Thoughts for Friday

It’s been a while since my last post, not for lack of writing material – no, quite a lot has happened lately!  But for lack of inspiration.  Now I am inspired doubly but can’t remember the second thing I was inspired to write about (stupid dysautonomia brain!).

Today I have something sad to write about, something I didn’t really think would happen to be honest but I guess I always knew the possibility was there.  Any chronic medical condition has its complications and challenges in ways mental, physical and emotional and its important to keep going despite all this but then there are the events that shake you to the core and send shivers down your spine.  Recently the dysautonomia community was shocked by the death of one of our own.  Taken way before her time by complications of a condition not generally believed to be fatal she was by all accounts a loving, generous and inspirational person.  Our thoughts go out to her family and friends.

I did not know her personally but the messages of love and grief from people whose lives she touched around the world are heart-breakingly beautiful and help portray the image of a strong and caring woman who refused to let her illness rule the way she lived her life.  She will be greatly missed.

I was further saddened to hear that she is by no means the first to pass away from complications related to dysautonomia, not even the first this year.  There are different types of dysautonomia that stem from different causes and have a variety of symptoms but the common trend is that the heart’s function is affected in some way.  Whatever the diagnosis is, POTS, NCS, OI, IST – whether it is low or high blood pressure, tachycardia or other irregular heart rate the heart is involved as part of the dysfunctioning autonomic nervous system response and has to work harder than normal.  Our hearts were not made to run marathons without the rest of our bodies participating – it’s no wonder we feel dreadful when it happens.  Don’t get me wrong, I would actually love to be able to run a marathon but I would like my entire body to actively participate at once – imagine if your legs did it by themselves, or your lungs, that would be a bit odd right?  Well why do so many people, health professional and lay-person alike, think it can’t be such a bad thing for our hearts to do it?

Now this condition (or group of conditions) is becoming a bit more widely acknowledged we are starting to see more results; new studies into causes and treatments, new treatments made available, word of mouth from others in the same position but for some this is, sadly, too late.  Who knows how many people have died from dysautonomia-related causes, we will probably never know.  We’re told repeatedly that it could be worse, we could have cancer, we could be terminal – all we ask is to be taken seriously.  It doesn’t take much out of your busy day to look up what dysautonomia is or be a little sympathetic, a little insight and compassion goes a long way.

And here’s a little something to help with the insight 🙂


Life is a gravitron

It can be hard sometimes to keep moving when your life feels like being stuck inside a gravitron at a fun park. You know; always moving in circles really fast, beyond your control and making it hard to move forwards (or backwards for that matter or even sideways but occasionally upside down can happen) – then someone vomits and it flies back and hits them in the face. Ok maybe apart from the last bit but you get what I mean.

It’s been an interesting few weeks and I’ve been thinking about the Camino a lot. It has now been 4 months since I started walking (give or take a few days) and I have come full circle – back to where I was before I decided to go, in a place that I don’t care to visit often. But it’s ok; I think I’m out the other side of that now. It was tough for a while but something changed that. I had no hope, I couldn’t see a future I could enjoy and I was falling down the spiral again to a place in my mind that I haven’t been for a while.

Then I had my first session of Mickel therapy and it changed. Mickel therapy is a new treatment for Chronic Fatigue Syndrome, ME and Fibromyalgia. It works on the theory that these three conditions are caused by a dysfunction of the Hypothalamus gland in the brain that is responsible for all sorts of things including sleep, fatigue levels and the autonomic nervous system. I noticed a change after my first session, not a huge one but I do have more energy, a bit less brain fog and my heart rate which for months has been a little unpredictable and ridiculous is now between 75-80bpm at rest and hopefully wont jump so high when I do outrageously energetic things like standing and walking short distances.

In other news I have been occupying my pathetic time by making fascinators to add to my collection of other stuff I’ve made over the years to keep me from going insane while I couldn’t work and plan to sell soon. I will hopefully be having a stall at the South Melbourne Market’s ‘Style By Night’ series of night markets starting October 20th – unfortunately a few days late for Caulfield cup but in plenty of time for Melbourne Cup, Derby day, Oaks day, Stakes day and Cox plate! Here’s an example of what I’ve been making and to see more check out my accessories page on facebook.

How to make friends and influence POTSy’s

Last weekend I met a group of girls from the POTS and Dysautonomia Australia FB group I joined a few months ago.  It can be quite difficult to organise things when people come from all over Australia and it can be hard to commit to attending things when you have such an unpredictable medical condition.  There were 5 of us in total, we met for lunch and had a great time.

It was really nice to be able to talk about all those things specific to dysautonomia that most people don’t quite understand.  We swapped amusing (and not so amusing) stories of fainting episodes, talked about how dysautonomia had changed our lives and what we were doing with our lives now and how so little is known about our group of medical conditions.  We compared our lists of diagnoses (I was the only one with NCS not POTS) and found a lot of things that overlapped – we also discussed medical alert bracelets.  We talked about symptoms and how we manage symptoms; compression stockings, electrolyte replacement etc and compared our heart rate monitors (most with chest straps, mine is just a touch-activated watch so doesn’t monitor constantly).  We talked about all our different medications and compared our pill boxes that ranged in size and design from a sexy compact compartmentalised one with a mirror in it to my little round container with the scallop shell that I bought in a silver shop on a street in Santiago after completing the Camino.

We discussed how wonderful it was to actually have a diagnosis (It seems the average wait was 18 months – I take myself out of the average as 7 years kinda throws it out a bit) and how it all finally made sense when we did – it’s all due to a lack of oxygen to my brain and body!  I can’t help it if I get tired easily, can’t remember stuff and get confused and can’t find the right word sometimes!  We talked about travel – aeroplanes can be quite bad for us.  We talked about plans and dreams for the future.  We also discussed diet and exercise (it’s hard to maintain your weight on some medications and if you can’t do much in the way of regular exercise) and found out that a lot of the weight loss meal plans are very bad for people with dysautonomia as they do not contain nearly enough salt etc.  We talked a lot about specialists (mainly cardiologists), useless doctors and people who had made us feel useless, worse or pathetic by their lack of understanding and sympathy and of course the angels in our lives (mums generally great, brothers often not so much but surprising on occasion).

When I told my mum what we had talked about afterwards she said ‘oh dear’ in her ‘I’m not entirely sure if that’s healthy’ voice but you know what, it was great!  They’re such a positive and strong bunch of women and it was fantastic to finally have people to talk to who know what it’s like from personal experience.  Not a specialist, not a friend of someone who has it or knows someone distantly who does – actual, real people!  We could talk about it freely without the fear that people present would find our discussion boring or feel like we were complaining and one of the best parts was when someone asked if anyone else experienced a random symptom and someone else did.  I have had (for the last 7 years) flushing on one side of my face only.  Completely randomly just one cheek or ear will get really hot and the rest of my face will be normal temperature.  I had never heard of anyone having that and last weekend I discovered that I am not the only one!  I do not in fact have strange alien creatures that have taken over my body, I am human and I am not alone!

So all in all it was a very positive experience and at the end when we were leaving we realised there had been so much to talk about that nobody remembered to take photos!  I hope we can all get together again soon and that those of us working on the Dysautonomia Australia an New Zealand (DANZ) website can get that up and complete soon so there’s more information out there for people who need it.

The rain in Spain actually doesn’t stay mainly in the plain…

Day 7 – Arzua – Arca/Pedroso

So I have decided I am staying in a hotel again tonight – more expensive but I do have my reasons!  Let me explain; I like sleep, I really appreciate it, actually I could go so far as to say that I LOVE SLEEP!  My body also loves sleep and sleep has been a big issue throughout my illness.  So you see, if I was able to lounge around on a beach all day after partying heaps and staying in a poorly ventilated dormitory with 34 others including some that are intent on bursting ear drums and conducting brain surgery with their snoring it would be fine.  I honestly don’t mind staying in a dorm – I’ve done it before and I will do it again, just not tonight…
I have to respect what my body needs if I am going to make it to Santiago and what my body needs (it has told me in no uncertain terms) is sleep.  I really have been pushing it and my body has been showing the effects so I need to be nice to it when I can.

So yes, last night.  I got some sleep in between being freezing cold and then boiling hot once the accumulated  breathing and body heat steamed up the room, then I kept needing to move (moving while trying to sleep is my problem, not snoring and I feel really bad that I might be keeping people awake until a ripper snore (or fart) is let off and then I don’t feel so bad after all), then there were the snorers and the fact that wherever you were in the room the door woke you up when it opened as the light outside was bright as day and the hinges sounded like they were being tortured.

I set out in the rain at 9am.  And this time it was real rain, the rain had decided to be completely committed to its cause and required full wet weather protection as it was relentless in its determination.  I met The Puerto Rican ladies from the night before outside their Albergue (which was right next door to mine) and one joined me as planned, the other had an injury so was having a day off.  It didn’t take long to get out of Arzua and into the countryside and the scenery was beautiful if slightly damp.  One thing I love about Spain is the determination, ingenuity and make-do attitude; so what if it’s raining and my tractor doesn’t have a roof – I have an umbrella
My Puerto Rican friend was a science teacher who wanted to become a priest and we had lengthy discussions about how different life in Puerto Rico was to Spain and even Australia, particularly her neighbourhood where many children do not finish school and end up working as drug traffickers etc.  It is not a life I could begin to imagine coming from a family where it is a given that you finish school and then university and an area where the majority of kids I went to school with finished school or if they dropped out, ended up in an apprenticeship to a trade or working in the family business so they at least had some future employment to look forward to.  I know I have had a privileged upbringing (though not as much as some) and I am not naive enough to think that the whole world of even most of the world is like the one I live in but it is rare to hear these stories first hand if you do not go out and seek them (particularly coming from Australia which is so large and so removed geographically from most of the western world).  That is one of the magical things about the Camino, it calls people from all over the world, from many different backgrounds and dumps them together unceremoniously on a path in the middle of the Spanish countryside – you never know who or what you will find.

We clocked up 19km, quite a decent effort I thought, particularly considering the weather, but the band were playing that night in Arca so she had a deadline.  I had nowhere better to be so tagged along thinking I could stop earlier if I needed to and found somewhere I liked the look of.  I didn’t.  We crossed paths a few times with a group of 3 (one man and two women) with their dogs – very cute and well behaved (the dogs that is), I have no idea what breed they were but they were mid-sized and looked a bit like black shelties only slightly larger.  We also saw my Southern American friend a few times and strolled (damply) into Arca with him.

I don’t know if every day is getting harder or it just feels like that but today was hard – probably because I was starting on very little sleep!  I also might be coming down with a sinus infection – oh what fun!  That and my body is still a bit of a mess what with intermittent tachycardia, the pain in my feet and who knows what going on with my blood pressure, oh and today my knees decided they had been far too well behaved and wanted some attention too.  And I had been really impressed with them up until now, actually I still am, they could be a lot worse.  I swear also that my pack is getting heavier – I know for a fact that that is impossible as it is getting smaller so I am either getting better at packing it or am leaving things behind on my way.  Still, I have walked further today than any other day so far and according to the wayside markers (but not my book) there is only 18.5km left till Santiago.  the question is; do I do it all in one day so i can stop and rest properly sooner or do I do it over 2 easier days?  Nobody can answer that for me and I guess I will just find out tomorrow.

I am not sure about going on to Finisterre now – part of me thinks I have put my body through enough for one year, the rest thinks it would be wonderful to get there under my own steam.  But if the book is to be believed (the jury is still out on that one) there is another 91km or so to Finisterre from Santiago and, to be honest, I really don’t think I can be assed, although it’s not a definite no.

After promising myself some TLC we walked into the first hotel we could find and my friend translated for me – 40 Euros for a room, yeah that’s so not going to happen…
How about I give it to you for 30?  Well that I can work with!  I obviously looked rather pitiful or they were desperate to fill rooms or something but either way I got my room.  Apparently I would love it, it was really nice.  To be honest I can’t actually tell what makes it 10 Euros more than other rooms; it is smaller, there are no extra blankets and it has a shower not a bath.  So what makes a room 10 Euros more along the Camino?  The answer is, apparently, climate control.  I would much prefer a bath!  Actually, I think when I retire I will set up a hostel along the Camino with single room options or smaller dorm rooms (maybe 8 beds) and separate dorms for snorers and early leavers.  Also baths, including a jacuzzi in each shared bathroom or just a really warm pool, a table for unpacking your pack for each bed, hooks to hang up hiking poles, bags of ice available at reception, an in-house pharmacy and nurse on call, clothes washing facilities that don’t cost as much as the room, a restaurant that opens at 5:30pm, massage chairs in the communal room and plenty of water and wine for everyone.  I like that plan, it’s a good plan.

The dog people are also staying in the hotel and I think the dogs are in the basement.  I can hear them howling up the stairwell which is acting like a sound conductor and amplifier and is right next to my room.  I can hear them as if they were next door.  Oh, the dog people are actually next door and having a very good time indeed – how do they have the energy for that after walking all day?  Um, think I might go for a walk or something, away from here – conveniently I know of a Puerto Rican band that is playing nearby.

Every step forward is a step closer

Day 4 – Palas de Rei – Melide

Writing in my journal in the morning is a new thing for me but as I am in my own room for the first time I’m not disturbing anyone by doing so and am not about to be kicked out early.
I’m not sure how far I will get today but I am aiming for at least Melide.  The crappy map/book says the way is mostly downhill but we know how it lies so I can expect some hills thrown in along the way – the first hill of the day is always the hardest and as most of the villages and towns are at the bottom of hills I am pretty sure I can expect on right away.  I originally had 2 guide books but I left the heavier one in Paris.  Unfortunately the heavier one is generally acknowledged by those in the know to be one of the better books on the market.  I wonder if the author would consider making an iPhone app of his guide because that would be completely awesome.  I haven’t mentioned it before but I love my iPhone – it is the perfect travel tool.  Before I left home I downloaded a Spanish phrasebook, a weather app for Galicia, Spanish guidebooks and similar things for both Paris and London including colour maps to the Parisian underground and London tube in addition to all the music I had on it already and the audiobooks I added at the last minute.  The best thing about all this is; no matter how much I put on it it stays the same weight and size!

I think I prefer staying at the smaller places, you meet more people.  That being said the bigger ones are more likely to have internet, pharmacies and supermarkets and maybe even a bath.  Yes, I am still obsessed with the idea of having a bath.  So I am aiming for 10-15km today,  If it’s 10km I will be staying at a smaller place, if it’s 15 I will make it to Melide which is the next large town.  Either way I will pass my half-way mark today.

I slept pretty well last night, finally, in my own room but had reflux all night which is odd – could be all the red wine I’ve been having lately.  So now my oesophagus is inflamed and I can hardly eat or drink anything – no breakfast for me I think.  I can’t believe how much they expect us to eat along here!  The Pilgrim menu consists of 2 huge meals plus dessert and I am very aware of offending people by not finishing the plates off but it is an impossible task for me!  Last night I ordered croquettes.  As I was expecting just them I stopped my tradition of not eating bread as well but when I had finished I was also given grilled chicken and chips and offered dessert – I could hardly send back the chicken after it had been cooked for me and felt ill afterwards from all the food.

I found some sock liners yesterday so will try them but I have a feeling that my feet are beyond help.  I keep telling myself that it doesn’t matter how far I get each day, it is my Camino, I will get there eventually.  I heard a wonderful saying yesterday: ‘Santiago will always be there’.  That really sums up my Camino; no matter how long it takes I will get to Santiago.  But I would really like some internet access tonight…

Early on I met a Belgian lady and ended up walking most of the day with her.  We chatted about all sorts of things and passed some beautiful scenery.  I just can’t believe how spectacular it is here.  I had heard that the walk from Sarria to Santiago is the least-nice part of the Camino de Frances and if this is true I would like to see the rest to compare!  After a while my friend and I parted ways – she had feet problems too and had to take the hills slowly.  I had to tackle them as if my life depended on it so put my head down and strode off.  I seem to only have one pace – full steam ahead!  Even if my full steam differs in speed.  I give it all or nothing, I am not the kind of hiker who can do things by halves and conserve my energy for later.  When I have it I have it and I will use it and keep going for as long as I have to.  The concept of conserving energy is quite strange to me, if you have it, why not use it?  I guess that comes from so many years of not having much of it but surely the idea is to get where you’re going?  Besides, I am slow enough as it is without consciously slowing down.  My walking slows during the course of the day to an old-lady shuffle as my feet get more and more sore.

I planned to stop for a break along the way but everything was closed.  My body was having trouble as I still had not eaten so I raided my supplies of mini choc chip cookies and orange flavoured tang – I couldn’t justify the tub of powerade.  After a short break I hobbled on to Melide and my half-way mark.  I got (understandably) very happy when I saw that 55km sign and it buoyed me up and carried me along dancing to the Jackson’s ‘blame it on the boogie’ – yes I was acting out my traditional dance moves to ‘sunshine’, ‘moonlight’, ‘good times’ and ‘boogie’ with hiking poles in my hands.  It is quite fortunate nobody was trying to pass me at the time as they probably would have received a pole in the face by way of a greeting instead of the more traditional ‘Buen Camino’
 Once you pass the 55km sign you think you’re nearly in Melide and then you hit the industrial zone which seems to go on for miles.  Then you come across a charming little town beginning with an F that has a beautiful old stone bridge with picturesque views and charming stone houses – it really is one of the most stunning of the tiny villages you go through in the last section of the Camino.

I struggled into Melide at lunch time in slightly better shape than the day before and wandered around looking for a place to stay.  I found my Belgian friend from the morning and we were headed in the direction of the Albergue when we came across a Canadian guy who was staying in a hotel.  Naturally my first question was ‘do the rooms have baths?’ – Yes!!  My next question was ‘does it have internet access?’ – Yes!!  Perfect!  So I said Buen Camino to Belgium and headed to the hotel guided by Canada.

I think you can guess what I did first!  Well, sort of.  Actually I called my mother.  As we chatted I began de-sports taping and taking off my blister dressings.  The conversation went something like this ‘Yeah, passed the halfway mark today, I’m a bit sore but still going, oh, the dressing on my big blister smells funny, oh dear’ as I pulled it off and a large blob of pus and skin came with it…
Salt bath!  Insisted Doctor Mum, so I hobbled to the supermarket for a tub of salt and soaked my feet for a long time.  Then I had a very hot bath (listening to one of my audio books) which was complete bliss, soaked my blister some more in salty water, re-did my sports tape (with my own version of Rob Zombie’s ‘more human than human’ in my head; ‘more sports tape than human’) and then went on the internet.

I think it might be Albergues for me from now on though, 30 Euros per night will really add up (even if I do have a bath!).

Anyone reading this journal would be well within the realms of reason to think: This girl is completely insane!  Walking 115km with a sprained ankle, stress crack in her foot, dodgy knees, dodgy hips, infected blisters, blood pressure that randomly decides to take a holiday and an over-enthusisatic heart that tries to make up for blood pressure’s laziness – what was she thinking?  And to that I would reply, well, yes, that would be the simple explanation.  The more complex one of course would take years of psychotherapy to determine so for now I am perfectly happy being viewed as insane although I prefer myself to think of it as being stubborn, determined, maybe slightly ridiculous but above all a dislike of being dictated to about what my body and I can and can’t do.  Oh yeah, and maybe a little crazy 😉

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