Beware, Elephant at Work!

I haven't really blogged about this much, but I have been going through a phased return to work after an ME/CFS crash a while ago. It has been fraught with pitfalls and disturbing situations, but I hope we are now someway to sorting all this out and sanity resuming! I am seriously hoping for a reduction in the stress that I have had to endure over the last, erm, well...... 11months all in all!

What I was striving for was a return to full time hours. The powers that be were not very keen to let me do this, and I don't think it has much to do with their concern for my health!

It's immensely hard to have such a huge knock to your health-an ME/CFS crash, and to have to try to make it back to work. Then to have to go through situations which question your work, your honesty about your health and to have to endure comments which are at best discriminatory is really piling on the pressure. All the pay, conditions and decisions are taken out of your hands and the only one who knows how you and your body is coping -you- is not consulted! All this with the weight of an elephant in your holdall!

When I look at it like this I think it's a small miracle that I have managed any recovery from the 'crash of '09' at all! In my brain-fogged state it is often easy to sit and ponder why this crash has been so much more difficult to return from, and to assume that it is because of a worsening of my ME/CFS or even (God forbid!) that I'm not a spring chicken any more!

This illness is so complicated and reactive to stress. This crash and subsequent climb back have been my longest and most difficult to date, due in no small part to the 'stressful' feel of the process specifically put in place to aid and enable my return to work. CRAZY!

I am sure however, that this process goes quite smoothly for some people, and if all advice from GP's or Occupational Health is respected by the bosses it can have great results. Unfortunately it is the patient/employee who suffers when this does not happen. I can only speak about the process as it was for me.

It would be easy (but not advisable) for me to point fingers of blame and resort to a bit of dirt-dishing, but I won't. I want only what I have wanted all along, for my elephant and I to return to work and to be able to just get on with the job I love to the best of 'our' ability.

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

Elephant, free to good home!

I have spent my morning poddling about the house, not really doing much and sitting down LOTS! I kept thinking that after lunch I would go out and check on Merlin our carriage pony.
Mmm, I should have known that that elephant of mine would make his presence felt, and weigh me down -he has! My body feels so heavy and my legs are sore, I really need to be horizontal

My 'pony check', followed by a cuppa with my friend looks much less likely from where i am just now -horizontal on the bed!
Boy it's frustrating when my diary gets rearranged..... by a bloody elephant!

Anyone know of any elephant weight-loss programs? :o)

You know you've got ME/CFS when.......

I'm not one for inspiration, I seem to drift along in my world and miss all sorts of shareable, blog-able stuff. Or Maybe, it doesn't even happen to me, I dunno!
But I got a tweet (twitter speak for the uninitiated!) today, and I quote,

'You know you've got ME when..... you eat your cereal with a large spoon cos it takes less energy'.

This got me thinking about the little quirks that have crept into my life and become almost habitual since becoming ill, the kind of thing the doctors never warn you about!
I have to say I often let my cup of tea go almost cold, so I can drink it in just one 'mug-lift'. I also shuffle about the bedroom, herding dirty laundry (socks are especially tricky critters!) with my feet so I only have to bend down once to pick it up. Mmm, sorry for the slightly grubby picture of domesticity, but such is my life!!

I walk around accompanied by a kind of wind-chime sound when I'm out of the house as I have to attach my car keys, house keys and work i.d. to my person, so that I don't lose them! Goodness only knows what would happen if I fell in the lake.....sink like a stone I expect!

I'm certain these aren't the only things that I'll think of, and will probably add later, but please let me know of any little things you do now, that make life a little easier.

You know you've got ME/CFS when .............

Elephant Footprints on my Brain!

It's been a very long haul since the last time I felt able to write a post. My life seems to have been taken over by a very exhausting and largely unnecessary situation which is not easy to blog about.

I would love nothing more than to tell all, and share how difficult things can be for PWME who also work, but I'm scared that blogging about it may compromise myself and my situation at the moment. It REALLY doesn't need any more complicating!

So, I think I'm on safer ground telling you how my health is being affected by the 8 month ordeal (so far!) that I find myself staggering through - utterly mentally, emotionally and physically exhausted-!

A lot of added stress is being placed upon me by a boss and a situation, despite advice from medical practitioners, and the situation just goes on. I have been left striving to continue to do my job, giving 100% as I always do. This has not only halted my recovery from the ME/CFS crash that happened a year ago, but has reversed it somewhat.

My body has been less mobile, more painful and on the whole plain old 'doddery-er' than at any time I've been at work. I often drag my legs, stumble, lose balance, shake and can have very painful muscle spasms to contend with, whilst trying to maintain myself and my work persona.

My heart rate has been all over the place, and light and sound sensitivity have threatened to put me on my back more than once. The heavy dragging emptiness of the fatigue (many elephants worth!) is sometimes overwhelming, but me and the herd, we fight on!

Mentally and cognitively the challenges are ELEPHANT SIZED too! I am having to try to keep 'he said this' and 'she said that' all in my head and talk about them with some kind of fake confidence. I am trying to keep written records of key conversations but even committing them to paper is an ordeal that leaves 'elephant footprints' on my brain.....destroying it for the rest of the day!

Face to face meetings about contracts and grievances are horribly difficult to be in. Not only is there the stressful situation, but I am having to keep attention, understand and think through points with little or no support from others. I am under pressure to be able to respond with correct, meaningful words and facts in a confident and positive way. Not always possible for me, and certainly not easy even on the best of days!

My emotions are all over the place-am i able to cope for the next minute, hour, day or week? Is my energy going to hold out for this meeting, or this phone call? How long can i continue to go on like this before i am totally wiped and back on full time sick leave again? Is this what would make some people happy? Endlessly being kept in the dark is also taking an emotional toll.

Please forgive the indulgent 'offloading' that just got in the way of what could have been an informative and interesting post! Maybe when my body, heart and head can relax a little more I'll be able to create one!

A Very Yurty Autumn!

Hello again, long time no blog! I've been having a somewhat cruddy time of it and really couldn't begin to think about blogging. I think it would have turned into a moan-fest so I saved you all!!!

You'll be pleased to know I'm not moaning, just bringing you up to speed with life in my little bit of the world.

I have spent a couple of weeks living in my yurt, well, to be more accurate, sleeping and spending much more time in it. I have this wonderful yurt, but neither my husband or son would come sleep in it with me, so I finally decided to move in, and if they wanted to be with me they would join me eventually! It is a lovely relaxing little space, and so cosy that I haven't yet had to light the fire!

I love waking up in there, listening to the dawn chorus and the sounds of the morning. But let's not forget those often unheard sounds of the night! The foxes screeching and running around outside the yurt, cats fighting, badgers snuffling and our resident owl hooting and landing on the roof every so often. The yurt is next to some high vegetation and often suffers from mouse-invasion in the winter so I think the owl sits on my roof looking down for his dinner!

When I can't sleep I often lie on my bed with the door open, watching the foxes, badgers, bats and the owl. It is truly a calming and comforting experience, and Autumn is my favourite time of year.

I'm always excited by the change in the weather, the pony growing his winter coat, the squirrels raiding my hazelnut trees, and the abundance of free food out there, ours for the taking! (Although maybe not the hazelnuts, squiggies got there first!) It is time to get firewood in, to sweep the leaves from the hen house roof and collect the apples from the orchard. Anyone want a ton or two, I'm inundated with Bramleys!!!!!

I can't get out to do the garden jobs I used to, I have to frustratedly act as 'foreman' now-a role I'm not at all comfy with! I long to be out there mucking out the hen house, digging manure into the veg-plot, tieing back the brambles and much more. I TRY SO HARD to be the outdoorsy girl I was even just this time last year, but not possible at present.

Instead I boom and bust, when I get down to see the pigs in the orchard (maybe once a week) that turns into frantically using the last dribble of energy whilst there, to collect as many windfall apples as possible as I can't stand waste! Then I'm trying to decide whether I'm able to carry them up to the house, or just leave them in a prominent position for hubby to see and do the donkey-work.

This ME/CFS really messes with your day, week, month and in fact your year! Or years!

Reconcilliation and Rosehips!

After a somewhat unsettled time here, there seems to have been a shift. A long held attitude of indifference seems to have been chipped away a little, and the 'chap' concerned is much more, erm, well CONCERNED!

It has been a revelation for me, I can now see what I have missed out on all these years, but never mind. Maybe I wouldn't have been the strong(-ish) person I am now if I had always had a crutch to fall back on, and not just my own resilience. I am not at all bitter, just blooming pleased that it happened now!

Anyhoo- Reconcilliation there has been, and one which will last I'm sure. I won't go into what and how it happened, too boring and far too unbloggable!

And Rosehips-Now there's room in my concrete head for other stuff, it's Autumn again and time to get myself out in the fresh air to collect the free food that is ALL OVER THE PLACE just now. Now is the best time to make Rowan Jelly (great with all meat, hot and cold) and Roship syrup, which has helped keep the family fairly sniffle free over the last year, as I'm told it has 20 times the vitC content of oranges. But all I know is it's darned easy to make, and tastes gorgeous! There's some on the go right now, it's an M.E. friendly thing to make as it takes no stirring, no pot watching and very little energy outlay. The end product is yummilicious and very good on all puddings and cereal etc.

I have made all sorts of jam so far, and pickled beetroot like it's going out of fashion! I hate to think of anything going to waste out there, and feel compelled to pick what I can. I have to admit that it can sometimes be a bit of a chore when the energy isn't there for the essential duties of the day, and to find extra to stand next to a bush with your arms up is not always easy! (I mean picking fruit, not just standing there displaying my armpits to the world!)

In case any of you are interested in the Rosehip Syrup recipe....

2lbs or 1kg of Rosehips

1 and 3/4 lbs of sugar

Put the hips in the blender till they're coarsely chopped then put them into a pan containing 1.5litres or 3pints of boiling water. Bring to the boil then remove from the heat and let stand for 15 minutes (you don't have to, you can take a break just now).

Pour into a linen Jelly bag (or linen shopper from the co-op supermarket, much cheaper and just as good!) and allow to drip till it stops (another little sit down!).

Put the residue back into the pan with 750ml or 1 and 1/2 pints boiling water. Stir and allow to stand for 10 minutes (again, you don't have to)! Pour back into the jelly bag and wait till it stops dripping. I usually have another 60p shopper ready to pour the whole mixture back through, as you need to remove ALL the little hairs as they can be an internal irritant.

Put the juice into a clean pan and reduce till it measures about 750ml or 1 and 1/2 pints liquid. Add 900g or 1 and 3/4 lbs sugar and boil for a further 5 minutes.

Pour into hot, sterile bottles or jars and seal at once.

There you have it, enough vitC to see you through the winter, and you've had some pretty decent sits down along the way!

Support-the act of bearing the weight of or strengthening

Firstly I NEED to say that none of what follows in any way refers to you, my friends. You are my support, my outlet and for all this I thank you.

I fly through my world very much alone. Most of my close or extended family are somewhat less than supportive, the subject of my health is rarely discussed or acknowledged. If I do venture to talk about some aspect of it, maybe because it is particularly difficult or worrying, then I'm met with almost universal indifference.

I know that it could be an attempt at denial by people who love me, but it never feels anything other than rude, hurtful and demeaning. I am left with a nagging doubt about how much they actually care. So, as a result, over the years I have learnt not to venture much information, as just keeping it to yourself is safer than trusting that others might acknowledge, and when they don't it hurts too much to keep putting yourself through.

Like sitting at the top of a steep hill, on a bike. Do you risk something, be a little brave and trust that if you ride down the brakes will stop you, or do you get off and walk, keeping things safe, cos the brakes didn't work last time, or the time before, and you got hurt.

Not the best analogy ever, but hey, sorry, ME-brain!

This is tough enough when it's the people you see occasionally, high days and holidays, but what about those you live with, the closest family of all?

I have been struggling for 10 years, trying to make my hubby aware of my illness and symptoms. You'd think he had a handle on it a little by now, but it appears not. Not only does he leave housework etc for days/weeks, till whatever has put me in bed has passed and I'm vertical (however wobbly!) again, but most weekends he sends me out to do things, the latest being to manhandle and collect 2 sacks of pig food! This is just typical behaviour, by no means the only examples dear reader!

I try to say what is happening to me, what I'm experiencing, especially on the days things are teetering and I really need to take extra care. I try to make it 'user friendly' and relate to things he might have an understanding of. Such as my almost perfected 'my muscles have no power today, lifting that mug of tea feels like it's a bucket'! I know, I know, genius!

Over the years I have come sadly, and reluctantly to the conclusion that he isn't really bothered. I reached this conclusion by the same method as we were all diagnosed, by a process of excluding all other causes first!

I tried the 'he's scared', no go.... then there's the 'he doesn't understand cos it's such a hard thing to get your head around' no go, after all these years and lots of explaining. I've comforted myself with the 'he's just hiding his head in the sand and hoping it'll all go away' no go....10 years, total indifference when I, or any of my friends speak about it has lead me to diagnose..............

A severe case of U.M.S. (Unsupportive Male Syndrome) with tendencies towards CCL (Couldn't Care Less)!

Not an easy diagnosis for us spouse's to live with but I'm doing my best!

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'!

Free Food and No Energy!

I love to forage for free, wild food. Just now is the forager's busy season, with Elderberries, Blackberries, Crabapples, Rosehips, Mushrooms, Damsons, Plums, Sloes, Rowanberries and Hawthorn Berries, not to mention the usual staples of this time of year such as Pears, Rhubarb, Apples and all the veg from our plot and that given by friends.

The only problem with all this foraging is that you have to DO SOMETHING with it all once you have it home! Well, I have managed to make some Damson Jam and Apple and Blackberry Cheese over the last couple of weeks, but that's nothing to what I want to be doing.

In my kitchen I have Rhubarb stalks, Plums and Damsons from our garden and a huge basket of Pears which were kindly donated to us. I need to use them.

Yesterday I had a day to myself, nobody else about ALL DAY-a real and rare treat for me! I had made plans to make some pear cakes, fruit vodka, plum jam, and then maybe relax with my rag rugging as I've got to finish a little rug for a friend.

ME STRIKES AGAIN! I got up and stripped my bed, then I began to feel the familiar 'full of rocks' heaviness creeping up on me. Poo, Bum and Pants!!!

The day went like this...-10 minutes upright, resulting in feeling so weak and ill that even I couldn't be stubborn enough to continue. Return to my bed or the sofa, close my eyes and wait it out till I feel a little better. Another 10 minutes up and repeat the same monotonous routine over and over. I was sooooo frustrated not to have achieved a fraction of what I wanted to do. I managed to make pear cakes but it took most of the day, working a little at a time and falling back onto the sofa to rest in between.

Early afternoon I gave up trying and retired to the bed to sleep properly, which did help I am pleased to say. My evening got a little more energetic, and I managed a nice cup of tea with my old friend Sylvia (my traveller friend from earlier blogs).

But I am still frustrated at my lack of ability again, I know I sound like a cracked record, but that's the nature of the illness we face.... it's a monotonous and relentless slog against odds which sometimes seem very stacked against us.

Yes, dear reader, I'm having a tough time again and a grumble does us all good...... I just had mine, feel free to leave me yours!

Fair's fair!

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!

Lost the plot!

Just can't seem to come up with anything interesting or even mildly diverting today, my head is creating a world of it's own and doesn't seem to have let me in on the plot!

I tried to talk to my friend last evening but the words just would not come, too hard to get them in my head, ordered, and spoken in a sensible and coherent way! Poor girl, she had to keep breaking the silence herself, whereas normally I can be relied upon to waffle on for Britain! I managed a few sentences of 'cocktail party' type chat, but nothing meaningful!! Sorry A!

This morning I tried to have a reasoned and sensible talk with my hubby, but I couldn't manage to make what was in my head come out of my mouth. Now, he'll tell you that is not something I usually have an issue with! Ha!

I really had trouble forming the thoughts and finding the words, it was worse than normal, and much more frustrating because I really wanted/needed to talk to him this morning. (Not that I don't at any other time you understand!)

'Thinking through treacle' doesn't touch how it feels, nor does 'brain fog'. I may have to return to that tired old analogy of 'Concrete'! As some of you will know I have regular attacks of 'concrete-headed-ness' and it can be extremely debilitating. Trying to explain to hubby, through the concrete, that I couldn't get my thoughts and words sorted, without the thoughts or words needed for such an explanation, was nigh on impossible today. I just stumbled about a bit, saying goodness knows what and floundering! Doesn't make for a good start to the day.

It all seems to be much worse at the moment, which I think is probably due to some pretty stressful situations here and there, taking their toll on my health and little grey cells. It doesn't take much extra in the brain, to throw it completely and render me a useless lump of uncommunicative, tastefully pyjama'd wife!

When I'm stressed I need to be able to think things through, to work out possible consequences and how it may be best to deal with them. But instead I find all I am doing is trying to bludgeon my way through the concrete to thoughts which whirl and slide about, making me more frustrated and emotional than relaxed and sorted.

Hey ho! For someone who's thoughts are 'sleeping with the fishes' I've managed quite a long post.....sorry if it's rambled, but I guess you're used to me by now!

I Follow Humbly.....

It's been AGES since I have had the opportunity to write anything at all. I've not been lazy, promise! There have been obstacles - stressful work situations, stressful home ones, visitors, DIY and the arrival of hubby's piglets to name but a few.

Still, I'm here now so here goes!

'Lark Rise to Candleford' is undoubtedly the best book I have ever read, first when I was around 11years old, and then at least two or three times a year, each year since! It became my manual for living and shaped my life more than I had realised until recently.

For the uninitiated- I'm sorry that the magic hasn't reached you yet! This book is a semi-autobiography of a girl growing up in a tiny, isolated English hamlet (which Flora Thompson, the author, born and raised there, calls 'Lark Rise') in the late 1800's. It is a fantastic piece of social history detailing life at that time, for farm workers, housewives, children and the ordinary, poor folk of Oxfordshire.

My description of it does it no justice, really, just take my word for it and go read it!

I knew the place still existed as a real place called Juniper Hill, on the Northamptonshire/Oxfordshire border, but I had no idea it was so unchanged since Flora wrote about it.

I met a local historian in Juniper Hill last week, and did a little tour of the places she wrote about. It was sublime! To see the hamlet, walk the paths, even sit in her very pew in church! I could hear the voice of Flora, walking with me, describing the flowers, the scenes, and people she knew so intimately, in the words I knew by heart.

As I walked alone over the very ground she trod, I realised that it was her writings, her outlook and her experiences that have shaped who I am. I long for the simpler times, the horsedrawn carriage, growing your own food, making and mending what you need, keeping animals etc etc. Then it hit me.... without really following a plan I have tried to bring a little 'Flora Thompson' into Zarla all these years!

I have a pony and carriage which I drive, vegetable plots/herbs/edible plants, make rugs/glasses etc and keep sheep, pigs and hens!!!!! In this busy, bustling 21st Century world I am including as much as I can of her 19th Century one.

Back to the trip to Juniper Hill, I had the most amazing time. I'd never been there before, but because it was so unchanged, and I knew Flora's words so well, I just knew where everything was. I walked a path and just knew, even before I got to it, that there was a little copse with a deep forgotten pond. I have never felt so at home in somewhere I'd just seen! A very bizarre feeling.

The flowers she spoke of, in the places she said, all still there! I picked some and placed them in my book! It could not have been better, I almost felt as if the little girl Flora was walking with me, explaining as she went.... I know the book that well!

I managed all this with as many rests as I wanted, just sitting/lying in the long grass, in the tall yellow wheat etc, reading my book! I took all day about it, had food and drink in my pockets, and removed myself from the 21st, back to the 19th!!!!!

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,

Whatever next?

I blogged some time ago about my hubby's plans for keeping a couple of pigs in our orchard, but you never heard anything more.

Well, here we go again, he takes delivery of two gilts (sow piglets) next week! OMG, take a long look at my orchard as it is cos I think it may be a little less picturesque after they move in!

I don't really think he's fully aware of how much of his time they may take, and there's not a chance I will be mucking out or filling feed troughs! I don't think pig keeping figures highly on the recommended coping strategies for ME/CFS!

It's a fair way from the house to the orchard, (past the yurt!) so I'll only be visiting on those good days anyway!

Yesterday he and his father made a gate, and put in the fence posts around the pigpen. Today they plan to put the wire on the fence, and plumb in the water trough. Where do they find their energy from...? My hubby's father is only 76!!!

I went down, held a few bits of wood in the right place for measuring etc, then retreated to the house for a rest! Ahh, (sighs wistfully) I used to be the one working from dawn till dusk on a project like this, enjoying the whole process.

I really miss the sense of achievement I used to get from a busy day gardening or something like that. Now, thinking about it, I feel rather removed from my garden, and the whole excitement surrounding the piggy-arrivals.

I tend to just experience things in terms of seats and hammocks, as opposed to the spades and lawnmowers of the past. Mmm, feeling a little wistful now.......

I would have enjoyed the pig aspect much more too, pre-M.E. But, as it is I tend to look upon everything with cautious eyes, hoping that the elephants wont strike!

(Hey, sorry but it must have been a couple of posts since the last 'Elephant' reference, so live with it!)

Body and brain tired, thinking through sludge again, eyes preferring not to focus properly, muscle spasms, sensitive hearing etc etc, but this crazy life goes on...!

Pet pigs, whatever next?!?!???

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!