working title

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!

One Year Old Today!

It's a bit of a special day today, exactly a year since the accident that was most likely the cause of my latest ME/CFS crash, which caught up with me about a week later.

My son and I were out on our pony carriage, I was having a period of OK-ish health so all was good. The edited version of events was that a large dog jumped out at my pony's head, so he jumped onto the grass verge to get away, taking the carriage and us with him. This would have been OK if the verge were flat, but it was very steeply sloped and so the carriage went over and we were flung out. My son was shocked and a little winded (they bounce at 15 don't they!) and I broke a bone in my back (didn't do the bouncing thing quite so well huh!).

A couple of days later I began to feel unwell, but as all I could do was stand or lie down, I was resting as much as I was able to in the painfull circumstances! Things started to really catch up with me about a week later and ended up in a full blown crash, hearing, eyes, brain, skin tingles, pain, stiffness, balance, energy, nausea, spaced out, etc etc, you name it, I had taken a delivery of it!

My usual pattern of crash and recovery has always been fairly good, usually a slow build up to a crash, feeling it creep up on me over a month or so, then 2 or 3 months off work and back to where I was before. The whole episode lasting about 5 months from crash to full time work again.

I was not prepared for the impact (if that's the most apt word) that this relapse would have on me.

I returned to work in December last year, and have had a year of illness and struggles to keep my head above water at work, starting on just 2 part-mornings a week, and building up.
A whole year later and I am still struggling with hearing issues, skin sensations and aches and pains. I am stiff and a bit clumsy, but not nearly so bad. 'Concrete-brain' and word finding are horrendous. My stamina and energy are still much reduced compared to 'pre-carriage stunt' levels, and I have come to the conclusion that I am probably going to stay like this, certainly for the time being.

If I had taken more time off work would I have made a better recovery? Has pushing myself this year taken it's toll? Is this why I'm still this ill? Who knows, we all do what we think is best at the time and that's fine.

It's been the most life changing year so far, I have had to reduce what I do for the longest period since I was first ill, in 2000. I've done a lot of accepting!
Not meaning to sound cheesy, I am more settled with my illness and state of health than ever before. My husband is more accepting, which makes a huge difference to everything, and I've stopped feeling so guilty and trying to deny it all the time. I now have friends with ME/CFS too, it's all made a much happier me!

I know I moan and grumble but just imagine what I WOULD have been like!