In terms of my personal health, my relapses are fewer than ever and aren’t debilitating.  I don’t have to check my blood pressure everyday, and I am finally adjusted to college so I can live a pretty normal life.  Just being able to live my life recently without feeling debilitated by symptoms has been the most amazing feeling I have had since I had a stroke over 3 years ago March 11, 2007.  I’m not nearly completely recovered, but I’m happy and I finally feel like I have my life figured out.

To be honest the last thing I’ve wanted to do was blog or give personal help since I have been feeling better.  It’s like getting dragged into a past of bad memories.  I am happy, and hearing about people going through the same terrible experiences I went through on a daily basis really started to wear me down.  I became extremely conflicted and decided the best way for me to handle the situation was to run.  I dropped contact with a lot of you, and have acted like a terrible friend to people that took me in during the hardest time of my life.  I couldn’t be more sorry.  It was a child-like response to a call for responsibility.

That being said I don’t think I can never be involved with 12 More Pages in the magnitude I was before.  I want to have the college experience.  I want to have my life back, and I can’t do that while holding onto the past.  The time and effort it takes to run this organization well is unbelievably high, and I can’t keep up with it during the school year.  For these reasons I have decided to discontinue my personal blog as part of the website and postpone all future development or awareness projects.  If anyone would like to take over 12 More Pages then feel free to contact me, but for now 12 More Pages is indefinitely on hold.

I still encourage everyone to use the facebook page to share stories and experiences.  In the spirit of 12 More Pages, everyone has a story, and it deserves to be heard.  So while the blog, the news updates, awareness projects, and other developments may be indefinitely over, the stories and friends that we have made still carry on.  For this reason I encourage everyone to still use 12 More Pages to connect and discuss their experiences.

I have put countless hours into building 12 More Pages.  It’s been a privilege to watch the dysautonomia community grow, not just within 12 More Pages but around the world.  The number of support groups and information available has sky-rocketed and life will hopefully only become easier over the years for people with dysautonomia.

I’d like to conclude my involvement with 12 More Pages by writing about my 12 most valuable lessons learned from dysautonomia.  Without a doubt, now that I am feeling better so much of my past experiences have become clearer to me.  I haven’t conquered dysautonomia, I don’t understand the disorder entirely, but I have grown tremendously as a person.  I may not have the answers, but hopefully these 12 reflections will help anyone who reads them come to terms with their illness.  I can’t thank everyone enough for their help and support of 12 More Pages over the past two years.  You all have been some of the most incredible people I have ever had the pleasure to meet.  For me however, this is time to put this disorder behind me and close this chapter of my life.  Thanks again, and I hope everyone is feeling well!

-Tyler G.

I’m normally a very flexible person.  I’m pretty relaxed and it takes a lot to annoy me and put me on edge.  I’d prefer the world consist of rainbows and butterflies, but dysautonomia just seems to be begging me to create conflict.  For example dysautonomia makes me feel really sensitive to temperature.  My roommate enjoys the room at a reasonable 70 degrees, I would agree, but dysautonomia decides to be a Debbie Downer and makes me feel like 70 degrees is the Saharan desert.

The other day I was having a conversation with a cute girl.  Now I really wanted to be clever and funny, but dysautonomia was there.  I wasn’t feeling my best and had some killer brain fog.  The conversation was far from dynamic to say the least.  It was like dysautonomia was just hanging out in the room making everyone uncomfortable.

I would love to play sports.  Inter tube water polo sounds like the best invention in the history of the world.  Now what stops me from signing up with my friends.  Oh yea there’s my “best friend” dysautonomia.  He’s really clingy and decides that he doesn’t want to do that.  He is my best friend though, so I guess I have to be supportive and not participate.  I have to go do much less fun leg exercises in the gym, while my buddies have an intense cardio workout in a pool full of inter tubes.

I really wan’t to kick dysautonomia to the curb.  Tell it it’s not wanted around and live my life, but it still manages to hang around.  Sometimes it takes a lot of work to build up to that point where you can tell someone they aren’t wanted around.  I feel like I’m working up to that point and hopefully one day we can all kick that awkward “third wheel” called dysautonomia to the side and live our own lives.

-Tyler

The time of day: ok I know for most of us mornings are like diving head first into the bowels of hell.  There’s something about Bob and mornings that just doesn’t mix.  It’s the whole oil and water thing and I’m sure Bob  is one of those trans-saturated-clog your arteries kind of fats.  But the late afternoons and evenings can be just as bad.  By that time you’ve spent very available drop of energy going to work (if you still can), getting kids to and from school and after school activities, attempting household chores and generally just making it through the day.  The idea of then having to prepare a meal can feel like trying to scale Mt Everest in your Sunday Best.  Where’s my Tenzing Norga?

The thought process: now it’s time to think what can we eat?  I couldn’t count the times I’ve stood staring into the fridge trying to decide what we can eat.   It doesn’t matter that all the ingredients are there.  You still have to put together a plan.  You can’t really make a meal out of oranges and butter (though I’m sure that’s someone else’s idea of bliss).  This means you have to use what little brain reserves you have to put together something edible and hopefully nutritional. Though sometimes just edible will do.  Eat a banana if you want nutritional. And the enigma of trying to coordinate the mashed spuds to be ready at the same time as the steak.  Is it really possible? I’m beginning to think it’s an urban myth.

The standing: oh the dreaded standing.  Gravity is so not our friend.  Bob makes standing complex at the best of times but add in actually trying to undertake another task and we can have Chernobyl all over again.  If you’re lucky you get the shakes while standing at the bench and you get to play the ever delightful Russian Roulette with your fingers and the knives. The more complex the meal the more standing involved and that’s just bad.

The heat: heat. Oh heat.  You are my kryptonite.  Unless you are sticking to salads or go for the raw-marcrobiotic-vege diet thingy, you have to deal with heat when preparing the meal.  How can a beautiful golden mouth-watering roasted potato fill me with dread? Or worse yet why can standing next to the stove making rich gorgeous spaghetti bolognaise make me want to cry?  Damn you Heat! (Think dramatic Lorne Green pose right about now).

The Nausea: oh nausea my moody friend. Bob and Nausea hang out a lot together and they can make for a delightful food preparation time.  The smell of food, or some days just the thought, can make you want to vomit. It’s an undeniable mathematical certainty. Lets see if I remember the formula, it goes something like this:

Bob  + (end of day exhaustion +  standing + heat) (smell/thought of food) = nausea³.

This can make trying to prepare dinner a bit of a “pesky” chore.

Ground Hog Day: and perhaps worst of all, even if you do make it through, you know it will all happen again tomorrow, and the next day, and the next and……..  Just call me Sisyphus.  This is the reality of the horror show that is dinner.

So what can you do?  Legally you kinda have to feed the kids and the husband or you might get a visit from child services or the police.  That motherly gene always kicks in to fill us with guilt if we don’t provide for our family like Martha Stuart.  Damn you Martha and your delightfully presented  gourmet meals. I can think of a number of places I’d like to place your handcrafted personalised seating cards right about now. But I digress, here are a few of my top tips:

The Chair: invest in a chair that’ll fit in your kitchen.  Simple I know, you feel like a fool that first time, but it’s worth it.  I have prepared many a meal sitting on a chair next to the stove (and on occasion sitting on the floor).

Water: guzzle it. Chug it down, before, during and after. Stick an IV in your arm and suck it straight into your veins (well that might be a bit excessive but you get the point).  We all know the benefits of water but this is one of those times where we need to amp it up.

The re-heats: if you find that you have a day where you feel a little “better” (notice I didn’t insult anyone by saying a “good” day).  Make meals in bulk that you can freeze. Things like soup and stews are fantastic re-heated, they usually taste better the next day anyway.  They can also be jam packed with vegies so you have the nutritional thing sorted and you can use cheap meats, and lets face it anything cheap is good these days.  Even if you’re just having a normal cooking day.  Double the mixture to freeze the left-overs.  Then when “those” days come, and you know they will, you are set and Mr Microwave can do all the work whilst you lie curled up on the couch.

Meal choice: this is the one it’s taken me a long time to work out (I can be rather slow on the uptake).  You don’t need to have a fancy new meal every night.  Prior to Bob I was a bit of a foodie so this has been a hard lesson.  But if you think back to our childhoods, it was pretty much meat and three veg every night and we made it through all right (well apart from Bob, but we’ll ignore that inconvenient fact).  One pot is the way to go.  Stick everything in at once and let it take care of itself.  Stews, soups, even roasts are all meals that once the prep is done you have to do very little else. You can even buy pre-chopped vegies these days.  However, if you decided that French crepes or risotto are the way to go (and that’s your right), then I truly hope you enjoy lying on the gooey kitchen tiles discovering all the little bits of food that have hidden away under your fridge and have formed their own furry colony and are plotting to take over the world.

Get the Kids to Cook: despite what we were taught to think, kids can do things for themselves and why can’t cooking be one of those things.  Let face it if they can program an ipod or send a text to 20 people at once (how do you do that?) they can manage to make a meal despite all their protestations to the negative.  “But it tastes better when you make it Mum”, I think not, your arms aren’t painted on my dearest child.  If they are younger then maybe they can help with the prep work, the chopping or mixing.  If they are older there is no reason why they can’t follow a recipe and make diner for the family.  This also gives them a skill for when they leave home.  Do we really want them to head off into the world alone surviving on Pepsi and two-minute noodles?  It also gives them a sense of helping out when they can’t actually help you feel better.  It’s gives them back a little bit of control and this is healthy for them.  Both of my boys cook and I’ve had everything from scrambled eggs with spinach, hollandaise and smoked salmon to roasted chicken with oregano and tomatoes and homemade strawberry lassi.  Now that’s better than a restaurant, and no need to gussy myself up.

The BBQ: The epitome of maledom, the BBQ is yet another way to make dinner preparation more bearable.  Let the testosterone fly and let the males of the house light up the BBQ to cook.  Pretty much anything can be prepared on a BBQ these days.  Even if it is only the meat, it means that all that heat is kept out of the house and that is a bonus not to taken for granted.  For those men with Bob I know it can be hard to relinquish the BBQ tongs to those of us in the oestrogen camp but its worth it.  And besides you can sit in a chair with a cool glass of water and direct your wife/girlfriend/sister/daughter in the intricacies of the BBQ. We’ll even let you believe that we couldn’t have done it without you.

Takeaway: and if all else fails, that’s why God invented takeaway.  It’s ok to have takeaway.  We wont burn in hell for all eternity if we present our families with a limp, greasy, happy meal.  It doesn’t make us less of a parent or wife.  Isn’t it better to have takeaway and have Mum able to walk tomorrow, than stubbornly persisting with cooking and being laid up for three days (been there, really slow learner).   Plus these days you don’t have to just go with Maccas or KFC, many restaurants and cafe’s also have takeaway/home delivery services, so you can have a decent meal.

Now I’m not saying I have this all sorted.  As I have said I am a work in progress, but I’m getting there.  It can be hard to relinquish these sort of tasks, as much as we may have hated them pre-Bob. We’re not talking logic here.  It’s just another little piece of our old lives gone.  Another little reminder of the changes that have occurred.  But when you look at it with fresh eyes it’s just food.  Wouldn’t we say to someone else in our position that it’s not that important? Isn’t it better to be able to spend time with our families than cook a bowl of Martha’s famous Cape Cod Bouillabaisse?  If its a choice between sitting and watching my kids play sport and eating luke warm hot dogs, or sitting at home killing myself preparing a nutritionally balanced, gourmet dinner, it’s that botulin brewing hot dog every time.  The kids will remember you at their games years down the track, but wont have a clue what you cooked for dinner that Tuesday night in August 2009!

Cheers

Michelle

Relationships are hard work, just look at the ridiculously high divorce rates.  Hollywood and television have indoctrinated us to seek out the fairy tale, to find our soul mate who will make us complete, slay the dragons and hold us tight for all eternity.  Unfortunately, life isn’t like the movies (not that I still don’t wish I was Juliette Binoche in Chocolat with Johnny Depp turning up on her doorstep at the end of the movie; but hey, we’re all entitled to a bit of fantasy every now and then).  Relationships are filled with ups and down’s, even with the best of intentions and the most perfect of circumstances.  When you add a chronic illness to the mix the strain it places on a relationship can be overwhelming.  Any little problems that existed beforehand tend to be amplified by the stresses associated with a partner’s illness.

We agree to “for better or worse, in sickness and in health” but it is very different when you are actually faced with the situation.  Whether you are the person who is ill, or the significant other who is well, what we imagine we can deal with and what will occur should a partner become ill, can bear little resemblance to the reality.  Chronic illnesses like dysautonomia, can’t be contained in a nice 50min House episode.  Yes, House may give you a diagnosis and a drug, but unlike the dramatic life-saving, experimental brain surgery that saves the actor in the last 5 mins of the show, dysautonomia and it’s impact persists long after the credits role.  In fact, it can persist from Episode 1 Season 1,  all the way to Episode 48 , Season 50, often with little change.  No one makes a TV series like this for a reason.  How does the audience keep interested and maintain compassion for the character who is permanently ill.  It all becomes boring, fatigue sets in, and ratings drop.  We are programed to expect a resolution to the ‘crisis’.  Unfortunately with chronic illness the ‘crisis’ may never end and can become a permanent state of living.

Being chronically ill dramatically changes intimate relations.  Both individuals change, and the nature of roles within the relationship change.  For the person who is ill your self-image is dramatically altered.  We may see ourselves as the nurturer or provider, a leader or the go-to gal, chronic illness doesn’t care .  Hell, Cosmopolitan and the like continually tell me I can and should be able to do it all, why would I think otherwise.   When you are chronically ill you can no longer fulfil these roles as we have them laid out in our heads.  We are forced to re-examine who we really are and our place in our relationship.

It’s hard to love yourself when your body betrays you and when you cannot participate in life as you want, and feel, you should.  If your own self-image is so low how can you have anything to give to a relationship.  How can you support your partner when you are unable to support yourself.  Doubts set in.  You begin to wonder why your partner would even want you when you don’t even want yourself.  How do you maintain an intimate relationship when you are permanently exhausted.? Nausea and dizziness are hardly conducive to getting ‘in the mood’.  By that I don’t necessarily mean sex.  The general day-to-day intimacy of simply touching, hugging and kissing, the emotional and intellectual intimacy, are often difficult when you are feeling so ill you just want to lie down in a corner and cry.  These feelings begin to colour your interactions. You interpret the actions or words of your partner in light of your internal dialogue, and react similarly.  Your partner has no idea why you are acting the way you are and misunderstandings can start to build.

Equally, if you are single and want to find a partner, it is easy to wonder what you have to offer to someone else, or why anyone would want to be with you and all your chronic illness baggage?  How do you explain such a complex illness without making a prospective partner want to run for the hills?  You cannot participate in the normal dating or relationship activities.  Going to the movies, out to dinner and parties are often not an option.  You can feel that you are condemning your partner to a life of isolation.  You feel a burden.  You attribute your feelings to your partner when in fact they may never have even considered you or the relationship is that light.

For the partner who has to watch their loved one so ill, it can be over whelming and confusing.  When you love someone you want to be able to help them, you want to take away the pain.  It is common for care-givers to feel impotent, or overwhelmed by the situation.  With an acute illness, eg a knee surgery, you know there is an end.  You can sustain the care-giver role because you understand it and know that in a couple of months the person will be back to their old self.  When there is no predictability, no path, no respite, as with chronic illness, care-giver fatigue can set in.  Burnout is common in those who care long term.  It can be hard to understand this as the sick person.  I know at times I have thought, “I’m the one who’s actually sick. ‘You’ need to get over it and grow a pair”.  It’s hard to have compassion for others when you are permanently ill yourself.  Even knowing logically that it is hard for my family and friends I often don’t have the energy to deal with their issues.  When it is your partner you do have to make an effort to understand their feelings and frustrations, as this can help the relationship and you in turn.   Sometimes you need to prioritise your relationship as we do other things.

Well partners can fall into certain roles which may, or may not work.  They may become the ‘hands-on’ carer who is involved in every step.  Alternatively they may become ‘over-protective’ and wont let you do anything.  There are also those who withdraw from the relationship because they don’t know what to do or how to cope.  Many carers don’t want to admit that they can’t cope or don’t like the fact that their partner is ill.  They may feel guilty because they feel their partner is a burden or that they are no longer the person they married, and don’t want to feel that way.  Again this colours how they interact with the sick person.  In both cases, partners may feel that their feelings are wrong and that they are abnormal, when in reality they are normal reactions to an abnormal situation.

In so many cases both partners are feeling, lost, alone and frightened but don’t feel they can tell the other one for fear of burdening them.  Or they may be scared that giving voice to their fears will make them real.  If you don’t talk tensions can quickly arise and begin to fester.  A simple misunderstanding may end in a huge argument.   As a sick person I know I hate being fussed over.  If my husband were to fuss over me and always treat me like a sick person it would change my opinion of him because he wasn’t meeting my needs.  I would wonder why doesn’t he know I’d hate that.  I would be more stressed and that would make my symptoms worse and it would become a vicious circle.  However, if I don’t tell him how would he know?  It can be hard to be open and honest in a relationship at the best of times, and chronic illness is frequently uncharted stress-filled waters for both parties.

Dysautonomia is a particularly difficult disease to understand and explain.  The unpredictability of symptoms and the way it impacts on our lives is hard for even us to understand.  One important step in helping a relationship is to help educate your partner.  Encouraging them to go your appointments or asking your doctor to talk to them can be particularly helpful.   If your partner can understand that you may have to cancel a dinner at the last minute due to your symptoms, it can reduce the stress considerably.  Conversely if your partner thinks you should “just get over it” and makes you feel ‘bad’ or guilty for ruining your dinner plans, stress levels can spike and make your overall health and relationship much worse.

It is important to re-negotiate your roles in the relationship.  You need to set aside a time to talk, not wait till you are both upset and in the middle of a fight.  In many ways this is why seeking out a professional for counselling can be the best option.  No matter how much we might wish it otherwise, dysautonomia involves disability.  We can no longer do it all.  We need to sit down with our partners and work out who is going to do what.  It might be the simple things such as who makes dinner.  Or it might be the complex things like either earning a wage or organising the bills.  Before being ill I worked and took care of 90% of the kids and household chores.  Now I can’t work and my husband and kids have to help out more.  We had to re-negotiate the way things worked.  Part of that process was my husband becoming aware of how dysautonomia affected me day-to-day and understanding that I now need to strictly prioritise things.  We certainly don’t always get it right but we are slowly getting there.

It’s important for both partners to understand that a good relationship is not based on how many times you go out , how clean you home is, or if you have the latest fashions.  Without fail, good relationships have good communication and find enjoyment in each other regardless of where they are or what they are doing.  It is more important to prioritise the incidental intimacy of sitting on the couch watching TV together rather than going to a work BBQ because it is expected, and then being laid up for a week.  It doesn’t need to be complex. It can be simple things such as resting for the day, rather than doing loads of washing, so you can go out for dinner for an hour with your partner.  Or going twice a year to a Gold Class cinema with foot rests and recliners, rather than failing at a normal cinema 20 times.

Most of us who are ill realise we need to have an non-health related outlet to maintain our sanity. It is equally important for the well partner to have an outlet.  As the sick person we are more likely to be offered counselling or join a support group, this isn’t always offered to the partner.  The outlet doesn’t have to be a formal support group.  It may be participating in a sport or social group.  Often just being in an environment totally removed from home and illness can be enough.  For example, Saturday’s my husband plays sport all day and then goes to the clubhouse after for a beer and ‘man time’.  It’s his way of letting go of the stress  and rebalancing.  It helps keep him sane (and me) and in turn means he is more relaxed and switched on when he gets home.

In reality the things that you need to do to support your relationship when you have a chronic illness are the same as in any other relationship.  If either partner feels unsupported their will be issues.  If the partners don’t talk there will be issues.  If you don’t re-negotiate roles over the years there will be issues.  Having a chronic illness simply forces the issue and magnifies any existing problems.  It is not easy either starting or continuing a relationship when one partner has a chronic illness, but it is possible with work, and accepting that there will be ups and downs.  All relationships are a work in process.  Chronic illness just gives us a different challenge.

“life is a bitter disappointment
she would hear young Harley say
if you find something more important
I will not stand in your way

like static on the dial
a look come back in style
Harley and Rose
they just lost it for a while”

(“Harley & Rose”, The Black Sorrows song :1990)

We all lose it for a while, but more importantly we mostly get a chance to find it again.

Michelle

http://bobisdysautonomia.blogspot.com/

Recently my friend Dillon had his ACL replaced.  He has been wearing a full leg brace for the past two weeks and acts awfully like a person suffering from dysautonomia.  He can’t make it up stairs, he is tired after walking with crutches for short distances, he isn’t as sharp as usual (probably a combination of pain killers and tiredness), and literally acts just like a dysautonomia patient.  The difference for him is that everyone can see the leg brace and everyone can sympathize with the difficulty of dealing with crutches.

While all the metaphors for dysautonomia are great.  From an hour glass with sand seeping to the bottom to numerous others, when you really want to let someone relate to the way they are feeling, maybe use the example of a person with a leg injury on crutches.  Maybe it’ll help paint a clearer picture for people and help them understand what you are going through.  Have a great way of explaining dysautonomia?  Feel free and post!  Hope everyone is feeling well!

-Tyler

“Frankie Says Relax”

Remember the sagacious words of Frankie Goes to Hollywood in their iconic song “Relax”. OK so the connotation is not quite the same, (wow I was so innocent back then. I thought they just wanted us to sit back and smell the roses. I couldn’t understand why my mum wouldn’t let me get the record), and I am so showing my age, but I loved those t-shirts with their pithy message. Obviously after my last blog (“Serenity Now”) everyone will now be living Frankie’s dream of relaxation and have achieved their personal Nirvana. Life is bound to be filled with lolly pops, kittens and an unlimited supply of dark chocolate just when it’s at that not quite solid not quite liquid, level of gooey goodness (well the later may be my own personal idea of bliss, but you can insert your own blissful fantasy). We have all learnt to breathe our way to serenity, and that my friends, is an award worthy achievement when you live in a permanent brain fog. Now just in case any one is still having difficulty finding their bliss, here is an alternative, or addition as the case may be, you can have up your sleeve for the days when your serenity begins to slip.

Progressive Muscle Relaxation:

I like progressive muscle relaxation as it’s yet another reason to commune with my couch. I never realised they had memory foam back in the early 90s when we bought it, but that perfect mould is there to welcome me each morning. At its most basic, Progressive Muscle Relation simply involves the slow and progressive tensing and releasing of muscles. Most commonly it begins at the head and works down to the toes, but this can vary. If you have a bad back, neck etc you may want to double check with your doctor about doing some of the movements. I know it’s obvious but after the MacDonald’s Hot Coffee Litigation I just have to add, if it hurts STOP! Also peanut butter may contain peanuts, and milk may contain dairy products (I love today’s product warnings). Now you may also be concerned that you will look a little bit mad, especially doing the facial exercises, but this is the price we pay for bliss. Just remember not to hold it too long or the wind may change!

With many of us living in a brain fog which impacts upon our ability to focus and remember for more than two seconds, it can be really useful to create your own audio tapes of these scripts. Alternatively you can download a number of free versions on the web. One site that has numerous free scripts and audio versions is http://www.allaboutdepression.com/relax/ . There are many other sites which have similar information and I am not giving this site an endorsement in any way, I just like that it has a wide variety of techniques you can have a read through.

There are a few basic preparations before you try this technique.

·Remember to use your already highly professional breathing skills when practising.

·Practice in a quite place with no TV, radio, music or screaming kids.

·Take off your shoes and wear loose comfortable clothing (personally I like pj’s in bed).

·Sit in a comfortable chair. Thanks to the joys of pooling I usually sit with my feet propped up and slightly reclined.

·Sit with loose limbs. No crossed arms or legs.

·The aim is not to fall asleep, but don’t stress if you do. Let’s face it we often have insomnia despite being exhausted so I see sleep as a bonus.

·When you finish (if you are still awake) count backwards slowly from 5 to 1 then say “Eyes open. Awake. Relaxed”.

·Sit for a few minutes before rising. You don’t want to ruin all that relaxing by going arse up as soon as you stand. Whilst seated roll your ankles gently and move your legs to get the blood flowing.

·There are long and short versions of these techniques.

I like to begin with the breathing exercise I wrote about in the last blog to get me in the zone. Again preparation is everything. If the kids are screaming at each other, the dog just threw up on the carpet, the potatoes boiled over and you now have that foul burnt potato water smell in the house and your husband has just rung to let you know that he is 10 minutes away and bringing home a workmate for tea, then screaming “serenity now” at the top of your lungs may still be the best method of coping. If however, the kids are in bed, the dog has been banished to the backyard, dinner is done and your husband is on the computer geeking out, or doing his old man snoring on the couch, this may be the time to try progressive muscle relaxation. So here goes.

This quick script is from http://webspace.ship.edu/cgboer/musclerelaxation.html

Remember: Tense for a slow count of five. Release/relax for a count of 10.

1. Hands. The fists are tensed; relaxed. The fingers are extended; relaxed.

2. Biceps and triceps. The biceps are tensed (make a muscle–but shake your hands to make sure not tensing them into a fist); relaxed (drop your arm to the chair–really drop them). The triceps are tensed (try to bend your arms the wrong way); relaxed (drop them).

3. Shoulders. Pull them back (careful with this one); relax them. Push the shoulders forward (hunch); relax.

4. Neck (lateral). With the shoulders straight and relaxed, the head is turned slowly to the right, as far as you can; relax. Turn to the left; relax.

5. Neck (forward). Dig your chin into your chest; relax. (Bringing the head back is not recommended–you could break your neck).

6. Mouth. The mouth is opened as far as possible; relaxed. The lips are brought together or pursed as tightly as possible; relaxed.

7. Tongue (extended and retracted). With mouth open, extend the tongue as far as possible; relax (let it sit in the bottom of your mouth). Bring it back in your throat as far as possible; relax.

8. Tongue (roof and floor). Dig your tongue into the roof of your mouth; relax. Dig it into the bottom of your mouth; relax.

9. Eyes. Open them as wide as possible (furrow your brow); relax. Close your eyes tightly (squint); relax. Make sure you completely relax the eyes, forehead, and nose after each tensing–this is actually a toughie.

10. Breathing. Take as deep a breath as possible–and then take a little more; let it out and breathe normally for 15 seconds. Let all the breath in your lungs out–and then a little more; inhale and breathe normally for 15 seconds.

11. Back. With shoulders resting on the back of the chair, push your body forward so that your back is arched; relax. Be very careful with this one, or don’t do it at all.

12. Butt. Tense the butt tightly and raise pelvis slightly off chair; relax. Dig buttocks into chair; relax.

13. Thighs. Extend legs and raise them about 6″ off the floor or the foot rest–but don’t tense the stomach’ relax. [Or simply tense your thigh muscles] Dig your feet (heels) into the floor or foot rest; relax.

14. Stomach. Pull in the stomach as far as possible; relax completely. Push out the stomach or tense it as if you were preparing for a punch in the gut; relax.

15. Calves and feet. Point the toes (without raising the legs); relax. Point the feet up as far as possible (beware of cramps-if you get them or feel them coming on, shake them loose); relax.

16. Toes. With legs relaxed, dig your toes into the floor; relax. Bend the toes up as far as possible; relax.

So there you go. Now you have no excuse for not being completely relaxed. As the Queen of Blues, Dinah Washington says:

Stay cool, fool
Just take it easy
That’s the rule, fool (Relax Max, 1956)

Hmmm… On second thoughts that really sounds more like advice from Mr T, “Relax Fool”!

Well whether you wish to take your mantra from George Costanza, Frankie, Dinah or Mr T, we do need to find a way to relax our minds and bodies, we deserve it!

Michelle

(OK I’ll admit this one is a bit of a rambler. It’s been a rough couple of weeks thanks to Bob and his prescription posse, and my brain is still on holidays. Hopefully it’ll come back refreshed and with a great tan in the next few weeks.)

bobisdysautonomia.blogspot.com/

Michelle, you took the words right out of mouth.  This is exactly how I feel as I am trying to make it as a freshman in college with dysautonomia.  This is exactly how I felt as a high school student, but unfortunately as you grow older life becomes more complicated and you are forced to become more independent.  It’s inevitable, life goes on and things change.  We move, change jobs, get girlfriends or boyfriends, and get married.  Changes in life can be stressful for anyone, but the stress of change can be extremely tough for people with a chronic disorder such as dysautonomia.

While life may change, I find a great deal of comfort in understanding that literally everyone else with dysautonomia is going through the same ordeal.  We may not all have the same symptoms, we may not all be the same age or gender, but all of our lives are changing constantly.  We must deal with looking out for ourselves and others.  We must deal with the guilt of what we should and shouldn’t do and the activities in life we may not be able to take part in anymore.

This quote has really helped me deal with this past week.  All my friends are rushing fraternities, and by no means do I have the energy to rush on top of school.  It may really stink that the dorm may be empty at night for the next few weeks, but I find comfort in knowing that everyone out there is making compromises.  I’m not in this alone.  We may not all have the same symptoms or backgrounds, but the issues we face everyday unite us and that in itself is an extremely powerful bond.  I can’t thank Michelle enough for her wisdom and her friendship to our organization 12 More Pages.   Hope everyone is feeling well!

-Tyler

If you haven’t checked them out be sure to!  Hope everyone is feeling well, and be sure to have a great weekend!

-Tyler

However, I have managed to make it through my first semester and believe strongly that I have found solutions to help me live a more manageable life at college.  That being said, I will be doing my personal best to stay up-to-date with the website and work with the other volunteers to provide quality information on a regular basis. I really couldn’t be more proud to see how in my absence the 12 More Pages community has kept itself alive and even grown.  Just looking through the forum and wall posts there so many new faces!  I believe this truly attests to the power of community and how together we create the best content imaginable.  I really can’t thank everyone enough for their continued support of our organization, and look forward to working hard to promote dysautonomia awareness and understanding this new year!

Sincerely,

-Tyler Gurney

Stress and illness go hand in hand: stress from the physical toll on our bodies and stress from the constant attacks to our psyches. We’ve all heard the comments “why don’t you just sit down and relax”, “stop stressing”, “if you managed your anxiety better you’d feel better”. Oh thank you, Confucius. Notice how these prophets of bliss run for the hills if you question them as to how you will achieve this blessed state of Nirvana. I love that episode of Seinfeld where George continually attempts to diffuse his stress by screaming “Serenity Now”!!! I think if I screamed that at these well meaning individuals I would feel less stressed. Mostly because I would be peeing myself laughing at the look on their faces!

There is no dispute that stress impacts negatively upon our bodies, even if you are in good health. When you have Bob (Dysautonomia) or his like, the damage goes up exponentially. For example, when you get stressed your heart rate increases. If you are tachycardic, your heart is already going at marathon speed. Add stress and it’s like you have the energiser bunny on smack inside your chest, with all the collateral damage that increases in your body. So what can you do? Relaxation wont cure Bob but it will make living with him more bearable, and that’s always a good thing. There are many, many different forms of relaxation. Some simple and some complex. Before you head into the world of relaxation there are a few things you should know.

1)There is not a one size fits all solution to relaxation and you may need to try many different types to find the one that’s right for you. I have never been able to visualise my light much to the judgemental disappointment of my old yoga instructor. I always felt like I had been caught smoking behind the bike shed in her class. And I find that airy, synthesiser, new-age, whale song, music like fingernails on a chalkboard. Yet I have a girlfriend who swears by both.

2)If you want instantaneous relaxation see an anaesthetist. Just like the Panteen ad says, “It wont happen overnight, but it will happen”. There’s no point starting relaxation thinking you’ll get instantaneous results. You’ll only end up more stressed. All techniques take time to work. For some people it may take 6 weeks or more to get there.

3)Practice is part of the program. Just like riding a bike you need to practise until the technique becomes automatic and unconscious.

4)You need to practice when you’re not stressed. If you begin when you’re already stressed you are setting yourself up for failure. Practice whilst sitting on the loo, out in the garden, on the couch or lying in bed. I don’t recommend doing it whilst sitting at the traffic lights, that’s ok for your Kegels, but not for relaxation techniques which require concentration. I like to think of it this way. Would you rather learn CPR in a classroom with a smelly plastic dummy named Jean, or on the side of the road at the site of a multi-car pile up? The latter high stress situation is hardly conducive to learning.

5)If you go in expecting it wont work, guess what? It wont work. You have to be open to the process.

6)Don’t beat yourself up if it doesn’t work as quickly as you want. Every time I’ve tried a different technique I end up losing focus within 2 minutes, instead going through my shopping list and working out how I’ll get child A to football practice and child B to karate both at the same time. This often happens for weeks before I can finally get into the flow and focus on the technique.

So where to start. One of the easiest places to start is with breathing. It may sound like the punch line to a blonde joke, teaching someone to breathe, but most of us don’t actually breath well, even when relaxed. When we get stressed our breathing rate soars, it often becomes rapid and shallow, you can feel like you are suffocating and your chest can hurt. Unchecked, these stress responses feed on themselves: you feel like you are suffocating, you breath quicker, your heart rate increases, your breathing becomes shallower, and so on. By simply slowing and regulating our breathing we can calm down our physiological reactions and in turn calm our emotions. There’s nothing complex about this technique. You can do it anywhere, any time, sitting, standing or lying, and you don’t need to buy any special appliances or tools.

Breathing

1)Get comfortable.

2)Place both your hands lightly on your diaphragm. (Just below your ribs). This helps to ensure you are breathing correctly. You don’t need to do this once the technique is established.

3)Breath through your nose rather than our mouth. If this is difficult stick with your mouth.

4)Take a deep breath at the same time extend your belly, allowing your diaphragm to naturally expand and fully fill your lungs. This may feel awkward in the beginning.

5)As you breath out suck your belly in, pushing your diaphragm up and fully emptying your lungs.

6)Do this a few times until you get used to the sensation. This often feels odd when you begin but it allows for better breathing. Many of us are shallow breathers (suck our stomach and chest in as we breath in) without realising.

7)Once you feel comfortable with this, it’s time to start.

8)Take a deep slow breath in, for the count of ten. You may need to start with less, eg count of 5, until you are used to it.

9)Count in your head, 1…..2…..3…..4…..5…..6…..7……8…..9….10.

10)To get the count right initially, watch the second hand on a clock or wrist watch.

11)Then breath out slowly for a similar count of 10.

12)When you breathe out try and relax your muscles. In particular, drop you shoulders. When you tense up your shoulders can end up next to your ears.

13)Repeat this process 10 times.

If you’ve every done yoga or pilates you will have used a similar breathing technique. If you have trouble focusing on this and have access to a Wii Fit the breathing exercise at the start of yoga session are similar and you can visually follow the blue circle around the trainer.

So next time when someone tells you to “relax” or “stop stressing”, you can take a deep relaxing breath and stop yourself from throttling them.

“Serenity Now”!!!!

Michelle

bobisdysautonomia.blogspot.com/