Revolving Doors

[Image: a gorgeous wood and brass revolving door at the Savoy hotel. Source]

Tuesday I sat in my neurologist's waiting room. It was full to overflowing as she was running overtime. It's not uncommon. All it takes is one late patient or unexpected emergency for the program to blow out. I can count on less than one hand the number of times in the past nearly eight years I've been seeing her, where she's hurried me out her door. But the cumulative effect of this tendency to take her time, on top of those other factors, also stretches that list out further and further.

Fellow patients came and went. Heading off for a belated lunch or restorative coffee. I commiserated with the petite elderly woman across from me about the delay. We commiserated again when she came back from her impromptu lunch to find me still sitting there. Surprisingly most people were happy to go with the flow. Momentary frustration replaced by resignation. Getting in on time to see any doctor is rare. There's an urban legend that some guy living in Preston once managed to have an on time appointment at some medical clinic somewhere. No one really believes the myth, but we all have a little kernel in hope that maybe, just maybe, it was true, and in turn that it could also happen to us.

When my name is called she talks about how much she loves my new hair and clothes. We've always bonded over a love of fashion. I wheel down to her room, my driving skills hampered by exhaustion and building hypotension.

"How are you going?"

How to sum up the shitfight that has been my life since I last saw her? It's never easy. Physically and cognitively things have gone down hill, though it is the later that concerns me. Where to begin? I start listing the physical issues. Even I know how disorganised my communications are, fatigue having amplified my cognitive fog. Part of it is also my worry. The worry that I've voiced on occasion before hastily stuffing it back down, binding it's limbs, shoving it into a box, welding the box shut, before tying bricks to the outside and tossing it over the side of a ship somewhere over the Mariana Trench (I am nothing if not thorough in my denial).

While my physical issues are problematic, apart from the odd exacerbation, I can deal with them. I've come to accept that they are simply part of life and while they can be difficult to deal with at times, after ten years I'm made my peace with them (I fully reserve the right to bitch and moan about them in the future. I'm not fool enough to believe that acceptance is reached, and all is fine and dandy in the world from that point on. Life doesn't work that way.) But my cognitive issues aren't improving. Things are better than they were the first half of the year but they are still no where near where they should be and the term brainfog underplays what I've been experiencing.

When I start describing the heartache of finding writing and reading difficult she instantly recognises the importance of the issue. Over the years of our relationship we've frequently discussed my writing. She's been excited when I've presented at a festival or had a piece published and always added that I am a blogger or writer to my letters. She understands that not only is this important to me, it is indicative of a significant problem. My language skills have always been my strength. And their deterioration a sign she can't ignore.

Back in June I wrote of my worry that I was forgetting important things. Turns out I was. Emails came in querying where I was and why I hadn't completed certain tasks. The embarrassment combined with a realisation that my fears were founded. I was not just forgetting the little things I was forgetting the big thing. The things that were important to me. I have since sent off many a mea culpa email, apologising, and where appropriate, trying to explain what had been happening. But it is the ones that related to my writing that have hit me hardest. That I could forget things so dear to my heart is worrying. The fear that I still have a collection of important events or issues that have escaped my mind is ever present. It would seem I was going through the motions but nothing was sticking. Even when I have interacted, somewhere between event and storage, the information simply evaporated.

Memory, language, attention, speed of processing,...I list off my concerns. My understanding that one may underpin another, or be working together to create the impairment.

"It may be useful to have a Neurorpsychological assessment."

Ugh.

A kick to the guts.

Not that I haven't thought about having an assessment. I have. On multiple occasions. Especially following my SPECT results, and more so the last six months. But telling a former a Neurospychologist that they may need a neuropsychological assessment is confronting. Mr Grumpy knew about my hesitation. I've discussed my fears with him on more than one occasion. He pipes up to fill in the blanks where my mind dissipates, as I face the realisation that it's not just me who thinks I need to be assessed. That the expert in the room agrees. I start to recite the problematic issues involved in assessing someone who was previously the assessor. The community is small. And I don't want to be assessed by someone I know. I know the process and the assessments used.

"I still know all the tests. I can still recite the memory stories and draw the RAVLT!"

Why that phrase stuck in my head I don't know. Maybe because a small part of me registered the mistake.

It wasn't until I was sitting on my loo 24 hours later, that I realised that you can't draw a RAVLT, a list of words. You can, however, draw a Rey Figure, which is what I had in my head, and I can still draw.

Word substitution. Crap. Just a small example, but when these tests have been your bread and butter and you've conducted them more times than you can count it is confronting. Somewhere between mind and mouth or mind and keyboard, things get lost. Going back the other way is not much easier these days. Attention, divided attention, memory it's all screwy. And the concentration and effort that is required to try and present a good front is frequently exhausting.

***

(The Walking Dead Season 5 spoiler alert two paragraphs ahead.)

There was research that came out around 2011 that suggested that doorways were essentially memory scrubbers. A kind of purging of unnecessary information as we move from place to place. It's thought to be responsible for that common feeling when you walk into a room and then stand there having already forgotten what you were supposed to be doing. I feel that every day. Though I often feel like I am stuck in a revolving doorway rather than simply passing from one room to another.

There's a pivotal scene in The Walking Dead where three characters get stuck in a revolving doorway. One fights his way out through the doorway condemning another, Noah, to be eaten alive by the zombie horde, while the third, Glen, is stuck watching in horror as this occurs on the other side of one of the glass partitions. Noah is my memories being eaten, while I'm Glen, stuck on the other side of the partition, impotent and condemned to watch my memories being ripped apart. (First guy gets his comeuppance later in the season, not sure what my real life equivalent would be. See, that's what cognitive issues give you, an unfinished metaphor, or parable, or....well my brain can sort of feel what it is but I can't quite get there.)

She mentioned a name. A Neuropsychologist she assured me was very competent. It wasn't a name I recognised, not that I can trust my memory at this point. And I acquiesced. In truth if I hadn't blurted out an impulsive "Okay!" right then and there I likely would have left the appointment with no referral sent off. I would come back in six months having progressed no further except for a few more blood tests for more rare disorders. I feel sick but resigned to the fact I will soon be siting across from someone asking me the same questions I asked the patients I saw back when I was working. I wonder if he'll find the trick to making me feel relaxed? I wonder if I'll be able to stop myself from judging him every step of the way? Poor guy. I feel sorry for him already.

I sat there while she dictated her letter. I must have looked deflated as she assured me that she's not giving up. That she knew other doctors did. That other patients are left in limbo with no support and trying to navigate their diagnostic journey alone. She assured me she had patients where it took ten or twenty years to diagnose, but she kept with it. She assured me that every time something new and weird comes up at a conference that she instantly thinks of me, and starts trying to work out if it will fit. She assured me that we know more about autonomic disorders now than five years ago. That this knowledge will only increase with time. She assured me.

***

We left the appointment and headed to see our son. It's one of the bonuses of the six hour round trip to the city. A neurology appointment can hardly be classed as fun. But after the fact when you're hanging out in a dodgy, smelly, laneway taking photos, it's easy to push aside what was discussed an hour or two earlier. You scull down a long black and feel it infuse your being and let the rain fall, softly dampening your clothes and hair.

And you realise that sometimes those doorways are much appreciated.

[Image: A woman with green hair (me) sits in her red electric wheelchair in a graffiti covered laneway. She is wearing a floral dress, green stockings and black high heels with a vibrant red scarf and is looking down.]

Michelle

I've been listening to a lot of Etta James so Next Door to the Blues popped into my head when I started thinking about door themed songs. I saw Vika Bull in At Last the Etta James Story
earlier this year. Gosh she was amazing. If you're in Australia and it comes to your area go along. I've been a huge Etta James fan for years and equally have followed Vika (and Linda) Bull since the early 90s and it did not disappoint.

Smile.

(source)

The last couple of days I've made a change. I decided that I would try to get dressed everyday. I know getting dressed plays into my mood. Feeling physically bad leads to feeling mentally bad, leads to feeling physically bad, leads to...it feeds off itself. Feeling bad I am more inclined to stay in my pjs all day. The effort involved with showering and dressing is hard to explain if you're not chronically ill. But it's enough to know that it's prohibitive, and soon my appearance mimics my mood and body. When I get stuck in those ruts I feel worse and I really have to fight my way back out. When I put up the first photo yesterday I added a bracketed message about why I was't smiling.

Today when I shared the Instagram post on my Facebook page I wrote the same message....

(Can't smile as my facial muscles wont cooperate today, Mr Grumpy always says that it's my 'tell' when my face is flat and expressionless. Joy.)

....and it irritated me.

I've stewed on it all day. Why did I write it? Why am I apologising for something I have little to no control over?

The reality is that it's a physiological issue. Since I became ill I have developed progressive issues with my facial muscles. Initially, it began with a left-sided weakness that would appear when my symptoms were flaring. The left side of my face would become lax. I'd end up with ptosis and my mouth would droop (my delightful children called it Stroke Face, and it was always an indicator I was really unwell). When my overall symptoms improved, it would improve.

Soon the sensation on that side was permanently affected. It felt swollen and tingly. When I touched the flesh of my cheek it felt odd. Soon the droop stopped completely resolving. Now it is more obvious even on good days, becoming worse again when my symptoms flare. My eldest son, a photographer, took a photo of me last year and the difference in the muscles of my face was clearly evident when I attempted to hold my mouth shut. A wasting on the left, not matched on the right. A wasting in muscle that was matched by increasing weakness. The more I concentrated and tried to force the muscles the worse they behaved. From chin to hairline none were doing what they were supposed to do.

A Single Fibre EMG (SFEMG) revealed myotonia in the left side of my face two years ago. Since that time my control of my facial muscles has slipped. I try to smile and I can't. Or I grimace. When I force my muscles into positions they jump and twitch. The top lip on the right side of my mouth curls up spontaneously. Every now and then I get lucky. But the frequency is decreasing and the pain it causes in my muscles on the left is often not worth it. Unconscious smiles occur, but try to force one for a picture and it becomes increasingly difficult or impossible.

Mornings my face is blank. No expression. I rub my facial muscles and move my jaw to wake them up, but it can take hours. I find myself absently moving my jaw side to side, up and down, constantly trying to shake the weird sensations and get the muscles to comply. Some days it'll remain expressionless from sun up to sun down, no matter what I do. Apparently the complete lack of facial expression is the family's new indicator that I'm not doing well.

I look grumpy or blank. Not by choice. By physical pot luck. And still I apologise and explain.

There is such a pressure to smile in our society. Especially if your'e female. If you don't, you have Resting Bitch Face (RBF). I think about celebrities like Kristen Stewart who are constantly criticised for their lack of smiling. Hell, I've made comments myself. Now I sit here typing and I can see my own RBF reflected on the screen and I think, enough.

As a woman you are told constantly how to behave and what you should look like. Like many others I've heard many variations of the classic line, "Smile, love. It can't be that bad". Or another favourite, "you're so pretty when you smile". Because as women we are supposed to smile, no matter what. And if we don't there is something very wrong with us.

I know I've internalised that line of thinking.

I know every time I apologise for my lack of smiling,
or look at a picture and my internal critic goes into overdrive at my grimace or RBF.
Time to say, enough.

Enough, Michelle.
Enough of beating yourself up for what you can't control.
Enough of feeling self-concious for not smiling.
Enough of explaining.
Enough of apologising.

The people who know me, know I'm a happy person.
And those who don't and judge, don't matter.

If not smiling is the worst thing I do, I think I'll be okay.

Michelle

*The idea that as women we should always smile is so ingrained in our society and I am not alone in being over it. Check out the Stop Telling Women to Smile campaign and art series.

Anyone who's read the blog for any length of time will know of my love of PJ Harvey. Her songs are so raw and unapologetic and my song choice for today is no different. Sheela-Na-Gig is unapologetic in composition and lyric, and fits my unapologetic mood today. As much as I hate using wikipedia as a source it has a reasonable explanation of the meaning behind the song, here.

Confusing

There is nothing better than a Neurologist who takes you seriously. There is also nothing worse than a Neurologist who takes you seriously. Better and worse, intertwined and inseparable of late. Since becoming ill I keep coming back to the idea from F. Scot. Fitzgerald that the holding of two opposite ideas and functioning, equates to intelligence. If that's the case, illness and intelligence are fond bedfellows and I'm some kind of closet genius. I wonder if he'd mind if I added a caveat, to the whole 'functioning' part of the equation. Maybe we could go with 'mostly' functioning. Or replace it entirely with 'still breathing'. I am pretty skilled at stuffing my mind with opposing ideas and breathing. Pure genius. Watch out, Hawking. I'm coming for you.

It's been six months since my last visit. We drove the three hours into the city. The land slowly transforming from flat paddocks dotted with cows and ancient pines, to smoke stacks and gritty pall, and concrete, more concrete and the tang of exhaust which always leaves me with a sore throat. Inner city Melbourne is lovely in it's eclectic nature. Green-leaved trees line the streets and expensive real-estate is set aside for verdant parks (we're not called The Garden State for nothing). Tram lines run everywhere and tight streets, packed with cars are bordered by a mix of everything from Victorian Terraces, Art Deco apartment blocks, and modern glass and concrete monoliths. Car repairers, sit next to surgeons, pubs, cafes, private residences, sex shops and art galleries. A quick glance upward and the sky is seen through the lens of tree branches and a maze of wires. The hospital is like the city. A mish-mash of architectural styles, punctuated with small green oases for patients and families to steal some reprieve from the ravages of the hospital setting. At the entry you can get your yellow fever inoculation, pick up your prescription, buy a Tatts ticket or plan your next overseas trip. A little something for everyone.

A lucky break means a park out front and a small clunking elevator ride up to the fourth floor. The way-too-familiar waiting room is muffled. Part of me imagines a frazzled librarian-type, lying in wait to step out and wave their disapproving finger and send an irritated “Shhh!” in our direction,should we make a noise or, godforbid, laugh. Excitement at an empty waiting room is quickly quashed as my appointment time comes and goes. The elderly man next to me sits head tilted backward sleeping. His wiry arms relax on his bone-coloured trousers as a small throaty snore starts to escape his open mouth. Across from us a woman and her two daughters sit heads huddled together over a magazine on the mothers lap. The well groomed woman to the right coughs and splutters, apparently unaware of the concept of infection control, or tissues.

My Neurologist is friendly. I've seen her for nearly seven years now. She's happy to see me on my feet and not in my chair, but misses my red heels from the past year. I look less gaunt. She loves my dress. We chat about my blue hair and how I've been as we make our way down the corridor to her room.

Oh you know, okayish.

Which of course is and isn't true. But okay is relative these days. Okay means same old same old. Okay means I haven't done a massive nose-dive since I last saw her. Well at least not in the neurological sense. Okay doesn't mean regular-folk okay. Regular-folk Okay and I don't socialise in the same circles any more. Okayish means I'm still broken and breaking. But nothing exciting. Just the usual boring, meandering, decline. I break in all the meh ways.

I stumble and shake over to the table, lay down and roll off my purple stockings. The tuning fork hums somewhere in the distance, even though I can see it is placed directly on my foot. Is it cold? No? What about here? Bend your knee. Relax. Tap. Over excited knee reflexes shoot out and shudder. My feet sit there, unresponsive and unimpressed with repeated attempts to elicit a reaction. Push up. Push down. Extend. Shake and collapse. Can you feel this? What about this? Here? Here? The factory line assessment continues until she is satisfied that my body is intent on being obstreperous.

The listing begins. All the things that are wrong or more wrong, than last time. I am allocated a new word “Confusing.” I add it to my long list of other diagnoses which includes the perennial favourites “Special” and “Interesting” and my other C word, “Confounding.”

Medications are discussed and dissected. Some are agreed upon others discarded. Something to stop me throwing my coffee everywhere? Or flinging glasses? Hmmm not yet, the side-effects outweigh the benefit. Something for migraines. Yes. We'll go with that. Collaborative and fruitful discussions a rarity in the medical world, are appreciated on the odd occasions they occur.

Two new firsts are added to my referral folder: Neurogeneticist and SPECT scan. My request, so I can't complain. One more attempt to find the elusive diagnosis. A label that I can print on a card or whip out at dinner parties. Two more opposing ideas are held in the palm of my hand.

I don't care if there's no label it wont change my treatment. Let me wave my Zen banner for all to see. I am woman, hear me roar my lack of caring.

Sits snuggled next to,

I really really want a concrete label to wrap my arms around. Please give me a label. Someone. Anyone. please......

She doesn't bat an eyelid at my request. My listing, combined with Mr Grumpy's clarifications are enough. It seems things are looking more of the CNS variety as more weirdness comes knocking. My muscles aren't supposed to be doing the things they are doing. My cognition shouldn't be as bad as it's become.

A new script sits in my bag alongside the referrals and I make my way back out the door. We stop long enough in the city to grab a decent coffee and some sushi and quick visit with our eldest. A long black and something for the pain and nausea and we repeat our trip in reverse.

The drive home we are quiet. The rain is pounding. We hit the patch of the drive where black cows stroll under the giant power lines that link the coal pits of the Latrobe Valley and the city. Shirley Manson bursts out of the speakers:

This is not my idea of a good time.

This is not my idea of a good time.

This is not my idea of a good time.

This is not my idea.

CNS hey? So it really is “all in my head.”

Mr Grumpy doesn't miss a beat.

Just think of all the time and money we could have saved if we had listened to that doctor way back at the beginning!

Sometimes you just have to laugh.

Michelle

Falling down the rabbit hole.

(source)

The last two, three, four months have been hard. My body has decided to do one of those fancy steps down, on the stepwise progression thingy. Or more, screaming, flailing leap, than step. I've tried not to let it affect me but it has. Denial is hard to maintain when you can't do a poo without face-planting on the tiles and being dragged limp and slurring to your bed. Or even better when no one is home and you're lying on the tiles of your bathroom, pants only just covering your sagging butt cheeks and your ever faithful canine companion comes, sniffs your forehead, and then sits promptly on your head. Or when your normally stoic other half keeps coming in every five minutes worriedly touching your forehead. Or you go to walk to the kitchen and end up on your hands and knees behind the couch. Or....

I can walk less. I can stand less. I have less control of my body temperature. And I've started losing weight again. But I have more syncope. And more pain, be it my feet, my stomach, or my head. None of my tricks are working. And as my cardio pointed out last week, I'm out of medical options.

And all of it is beyond exhausting.

I feel like the months have gone past and I missed them. I mean I know I was there. It's not like I have a Delorean or anything. Although that'd be mighty cool if I did. It's just been a fog of illness. A fog that has eclipsed the wider world. It's been one of those times where dealing with my body takes every shred of energy that I have and everything else is shut out into a half-arsed, half done, package of incompetence. Be it blogging, replying to emails, unpacking at our new house, or breathing, it's all been a half-arsed effort.

I find myself picking little bits of random jobs in the vain hope that I'll finish one. I break down the tasks into a hodge-podge of parts that I convince myself are logical. But instead I end up picking such random bits that not even those end up finished. I then of course beat myself up for not doing the important tasks that keep piling up. I want to paint, but feel guilty because I know there are emails to answer. I want to garden but I know there's house sorting that needs to be done. I haven't even allowed myself to catch up on The Walking Dead because I know there are other MUST DO things that are simply falling through the cracks. Not that that prompts me to action. I am out of spoons. Out of energy. Mental and physical. Simply because every last bit of resilience and energy is dealing with the most basic aspects of survival eg staying upright, or laying on tiles and repeating my new mantra "I do not need to go to the ER. I do not need to go to the ER. I do not need to go to the ER".

I've tried to be normal.

Head out for a coffee. Come home head between my legs, be dragged into the house to pass out on the bed. I've been out looking at potential new houses, only to return home a green-tinged blancmange, or simply cancelling at the last moment. I had a lovely visit with my Uncle and Auntie book-ended, by a body intent on expelling everything I have eaten in the last year, out of either of two burning orrifi, face-planting on the tiles in my bathroom, and coma sleep. I saw my cardio in the city last week and am still paying for it today, almost a week later. I have to head back to the city for more neurological tests in less than four days and I have no idea how I am going to manage.

We planned for tea out with friends at an actual restaurant. I prepared for days in advance. But my body said no. I'm not sure if it was the rapid revisit of the plain poached egg I'd attempted earlier in the day or the chunk of perfectly poached egg white that came out of my nose when I sneezed an hour later, that was the clincher. But I was made aware of the fact that I was not well enough to head out into society, or into my lounge. Luckily our friends were willing to do plan B of take away here at home where I could crawl into a ball on the lounge. They even put up with our insane dog who apparently had a snort or 12 of coke before they came. Good people.

But what it comes down to is....

....I'm missing life.

My life.

It's just disjointed pieces of late.

Finding a spot to focus on. A task that I can actually complete in it's entirety seems impossible. Everything is sitting not done, half done, or forgotten in my sieve of a brain.

I waste energy on putting up the good front. I'm coping. It's all good. I can still laugh at it all. Life. I'm playing the part, not really living it. The truth is my body and I aren't doing all that well. Coping with a big deterioration is hard. I should say that out loud ten times. Scrawl it across my mirror and write it on my arms. Because it's the truth. I tell others to that they should speak the truth of illness, the ups and downs, and here am I still hanging stubbornly onto my pride. That message ingrained from my childhood that says "suck it up and be strong, don't be weak." The message I convince myself that I've conquered, until I realise that it's snuck back in and taken up residence once more in that hyper-critical part of my mind that likes to whisper sweet nothings in my ear.

Somehow I lost the ability to give myself the permission for space. Permission to breathe. Somehow I have forgotten that it's okay to say I'm really having a tough time with this crap. That sometimes it gets scary and sad. That I'm tired of being strong. All. The. Damn. Time. And that when you only have a thimble full of energy it's okay to use that thimble for yourself.

Life may be piecemeal for a while yet. But hopefully I'll get better at picking the pieces that are more healing.

I may be falling down the rabbit hole, but even Alice found her way home.

Michelle

It's Just a Flesh Wound aka I'm a Dumbarse.

A few years back I wrote a post about the internal dilemma I face each time a health issue crops up. Well dilemma is probably the wrong word. In reality the dilemma is token at best. The outcome is pretty well decided from the first stirrings of “hmmm, well that's not normal.” I think it's more to sooth myself into saying,“Well you weighed that one up well, Michelle. You looked at the data provided, did a review of your medical history and the examined all the pros and cons. Well done. You Rock.” Whereas the reality is far more, “Shit that's not right. Should I go in? Nah. She'll be right. It's just a flesh wound.”

Normal is not a word I completely understand these days. It might as well be written in Sanskrit for all I can decipher. My view of health and what constitutes a worry is seriously skewed.

Recently I was in having my IV Saline and notice a MET poster on the wall of the room.

Three of the criteria. Systolic under 90 and HR under 50 or over 130 made me giggle. Both of these indicators are so common in a world of autonomic dysfunction. Systolic of 90 is a walk in the park. A complete doddle in fact. Pre-pacemaker low 40s or high 30s for a hr were a daily occurrence. For my POTS friends 130+ occurs on days ending in 'y'. New or unrelenting chest pain again something most with Dysautonomia contend with on a daily basis. We are a walking (okay stumbling, swaying, staggering) MET call.

Normal is relative.

The combination of a skewed normal and a medical system that often treats you like you are lying when your obs don't make sense (I'm looking at you nurse who took my temperature with 3 different types of thermometer before she would believe my reading of 35.2 C.) means I am not a frequenter of the medical system until I am in “dumbarse” territory, as Mr Grumpy would describe it. And even then it's not guaranteed.

Two recent incidents come to mind.

1) We have only recently moved to a new town. About 3am of the first night in the motel I had excruciating kidney pain. Not a first be any means, but still not pleasant. I tossed up that I was taking more desmopressin than usual to cope with the move and our current heatwave, and that my last few kidney tests had come back relatively okay. I knew I was dehydrated, the skin that still stands up on my hands when I pinch it tells me this. But the idea of negotiating a new, country, ER in the middle of the night was just too much to contend with when I was feeling so incredibly unwell (you have to admire the strength of my convoluted reasoning right there). Plus the whole, “I refuse to start the first day in our new town with an ER trip”. That just feels like I'm jinxing myself. So I road it out. When I mentioned it to Mr Grumpy the next day I got the whole “dumbarse” routine. And he's probably right (don't tell him I said that) I should have gone in. I should probably go in now and get fluids, but here I am sitting tapping away on my dying lap top, laying on bed, not going in.

2) Incident 2 is an ongoing one that started the weekend before Christmas. As regular readers will know I received two new diagnoses (Myotonic Muscular Dystrophy and Gastroparesis) and my beloved Great Dane, Thor, passed away all in the fortnight before Christmas. Merry Fricken Christmas, folks! When that weekend I discovered I could nolonger move the toes on my right foot it was a bit of a final straw. I couldn't take one more shitty thing at that point. I had a day of self-pity and sobbing into my pillow. Then I wiped the snot from my face and hit play on the cassette tape known as “Michelle's Hardcore Denial Hits of the Summer.” ER be damned. That's where really sick people go.

I told myself that it'd come back. It was just the lack of blood flow. Or a pinched nerve. You know, the usual suspects. I did the basic stroke routine (perks of having worked in stroke rehab). Then I pretended like it wasn't an issue. By the time two-weeks had passed and I still had no movement I finally thought it was time to see my GP. Needless to say I received another “you're a dumbarse” lecture and she rang my neuro on the spot. Of course their were no emergency appointments, and given the fact I was neither in pain or dying, I decided not to push it and just take the earliest available.

As I lie here today I have minimal movement back. But minimal is some, in my deranged mind. I'm choosing to ignore the accompanying reduced movement in my ankle. What reduced movement? What toes? What ankle? (See, I'm good at this). I have an appointment booked for two weeks to review things. But the idea of having to drive the 2 ½ hrs back to the city so soon after the move is not inviting and I am thinking of cancelling as I have another appointment with her a month later. When I factor in the lack of pain and dying, I can easily reason that it's not that important.

And so I sit here in “dumbarse” territory again.

The place where past negative medical experiences and an impressive ability to normalise the completely abnormal meet.

But you know, it's all okay. It's not like I'm really sick. It's nothing but a flesh wound.

Michelle :)

Update: Since I wrote this post I have had a moment of sanity and have decided to go to my neuro appointment next week. 

Denial is my weapon of choice.

Single-fibre electromyography (SFEMG): The waiting game continues.

You know your life has taken a weird twist when you're lying down in a room with two neurologists, a needle hanging out the side of your face, your son looking on, and you're all giggling as the machine measuring the health of your nerves, chucks out a long, and loud, fart noise. But this is where I am. So far down the rabbit hole at this point that I don't know if I'll ever climb out.

There is nothing elegant or glamorous about the world of medicine. If you had pride back at the start, by year 7 it's long gone. You become resigned to a life peppered with small clinic rooms, festy waiting rooms, telling complete strangers the most intimate details of your physical being, and your personal space, and body, being invaded again and again and again. You have to learn to laugh at it all or you lose a little part of yourself with each encounter. And really if you can't laugh at your farting nerves what can you laugh at?

This past week I was booked in for a single-fibre electromyography (SFEMG) at a local hospital. The idea of having a needle inserted in the face with no anaesthetic is not exactly something to which one looks forward. But it is one of those things that sometimes has to happen. Part of the diagnostic process involved with Myaesthenia Gravis (MG, my latest lovely) is not only clinical observation and blood tests (ie the anti-MuSK and anti-AChR antibodies), but also fun things like the SFEMG.

Even resigning myself to the process it's still one that leaves you a wee bit stressed. To counter my increasing levels of "Argggghhhh", I took the obvious path. I dressed brightly and wore my Dorothy shoes. As you do. Yep, I face my fears with colour and glitter. And photographs. On this occasion, my eldest son and budding photographer, came along to document the process.

I'll have to give it to the two neurologists. They didn't bat an eyelid when I rocked up in my sparkly shoes. And the response when I asked if they'd mind if my son took photos? "Sure. That's not the weirdest request we've had." The mind boggles.

After my inept attempts to explain what has been going on, my son found a photo of my face on my phone which showed the start of the weakness and ptosis. I can't stress enough how important it is to record pictures and videos of these symptoms. So much about our disorder is intermittent and 9 times out of 10 they wont be present on the day of our appointments. But this way they were able to see what happens and pull it apart bit by bit.

It's strange to see your photo being divided up into it's parts. A miss-match of contractions, weakness and ptosis. What I just see as facial blancmange, they saw as the diagnostic motherload. It also allowed them to decide exactly where to put the needle to get the biggest bang for the buck.

Of course this meant that I had to have the needle inserted, not near my eye like everyone else, but in the muscle next to my mouth aka "we rarely do it here, but after looking at your photos it seems the best spot." Apparently, this is also known as one of the more difficult areas.

Having said that, the neurologist in charge of the needle was lovely and encouraging. And you need the encouragement. Trying to purse your lips for 20mins whilst a needle is moved around to find the nerve fibres is damn hard. Add in that the muscle on the left side of my month twitches like crazy with the slightest strain, and trying to keep it still is a lesson in futility. Thank goodness for my meditation practice.

I "So Hummed" the hell out of that test.

It's strange to 'hear' your nerves. The crackles and fart noises are not what you expect, and the latter make it hard not to laugh. Given the giggles that also emerged from the two neurologists it would seem that the pleasure derived from a fart joke, transcends all levels of society.

After all that I was met with a series of unexpected questions about my family medical history. Followed by tests of my hand strength, ability to make and release fists and a testing of the reflex at the base of my thumbs. Both doctors asked the same questions and finished each other's sentences. It was clear that something key had come up on the monitor. Something that had lead them both to the same diagnostic destination. My least favourite word "interesting" was uttered and a groan may have escaped my lips. Then there was a request to do an additional SFEMG on the hand.

Of course by now my interest was peaked. I may have had a worried "hmmm..." moment, but I agreed.

Well, that's not fun.

The hand version hurt more than the face one. Especially when they decided to hit me on, or just next to, the needle with the neuro reflex hammer. I mean I know that it was necessary, but OW. There really needs to be a safe word with all these tests. It's still a bit bruised and tender 4 days later.

And at the end of all this I am hit with the whammy:

"We discovered some abnormalities that were totally unexpected."

Totally unexpected.

Totally fricken unexpected.

*sigh*

Apparently whatever these abnormalities might be, they are indicative of a neuromuscular disorder but they wouldn't tell me what. They wanted my regular neurologist to interpret them in line with my previous history. They did say they may have finally found my cause, and that is big news. But.

Poker faces, boys. You need to work on your poker faces.

It's weird that I had become accustomed to the idea that I have MG. Emotionally, I'd come to terms with the diagnosis, as it all seemed pretty clear. I'd read up. Tossed up my treatment options and hovered on the edge of an online support group. And here I am again adrift in the seas of the unknown. From their reaction it was clear that whatever came up was not indicative of MG. What it is indicative of is, well, who knows. Now I get to wait until December to find out.

Waiting. Waiting. Waiting.

I think I have spent the bulk of the last 7 years waiting.

I feel like the kid in the back of the car constantly asking "Are we there yet?"

Thank goodness for the power of glittery red shoes. It would seem they bring joy not only to me but complete strangers in an elevator, fellow patients in a waiting room and even silver-haired neurologists.

Michelle

(Thumbs Up for Awareness blue thumbs combined with Dorothy heals

 has to kick Dysautonomia's arse) 

This one's dedicated to MG who may or may not be part of my package.

Develop all the symptoms!

I saw the above picture over on Carrie, from Just Mildly Medicated's, Facebook page today and thought it couldn't be more perfect for my current situation. If you follow me over on Facebook you know that despite Jeri's (my pacemaker) best efforts I've still had a dive in my symptoms. This is not to say that Jeri isn't doing her job. She's been a trooper, and I haven't had a collapse since she went in. Funny how a regular heart beat helps. But alas even Jeri is just not equipped to fully deal with my body.

I've had a step-wise progression. Ie I deteriorate for a while, then that stops, I become kind of stable for a while, and then I start to deteriorate again, until the next plateau, and on it goes, ad infinitum. It's been my regular pattern the past 7 years. But something definitely changed back in May. Not only did my heart decide to become a couch potato, but a host of other symptoms popped up, some new and some with an increase in frequency. As I said, "I think I may be in the "fall screaming" stage before I hit the next step plateau."

Luckily, I also had a neurology appointment coming up. Instead of my normal 'Take in my 3 Top problems', philosophy for medical appointments, I ended up with 7. Then as my appointment progressed and she started asking the right questions (because she's an ace neurologist) and Eunice (my last remaining, and thoroughly over taxed, brain cell) finally looked up from her latest edition of Woman's Day, more problems came to mind. 

Thankfully, instead of relying on my inadequate descriptive skills I also came armed with a host of photos and videos to show what my body does in these bad patches. Even more thankfully, my lovely neurologist was stoked that I had a multimedia display worked out for her, on top of my nicely set out, dot point, list in my notebook. (We may just share a love of organisation and structure.)

Thankfully again, or not depending on how I am reacting to the news in a particular hour of the day, she actually had an pretty clear idea as to why I can't walk periodically, and why the left side of my face (not unlike my boobs and sad derrière) heads south, and why my breathing gets difficult periodically, and why my meds are getting stuck in my throat, and why I can no longer squish a lemon, even with 2 hands, and..... 

You see not only do I have, as she put it on my referral for a biopsy of one of my facial nerves (that's right, they are going to cut another fricken nerve out of my body), "a very rare autonomic disorder" (so rare it doesn't even rate it's own name, though I did suggest FUBAR to her again. I do hope it takes off.) I have also developed another rare, this time neuromuscular, disorder. Because one just wasn't enough. No way, no how, baby. I'm gunna get me all the symptoms! Oh, and did I mention they are going to CUT INTO MY FACE. 

The culprit this time being Myaesthenia Gravis, or grave muscle weakness, for the less Latin-minded. Well at least that's the odds on favourite. The Black Caviar of all the potential neuromuscular junction disorders. I'll let the interested read up on it in their own time, as really I can't be arsed facing it enough to write about it in detail at the moment.

And after a a quick squizz of Medline the likelihood of having either of those rare disorders is indeed very rare. But to have them both together, to have The Universe insert the pointy end of the pineapple in my nether regions once more, and with great vigor, is pretty much rare to the power of infinity. Damn you body and your anal tendencies to do everything 110%! 

So now I am waiting on the confirmation from antibody testing and await the joy that will be the facial nerve biopsy. Admittedly there are a range of treatments, none of which are pleasant, (Mestinon and I did not part of good terms after our short-lived daliance) but it is manageable. YAY another no cure, progressive diagnosis. Just what every girl wants to hear.

And all my autonomic symptoms, small fibre, and now large fibre neuropathies are spreading/multiplying like randy little rabbits all over this sack of meat I call, my body (or Arsewipe, depending on the level of maturity of my coping skills at the time).

Oh and did I mention they are going to CUT INTO MY FACE!

Michelle :)

But I did get to up my pain meds. And my neurologist said I looked pretty, and she liked my skirt. And now every time Mr Grumpy moans about something I simply yell "WELL AT LEAST THEY'RE NOT CUTTING A NERVE OUT OF YOUR FACE", which frankly is the best come back EVER. So you know it wasn't all bad.

PS Go on over and visit Carrie over on Just Mildly Medicated, love her. She's a woman after my own heart. Taking the piss out of illness. Cracking sense of humour. And she understands and shares my love of both Game of Thrones and The Walking Dead. Oh, and she has a cape!

Well Mrs R, it seems you have a bad case of FUBAR.

(photo)

Okay, so my neurologist didn't exactly use the word, FUBAR. She may have started our appointment by saying I was "special", but as any seasoned chronic illness patient knows, that is doctor speak for FUBAR. You see, out of options A (write your will now), B (don't stress, you've got a good 10 or 20 yrs of painful, untreatable, deterioration to write your will), and C (we have no fricken idea what you have, you weirdarse freak), it appears that I am a big fat C.

Don't get me wrong. I'm pretty happy to finally rule out some of the particularly nasty things which have been hanging over my head as serious contenders for a cause. Lets face it, avoiding a painful death any time soon features pretty high on the win side of the ledger. So a big YAY to no death. And a big old YAY to no long lingering nastiness whilst I'm at it. But a big loud and moist raspberry to no answers.

My neurologist is lovely. She's a top specialist in the country and I know she tried her best to work out what the hell is going on with this stupid body of mine. The testing she organised for me in hospital was very thorough and managed to rule out many hard to pronounce and scary diagnoses. But being told that you're one of a handful of her patients who will most likely never have a name or known cause for their illness, is a rather big blow. Turns out knowing that my current state of health was likely permanent, is a lot different to having it finally confirmed.

The one thing I know from my hospital stay is that I have seen all the top doctors. This was further confirmed by the epileptologist who brought his students in to interview me. As I listed off the testing I've had done and the doctors I've seen even prior to my stay, he was in awe. It's not often that a patient is so thoroughly investigated, being 'interesting' has some perks. So at least I know I've done all that I can do to find some answers. But conversely it means there is no where else to go. And frankly, that's a little disheartening.

I am left with a complex collection of weird unexplainable symptoms. Apparently, it's clear I have severe autonomic dysfunction, that my hypothalamus and pituitary are no longer working properly, that I have either a primary or secondary enteric dysautonomia, progressing small fibre neuropathy, some of my axonal sheaths are thinning, the list goes on and on. My body is clearly breaking, but none of that gives me a definitive diagnosis as to why. And with no definitive diagnosis, I have no treatment plan past symptom management. A cure is no longer a realistic option. I have no idea what comes next, though with six years of consistent progression it's a pretty safe bet that it'll continue to progress. But most concerning for me, is the fact that I don't know if this is something I can pass on to my kids.

I know I have a team of doctors who are all the top in their fields, who are willing to go above and beyond, are willing to investigate anything I suggest, and are equally frustrated. Doctors who take me seriously and work collaboratively despite all the obstacles my contrary body provides them. And thanks to that one fact, I've ticked all the testing/hypothesis boxes off my list. I know in this respect I am far luckier than many other patients. I now also know that even with all this it is still no guarantee of answers, or solutions.

Since yesterday I have alternated between, tears, anger, and numbness. The stress before yesterday's appointment, thanks to all the possible "what ifs" that kept playing through my mind, has taken a toll. Add in that I am in the midst of a bad run of insomnia and my coping reserves are a bit lacking. A long soak in the bath last night and just sitting in my garden today, feeling the earth under my feet has helped. I'm no where near finished processing what it all means. I'm at a crossroads. I've done all I can and I have to make a choice to accept that what I was told is the simple truth. That it is what it is, no matter how much I wish it were otherwise. Sometimes, shit just happens. 

As I sit here tonight I realise that my ideas of hope are evolving. Where once I hoped for a cure, now I hope for happiness and acceptance. And whilst the recency of this news means I am still an emotional basketcase as I sort through all the implications for my life and that of my family, I do believe that happiness is a choice you can make regardless of your circumstances. And if this is as good as it gets I will damn well make the most of it. Besides, happiness really is the best way to give my body the middle finger.

In the words of Peggy Lee,

" Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is "

Michelle :)

Pretty sure this will be playing rather loudly on loop for a while.

Bugger reality, bring on the Mega Piranha.

(photo)

Well, it seems I have run out of swear words. Who knew that was possible? I am forced to get creative with classics like "you purple donkey chair muppet" or "tissue sniffing glass bandit". Word salad (with a side of hypoxia) is a wonderful thing. I'm over being an adult, so I quit. Maturity is not for me. No way. No how. I'm going to pout. Scuff my shoes, and say "I don't wanna", over and over again. I'm going to take off my big girl panties and run around the yard swinging them above my head like a mad woman. Okay, maybe not the last one. My elderly next door neighbour may not cope too well with the sight of her crazy, sans undies, neighbour running around like a headless chook. Frankly, even my ever adoring dogs may be forced to re-evaluate our relationship should they see that little display.

I finally heard from my neurologist and will be seeing her this Wednesday. Two days. Ugh. Fanfrickentastic. Time for answers from my week of hospital testing. Stupidly, I've been peeved that it's taken so long and now that it's here and reality is about to jump up and slap me, I wish I was still playing the waiting game. My mind truly is a wonderfully contradictory and messed up place. The way things sit it's really a no win situation. Option A is that I have a disease of the nasty, better get used to the word 'bequeath', variety. Option B is that I have a disease of the nasty, wont kill you yet but there is no treatment and you'll slowly and painfully deteriorate over time, variety. Option C is they still have no idea of what is going on in my body other than I have a bad case of FUBAR, and I am left to continue on as I am, no idea why and no solutions. Which would also mean I have added to my collection of impairments for nothing (go sural nerve biopsy which is still swollen and scabby, 3 lots of antibiotics and five weeks later). YAY me. Can't wait for that appointment. Personally, I think my time would be better spent watching a bad SciFi movie like Frankenfish or Mega Piranha, or stapling empty Lindt wrappers to my head, as I ignore reality and immerse myself in chocolaty goodness somewhat akin to this scene from Chocolat.

On the good front. Youngest is slowly recovering from his second knee reconstruction of the year. And we are both slowly recovering from me having to help him bathe today. An event that surely rates as a highlight of any 14-year-old boy's life. Now if only we could get rid of the pungent teenage boy funk coming from under his leg brace, that would be lovely. In true Chateau Rusty style we did have a small familial celebration at his first post pain med poo. Lots of woo hooing and such. (When I think about it we do celebrate a lot of poo milestones in this household. There is also much in the way of fart humour. We even used to tuck our boys in at night with a goodnight fart, as well as a goodnight kiss, which always ensured giggles. Not much has changed over the years. I'm sure my mother is suitably proud). He's now sitting on the couch eating M&M's and watching movies, so I'm thinking alls well on his end. The good drugs will do that for you. Me, I'm still in recovery mode, though nearly 24hrs of coma sleep did help things along. Baking and gorging on cranberry and walnut hot crossless buns has also helped considerably.

On the personal front there's a whole heap of, out of left field need to be an adult, decision making to be done. All of which has left me feeling a tad overwhelmed, a tad manic, and desperately in need of a break from reality. Sitting in my pjs, watching 'so bad it's good' scifi, with a Lindt IV is looking pretty good at this point. I may even break out a bit of Two-Headed Shark Attack action to make it through.

Cheers
Michelle

I leave you with bad scifi at it's finest (2.6/10 stars according to IMDb) because it must be shared. Gigantic mutant killer piranha who fly and explode, and it stars 80's singer Tiffany and The Brady Bunch's Barry Williams! What more could you want?

"What doesn't kill you, makes you stronger" and other BS sayings.

When I first became ill my doctors tried to comfort me/fob me off/make me feel whingy, with the "it wont kill you" line. And so far they are correct. I'm still not pushing up daisies, although some days I do feel like I should. I may look like death. I may even feel like a warmed up version of death on what is now a fairly regular basis. But I'm still here, kicking on, or crawling on, or lying elegantly on my bathroom tiles still breathing if not moving. Whatever the truth may be.

I realised today that unlike the ridiculous saying in the title of this post, I don't always feel stronger for all this crap. By rights I should be the Arnie of the illness world by this stage. But apart from a really bad attempt at "I'll be back", I am feeling a little on the lacklustre side of the ledger.

Monday I go into hospital for the week to try once and for all to sort out what the hell is wrong with this old body of mine. It's going to be a hell of a week. I made the mistake of reading over the neuro registrar's letter that lists all the things I need to be tested for and all the painful ways they are going to do just that. And frankly a little piece of my mind whimpered a pathetic "mummy", whilst it rocked in the corner.

I've known for a while that something less savoury is going on with my body. But compartmentalisation and denial have been wonderful bedfellows and I've been reluctant to kick them out. Now I am faced with having to take it all seriously. By the end of next week I could have an answer. Or not. I don't know which is worse. If I get an answer it means something rather nasty is happening to my body. Something that may or mostly likely, may not have a solution. Or even better may have a solution that I am no longer well enough to attempt. Both my neuro and the neuro registrar were very clear on that, again and again. No room for false hopes.

Or I can be poked and prodded, scanned and zapped, for a week and come out none the wiser. Stuck in the holding pattern yet again, with only a few extra nifty scars to show for my efforts. Which is worse? Knowledge or no knowledge? I'm not sure at this point. Though it would be nice to have a proper name for this damn shadow that follows me everywhere. It'd be nice to know what I'm up for, even if it's not that great. It'd be nice to have certainty once more, because I sure as hell have missed that over the last six years.

Because despite all the assurances that "it wont kill me" or I'll get some fricken' life changing epiphany from the last six years of my life, it doesn't make it any easier. I'm tried of being sick 24/7. I'm not all smiley, perky, moonbeams and sunshine. I'm not the brave sickie valiantly fighting the good fight and worthy of a Hallmark movie of the week. I'm just me, and I'm tired. I'm bitter, and I'm pissy. I want to say a big FU to the universe. Just for once I want an answer. Just for once I'd like to get it without pain and fear. Just for once I'd like to feel well. Because I really don't know what that is any more.

I don't want empty platitudes. I don't want someone to tell me it'll all be okay. Because it may not. Because that's not reality. Because none of those sayings mean a thing when I can't stand or stop the pain shooting down my legs, or am throwing up in yet another public loo. I want someone somewhere just to say "I hear you". To acknowledge that yes, this is shit. That no one should have to deal with this. And that it's okay to say just that.

I know people don't know what to say. That they mean well. But every time someone trots out those perky sayings, they might as well just tie a gag around my mouth. Because each one tells me to be silent. To not raise my voice. To stuff down my feelings. To not rock the boat. And most importantly, don't make others uncomfortable by my suffering.

I have fears. They whisper in my ear at night. Fear that I'll get an answer. Fear that I wont. Fear that the damn tests themselves could leave me with further pain. Fear that if I share these fears that I make them real. Fears that live alongside all my positive affirmations and distraction techniques. Fears that still exist even when I laugh and act the fool. Because that's reality. Because not sharing them, or pretending they don't exist, doesn't make them disappear.

So my emerald suitcase lies open and empty on the bed. And today I just want to crawl inside, zip it shut and hide from the world. Because I don't want to be strong today. Because this sucks. Because it scares those who love me, just as much as it scares me. Because I can't give them those empty platitudes. Because I wont lie to them. Because they deserve the truth. And if that truth is unsavoury and unpalatable, so be it. We will deal with it because there is no other choice.

We tell lies when we are afraid....Afraid of what we don't know, afraid of what others will think, afraid of what will be found out about us. But every time we tell a lie, the thing that we fear grows stronger.

Tad Williams, Storm (1993)

So I'll share my truth. I'll shout it from the roof tops. It'll be battered and bruised. It'll burn the eyes and hurt the ears. It'll make many uncomfortable. But I wont be placated. I wont hide. And maybe, just maybe, those fears will grow weaker.

Michelle

Ain't no mountain high enough.

For those of you who follow on Facebook you'll know that it hasn't been the rosiest time here at Chateau Rusty. Last Wednesday saw me at the neurologist's expecting to organise a long overdue repeat MRI and EMG. Instead, I was met with a worried and confused neurologist who wants me hospitalised for a few days to be investigated by various specialists and have a large number of nasty tests. From nerve and muscle biopsies, to the dreaded bone marrow biopsy, and everything in between. All to be followed by being presented to the neurology department for discussion and brain storming. Amyloidosis rears it's ugly head again, but this time is joined by a long list of barely pronounceable diagnoses, all of which fall into the Oh Shit category.

Still waiting for the coordination to be worked out. Hopefully, I can be knocked out and the pathology guy can go crazy taking all the biopsies in one hit. Fingers crossed that works out. And that there are good pain meds when I wake up. At the very least she has promised that I can be sedated for the MRIs and for that alone I am grateful (long time readers will recall my pathological aversion to MRIs from here). As we were shuffling out the door I realised I'd lost track of all the tests she ordered half way through. I'm thinking it was some sort of dissociative fugue, brought on by my lack of mental preparedness for her reaction and general pee my pants fear that threatened to bubble over. 

Whilst I am glad that she wants to really investigate things for me, it was all rather confronting, and if I'm honest, it is just a wee bit scary. I'm used to my decrepitude. It is my normal, but apparently to others it is rather high on the abnormal scale. Amongst other things I've managed to completely lose the reflexes in my feet and even my tongue muscles are wasted. What this equates to I don't know, well apart from adding to my "interesting" factor. I knew my neuropathy had spread and my functioning had decreased, but as the L-Plater is known to say, it seems "Shit just got real". Very open to hugs, well wishes, crossed fingers, prayers and whatever good vibes to which you happen to subscribe, at this point.


I have decided to face the prospect of hospitalisation, painful tests, and a less than stellar diagnosis in the only way I know how. Denial. It's a very pretty place and I'm quite happy here. I like to think it's a bit like Moldova's 2012 Eurovision entry (Thanks Kate for reminding me). A little bit out there, but with an annoyingly catchy tune. (Love that Sweden's, Loreen (my mum's side of the family) won this year. But trying disparately to forget my Dad's Irish heritage in the form of Jedward. Okay, I may be a bit addicted to Eurovision. For those who've never watched or heard of Eurovision, you must watch this fascinating documentary on it's history. It's available on Youtube in 9 parts). 


In the meantime I have set myself some challenges. First of those is to get out each day and walk to the top of our road and back. It works out at about 100m but it's uphill, so I figure that's about 1km on a flat road. Plus, it has the added advantage of allowing me to roll the whole way home if my legs give out. I wouldn't attempt it alone and luckily Mr Grumpy is happy to come with me to hold me up, or carry me home, as the case may be. It's not easy. Half way up yesterday I thought my lunch was going to come back and say hello. And by the time I managed to get home my bp had dropped and I was in need of a nanna nap. But at least I was out of the house for once. Once my body stops feeling like someone attacked me with a crowbar I'll be out there again.

I know 100m seems farcical to those who are well. But I can tell you with absolute certainty my fellow Bobetts will be sending high fives and waving pom poms, at such an incredible feat. Given how much my health has deteriorated over the last few months, this one pissy hill is like Everest. And I'm going to given myself a pat of the back.


Next on the list is to do Deepak Chopra's 21 Day Meditation Challenge. I have been doing meditation on and off for years but always end up side tracked. Prior to my increased mobility issues I had hoped to go to the local Buddhist temple and learn there, but that is just a logistical nightmare at the moment. So when friend and fellow Bobette, Coppelia, posted this challenge I thought it sounded like just what I needed given my stress levels are a tad high at the moment.

Bonus is it's free. Important when money is tight. I also know that once signed up I'll feel like I have to do it, rather than make excuses. Mind you it's only 15mins for each class. If I can't find 15mins in my day for meditation something is very very wrong. Two days down so far and I must admit I am enjoying it.


So between my daily 100m walk and meditation it has to help. Tell me it will help!


Cheers
Michelle :)


PS Don't forget to enter the Pampering/Thank You GIVEAWAY. 
PPS I am working on a post of Answers to all the Questions left on this post. It should be up soon.


Can't go past a bit of Kate Bush musical accompaniment. Just replace 'Running' with 'Stumbling'.

I've added Wuthering Heights as I may have mimicked Kate Bush's dancing skills and singing on more than one occasion over the years. A little tip: don't try her dramatic dance moves when you've had a glass of forbidden wine. You're tail bone will not forgive you when you land on it.