Wednesday, 26 November 2014

What Does Sick Look Like?

Lots of people will say, "You don't look sick" or "You look well", to lupies.

Most of the time, they're trying to be nice, and I accept it as a compliment of sorts.

I know, however, that many lupies get sick of being expected to either "look sick" or "act well".  There's some sort of belief that only people who look sick really are.

I actually go to a lot of effort with make-up to try to not look sick.  When the make-up's off, people who know me can tell when my lupus is flaring, or when I've done too much.

I get a light pink "butterfly" rash on my face.  It's not really severe, and you'd have to know me to notice it.  Some lupies have strong red rashes, and some even hurt.  Of course there's also some lupies who never get a rash, or any other visible sign of what's going on in their bodies.

Lupus is different for everyone who has it.

You can't judge a book by its cover, or a lupie by her (or his) appearance.

If someone you know has lupus, and they say they can't manage something, they probably can't. Even if they look perfectly healthy, they'll have limitations on how much energy they have and what they can achieve with it.


Related post: Ask An Expert: Concealing Lupus Rashes

Tuesday, 25 November 2014

Feeling Old

Knowing my limits, and sticking to my limits, have always been challenging for me.

On days when I'm feeling good, I want to just go ahead and do as much as I feel I can - even though, over the following days, that usually proves to be a bad idea.

Worse than that, I am starting to feel like I'm getting really old, as I do less and less that I used to do.

I don't think it's a matter of actual age.  I didn't feel old when my kids became old enough to vote.  I didn't feel old when I became a grandparent.

But now, my son has just assembled my Christmas present for my granddaughter - something I would have managed for myself not all that many years ago.  My daughter has announced she's doing the family Christmas lunch, which I did last year (and every year before since I was, well, my daughter's current age.)

I know that they're actually caring for me.  But suddenly, I feel like I'm very, very old. I also feel guilty when I sit by and watch other people do things I used to happily do.

Every generation has to go through handing the baton on to the next - seeing our children take over the things we used to do.  And I'm proud of them being willing and able to just take over. But I also feel old, useless, and rather guilty, that when they're taking on these tasks, I haven't picked up something else to do. Instead, I'm just lying on the couch and letting everyone else do the work.

That's where I suspect the experience would have been different, had I still been healthy.  I would have found other, still useful, things to do. Instead, I'm on a prolonged holiday while everyone else is working.



Friday, 31 October 2014

What was I going to say?

It's Friday.

It was kind of a surprise to discover that this evening, because I personally have been having a Saturday.  It's not that I chose to have a Saturday on Friday, just that I honestly believed it was Saturday.

I've been having issues with cognitive function for a long time now.

I would tell you how long, but I really don't remember.

I'm on a waiting list for the Neurology Clinic at the Royal Brisbane and Women's Hospital, but I've been on the waiting list for years. The latest letter from them tells me I'm still on the waiting list. There's no indication of how much longer I'll need to wait.

In the meantime, my GP has come up with an idea to deal with some of the symptoms of my cognitive issues, even if we can't do anything about the cause.  She's sent me to a psychologist to help me with memory and the fuzzy thinking/confusion I get sometimes.  She's also sending me to an occupational therapist to look at the clumsiness that seems to go with the confusion.

So far I've had my introductory meeting with the psychologist. It was just for him to gather information about the problem. He's thinking about strategies for me for our next meeting on Monday. Hopefully, he and I will both be having a Monday at the same time.

I haven't seen the occupational therapist yet.  I think I may have forgotten to make the appointment, or maybe I did make the appointment and forget to go.  If anyone knows where I left the information the doctor gave me about the occupational therapist, please call me and tell me.

So, hopefully, between the psychologist and the occupational therapist, I may have some very good strategies for managing my brain fog soon.  I'll let you know how it all goes. If I remember.

Friday, 24 October 2014

Oops

We've had to put one of those non-stick mats in the bath.

You see someone, I won't mention who, slipped over getting into the shower the other night.

I could blame lupus for this - brain fog, poor co-ordination, you know all that stuff goes together.

But that's not the truth.

You see the truth is that there's a scientific anomaly in my  bathroom.  Gravity is significantly stronger just in my bathtub.

The CSIRO would have been in to investigate, but they had their funding cut in the last Federal budget.

So, as we've no anti-gravitational devices to counter the extra strength of gravity in just that spot, we've put in a non-stick mat so as to make it harder to slip over.

In fact, when we brought the mat home, my son put it in the bath tub, and then jumped up and down on it to ensure the suction cups on the bottom were holding it securely in place.

Changing Gear

Fairly soon after I was diagnosed, I upgraded my little manual car to an automatic with power
Driving my little mobility scooter
(with help from my small "co-pilot").
steering.

I loved my little Ford Focus, and took very good care of it.  Buying it brand new, I'd planned to stay with this one car for a very long time.  It was easier to drive than my previous car, the steering was light, I could handle it even on days when all my joints hurt.

I failed to take one thing into account in choosing it.  A Focus is a fairly small car.  That was fine to start with.  Once I needed to start carrying extra things to help me with mobility, the car didn't have quite enough space.  First, it was the wheelchair. Then, to be a bit more independent, I got a groovy little red mobility scooter.  Now, I don't need someone to push me around.

The scooter breaks down into small enough parts to put into the boot of a Focus, but then I needed to have someone with me wherever I went, to get all the pieces out of the car and assemble it, and to break it down and put it back in the car again later. The boot of the car was then full, with no room left to put the groceries, or anything else I might have wanted to carry.

So this week, I did the unthinkable.  I traded in my little car that had less than 60,000km on the odometer, for a very well used Nisan XTrail four wheel drive.

The "new" car - with experience.
It's close to the same age as the Focus was, in years, but has more than 200,000 on the odometer.  So I guess it's a car with experience.  Second-hand was the only way I was going to afford a 4WD.

The benefit is, that my scooter doesn't have to be broken into as many parts - so is easier to set up and put away.

Add to that, my son has promised me an early Christmas present - he has it on order to pick up next week - a folding ramp to make getting the scooter in and out of the vehicle simple and light enough that anyone, hopefully even me, could do it.

Of course, there's also heaps of room in the back for me to get shopping and whatever else I need and carry it home, too.

I was a bit sad about changing cars. You might have guessed.  I was also a bit concerned.  I drove 4WDs when I was younger, but haven't done so for years.  I remember them being heavy to handle, but I was much stronger back then. Fortunately, that has changed dramatically.  This is automatic, has power steering, and in two wheel drive mode, is no harder to handle than the smaller car was.  I also remember 4WDs requiring a great deal of effort to climb into. This one's not all that much higher than a regular car, and I can step into it, rather than climb.

Thursday, 9 October 2014

Review: The Lupus Encyclopaedia

Everyone who has lupus should have at least one good basic information book about lupus.
The Lupus Encyclopaedia
by Dr Donald E Thomas, Jr.

The one I bought when I was first diagnosed was read cover to cover, front to back, back to front, topic by topic, until the print was almost worn off the pages. That book's a bit dated now, but I still wouldn't ever throw it out.  It's what told me that what was happening to me had an explanation, that I wasn't the only person in the world to go through this, and there was hope of getting things under control.

Earlier this year, I was sent a review copy of a book that I think is going to fulfill that same role for lots of newly-diagnosed lupies for a number of years to come.  It's a good reference for those of us who've been diagnosed for a while as well. It's The Lupus Encyclopaedia, by Dr Donald E Thomas, Jr.

I've been a bit slow to get around to reviewing it for a number of reasons, not the least of which is that I've been struggling with brain fog, and was afraid it was too complex to handle.

It's a huge book.  If you're brain fogged, like me, you may think it's going to be overwhelming.

Good news.  You don't have to have the concentration to read it cover to cover. You don't have to be an expert on the terminology rheumatologists will use, even though it's written by a rheumatologist.

Once I had the courage to open the cover, I found it was not only nowhere near as intimidating as I thought, but actually incredibly accessible and useable.

The book is helpfully broken into chapters, which you can read as you have a particular need or interest (ie, when a crisis comes, and you want to know what this latest test result means, or what this latest term the doctor is using actually means in the real world.) Each chapter can be read on its own - without needing to have read the chapters that precede it.

It also has an incredibly useable index at the back. (And you know not all books, even the ones that might otherwise be useful, do.)

Dr Thomas does use the medical terminology - but he explains it in everyday language. He manages to do that without "talking down" to his reader, which is a plus. I, for one, struggle enough in brain foggy times without feeling that authors might think I'm dumb.

If a doctor uses a term I don't know, I can make a note of it, and then find it in the index of the book, which will take me to a simple, understandable, explanation.

The information is reliable, and up-to-date.  It relies on current research, and Dr Thomas' own and his colleagues' experiences dealing with real-life lupus patients.

I know I'm going to get a lot of use out of my copy.  I suspect other lupies will get lots of use out of theirs'.


THOMAS, Donald E, Jr. The Lupus Encyclopaedia: A Comprehensive Guide for Patients and Families. Baltimore: Johns Hopkins University Press, 2014.


Saturday, 27 September 2014

Wego Health Fourth Annual Health Activist Awards

Wego Health has announced their fourth annual Health Activist Awards.

If you have a favourite health activist - a blogger, a tweeter, a Google plusser, a Facebooker, anyone who informs, or entertains with regard to your health issues, nominate them now.

The categories this year are:

  • Advocating for another
  • Best in show blog
  • Best in show community/forum
  • Best in show Facebook
  • Best in show Google +
  • Best in show Instagram
  • Best in show Twitter
  • Best in show YouTube
  • Best kept secret
  • Best team performance
  • Health activist hero
  • Hilarious health activist
  • Lifetime achievement
  • Rookie of the year. 


Many of you lovely lupies go to multiple sources for information, support, understanding, finding someone who just "gets it".  Here's your chance to nominate the best of them.  

(If you nominate someone I might not have heard of, please add a link in the comments on this post, so I, and other readers, can find out about them too.)

Monday, 15 September 2014

Oops!

I had my soft drink all over the table, the chair, the floor, and myself.

My son asked what on earth I was trying to do.

"I was just putting the cup down on the table," I said.

So what happened?

Well, I think what happened was that the cup leaped out of my hand, did a quadruple somersault with a fancy twist at the end, and pirouetted to a stop, upright but empty, on the table. In the process, it managed to disgorge its contents, which clearly increased in volume from 300ml to 3 litres while flying through the air in all directions.

Why did this happen? Because I have lupus.

Cups, like many other inanimate objects, have an intense dislike of anyone with lupus.

A non-lupie can put a cup on the table, and the cup will simply sit quietly and compliantly where it was placed. It will feel no need to engage in any feats of acrobatics.

However, when a lupie puts a cup on the table, the cup and the table both conspire to do whatever they can to make the lupie's life miserable.

This terrible behaviour is not limited to cups and tables. No. Almost all inanimate objects have a grudge against people with lupus.

Bottle lids will refuse to come off for us.  (Pill bottles are the absolute worst.  No pill bottle ever opened easily for a lupie.)

Doorways, on seeing a lupie approach, will suddenly move 30cm to the left, or the right, whatever they think is the opposite of what the lupie is expecting.  I have lost track of the number of times I have walked into walls or doorjambs because the doorway has suddenly jumped aside as I was about to go through it.

Even the ground is unstable for us.

The other day I went to put some new herb plants in the garden. I put on my gum boots and gardening gloves.  I should have invested in heavy duty overalls. Some very localised earthquakes (which affected no-one in the world but me) caused me to fall into the garden bed three times.  I was covered in dirt everywhere except my hands and feet. (Those gardening gloves and boots were a good investment.) And I had a whole new set of bumps and bruises.

I can't tell you what it is about lupies that inanimate objects find so objectionable that they must attack us at all times. I wish I knew, because then perhaps there would be a way to find grounds for a truce. What I can tell you is there are a lot of inanimate objects in the world - which makes the world a very dangerous place for people like me.

Monday, 1 September 2014

Wheelchairs Don't Bounce

My "new" chair.
Well, I did only go overseas for two weeks. It's a while since I got back.

I needed a bit of recovery time, and then there were some family and health crises (not all the health crises were mine for once.)

So, as an intrepid lupie world traveler, I've had quite an adventure, and I don't know where to begin telling you the stories of what happened.

I guess I'll start with the discovery that wheelchairs don't bounce.

You wonder why I tried to find that out?  Well, actually it wasn't me who did the experiment. But I did provide a brand new wheelchair for it.

I'd bought a wheelchair with the trip in mind. The theory was that if I was pushed around in a chair instead of walking (limping) I would have the energy to do more. This actually worked out quite well, despite the hiccup.

My family pushed me through Brisbane International Airport in my own chair.  At the door of the plane, my chair was taken away.  In the stop-over airports I was transported by airport staff in the airport's own wheelchairs to my connecting flights. (This, in itself, is a great reason to take a wheelchair on a flight. It meant my family had a guide to show us where we were going getting from one gate to another.)

At Manchester, the final stop, the airport wheelchair was awful. The airport staff didn't push this one, but gave it to my son to take me, saying that it would be a while before someone was available and we'd be faster on our own.  The wheels of the chair seemed to have come from the same factory that produces those shopping trolley wheels that go in four different directions at the same time.

My son struggled and I got frustrated, and we were both incredibly glad to pick up my chair from the baggage collection point.

My chair was so good in comparison to the airport one that we didn't even notice that it wasn't behaving as well as normal.

We passed a sign that said, "Check your luggage, no complaints accepted after this point." We'd been travelling for 24 hours straight. We had all our bags. Nothing was obviously wrong. We left the airport.

The next day, the family went for a walk through the streets of Frodsham to the local park.

Family members took turns pushing my chair, and complaining about the rough footpaths, especially the sections that were cobblestones. (Cobblestones may be very pretty, but they're not good for wheelchairs.)

It got worse a it went on, and then we discovered that one of the front wheels wasn't straight. It was bent under part way.  We were all muttering about just how horrible British footpaths were.

Eventually the front wheel collapsed all the way, and I had to walk back to my sister's house.

My sister asked around and found that a place called Motability would be able to fix my chair. We went in to the place suggested, and handed my wheelchair over to be examined.

While waiting we watched a video about the business - which employed people with disabilities to restore and repair mobility equipment for other people with disabilities.

The diagnosis for the chair: it wasn't damaged by the street. It had received a hard knock, probably from being dropped from a height.  The repair people strongly suggested airline baggage handlers had something to do with it. The frame was so badly damaged, it couldn't be repaired.

I bought a red reconditioned chair from them for 50 pounds, which meant we were free to continue the holiday.

And having a chair for trips to all the amazing places we went really was worth it.

So, dear lupies, if you're planning an overseas holiday, taking a wheelchair is a great idea. Just don't buy an expensive new chair to take with you. Get the cheapest one you can buy, second-hand is fine.

Tuesday, 8 July 2014

What Do I Need To Take?

The day after tomorrow, I leave for my trip to England to visit my sister.

I've done a fair bit of preparation ahead of time. One of the big things was going over to having my medications pre-packed by the pharmacy.

I also had my doctor write a letter for me to explain all of my drugs.  She's also given me sleeping pills, so that I will definitely sleep enough on the plane, and get sufficient rest while overseas so that I shouldn't get sick from being tired.

I've been back and forward to the shops over and over again.  I've got all my medication together with my letter from the doctor in a snap-lock plastic bag.  I've got all the liquid products I need to carry in bottles of less than 100ml, and all together in another snap-lock plastic bag.

I've weighed and measured my suitcase and carry-on bag.  I've been to the bank to get some English pounds. I've checked with my phone company about "global roaming", and decided just to buy a English sim card at the airport. (So, friends and family, my usual phone number won't work... but my email and Facebook and stuff should all be OK.)

Everything I can think of that needs to be done, I've done.

But as I'm packing, I'm struggling to make the final decisions: do I need to take my laptop, or can I live without it? I decided I would take it. Then I decided I didn't need it. Now I'm trying to remember why I'd earlier decided I would take it, just in case that was important.

Do I need my wheelchair?  I can get around without it. But everyone else has to slow down or wait for me. Is it more convenient if I take the chair and someone can push me, so I keep up with everyone else? Is it more convenient for them all to wait for me to hobble along, and not have to push me? With someone pushing me I can last longer at doing things before I need a rest. Will that make a difference for doing "touristy" things? As with the laptop, I've decided I need it and then decided I don't need it, then wondered if I do need it.

Should I take my tens machine? At least I'll take it out of the big case, and put it in my hand luggage.

At 9.15am on Thursday, the airport transport comes to pick us all up. Whatever the most recent decision is at that time is what I guess I'm doing.