Lemonaide Anyone?

Here goes, such a long time and SO MUCH has happened in the last few months...where to start!?!

I am feeling surprisingly OK bodily-not much in the way of symptoms today really. I have my good old sound sensitivity but most of the other troublesome stuff seems to have relaxed for the time being at least!

Mentally things have been a HUGE challenge lately though, but thankfully that too has started to lift so all's good! I take thyroid hormone for an underactive thyroid and had allowed my drug regime to slip a bit with the stress of some work issues that have been rumbling on for a long time now. This resulted in me becoming hypothyroid, with the usual dry skin, hair falling out, worsening fatigue, pain and depression.

Depression is such an empty word don't you think? Doesn't really cut it when you start to try to describe how it eats away at your life, your character and your very being. I've had it before, and recovered before, but it's always just a few forgotten thyroid meds away-but I am fortunate to know it's cause and to be able to sort it out within a few short weeks of following my drug regime properly, or altering the dose with the gp.

I can't really say what's happening at work STILL....! Suffice it to say that it is a very uneccesary situation concerning my working hours and advice from Occ.Health. It seems to go from being confusing, troubling and upsetting to MORE confusing, MORE troubling and MORE upsetting!!! I really hope I can get some resolution with it so I can blog some details...maybe it might help someone going through a similar process, you never know. I sincerely hope that nobody is though, it's such a stress.

I'd like to say a warm and VERY HEARTFELT welcome back to my good friend Kerry, who has been absent for such a long time due to ME/CFS which had begun to affect her eyes so badly that being online was no longer possible. She is a fantastically determined and strong lady, who instills great calm and admiration. She writes 'Lemon-aidonline', a beautifully written blog, the link to which is on my bloglist. Thanks to some magical software Kerry is now able to rejoin her friends in cyber-space, and am I pleased to see her!

After stumbling across and reading her blog, then becoming friends, I was inspired to have a crack at blogging myself- so if you wish to protest at my being let loose with a keyboard at all.....Kerry will be pleased to hear from you!!!

Enough for now- take care and take a trip to 'Lemon-aideonline' to say "Hi" to my mentor!!!

Zarla

Silly Me!

I am a silly old 'elephant carrier' aren't I?!?

I have been pushing things just a little too much for quite a time now, getting on with life and trying to be all things to all people. Not enough to actually crash, on any one day, but slowly grinding myself into a mushy, achey, braindead and foggy....... mess!

Messy is how I'm feeling just now.
Short post - normal service will be resumed - soon I hope!

My Brain Scares Me Sometimes!

I'm missing my holidays, yes I have only worked 2 days per week over the summer, but I've had possibly the most stressful 6 weeks ever!

There have been work stresses which have meant late evening phone calls, conversations which need brain power and concentration in spade loads. Exhausting!

My husband has been doing fencing, making gates etc, for his pigs. This has meant I (and it has to be me because he doesn't drive) have spent many hours going here and there on some errand or another. Buying, sourcing, fetching and carrying bolts, wire, screws, wood, hay, pig food etc etc etc....the list seems endless! Exhausting!

Looking after the pony and carriage, meeting the farrier etc. Being taxi driver for Ben to go back and forth to work at the stable, and his riding lessons. Exhausting!

Trying to cope with family life over the summer, demands v pacing/resting. Need I say more, I know you're all nodding sagely.

Organised a 16th birthday for my son, which I don't begrudge the guy at all, but it's.... wait for it......... Exhausting!

Looking at it all it's little wonder I'm as frazzled as I am, it's a formidable and daunting list. All this mixed in with a hubby who, at times, is a good way short of being understanding, and the general day to day activities that I normally manage.

I think I've done fairly well to still be upright by now!

It is all very stressful, and I feel that stress bodily and mentally, but mostly cognitively. I can forget within a nano-second what I was doing or saying. This is OK when it's something like "which load of washing was I putting in the machine?" But when it's something a bit more important (not that clean clothes aren't important you understand!) such as, when driving, which pedal is the brake? Boy it sometimes scares the pants off me!

That particular lapse has only happened once, just yesterday, and I'm still reeling from the feeling of panic. Having to check in my mirror then take both feet off the pedals and re-evaluate what I was asking them to do. The possible consequences are too much to think about. In fact most things are just now!

These cognitive challenges are a whole post on their own, but the point of this one, I think, is to tie my concrete-headedness in with the difficult times of late. Much as I try not to admit it, I can't handle stress like I used to, and it's getting worse.

There are some difficult times ahead, my son starts college and later this week there is a meeting at work that I would much rather never needed to happen. I am seriously wondering how much longer I will be able to sustain the upright version of me.....!

I hope I can, it's a much better version than the pyjama'd and horizontal one that threatens to rear her 'ugly' head!

I hope, oh faithful and determined reader, that our respective 'worlds' are kind to us this week, and our brains can keep up!!!!!!

Thought Stream

Hey it seems like AGES since I wrote anything, it's not been through choice, but life has been keeping me busy, with not much cognitive 'oomph' to spare! I work just two days a week at the moment, and have been trying to keep up with family life and demands over the school holidays.

There is a pretty stressful work situation that has been brewing nicely for the last few months, and is now really taking it's toll on my head and it's tendency to 'jam'. There have been lots of anxious times, and some stressful encounters to try to get through. I am hoping that it will be nearer to it's conclusion next week. Fingers crossed for me! (Cos, if it goes on much longer I dunno if I will have the 'mojo' to keep up with it!)

My son is now 16! I am so proud of him, and the obstacles he overcomes- life has it's challenges for him too. He gained 7 GCSE's and is now looking forward to starting at college soon. He is heavily into horses and riding so he's off to do a horse care course.

Pigs are my husband's latest obsession, or more accurately two Kune Kune weaners (FYI- this is what they're called before they have their first litter) called Agnes and Winnie.
They are both quite nice girls, very affectionate and love a good belly scratch! They eat ALL my non-meat kitchen and garden scraps and are so clean I can't believe it! I have never come across such inoffensive creatures in my life. Think we humans could take a leaf outta their book!

But, having said that, have you ever tried to give a weaner an injection (shot!)? They're not quite so inoffensive then!

When I say obsession, I mean it! Hubby has turned into a 'pig-bore', he even has a webcam set up in their shed so he can see what they're up to 24/7!!! I think there has to be some kind of law against pig-cam, but he is LOVING it! Just looks like a lot of snoring, snoozing and scratching to me though!!! Perhaps that's what he likes about them!??!!

There is no point to this post, just a waffle- sorry if you were on the edge of your seat waiting for the deep and meaningful! It's just not going to happen today!

Health wise, (and I suppose we always have something to say on the matter hey!?) I am struggling with what I suspect will turn out to be Interstitial Cystitis. If you are with me on this one you'll know just what I'm talking about.....! My GP was going to give me something to help with it, but I am heavily against taking drugs until I have tried all other avenues, so I'll rethink this after giving some other lifestyle and diet changes a try first.

My stamina is low, my heartrate high, my head full of concrete and my body heavy, (Well, I suppose the 'head-concrete doesn't help.....!) I'm feeling just a teensy weensy bit frustrated as I'd really like to be boiling beetroots for pickling and making damson jam. But, instead of this I'm laying as flat as possible, TRYING to rest and type...!

I'm having an "oh woe is me" moment, no apologies! I know it'll pass and lets face it, we all have them!

Just a List!

Headache,

Dizziness,

Disorientation,

Skin and muscles sore to the touch,

'Wandering' skin sensations that sweep over my body,

Bladder pain,

Over sensitive hearing,

Symptoms fluctuate and change throughout the day,

Eye pain in bright light/sunlight,

Muscle spasms,

Weak legs,

Sore throat,

Easily startled by sound/touch,

Irregular heartbeat,

Occasional paralysis,

Tremors,

Weak and very painful arms,

Severe memory difficulties,

Bladder frequency,

Insomnia and sleep that doesn't refresh,

Sudden onset muscle weakness,

Chest pain,

Poor coordination/clumsiness,

Slow processing/thinking,

Word finding difficulties,

'Foggy' brain/thinking,

Inability to cope with one more health professional who believes this is all in my head!

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,

Concrete in the mist!

23- This is how many times I've started this post this morning....! Oh the things my head is and isn't doing today. It's a painful mess of whizzing/flickering thoughts, images and snippets of remembered sounds.

On days like these I can best describe my head as 'concrete' in the mist.....! The mist swirls with these unwanted and incredibly random thoughts and 'stuff'. If I try to navigate through this mist, to think properly, I eventually get to the concrete.....this is what has happened to the rest of my brain!

(It's now much later, it's exhausting this blogging, especially when someone has concreted the inside of my head!)

It feels physically heavy and 'set'. Not in a nice 'set yogurt' or 'jelly (jello)' kind of way, but definitely concrete.

Thinking and trying to be creative (blogging etc) through this is incredible, and I think i'm going on about it too much, but today I'm really struggling and have to admit to that! I can't remember a time it was ever this bad!

It's not going to be a post with a point, I'm just resigned to that after hours of trying to write and failing,......!

This is probably my most debilitating symptom, and certainly hard to describe to others, especially our nearest, dearest and interested others. Hubby has retreated, as he can see how tough i'm finding it today.

I hope you all have a concrete-free day!

"Smile please!"

Oh what a laugh we had yesterday!!! There are some 'shenanigans' going on at work, something planned for a colleague's retirement so I can't say anything incriminating. But it involved many giggles yesterday afternoon.

I was photographer, (I know it sounds intriguing, I'll share when I am able to!) and took an active part in setting things up. Not hugely physically demanding but I knew, as I was laughing along, that of all involved......I'd be the one doing time later!

Sometimes it's easy to get wrapped up in a fun situation, be enjoying it, but all the time knowing how things will most likely be in a few hours, or the next day. Most of my payback usually starts just hours after something 'too exciting', but it can be anything up to 24-36 hours later, so I don't think I'm quite done yet!

Last night I began with the arms and the throat, not to mention being suddenly so heavy that horizontal was the ONLY option! My skin crawled and my brain malfunctioned!

Predictably, this morning, I am here in bed, legs refusing to play the game as yet, arms sore and shaking, eyes zooming about refusing to stay focused on one thing. I think I probably deserve the raw throat from all the laughing, but I'm not sure the rest is fair...!

There seems to be little chance of showering/dressing just yet but my body might still come back 'online' so fingers crossed!

I'm not sure when, or even IF I will make it out of here today, but what photographs I have to show you when I can.....! I am supposed to be in work today and will, as always, do my best- but if I make it, please girls.........NOT SO MUCH HILARITY!

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!

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.