Friday 4 October 2013

Claire: Finding your personal treatment regime. A spoonful of this and a teaspoon of that.

I've know the gorgeous Claire for a few years now and we hail from the same city and see the same cardio (small world). She's yet another talented patient, this time creating gorgeous vintage inspired accessories (love my scarf) and as you can see from the picture below embracing the vintage pin up style with aplomb (I may have a wee bit of hair envy). As most patients know, it takes time and it's often hard to find that right treatment combination that gives us the best management of our particular set of symptoms. Claire has been kind enough to share her treatment regime and tips for dealing with this often quite contrary illness.  (Please note: as always the information below is based on personal experience. We are not medical doctors and you should always discuss any medications or other therapies, with your primary treating doctor.)

Age 29, Single with 3 fur kids (2 dogs, 1 bunny), nurse in previous life – currently volunteering in event first aid and dabbling in Millinery
Became ill in 2010/2011 but ill on and off for most of my life.
Diagnosis – NCS with Tachycardia, OI, EDS, chronic sinusitis, Endometriosis, asthma


My daily medications are all set out in my dosette box (best idea ever, thanks mum!) and set to different timers and alarms so I can’t forget them or double up on doses. Here’s what I take to help manage my various health issues:

For dysautonomia - The A team, without whom I would be stuck on the couch for the rest of my life – kapow! If it’s possible to be in love with medication then these guys are the loves of my life and I once wrote an ‘Ode to Midodrine’ just so it would know how I felt. Yes I am that sad
Midodrine (vasoconstrictor)
Mestinon (lowers heart rate)
Fludrocortisone (fluid and electrolyte retainer)
For all the other stuff -
Nasonex (nasal spray to prevent sinusitis and allergies)
Yasmin (Endometriosis management)
Endep (migraine prevention, also helps me sleep but makes me hungry )
Chlorvescent (potassium supplement)
Celebrex (long-acting anti-inflammatory)
Maxalt wafers (migraine relief, best things ever!)
Seretide (asthma preventer/reliever)

I also take a range of supplements and vitamins etc to keep my body in the best working order possible – the last thing it needs is a deficiency in something or an infection, which could throw any progress out the window and set me back on the couch for months.

Salt is awesome, we love salt; it helps us retain more fluid. Sadly, due to the majority of heart issues in society revolving around high blood pressure, salt has become somewhat of a taboo additive in the last decade or so. This makes me sad and makes people look at me funny when I’m out in public piling salt on my food. But who cares what they think as long as I can stand up! And I always have a handy supply in my handbag

Compression wear:
Love it, wear it every day. I have thigh high stockings for days with abdo issues, leggings for hot days or when I want to wear sandals and pantyhose for every other day – and they come in a range of colours and grades of compression!

I see an exercise physiologist every week. Improved muscle strength means I can do more when I exercise but my ability to exercise in the first place isn’t affected by how regularly I do it (as the deconditioning theory suggests). Some days I can, some days I can’t and there doesn’t seem to be a way to predict it.

IV Fluids:
IV fluids help immensely with acute episodes. The downside is several hours and a hospital emergency admission, as there are no provisions for outpatient IV fluid therapy in Australia.

3 things I wish someone had told me when I first got sick:

Take advantage of everything on offer.
Getting a disabled permit, walking frame or wheelchair doesn’t mean you’re giving in to being sick. If anything you’re defying its hold on your life by finding ways to do things despite it!

It’s ok to be overwhelmed or down sometimes, it doesn’t necessarily mean you’re depressed.
Sometimes things can get the better of us and you know what, that’s ok because living with a chronic illness is really, really hard!

Everyone’s illness and experience of illness is different, yours is no more or less valid than someone else’s.


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.

Don't forget to check out the other awesome guest posts:
1. Claire: The ups and downs on the journey to diagnosis.
2. Amity: Art from the heart.

I couldn't resist a little classic Powder Finger (great Oz band). "Pick you up", was a huge hit here and seems rather appropriate.

1 comment:

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

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