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'!

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!

More Precious Moments.....!

Well, I've promised an update to my last post all week. It's taken this long to sort my head and it's antics out - I'm having a few more neurological symptoms than I'm used to. Lots of fun with hearing issues, shock-like reactions to touch and especially unexpected sounds etc etc...you know the drill. Enough of that, it's just not too exciting to write about, I need to work out what's going on before I can share much.

Anyhooo, we spent a wonderful evening with Sylvia on Wednesday-sitting by her fire, eating chocolate biscuits and drinking tea. I gave her a book, and she gave me a couple of things in return...which are the best gifts I could imagine.

Firstly, she has offered us her 'dray' to borrow every summer. This is a large-ish, flat, wooden, 4-wheeled farm cart for Merlin to pull. We can put a top on it, and use it to go for weekends and holidays away, all summer. She will have it back in the winter, when she's at home, cos she uses it then.

I am thrilled! It is something I've ALWAYS wanted to do, travel with horsedrawn vehicle, and now here's my chance. It is a pretty M.E. friendly thing to do too, if I have a companion with me I can lie down, resting or sleeping any time I need to, leaving the driving to someone else, perfect!

I aim to get a peek at it, then get it delivered to where Merlin lives. We'll try him with it, (he may take a few trys to get used to it) then we'll get it home to put a top on and make it habitable. Thank heavens for very handy DIY 'savvy' fathers-in-law I say! If all goes to plan it may be on the road in about 6weeks! I'll keep ya posted!!!

The second gift she gave me, is the feeling that I am moving on, growing and experiencing much more than I thought possible. Her attitude to life is so 'get up and go' and cheerful that it is infectious. I can't help but smile and feel positively energised when I am, or have been around her.

I have begun to think much more like a healthy person, with limitations, again...rather than a permanently sick one, struggling to get through each day (which is mentally where I've been for many more years than I care to think about).

I, and my health have not changed one iota, but if I can maintain the more positive way of thinking it has surely got to make my journey with ME/CFS and the inevitable elephants more bearable. These last couple of weeks have been quite good, despite my worsened symptoms and a few emotional wobbles...I'd have let it all bother me much more before.

This renewed feeling of optimism, and of course, the Dray, are the best gifts I could wish for at this time in my life... (Well, a new bathroom and a semi-naked household slave wouldn't go amiss either, but Sylvia wasn't forthcoming on either of those!!!)