Tuesday, 15 October 2013

Zen. A day in the life. Dysautonomia Awareness Month

Today's guest poster for Dysautonomia Awareness Month is the lovely Zen from New Zealand. You may remember Zen's name from her husband Damon's post last week. Zen is a gorgeous person with a kickarse attitude that belies her medical struggles.

I am a 32 year old woman from New Zealand - a wife, and mother to one girl. My whole life, I couldn't do certain things other people could do (running, for example...and it wasn't for lack of trying on my part). Eventually I knew something was wrong because my health declined to a pretty low point after my mid 20's. I continued to 'power through' despite multiple risky collapses walking to and from my daughter's school, and pain that would regularly leave me sobbing by the end of the day (incidentally, the pain has greatly reduced since I became more physically restricted). 

I was 28 when my system suddenly crashed, and landed me how I am now. My girl had just turned 7 at the time. I was diagnosed with overactive thyroid and then with severe POTS at first. Over a year later, I spent time on the neuro ward, and was diagnosed with generalised dysautonomia. I was told following testing and being hooked up to machines for almost a week, that my heart rate and blood pressure constantly swing around between extremes. The tilt table testing I had at the very beginning of my crash (with a continuous blood pressure monitor attached) indicated that even when lying on the flat bed propping myself up on my side with one arm, my blood pressure plummeted and my heart had to race to push it back up. This process usually happens for me within a matter of seconds, but it happens over and over (and over) again in reaction to even slight movement. It is a fallacy that POTS symptoms only ever occur when we stand.

The one word I would use to sum up my life now would be 'FRUSTRATING'. It really does merit the capital letters. I have tried many different medications, and what works for me has unfortunately only really served to curtail my worst symptoms, some of the time.

I do as much as I can on any given day. The more I do the more symptomatic I become, and it's a fine balance between making myself sick to the point of needing to lie down in much discomfort and recover, and making myself so unwell that I crash again and spend months in and out of hospital with a very unstable system (and my husband missing a fair amount of work as a result.

From the get-go it was imperative to me that I not become a 'ghost in the bedroom' so I moved out into the lounge - where I remain an integral part of the family, and the running of it. Luckily, I can block out all sorts of noise and activity unless I am particularly unwell.

Below are some photos of ways I modify activities when trying to do them how I used to do them is simply too risky/impossible at the time. I experience payback from doing virtually anything; some days having a short phone conversation means I can't swallow my dinner. Yet I keep going. I'm really quite stubborn like that - as are many of us with Dysautonomia!

Online jobs:
I do a lot of purchasing for the family (including groceries), pay all the bills, and organise activities for my husband and daughter, online. I really appreciate my ipad, which has allowed me to retain these jobs (I think my husband appreciates it too! He certainly does a lot to help me, and it is great I can still reciprocate in my own way).

Volunteer work:
It took a while, but I finally found the perfect volunteer job for me to do with help from my daughter - cutting rags for an animal rescue organisation. I used to volunteer mending books at my daughter's school library, and was actually there the day I started suffering severe vertigo when sitting - one of the first signs of what was to come.

Household jobs:
Sorting washing on the (rather stained and scuffed!) laundry floor. Note - lifting my arm/s like that will regularly lead to an immediate and complete loss of vision for approx 5 seconds (and if I am standing, a collapse) until my increased heart rate pushes my blood pressure back up. Lifting my arms above shoulder height is a very taxing action. When I am standing and have to lift my arms (more difficult than when sitting), I try to quickly grab whatever it was I wanted before bending in half and gripping onto something, or else making a 'controlled fall' to the ground, until my vision returns.

Helping my daughter with her learning:
My legs are propped up on the bed here. I spend a fair amount of time during the day at floor level because when I become too nauseous, shaky & dizzy from sitting up/moving around the house, or if my heart randomly sets off, putting my legs up eases symptoms. This is just the simplest way I have found to get them up quickly, without straining my muscles too much (they become very weak/shuddery when I am more unwell). One day I hope to get an adjustable bed and up off the floor for good!

Baking:
I bake a healthy slice for my husband & daughter to take to work/school. It's so important to me that I can do this job for them. Often I do it 'from bed'. My daughter brings me the ingredients and I measure & mix them. Any baking to be shared with others has to be made in the kitchen with me sitting/kneeling on a wheelie chair, which always leaves me very vertiginous and woozy by the end. I really do love baking, though.

If I could say something to medical professionals, it would be the following:
  • Those of us with Dysautonomia have not given up on life.
  • Dysautonomia is a highly complex medical problem, but please don't give up on our lives either.
  • Our quality of life, our relationships, and our aspirations really do matter. Many of us are relied upon by others, and we take our responsibilities seriously.
The hardest thing for me is seeing my daughter quickly grow up, and missing out on so many great experiences with her that I previously would have been a part of. I would dearly love the ability to just walk down the road beside my girl again, holding hands...instead of asking for her shoulder to steady me as I struggle to make it down the two steps and into our front garden.
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For those unfamiliar, a short explanation of Dysautonomia can be found here.

One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.

Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

4 comments:

  1. (((gentle hugs))) I read what you wrote about missing out on your daughter growing up, and had to reply... I'm missing out on my two young boys... and it's heartbreaking, even more so than missing out on my own life - (via LindaMadHatter, sorry Linda fixed the formatting and lost your comment)

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  2. I understand your pain and frustration...I also.have POTS I was diagnosed at 15 now I'm 30 and I'm a single mom of 2 my 10yr son and my 4yr daughter and I too do my baking wherever I'm able that day my son helps me alot and my daughter will come and lay with me for hours and play or read it's frustrating not to be able to get them everything they need and go to school functions...Hang in there it's a roller coaster ride with peaks and valley but just listen to your body and don't over do it or you'll be back in er where no one knows anything about POTS!

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  3. This is such an unforgiving condition, my children are adults but I so wanted to be a 'hands on' Nanna, especially as one of them is a sensitive lad who needs the cuddles and understanding only a Nanna seems to have time to give these days. Zen I think you are amazing, like Michelle you have it much worse than me, yet you don't seem to whine like I feel like doing a lot of the time. I have a lot of guilt because I am unable to get myself to places alone,( which takes up so much of my husband's time, free and working) but I guess that because I was an 'arsey' independent woman before Bob got his claws into me, and I haven't shaken it all off, well maybe a lot of the independence, which accounts for the guilt at having to ask so much of someone else. Oh gawd i'm rambling again - what I think I was trying to say Zen is that we independent ladies, inc Michelle of course, obviously have an inner core of steel, as much as the devious little Bobstard tries to get us down, ultimately he won't beat us. Wishing you a 'good' day xx Tricia

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  4. Zen, I am making big wishes for you. You are an inspiration and I am completely floored (pardon the pun) by all you manage to do ...from the floor! Kia Kaha (Rachel in NZ)

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx