have strived to do as many hours as I can. I have spent each week pushing myself to up my hours and return to a full working week as I have always done. It has been nearly a whole year since this ME/CFS relapse started and although I have had some good days, it shows no signs of lifting and allowing me to settle back into my limited but fairly stable existence. I can manage working part time, but it is eating up my energy, and my life out of work is suffering to the point that it often becomes extinct!!!

I pushed myself constantly over this last year, and I can't help but wonder that if I'd not done so, would I have managed to return to work better and more fully than now? I don't know, but I DO KNOW how sick I feel almost all the time of late. Whether I'm at work or at home.

So now for the honest and heart-on-my-sleeve bit........ I am inevitably starting to ask myself difficult questions. Is this it for me now? Is this level of health/sickness my new 'norm'? Can I return to how I was this time last year, and manage to work as before?

Having a crisis of 'positive thinking'!

"I understand...."

My elephant has lost a few pounds this morning I think, still sitting on my shoulders, but lighter than it has been for a while. The first thing to recover, when I notice I feel better, is my horrible, down in the dumps moodiness.

"Hooray!" I hear my friends cry in chorus! For, tis they who bear the brunt of my 'sharing the joys of ME/CFS!' (Otherwise commonly known as, 'moaning on' about the pain and my limitations etc!) They are a stalwart group, who's support is the best cushion I could wish for.

I am blessed with many friends who support me in many ways, some willingly and some I think who are totally unaware of what they do and how much I rely on them.

At the weekend it had been arranged that my friend, her partner and two children were coming to lunch. I was having a particularly bad time of it, and anyone else, I would have cancelled immediately. I was, if I'm honest, toying with cancelling them, but am so glad I didn't.

They arrive and slot into our home. And, after initial chats and a cuppa, my friend took over in the kitchen, cooking for 7! She even shopped for it cos she knows that's something I won't have been able to do.

She cooks, serves (waiting on me especially!), and arranges the clearing away operations. The men being 'press ganged' into kitchen tidying and dishwasher 'feeding' afterwards. Then, she scoops me up, with a caring "Let's go get you laid down somewhere." and takes me to the yurt.

She then lights the fire, makes tea, and puts up with a very tired and worn down me. We talk a little, sit quietly a little, laugh a little. She should be bottled and given out on prescription!

And then, after all this, I have to ask them to leave as I could no longer manage to be there, laying down or otherwise. Without any fuss, she tidies away the tea things, gathers up her family, and is gone. She texts me from the car ....

"Thanks for a nice afternoon, don't feel bad about needing to go to bed. I understand. Take care."

Need I say more! All that and she still thanks ME for a nice afternoon! She has no idea that single handedly she has (albeit very caringly, and gently) shaken me up and turned my black mood around, instead I am now counting my blessings with this illness.

I have such healing and comforting relationships in my life, due in no small part to ME/CFS and the elephant I carry. Ok, now I'm in serious danger of getting schmaltzy and sentimental, so I'm off!

But, if ever my friend reads this, I mean EVERY word and more! You are truly one in a million!

Eating for 2!

It's been a funny kind of a day! I've not been having a good one, and, if i'm honest my body has been grumbling for a good while, but I've been ignoring it's 'SOS' signals!

I have carried on pushing myself further than I should, but in my defence, Hey, I have no defence...! I just tried to be a Mum, wife, cleaner, daughter, friend, worker, and all those other roles we take on! I just tried a little too hard that's all.

It's not serious, I'll be OK, just feels pretty rubbish whilst I'm in the middle of it all. My mood drops to basement level, and I get really short tempered! Not to mention all the physical symptoms that roll in or worsen (no, really, best not mentioned!)

But, if I could just ask, one of my less severe symptoms in a moderate 'crash' like this is excessive hunger. Is it just me or does anyone else have to eat every two/three hours? Terrible what our 'elephant' makes us do....! Hey, I'm eating for two!

If/when I'm able to, I cover my back by using humour to lift my own spirits, it works eventually, and I can start to see the black cloud dissipating. It just might take a couple more days this time................!

If you feel you can share, how do you guys keep your outlook fairly rosy? Any suggestions will be gratefully recieved. Let's face it, things can be pretty bleak sometimes, but life goes on.........

All the very best to you reader, thankyou for sticking with me in this fairly low mood I find myself in, here's to it 'clearing off' as soon as possible, and hoping we all stay as cheery and well as we can.

take care!