Thursday 28 November 2013

Pay it Forward: Dysautonomia style.

One thing I have learnt about the chronic illness community is that it is filled with many wonderful and generous people. The support I have received from complete strangers, both here in Australia and all over the globe, has kept me going through some of the toughest times. For someone to spend their precious energy to send me a funny photo or Dorothy related shot because I'm down or they just wanted to share a laugh, is a beautiful thing. And it is one for which I am very grateful. This is the strength of the community, and the beauty of the Internet. To support, and receive such support, is truly wonderful. 

In light of that I wanted to propose an idea. This idea was born from an event earlier in the year, and my favourite Ghandi quote,

"You must be the change you wish to see in the world."  

Back in May I was lucky enough to be given a free wheelchair, Vera, to tide me over until my reclining chair comes. Vera was an upgrade from my first wheelchair, Bernice, and has a fabulous squishy cushion for my dodgy coccyx. This left Bernice, my first wheelchair, sitting forlornly in my rumpus room going to wrack and ruin. I didn't like seeing her sitting there unused. So I put an advertisement on our local Dysautonomia support group. It ran a little something like this:

"FREE TO GOOD HOME: Bernice has been a trusty companion since I first got her. Despite my initial reluctance she's been increasingly on the scene, going to shopping centres, restaurants, even comedy gigs. As you can see from the photo she's up for a laugh and appreciates sarcasm. She may be a little cheap, but in no way nasty, and is up for bedazzling or a new coat of paint. Don't let her start at the Aldi Home for Wayward Wheelchairs fool you, this lovely lass has gusto and class. I have recently upgraded to Vera and despite my love for Bernice she is looking a little forlorn in the corner of the rumpus room, especially when Vera and I head out on a date.

Such a comely lass as Bernice needs to be out and about, and is the perfect starter chair for someone tossing up if they need/want a chair. So I'm offering her up free to a good home to anyone in the Melbourne area who can come and pick her up. She may even be the perfect starter chair for many and travel all over Melbourne as part of a pay it forward campaign.

So if anyone has a forever or at least a, for a while, home where they can give Bernice the love she deserves, she's yours. First in best dressed, Melbournians."

Bernice was snapped up quickly, and now lives with Caroline a few hours away. Here she is in the doorway of her new home poised for an outing.

("The beloved Bernice. My freedom wheels." - Caroline.)

I was lucky to have Bernice and I wanted someone else to have the freedom she gave me. And I'll have to admit the first time I saw a photo of Bernice and Caroline out and about, I was filled with joy and a wee bit teary.

(Vera will also go to a new home when my tilting chair comes.)

There are many people in our community who are either unsure they want a particular aid and don't want, or have, the funds to try them out. Alternately, many simply don't have the money to purchase aides they desperately need. When you think that even one pair of medical grade compression stockings can set you back $100+ you begin to realise that being ill is an expensive business. And for many it comes down to a case of prioritising a litre of milk and some bread for their family, over a much needed chair or cane. 

So I want to propose a medical/Dysautonomia style, Pay it Forward movement.

How many of us have equipment, be it canes, wheelchairs, shower chairs, compression stockings we brought, we wore once, and didn't like, or they didn't fit? How many have gym equipment, a mini cycle, therabands etc that are just lying around thanks to a change in our health, or an upgrade?

If you've improved you may have devices you no longer need. If you have been lucky enough to get upgraded equipment you may have your old equipment just sitting around gathering dust. Why not give it to someone who needs, and can use it?

It's easy to participate:
  • Decide if you have equipment you no longer want or need.
  • Make sure it is in working order and mank free.
  • Hop onto your local support group site.
  • Or, alternatively a forum or general support group.
  • Write up a short “Free to Good Home” speal.
  • Organise a pick up or drop off, whatever you are comfortable with.
  • Know that you have made a difference in someone else's life.

Remember this about gifting the piece FREE. 

It's about paying it forward to those who may not be able to afford that chair, cane, pair of compression stockings, etc.

That piece of extra equipment you have languishing unloved in your cupboard or back room may change someone else's world.

So what are you waiting for?

Michelle :)

I would love to hear how people have Paid it Forward. Drop me a line here on the blog, via email or over on Facebook or Twitter.

Wednesday 27 November 2013

Giving in or taking control?: Mobility aides.

(I've loved this chair since I first saw it a year or two ago.
It belongs to Italian art director Fabrizio Sclavi. Full photos can be found here.)

I've seen a number of posts lately where fellow patients have been chastised by their doctors for using mobility aids. There is a perception amongst some, that to do so equates to patients "giving in" or "becoming" their illness. Whilst there will always be a small subset of patients who do indeed embrace their illness, these patients constitute a distinct outlier and are not reflective of the wider patient population. Instead, choosing to use a mobility aid for most, is an exercise in taking control of their situation and accessing the world. It can also require a large emotional leap, letting go of our stubbornness, and a swallowing of our pride.

On one hand I can understand the doctors' concern. Embracing the sick role is not helpful. It impedes recovery or management and increases what is known as, excess disability. But a large part of me wants to yell at the computer "are you serious!" Very few are the patients who truly revel in being ill. Most rally against illness, are desperate for a cure, and are driven to do anything to return to their old lives. Patient's who do otherwise are the exception, not the rule.

For the majority of patients, be they from the Dysautonomia or other chronic illness communities, to use a mobility aid, particularly in public, takes an enormous emotional wrench that is hard to articulate. Even when these devices are clearly required, taking that first step or roll can require a huge change in thinking. Acceptance is a hard road. Especially when you still cling to the hope that you'll suddenly get better and therefore not require that particular aid. Those early days can be fraught with much stress.

I've documented my own struggles coming to terms with buying and using a walking stick, and wheelchair, and finally doing the paperwork for a Disabled Parking Permit. In each case it had been a case of others forcing my hand. I went through months of increasing unsteadiness, until my children looked at me one day precariously balancing/hand walking around the car to make it from the drivers seat to the passenger seat and they simply said "you need a cane, Mum." I was walking like a drunk on a daily basis, but without their strong prompting I would never have purchased one. Same for my wheelchair. And if not for my firm but gentle OT, I would still be without my parking permit.

The use of a mobility aid when you are in your teens or 20s or 30's or really any time, is confronting. Such products are not directed at the young. My first wheelchair, Bernice, was found in the local Aldi brochure under Aged Care Products (as was my shower chair). There is an inherent belief that such products are the province of the elderly, when in fact that traverse all age groups. In the wider community looks and questioning quickly inform the user that their situation is abnormal. I still recall the look on one check out server's face when she asked how I'd injured my leg. Was it a sports injury? Had I been hiking? She looked confused and then aghast when I mentioned a neurological disorder. This is not the norm for a then 30-something woman. Whilst even now at 40 I frequently recoil from the looks, for a teenager, at a time when self-image and self-worth are being defined it can be incredibly difficult, no matter how helpful such a device may be.

For many their use signals that you are in fact sick. I know for myself having my GP fill in the paperwork entitled "Confirmation of Disability" was confronting. Not because I didn't realise that I could barely walk from my car to the house some days. Not because I didn't know that my health had deteriorated significantly. But getting that piece of paper signed made it real. I could no longer live in denial. And frankly, I was quite comfortable and happy in my denial.

For many we keep pushing on. Collapsing when out. Or simply, not even venturing out of our homes. We fight through for as long as possible, often to the point where it becomes harmful. We convince ourselves that we aren't that sick, or not sick enough, so we don't need help with mobilising. We are stubborn and often need to be coerced to accept that a wheelchair or cane may indeed be helpful. Even long after accepting that a wheelchair is needed to venture out of the home, especially if any distance is likely to be involved, I still resent having to use one. Logical me knows it helps. Emotional me wants to run it over with a tank. Repeatedly. Luckily, logical me combined with persistent family members who give me the "you're being a dumbarse," look win out more often than not.

For many we have other competing medical issues, for example pain, which we don't mention to anyone but the doctor dealing with that particular issue. As a result one doctor may be completely unaware that walking more than 50m leaves a person in bed for days thanks to residual pain, dislocations or post-exertional malaise. For many these competing issues creep up on us bit by bit over time. For example, you can normalise the subtle increases in pain until suddenly it begins to impact on functioning, and that next small increase is the proverbial straw that broke the camels back. It is often only when all these competing disorders reach that magical combination that we start to look at mobility aides. And what can seem like a sudden and un-needed decision, is actually the result of a long process of subtle exacerbations in symptoms from competing and combined disorders.

For many their choice is accept using a mobility aid or never shop, or go to the movies, or a market, or to socialise. If walking 50m equates to passing out or pain, you are unlikely to venture out on a regular basis. If however you have wheelchair you may be able to go to the shops for a few hours or visit a market. You get to be out in the world. The benefit of having the ability to participate in the community or attend family events cannot be underestimated. Chronic illness and isolation frequently go hand in hand. Depression can often follow. That wheelchair that allows a patient to go to a family wedding can be the difference in successfully dealing with or managing disability or, becoming overwhelmed by isolation and hopelessness.

For many mobility aides are used only when out in the world. At home, in small areas, they still manage to walk as much as possible. Or they are used to help with safely navigating the house when their illness is flaring. The stubbornness that stops many from wanting one in the first place frequently means that when they step in the door walking sticks and the like are thrown against the wall and we manage as best we can without. Hardly a case of giving in, or embracing illness.

For many they still attend physiotherapy or exercise at home. Whilst they are working on increasing their fitness and strengthening their endurance, to hopefully be able to walk around aid-free, these devices help us to be mobile. To get to our appointments and to continue with life as much as possible. The idea that their use will set back a patient's improvement, negates the fact that most only use them at select times and are still committed to re-conditioning their body as much as possible. Additionally, a mobility aid may allow for access to the gym that would otherwise be inaccessible. Ie, it would allow someone to conserve their limited energy to exercise once inside.

For many it's a conscious decision of how to best spend their energy. For example, if you want to go to your child's sporting event, standing or walking a long distance may become prohibitive and you are forced to stay home. A wheelchair or cane, takes one energy task out of the list. You may be able to sit for an hour or two and watch a game, or walk from the car park the long distance to the field. But often you can't do both. The wheelchair allows us to conserve our energy and participate in our family's lives. That is priceless.

Mobility aides are just that, aides. They help us to get around. They help us to last longer when out. They take away the anxiety of passing out in public, or falling over.

They are a tool in a patients overall treatment arsenal. We use medications to control our blood pressure or pain. We use compression stockings to minimise pooling. We use shower stools to stop falling over in the shower. We use mobility aides to help us interact with the world. To get out of the home and socialise.

For most patients the choice to use a mobility aid is not an easy one. We fight the decision. Often long after their use is required. We hope that one day we can put it aside. But in the meantime, we try to learn to embrace them and celebrate the freedom they give us. To be chastised for using a mobility aid after finally getting to an emotional place where you feel comfortable to use one is a hard pill to swallow.

My message to doctors is:

Support your patient. Have a discussion. Ask why. Don't leap to conclusions. Don't expect the worst. And you may just find that the decision is well thought out, very practical, and yet another important part of their overall therapeutic program.

Michelle :)

"Hey teacher. Leave those kids alone".

Sunday 24 November 2013

That time I got waaaay too excited about medical tape: 3M Nexcare Sensitive Skin Low Trauma Tape

My track run with medical tapes, or more precisely medical adhesives, has not been a good one. Prior to becoming ill this wasn't a huge problem. The odd Band-Aid would leave me a bit itchy but that was about it. Then Dysautonomia came on the scene and BAM, my body gave a big "Hell No!" to each and every medical adhesive I came across. Having a connective tissue issue has also not helped. Bodgy over-sensitive skin, that starts itching and breaking down when it's within 100m of an adhesive, has made life somewhat difficult. To add insult to injury, my every increasing ill health meant that medical adhesives became a common part of my life. IV's, surgeries, 24hr holter monitors, ECG dots, all become part and parcel of a life with complex chronic illness. And all require medical adhesives in some form or another.

Waking up from my venogram to find a Tegaderm stuck on my groin covering the incision into the femoral vein, made me want to weep. Even removing it as quickly as I could, I was left for weeks with a red, itchy and weeping groin of burning pain, all in the nice neat shape of the Tegaderm. I do believe this is about as far removed as you can possibly get from what Justin Timberlake had in mind when he was singing about "bringing sexy back."

Even the most hypoallergenic tapes and wound covers I've encountered in various hospitals, have ended with me red, rashy and weepy. Sometimes nursing and surgical staff believed me and went out of their way to at least try and find a less reactive alternative, but more often than not there was scoffing and a lack of belief which led to more red weepy rashes. Even a red arm band is no deterrent to many. I can't count how many times I have waved my red wrist or ankle band at medical staff who still insist that the tape, ECG dot, dressing they are about to use will be "fine". 

(This is the welting 2 weeks after 5 fun filled days in hospital)

It's a hard one. What can you do when you are fast asleep in theatre? You can hardly object. And at times you simply have to suck it up and endure the pain to keep a surgical wound covered to avoid infection. Although as I found out last year, those red weepy patches from the adhesive can also become infected and leave you mighty unwell. Or, when you need a holter monitor or ECG what can you do when you need to know what is going on with that pesky heart. Though I would say to all nursing staff, rubbing the skin with sand paper prior to putting on the ECG dots is one sure fire way to make my reaction even worse. Connection be damned, it's going to be bad enough without already inflamed skin thanks to taking an emery board to my chest.

(One of my scars courtesy of an ECG dot from my last 24 hour holter monitor)

So I've put up with burning and itching and scaring. The worst was perhaps my non-healing pacemaker incision which required continuous covering for 6wks. Crying as you put on or take off dressings, or watching as layers of your skin pull off like old sunburn, is not a fun past time.

(The adhesive burn pattern over my pacemaker incision was incredibly painful and many tears may have been shed. Though the alternative of leaving it exposed and risking infection in a wound that would lead straight to my heart, was not really an option I wanted to pursue.)

I did try testing to see if the local allergy dermatology clinic could find me some safe alternatives. 
(This was not a pleasant experience for either the itching and burning, 
or the week long non-bathing.)

And after two weeks of hell I was none the wiser. (After the first week they added another strip down my arm, just for shits and giggles.) Although I do now know I have an allergy to clove oil, a heap of chemicals I can't pronounce and most perfumes. All of this did not help me find safe dressings.

I do use a blue cohesive bandage where I can. This contains no adhesives and sticks to itself, and for those who need it, you can get latex free versions. It comes in a range of widths and colours and is available from a number of different companies. Brilliant stuff that my lovely phlebotomst, Jacqui, put me onto. It's the same tape they use on race horses. Me and a thoroughbred, equine super-athlete, the link is obvious, right?

(Works a treat for IV Saline)

The nurses who managed my weekly IV saline infusions were also clued up on this dressing and as you can see above it was used instead of the usual Tegaderm/tape combo to keep my cannula in place. And because it is elasticised they simply wrapped my arm with the same after the cannula was removed to provide the needed compression. I now have a stock of this bandage at home so I can take it to hospital or wherever I may need an IV these days.

*Every time I write Tegaderm, Spell Check wants to change it to, Megadeath. Somewhat appropriate I think!*

Having complained long and hard on Facebook, as you do, and lamenting that yet again I was a blistered and weepy mess, I was lucky enough to have an alternative tape suggested by one of my fabulous readers.

Their suggestion was 3M™ Kind Removal Silicone Tape 2770-1

So of course I searched high and low for this tape so I could test it. Which of course meant that I couldn't find it here in Australia unless I wanted to buy it in bulk. Now if it worked, like my blue cohesive bandage, I would stock pile the rolls. However if it didn't, 40+ rolls of useless blue tape mocking me from under my bathroom sink would not be the best use of my limited funds.

Luckily, my Facebook is filled with marvellous and generous people from all over the world and the lovely Jessi, who first suggested it, sent me a sample all the way from the U.S. of A. Thanks, Jessi.

So the testing began. I put a small piece on the inside of my lower arm with the aim to leave it on for 48hrs.

(Of course I forgot to use a pen with ink that doesn't give me a reaction. *facepalm* 
Luckily the redness did disappear after a few hours.)

24 hours in it was a tiny bit itchy but nothing to write home about. It did manage to mostly stay on after a shower, with only slight lifting on two of the corners. This was also after many hours of pre-open house cleaning and Great Dane slobber, so quite a feat.

And after 48hrs, well 57hrs really, as we had our open house, and time went by in a flurry of cleaning and praying to every deity known to man that someone would buy our house. And basically I forgot until I was about to hop into bed, which is a good sign when you think about it, the photo below shows the result.

So 57 hours later there is a tiny bit of redness but no itchiness or burning. Hallelujah! It didn't hurt to take off, didn't pull, and, most importantly didn't leave any residue.

(About 72 hours post-first putting it on.)

And today? Another day later there's a tiny amount of redness that you would only notice if you were looking for it, and most importantly, no welts, no weeping, no inflamed rash, no blisters, no itching or burning. No need for tinctures and creams. Woo Hoo! If I wasn't stuck in bed thanks to my post-open house malaise I would dance for joy. Though I may expend what little energy I have in doing some in bed, jazz hands and spirit fingers to celebrate.

So thank you Jessi. Thank you 3M. And thank you feeble brain and general apathy, that I didn't have the energy to turn on my computer camera and capture the abomination that is my bad in bed celebratory Voguing.

Now I'm off to bulk buy some tape.

Oh and if someone can suggest a waterproof wound dressing that works just as well, that would be fabulous.


I should probably add this is in no way a sponsored post. Just sharing something that worked for me and may help others who have the same issue. 

This is as close to dancing as I'm going to get today.

Friday 15 November 2013

Health Activist Awards: And what's in a photo?

Wego Health's Health Activist Awards are open to nominations at the moment. You can nominate for everything from Best in Show: Blog to Advocating for Another. I've been lucky enough to be nominated again this year for:

Best in Show: Blog (I originally wrote "Best in Shoe". Freudian slip perhaps?)
Best in Show: Facebook, and
Hilarious Health Activist.

Thanks guys. I really appreciate you not only thinking I'm worthy of a nomination, but also using up your spoons to take the time to fill it in.

But that's not what this post is really about, although I am pretty stoked

I was looking at my photo above and realising I don't look too shabby. If I look back over this past year that's a bit of an aberration. I don't normally look like that. The effort involved isn't all that worth it. But, after looking at some of the other activist's pictures I thought I should at least try to look a little presentable.

The fact that I was un-bathed, that I was still wearing my pj bottoms, and could hardly get off the couch, doesn't show up once you throw on a bit of colour, brush your hair and chuck on some lippy. I hadn't even managed to do up all the buttons on my cardigan as it was simply that bridge too far. Thank goodness for the ability to crop the photo. And the lack of smellevision.

 This is what I looked like prior.

Pasty, tired, and hair unbrushed. If you'd asked me to speak you would have had to translate through the slurring. I couldn't feel the left-side of my face and my eye-sight was complicated by some slight double-vision. Fatigue is now a constant trigger for my muscle weakness, particularly in my face and there doesn't seem much I can do to alleviate it.

In my spiffy photo, you can still see the droopy left-side of my face, which seems to be becoming more prominent. Who knew smiling could be so hard? But it is far more hidden thanks to considerable effort and good lighting. Much slapping and rubbing of my face made some movement possible, and thankfully you can't see the tremor in the muscle.

(Which is the real me?)

Now I sit back and wonder if I should have put up the unaltered version of me? The real version of me. The real version of living with chronic illness. The one that would have left me with some energy for the rest of the day. The one I see 99% of the year.

I feel like a bit of a fraud telling people they shouldn't worry about showing their sick face and here I am hiding my own. Nine times out of 10, hell, 99 times out of 100, I don't bother with make up. Hair brushing is an after thought. And bathing? Well that's why they invented perfume! Normally, I'd rather spend my limited spoons on meaningful activities like planting some herbs in a pot, or doing the household chores that can't wait.

But every now and then I have an overwhelming urge to feel girly. Sometimes I want to look normal, whatever that is. Sometimes it's simply nice to hide the pasty blancmange.

In the end it's about balance.

"But you don't look sick!" is a phrase that becomes part of your psyche. Repetition burns it into your brain. It's a bit of a trigger for me and makes me want to parade my droopy, pasty, blancmange face for all to see. A bit of an "Up Yours!" to the world of disbelievers if you will.

The reality is that I don't care if people see my sick face. I've shared enough photos of me at my worst that it's hardly a secret. And I'm open about all the less savoury sides of illness. But some days it's just nice to take the time to pop on some red lippy and brush my hair. Even if I'm going to be sitting on the couch with no one to see but the dogs. Sometimes I will even put on a nice dress, even if all I'm doing is running from the couch to the bathroom 38 times a day.

Sometimes you've got to do what's right for you in the moment. And sometimes it's simply nice to have at least one picture where you don't look like The Corpse Bride.

Michelle :)

If you want to Endorse me for the Health Activist Awards head on over to here and click under my picture.

I love a bit of Tony Bennett,and this duet with James Taylor is just what I needed.

Monday 11 November 2013

Treading water

Some days it feels like I'm treading water. Or maybe it's mud. it certainly feels heavy and confining enough to be mud. It clings and drags and consumes. Treading in my endless muddy water, barely keeping my head above the ripples I create with my ineffectual flailing. Exhausting. Draining. I hate those days, or should I say these days. Because that's what it's felt like of late.

I paint on my smile and put on my Can-Do hat. I do what has to be done and try to live in the moment, rather than the overwhelming notion of tomorrow or the next day. Time never ending is intimidating in it's endless expanse. It swamps me when I try to think about it. When I try to make sense of it. So much is in flux and it's tiring. There is a desperate need to finish something. To have an end to even one small thing. A decision made. A task completed. A symptom to finally reign in. An answer finally bestowed. So that I can dump it and forget it and move onto the next task at hand.

But life isn't like that. Illness isn't like that. Neither care for my need of ends. Flux is hard to deal with. But it seems to define life in all it's permutations. A permanent state of flux. There are no nice neat boxes that I can pack, seal and stack in neat rows. No storage lockers for all the sorted and completed tasks. All labelled and marked. Colour coded to reflect the effort taken and the task overcome. So I can go in at need and reassure myself that those are the burdens I no longer need to bear. A tangible tally of all I have dealt with and completed. To give me the impetus and encouragement to know that today's issue will be sorted. That it will have an end. Nice and crisp.

In my more sanguine moments I know that such dreams are unrealistic. In those moments I can tell myself that this is life. In those moments I am okay with the uncertain nature of life. I can take a deep breath and move on. In those moments I have the reserves to deal with the lack of tangible endings. I can appreciate that uncertainty also has that magical flipside of as yet unknown possibilities. That the future is unwritten and that mystery can sometimes be the most precious gift we can be given.

But today I am going to wallow. I am going to let myself feel the weight and the exhaustion. I'm going to pout and moan and shake my weakened fist at the sky, and scream obscenities at the universe. I'm going to shout about the unfairness of life, the lack of justice in the world. I'm going to sob into my pillow and throw plates at the walls that surround me.

And then...

...when the roar is over. When my fury and and sadness is spent. When the venom that is that little voice in the back of my mind, is finally exhausted and silent. I will take a deep breath. I will feel the lightness of my being. I will stand. And I will be ready to accept the possibilities before me once more.

In the words of Maya Angelou (1978)

Still I rise.

This is one of the first of Maya Angelou's works I ever came across back when I was a teenager. I remember feeling the power in the words as I read them on the page, but it wasn't till I was older that I realised the true importance of her work. Hearing it in her own voice sends shivers down my spine. Whether the voices that harangue you are external or internal we can choose to be stronger. We have to believe we are stronger.

Tuesday 5 November 2013

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.


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.


(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.