Friday, 12 December 2014

Alas! Poor Memory.

Brain fog has attacked again!

Sometimes, my cognitive dysfunction has no real consequences.  I hallucinate that the doorbell's rung.  I open the door and no-one's there.  It doesn't matter.

Sometimes it's a bit more serious.  Not all that long ago, on a Sunday morning, I found I just didn't have sufficient energy to drive to Brisbane for that Sunday's church service.  I figured that it would be all right, there's no great consequence to missing just one church service, after all.  What I had forgotten (and forgotten so completely that I hadn't done any preparation at all that week), was that I was rostered to lead worship that day.  When the congregation gathers at church, and there's no-one standing up the front, people notice. I'd had several worried texts from people asking if I was all right, and I'd just been saying, "I'm fine, just fatigued," before it finally clicked!  It's the nature of the church that I'm part of that no-one thought to tell me off for letting them down, just to all be concerned about my welfare.

For me, that was devastating. Ministry isn't just "the job I had to retire from", it's who I am. That little bit I can still do in retirement is precious. I felt I didn't just let down a congregation of people I love dearly, but I'd also let down God. I understand that neither God nor the congregation is mad at me for the failure. They understand that with my limits, this stuff will happen. But I'm mad at me, on their behalf.

Sometimes, it's not only serious, it's quite ironic.

For more than two years, I've been on a waiting list to see the Neurology Clinic at Royal Brisbane and Women's Hospital.  I've been desperate for that appointment, hoping against hope that my memory problems, my fuzzy thinking, my hallucinations, can all be cured.

I finally got that precious appointment.  I forgot to go.  Really, I forgot to go to the appointment I was desperate to go to for help for my memory.

I went crying to my GP, who told me to call them and ask for a second chance.  I called. I do get a second chance. Some time in the New Year, I will be given a new appointment.  That's my last chance.  If I don't make that appointment, I will have to go back to the bottom of the waiting list.

When I get the new appointment, all of my family members are going to put my appointment in their diaries, so I'm not the only one to try to remember it. I'll get to it.  I hope. As long as I remember how to get there.

Monday, 8 December 2014

Why Face The Struggle?

Sometimes with lupus, or with any chronic illness for that matter, the struggle of just living daily life gets hard.

We all need to find things in our lives that make facing up to the struggle against our illnesses worth while.

For me, the big thing that makes it all worth while is my family.  When I was first diagnosed, and I read about just how bad lupus could get, I promised myself I would do everything within my power to keep as well as possible until my children reached adulthood.  Of course, once they reached adulthood, I suddenly found myself with a grandchild. Spending time with my granddaughter makes any day worth while, no matter how sick I am, no matter what else is happening. (My adult "children" are still very important to me as well, of course.)

Creative expression is another thing that makes it all worth while.  Even though lupus is affecting my mind lately, I still get to enjoy writing, and baking, and  I'm slowly working on getting my sewing and arts and crafts space useable.

Feeling that I'm doing something of use for someone else is also very important to me.  My biggest fear is of becoming "useless".

Another thing I've discovered recently, is gardening.  I'm not very good at it, and a lot of plants die, but I'm learning as I go.  I'm in the process of getting a rainwater tank, so I can actually have enough water for my garden. (There's issues with that, the tanks are halfway installed and now a neighbour says they're infringing on her land - the boundary is very unclear.)  All of life has its frustrations, even, sometimes, the things that make getting up and facing the day the illness worthwhile.

Everyone who has a chronic illness has times when they just wonder why they bother taking all the medications, getting out of bed, and trying to just get through the day.  And we all have to find those things that are so important we will get up and fight for them.

Thursday, 4 December 2014

Let's Dance

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You have some rashes here,
you have some rashes there,
you disguise them all with make-up.
and you hide from the sunlight!

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You have pain in your hands,
you have pain in your feet,
you have sore joints all over,
and cry your self to sleep.

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You take your pills today,
you take your pills tonight,
you take your pills tomorrow and then,
you take more  pills again.

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You feel fatigued at home,
you feel fatigued when out,
you feel fatigued when you wake up,
and you could sleep anywhere.

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You have a blood test here,
you have a blood test there,
and now they want some wee as well,
there's fluids everywhere!

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You forget where you left keys,
you forget to....
you......
what am I doing here?

Tuesday, 2 December 2014

Side Effects

I went to the doctor today with my shopping list of prescriptions I need renewed.  I found myself thinking that what's wrong my my medications is that I have the ones with the wrong side effects.

I have drugs that come with side-effect warnings like:

  • avoid sun exposure while taking this medication
  • don't eat grapefruit or take vitamin C supplements while taking this medication
  • this medication can increase weight
  • this medication will deplete vitamin D in your body, but you can't go out in the sun because you're taking another medication that will interact badly with sunlight, besides which you have lupus and can't go out in sunlight anyway
  • this medication will deplete your folate so your body can't absorb iron. Take folate supplements
  • this medication will give you nausea
  • this medication may cause kidney failure - but you have lupus and that could cause kidney failure anyway, so what are you worried about?
  • this medication will raise your blood pressure
  • this medication will increase your fatigue, but you've got lupus, you're used to fatigue
  • this medication will make you retain so much fluid it gives you headaches, and make your feet too swollen to walk on

The drugs I really want are ones that come with side-effect warnings like this:
  • this medication will improve memory, concentration and problem solving
  • this medication will make you maintain your perfect healthy weight
  • this medication will give you perfect skin and hair and generally make you more attractive
  • this medication will help you sleep well at night, but keep you bright and alert at daytime when you actually want to be awake
  • this medication will improve your vision, your hearing, and your balance

My big problem is that either the drugs I want haven't been invented yet, or they haven't been approved on the PBS.

Monday, 1 December 2014

Maximum Energy

One thing most lupies have in common (and nothing is exactly the same for all of us) is that we have a very limited amount of energy to use in the day.  We have to budget it carefully, and set priorities as to what we will use our precious little bit of energy on.

My daughter observed the other day, that I always seem to have energy for my granddaughter, more than I have for anything else. It's like she's medicine for me.

It's not that I actually have extra energy, just that I am willing to use whatever energy I have with her.  If she needs me, or if she'd like a story read, or to play, I'm always up for grandma duty. Even if I have no energy for anything else all day, I won't miss the chance to spend time with her.

I asked other lupies on the Sometimes, it is Lupus Facebook page whether they also had something that they always found energy for, no matter what.

It turns out I'm not the only one who would use every last bit of energy on someone they loved.  Grandmas said their grandchildren would always get their energy.  Mums said their children would always get their energy.  Other lupies said their partners. Some said they'd always find energy for their friends, while some reported they no longer had friends because they just couldn't find the energy.

Some, of course, said their jobs or housework, because those things were necessary.

Lots of times, lupies find ourselves with no energy left. We push ourselves just that bit beyond our limits - put some energy on the credit card.  Eventually, it catches up.  But some things are too important to miss, even if they mean we will be sick for a while.

Related post: The Energy Budget

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-slip 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.