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!!!!!)

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!