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.

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!!!!!!

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!!!!!)