Nov 25, 2011

Get in on the Celebration!

It's that time of year again!

Americans are killing turkeys in celebration of ... killing indigenous people, and we are all about to celebrate the birth of a man who got killed for his religious beliefs.

An upcoming celebration that is less about killing though, is International Day of People with a Disability, which will be taking place on Dec 3.

 This is a day to focus on inclusion, equality, positive thinking in the face of adversity, and all the amazing benefits which come from living in a diverse society.

If you are the owner of a business that is open to the public, this is the time to look at your shop front and ask: "Could I increase my sales by installing a ramp?"  (The answer, by the way, is probably 'yes.')

If you are an Australian citizen, it might be the time to show your support by going to the NDIS website and signing the petition.  The NDIS campaign has been the main focus of pretty much everyone in the Australian disability sector in 2011, and  has the potential to improve the lives of hundreds of thousands of people, currently living in extraordinarily difficult conditions (including many with CFS).

It may also be a good day to check out what is going on in your local community.  If it is anything like Melbourne, chances are there will be public wheelchair basketball games, launch events with free booze, awards ceremonies and diverse fashion shows to check out!

But what does IDPwD mean for people with CFS in particular?  Most of us won't be taking part in the basketball, that's for certain, but I'd say it is definitely a good day to be raising some awareness;  wear a ribbon or T-Shirt; write a blog or make a youtube video; or put a link to your local CFS support society up on facebook.

But, more importantly, I suppose, people with CFS can make this a day to really identify with the wider disability community.

I'll admit that for the first three years that I had CFS, I did not really consider myself to be a person with a disability.  In my mind, people with disabilities were the ones with the much more clearly defined, visible, conditions.  They were the ones in wheelchairs or the ones with guide dogs.  They were the ones who had to fight for access in buildings without lifts, learn sign language or read braille.  They were a them, not an us.  And in many ways I felt excluded by them (an irrational feeling, looking back, but I can't deny it was there).  I had a vague idea that as a person who couldn't walk very far, concentrate for very long or work enough to make a living, I should be included in this group, but always felt that as a person with an invisible chronic illness, I was somehow disqualified.  (A feeling underlined in heavy black texta by the dismissive attitudes of the first few doctors I went to see when I first got sick.)

Then I started working at Grit Media.

I will tell you now, that when a group of people with disabilities, all kinds of disabilities, start working together, you get one of the most accepting groups of people on this planet.  Working at Grit has been an incredible experience for me, opening my world up to a whole new range of experiences and world views, and I know that many other people working there feel the same way.

When you throw your lot in with such a diverse group of people, with such a diverse range of needs, you work out very quickly how best to support each other, and how to accept support without feeling like a burden.

No Limits Cast and Crew promoting the NDIS
You begin to, automatically, look for venues with good access, paying attention to details like low counters and space between tables; grab menus and read aloud for people with low vision without being asked; make things logical for aspies; hold your arm out when the guy with CP gets to the curb; help the girl with SMA back into her jacket; chop up the steak for anyone with limited motor skills; and develop a working relationship with the blind guy's dog.

You do it all without really thinking about it, and in turn, you start to be watched for signs of fatigue or pain (apparently pallor is a warning sign) by the people around you.  People start helping you out with word retrieval by making it a guessing game; waiting patiently if you have to sit or lie down for a bit without making a big deal of it; doing the heavy lifting without expecting you to help; keeping perfumes and chemicals minimal; and adjusting the menu to suit your diet without whinging about it.

When you are hanging out with people with disabilities, everyone has something and everyone has experienced discrimination in some form.  We can't all relate directly to the problems facing the others, but we are all very aware of how much difference an open attitude makes.

I also find the Grit Media volunteers to be incredibly fun.  Extreme circumstances make for extreme personalities, and while it does occasionally feel like an insane asylum (some volunteers literally have the certificates to prove insanity), it is never boring!

It's also much easier to laugh about it all with people who are not scared to acknowledge and accept.

And this is why International day of People with a Disability is important to me.

Nov 14, 2011

One Week

So, it's been a week since the first gym workout and I've now been back three times.  One light workout, one swim, one yoga.  Payback has been full on.  I've figured out that, if I go to the gym, that's pretty much all I can do that day.

But, as it's also been one week since I stopped managing an Incorporated Association, I can actually afford the recovery time.

About a month ago, my doctor, very unimpressed with my lack of attention to my health, gave me a look that would not have been out of place on a School Principal before telling me, in no uncertain terms, to Stop Working Now.  She then stabbed me in the butt with vitamin B and gave me a list of supplements as long as my arm (I swear, I am the one keeping Melbourne's health food shops in business).

It took a few weeks to wrap things up, but I've done the handover now, and though I will miss my job, the free time has been heaven.

I've actually been able to cook my own meals again, which is far better CFSwise with all the food sensitivities.  I've also been able to catch up with a few friends and family I've been fobbing off for some time, due to my need to be sleeping when not at work.

And, after only a week, I've already noticed a health benefit to the exercise I now have time to do! Lowered chemical sensitivity.  At least, I'm assuming this is due to the exercise.  Particularly on days after the light workout or swimming, I've woken up without my usual burst of tachycardia (really fast heart beat) and with lungs that actually feel like they've spent the night breathing.  It's been about two months since I've experienced this, and it's a huge relief.  I was actually beginning to fear that I would be in for another two year long health crash (I've been on the brink for a while, hence my doctor's, no nonsense, orders).

I don't think I'm out of the woods yet, but this has been a good week.  Fingers crossed it continues.

Nov 7, 2011

The Issue of Exercise

Exercise is a funny thing with ME/CFS.  Too much and you're in bed for days.  Too little and you decondition, which only adds to your problems, really.

I have two doctors with very different views on this; Anne Small, currently advising me to get as much rest as possible (she actually looked pained when I asked her about a safe way to get fit - the answer, incidentally, was 'walking'); and Chris O'Callahan, who treats CFS patients with 'Postural Orthostatic Tachycardia', which, in English, means you don't have quite enough blood, and what you do have obeys gravity more than it should, pooling in the legs rather than circulating).

Chris's advice is to get lots of exercise, but keep it as horizontal as possible ... (Did your mind go there?  Sadly, mine did).  What he means is things like swimming or bike riding, and I know a few people who've had success with that.

I also know people who've 'crashed' horribly and haven't been able to get out of bed for months after an attempt to get physically fit.

So which is the right call?

My thought right now is to try the gym.  I found out my local community centre has a massive range of equipment and classes and taylor makes your program for you.  They do swimming, yoga, pilates and water aerobics which all sound relatively CFS friendly.

I went in last week to get an assessment and program.  The girl who set it up for me, was adorably blond (despite being a brunette) and got very flustered when I said I had CFS.  She was very reluctant to let me use anything that might fall on me if I nodded off during a workout!

I kindly explained - not for the first time - that CFS is different to narcolepsy, and that I just wanted to keep the cardio minimal.  Pushups, chinups and anything involving running were out, but other than that I was open to whatever.

I had my first workout today, and honestly, my head now feels like lead.  I'm in and out of bed, but have managed to both cook a casserole and write a blog entry with the energy still available to me.

It's likely the real payback will hit me tomorrow, so I'll have a better idea of the consequences then.

Exercise is a tough one with CFS, but I'm making a commitment to get a better handle on my limits, and hopefully raise them a bit in the next 12 months.
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