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!

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!!!!!)

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?!?!???

NHS Niceness!

I went to see a Neurologist this week, not an experience I had any great feelings about, other than the usual "Here we go again" type of sinking feeling. Having to explain yourself (all over again!) and your association with a disease that seems to invite derision and criticism from that particular branch of the medical profession (but not JUST that branch!), is at best annoying, but at worst it can be belittling and upsetting.

I was referred there this time because of a tremor which has begun over the last few months. Only happens visibly when I'm particularly tired, and towards the end of the day, or sometimes in stressful situations too. I feel the muscle spasms involved a lot more than others can see though, and it has become one of the signs which tell me I've done enough!

I have had tests recently, and the neurology appointment was to discuss the results. We discussed M.E. and my history with it. I spoke about my neuro-symptoms- the sensitivities, the strange skin sensations, my balance and coordination problems etc. He listened intently, and when he replied he was understanding and empathetic............OMG!

He agreed that the spasms/tremor was most likely due to the M.E., but could not rule out another option and so would follow me up in a few months. I left feeling understood and respected. Something of a rarity in the M.E./CFS world I'm sure you'll agree.

What a situation, to be sick, often very sick, but to be disbelieved and criticised so much that just one polite and understanding Doc brings about a whole blog-post! It would be bad enough if it were just one person's experience, but sadly we all know that's not the case.

But, for this tired blogger, it was a boost to her self esteem to be valued and listened to. Thankyou Dr. D!