Sunday, 12 February 2012

Perceptions of ability within disability...

Today I am going to see a new GP.  Anyone who has read this blog from the beginning (I really don't think you exist) will remember my trepidation and then my joy at my first visit to Dr McLovely, whom I am missing quite a lot!  I have been here nearly a month and I MUST get some prescription renewals.  I'm dreading it. I have to take my copy of 'War and Peace' (my medical file from Dr McLovely).

I now live in a VERY small community, TLOML works at the local medical center part-time, The Nurse is there full-time, I socialize with some of the doctors and most of the nurses and admin staff...  Of course The Nurse and TLOML see me enough to see both my good days and my bad.  They know that when I go out to a social function I am sucking it up and soldiering on; they know that I often have to pay the next day for the efforts of the previous day; they know that the times of activity only happen because of the 18 - 20 hours I spend per day in bed.  Others don't.

On Saturday TLOML and I went on the ferry to the bigger city on the mainland.  Foolishly I had overdone it quite badly on Thursday and Friday and I was (and still am) in the high range with both my constant pain and my breakthrough pain.  In anticipation I took my cane.  I think it is the first time I have used the cane on the island.  Here the stupidmarkets are tiny, the parking for everything is close, TLOML is almost always there to help me balance, and basically I have been able to get by without it.  Naturally we knew people on the ferry, (TLOML knows almost everyone everywhere)and though I caught a quick glance at the said walking stick in my left hand nothing was said.  Once in the city I used it to walk off the ferry to the car, then didn't pull it out again until we were at the SUPER mall.  I have to be really honest here, there just aren't all that many things I miss about the US;  I miss drive through banking; I miss the low cost of things there; ummmm... I miss the Interstates...  But there is one thing that I miss above all, one thing that stands out from the others like a hippy at a GOP convention... I miss with passion the courtesy motorized carts that were available even at my local stupidmarket.

Using one of the courtesy scooters was a VERY hard thing to do the first time.  I remember gazing enviously at those carts for a long time before a day came when I was just SO SORE and Sam's Club was SO BIG that I simply could no longer resist.  I was never a constant user, it always depended on my pain and fatigue levels, the potential length and complexity of the shopping experience, and if I was alone or if I had someone who could manage for me if I needed to get off my feet.  Saturday I longed for one of those courtesy scooters.  At first I was leaning on the trolley but then we bought the rather heavy punching bag (a birthday gift to TLOML's sweetheart younger son) and the trolley became too heavy, so I went back to the cane and handed the trolley over to TLOML.  I couldn't take waiting in the queue at Target so I waited on the kangaroo on the kiddie coin-op carousel.  I really wish Australia would catch up with the US as regards things like courtesy scooters, I would have been so relieved to have had one then and there!

So here I am going to yet another doctor, I'm worried that the invisibility of my condition might work against me, the usual worry.  It's an old problem and one that all of us with invisible conditions experience.  In Sydney when I went to the doctor I always used my cane.  It was necessary to walk alone from the parking which was quite distant but it was also a concrete and tangible symbol of the disability that is otherwise invisible.  I was also suffering a LOT of vertigo at that time and had the balance of a two-legged stool!  Now the vertigo has eased off somewhat and the parking is right outside the door, but I do need this doctor to understand.

It seems a lot to ask of a stranger, that they can understand something that I really don't understand myself.  I don't know why I can do almost anything for a short period of time, I don't know why I can carry a punching bag off the ferry and then have to go home and lie down to recover, I don't know why sometimes I can't make myself stand up straight when I get up out of bed, I don't know why sometimes I fall over for no real reason when I am trying so hard not to fall, I don't know why the urge to be horizontal is like an addiction or a craving, I just don't know...  Most days I can suck it up for a couple of hours and go out to a social event and only the most observant of people would ever know I was in pain - some days that would be impossible.

So do I walk in to the doctors office with my walking stick in hand and say hello to the receptionist who I last saw when we shared a bottle of bubbles at a fabulous pool party?


  1. Great posting, dear Displaced.

    I think you take the stick just as a visual reinforcer. Never hurts, no matter what the receptionist may think. It may open up the conversation with the doc and help you to stand your ground to explain this completely bizarre situation.

    I feel your pain in seeing a new doc. I worry and fret too when I have to see a new one, and even do when I go to my pain doc (since he's all over the map in whether he gets it or not).

    Fibromyalgia is, in my estimation, the worst kind of invisible illness. Mostly due to the fluctuating and completely illogical nature of what can go on from day to day and even hour to hour. Makes no sense to me and I have had it for almost 20 years now. If I don't get it and can't make sense of it (while being intimately aware of what it is doing to me) how do I help others to get it?

    So I made a little summary list. In visual boxes for the main body parts affected: arms/upper back/neck, legs, head (cognitive, vertigo, migraines), etc. Seems to make it easier to interpret and helps me to stay on track with my lengthy history.

    I will be crossing my fingers, toes, and eyes for you and hoping that this new doc will be understanding, kind, and helpful. Because you deserve to have the right kind of support when and where you need it.

  2. Hoping this new doctor "gets it" and will listen and understand your limitations. As for your readers....we do exist!

  3. I hope your visit to the new doc went well and you were met with understanding - after Dr McLovely I suspect any doc won't measure up :-). There are advantages and disadvantages of a small society. On one hand your business is everyone else's! But on the other hand people are getting to know you there, and the friends you are making including The Nurse know what you go through before and after big social occasions. So what you say to the receptionist is, 'It's one of my good days today, but standing around at that party knocked me for six for two days."

    There are SOME shopping centres in Oz with courtesy scooters, or scooters for use at minimal rates. Our local one has a scooter or two for anyone who needs it. Anyone who wants it has to enquire at the pharmacy. Weird that a big shopping centre on The Big Island didn't have one.

  4. Jazz, Mo and Carinthia - thank you for all of your comments and for your support! I have waffled on again with an update... The new doc was nice... I think in a friendly way I might end up calling him Dr McDaggy... (sorry non-aussies I will have to explain daggy - kind of goofy, kind of nerdy, kind of uncool but also endearing -- I hope that helps!)