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.

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'!

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!

"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!

PJ's and a Hammock!

I joked in a comment about my last post, that I couldn't keep up this excitement, well I was right! Instead of wonderful planned adventures in horsedrawn vehicles, I'm reduced to making it outside to the hammock, still in my PJ's! Not quite what I had in mind, but hey...it's far enough today!

This week, I have had to up my working hours, and that combined with the worst sound/light sensitivity for as long as I can remember (and, let's face it, that's not very long!) has reduced me to rubble.

It's a bit of a blow really, I am a stubborn old bird who REALLY doesn't like to be reminded in such a rude fashion that I'm disabled and debilitated sometimes. Always happens, things hit me, my elephant has a bit of a party, and I get grumpy at having to accept all over again, that I'm a ME/CFS groupie!

I said in my last post that I was starting to feel more like a healthy person with limitations, well that's all well and good, but when those limitations make you feel the way I do at the moment, you can't fail to feel un-healthy! I know it's going to subside, and I'll get some of my life back for a bit, and I'm not in the least down in the dumps about it, I'm OK, just smarting that today it's 1-nil to the elephants!

Laying in the hammock, sunglasses on and blanket over me-I'm lucky to be able to do this, so I'm going to make the most of the fresh air and gentle breeze. There's a little family of birds in a nearby tree, and they've got used to me being there, so I watch them coming and going and learning to fly.

It's so nice out here, my hammock is next to my hens making little 'swooshy' noises as they scratch about in the straw. The dog even came to join me, laying herself down in the long grass under the trees, insects bugging her every now and then. It's sunny and warm, there's only one thing for it............. sleep!

I'm aware that this post isn't dynamic and get-up-and-go. Heck it'd just get boring if it were the same all the time, much like life!

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!