Hope for Christmas

We're just days away from Christmas, and I've done about a quarter of what I wanted to do over about a month to prepare for Christmas.

What I would love for Christmas, is a break from lupus symptoms.  I'd love to go from Christmas Eve to Boxing Day without pain, or fatigue, or irritable bowel or reflux, or any of the other random things lupus will do for no real reason.

And I hope and pray for the same for all of the lovely lupies who have read this blog, or followed the Sometimes, it is Lupus on social media over the year. I hope you all get to enjoy Christmas, with your family, friends, or whoever you share with, and that lupus leaves you alone for a while.

Thanks for sharing the year with me.

Merry Christmas lovely lupies,

Hang in there, one day, we'll have a cure!

Love from Iris.

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.

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.

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?

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.

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