I just want to put it on the record that I'm not clumsy.
It's not me.
It's all the inanimate objects around me. They have it in for me. You think I'm paranoid? No, that's just how it is with lupus. Ask any lupie, they'll tell you that inanimate objects, and sometimes even gravity, just keep attacking them.
Inanimate objects even go on suicide missions to attack me - plates leap out of the cupboard when I open it, often smashing themselves on the floor, just to get the chance to hit me on the way down there.
Walls leap out in front of me when I'm walking. I can be going through a nice open doorway when suddenly splat! I've gone face-first into a wall.
Ovens have been known to eject hot trays of food at me.
Cups of hot liquid will just leap out of my hands. This happens more on the days when my thumbs are really stiff and sore, and on the days my brain fog is bad, but it's not me, it's the cups of hot liquids.
In fact one day, at a fast food place, an entire tray of food and drinks lept out of my hands and ended up over my son. He doesn't let me carry the tray any more - not because I can't carry trays, but because trays can't be trusted. (We did discover that his new phone, advertised as waterproof, was definitely cola-proof.)
Floors stay flat for most people. For lupies, they've been known to bend and bunch up so there's always something to trip on. (In my house, that's made worse by two small animate objects with hair and four legs which also get under my feet, so I'm trying to negotiate my way between a floor that won't stay flat, and small bodies that run under my feet.)
So if you see a lupie covered with bruises, scrapes, and scald marks, don't assume we've been getting into fights. We're innocent victims. It's the inanimate objects. If they ever get organised, we're in real trouble.
For years now I've been on "temporary retirement". For some of that I've tried working part-time, but got sick when I did.
So I should have expected that call. The call that left me so shaken that even my teenaged son could see I needed a hug.
The call was from the Beneficiary Fund (the church's superannuation fund for its ministers), saying it was time to do the assessments to go from "temporary" to "permanent" retirement.
In a sense I'd known for ages it had to be coming.
In another sense, I wasn't ready for the actual call.
This means that I'm never likely to be suitable for work again. I'm officially no longer of use. I'm 47, and I know many people dream of retiring early, but they dream of doing it on their own terms, not because some stupid disease has interrupted their plans, their lives.
It makes me look at myself in another light. I've always defined myself by what I do. So what if what I do is.... nothing?
It could have been far worse. It could have happened before the blog, before the Sometimes, it is Lupus community was established on social media. It could have happened when I didn't feel I was doing anything of use for anybody. At least now I have something to do that has some value. I also have my first grand-child on the way, which means a whole new adventure for my whole family.
Practically, this is a good thing. Once I've been through my visits to the various doctors (one down, two to go), and the Beneficiary Fund's board has approved it, I will be given a one-off payment that will clear my debts and give me a little money to invest. Then my pension will continue just as it has done through my "temporary retirement". Clearing my debts will make a huge difference to my budget. (I ran up debts when I had a full-time job and sufficient income to have paid them out long before now, had things not changed.)
Emotionally, spiritually, I don't know.
Thinking back to my ordination, how important that was to me, how much it meant in terms of feeling that I was starting out on an adventure in fulfilling God's call on my life - I don't know if I'm ready to hear someone read out the story of my ministry as if it is all over and there is nothing left. (It's called a "minute of appreciation".) It won't be like the stories of people who have lived long and legendary ministries and are retiring to a well-earned rest (probably to keep doing supply work in retirement anyway). It will be a story that had a beginning, and was just starting to move to its middle and it was just suddenly stopped. Surely the story does not end here.
I am so glad of the friends and family God has given me. My kids and my friends are all very
understanding and make all kinds of allowances for my condition.
I'm also blessed with a wonderful church congregation. Even though I'm no longer able to do the part time work I had been doing with them, they still accept and love me and are happy for me to do whatever I am able.
But I hear constantly from other lupies who tell me how horribly they have been treated, because of the misconceptions people have about our condition.
So here's some of the stuff I've heard, and the truth that goes with it.
Misconception: That you can see disabilities, therefore someone who doesn't have any visible disability shouldn't park in a "disabled" parking spot.
Example: People with lupus and similar conditions (who legitimately have disabled parking permits), have been subjected to verbal (spoken and written) abuse from people who have seen them leaving their cars and decided they were "taking a disabled space from someone who really needed it.)
Truth: Lots of people with lupus, rheumatoid arthritis, and many other "invisible" illnesses do have disabled parking permits. They can only get those permits if their condition is severe enough to warrant it. (Many of us don't qualify.) Still, many of them will only use the permits on "bad days", and will park in a regular parking spot if they feel at all well enough to walk the extra distance.
Misconception: That people with illnesses like lupus, "do this to yourselves."
Example: The person who tells a lupie they've read a book that says all autoimmune diseases are self-inflicted and you can think or will yourself out of this.
Truth: Lupus is a real illness. You can think yourself out of it as much as you can think yourself out of malaria or meningitis or AIDS or breast cancer.
Misconception: It's not healthy to take all the drugs that lupus patients take.
Example: The person who tells a lupus patient. "All those drugs are dangerous. You should stop taking them, they're making you sick."
Truth: Lupies know the drugs we take are dangerous. So do our doctors (believe it or not, our doctors went to doctor school, they know drugs have side-effects.) So, with guidance from our doctors, we weigh up the risks of the drugs against the risk of untreated lupus: pain, fatigue, organ failure, slow agonising death. If one drug's side-effects really do make things even worse than the benefit we get from it, we usually go back to our doctors to look at alternatives.
Misconception: There'd be a cure if there weren't so much money in the disease.
Example: The oft-quoted statement, "the pharmaceutical industry creates patients, not cures."
Truth: The pharmaceutical industry may be working on some lupus treatments, but a lot of other independent organisations, such as universities, are also working on treatments, understanding the condition, and hopefully, one day, a cure. Lupus wasn't created by the pharmaceutical industry, but until drugs were found to treat it, it was a death sentence. Now, for most of us, it's just a life sentence. But researchers are finding ways to cure all kinds of other diseases, so there's no reason to suppose we won't eventually get a cure as well.
Misconception: "Alternative medicines" all have pure motives while "Big Pharma" is in it for the money.
Example: "You should take an alternative instead of all those drugs. The pharmaceutical companies are just out to make money from you."
Truth: A lot of the "Alternative medicine" companies are huge, and make a great deal of profit the same as the prescription medicine producers. (Take a look at mega-companies like Swisse.) All businesses want to make money. At the same time "alternative medicine" is far less well regulated and policed than "medicine". (See the video from "The Checkout" below.)
Misconception: A better immune system would fix it.
Example: "You're sick all the time, you should take something to boost your immune system."
Truth: Lupus and other autoimmune diseases are caused by an over-active immune system. My immune system is so worked up it's attacking me! And you want to help it? (And, by the way, many of the things people take to "boost their immune systems" have either not been proven to work, or been proven to definitely not do anything of use.)
Misconception: You need more sun exposure.
Example: "You should get out in the sun more. It's unhealthy to be inside all the time. You need vitamin D."
Truth: Yes, we do need vitamin D. That's why so many people with lupus take vitamin D supplements - because our doctors (I told you they've been to doctor school and know this stuff, know to check our blood tests to make sure our vitamin D levels are properly regulated.) We do it this way because sunlight, in fact any ultraviolet light, can give lupies rashes, and make us sick.
Misconception: Lifestyle changes can cure lupus.
Example: "My daughter's friend's cousin cured her lupus by giving up coffee."
Truth: I haven't tried giving up coffee - I've had to give up so much that I'm refusing to give up that one pleasure. Besides which, with my fatigue levels, if I didn't have coffee I'd never be able to get out of bed. Lupus is incurable - for now. Researchers are working towards a cure. But in the meantime, no, giving up coffee will not cure lupus. Reducing stress will not cure lupus. Losing weight will not cure lupus. Gaining weight (for those lupies who are underweight) will not cure lupus. Standing on your head in the corner for an hour a day will not cure lupus. Running a marathon will not cure lupus - but trying it is likely to cause a severe flare.)
Misconception: We make it up, or make it out to be worse than it is.
Example: "You're not really that sick, you're just trying to manipulate everyone."
Truth: OK, my ex-husband thought I was incredibly lazy, but I divorced him long before I finally got a diagnosis. Living with lupus is a nightmare. It means constant pain and constant fatigue, when it's mild. In more severe cases it causes organ damage and failure, even death. It means never knowing from day-to-day whether you will have the energy to get out of bed, never being able to make plans and being confident of keeping them. No-one would make this up. No-one chooses to live this life. The lupies I know dream of feeling "normal". We might look like we're fit and healthy - but looks can be deceiving.
One of the things I try to do to overcome brain fog is to do on-line point and click detective games.
Searching for evidence and making links between things, means having to think logically and to notice things. It's brain exercise. So here's some of the ones I've been playing lately, that I recommend to anyone else who watches detective movies and reads old Agatha Christie books:
The Scene of the Crime
Scene of the Crime The Golden Doll
Scene of the Crime Dream of Murder
Rizzoli and Isles The Masterpiece Murders
Rizzoli and Isles The Boston Butcher
Flopad
Flopad Underground
Max Strong Private Investigator
Max Strong 2
Vortex Point
Vortex Point 2
Bela Kovacs The Trail of Blood
Detective Grimoire
There's lots more. But that could give you a couple of evenings of fog clearing.
The theory of this is that the patient gets to control what information is being shared and who it is shared with. It's a way for all medical professionals, with the patient's permission, to access the same record of information about a patient's health, and treatment.
Have you ever got frustrated with doctors who didn't seem to be on the same page? This is supposed to help with that. In theory, if all they keep track of your eHealth record, they all should have an overall picture of your health.
Do you worry that if you're admitted to a hospital in an emergency, you won't be able to give the hospital vital information about your condition, your allergies, medication, treatment, etc? As long as you have your Medicare card, then a hospital should be able to get to your necessary information in an emergency.
This should be accessible to all hospitals, public or private, and medical professionals throughout the country, so if you're in another part of Australia on holiday, your eHealth record goes with you.
So what do you need to set it up?
You'll need your Medicare card.
Then go to the eHealth site and follow the instructions.
You may be prompted to set up a MyGov account. (If you are on a disability pension or other Centrelink payment you may already have one.)
MyGov links all of your federal government on-line services together, to save having to log into each one separately.
You may also be prompted to set up a Medicare Online account.
After that has all been set up, you will be able to go into your eHealth account, and add in your own information on current medications (including non-prescription over-the-counter medications, allergies, contact information, etc.)
Then, next time you see each of your doctors, talk to them about your eHealth record, about what needs to go on it, and who needs to be given access.
For more information on how the eHealth record will help manage chronic illness go to: http://www.ehealth.gov.au/internet/ehealth/publishing.nsf/Content/brochure-chronic.
The immune system is a knight in shining armour, protecting the princess from all of the dangers of the big wide world.
No disease dragons, germ goblins, viral Vikings, bacterial badguys, or other forces of mayhem and nastiness can get to the princess in her castle, while the brave knight is on guard to protect her.
He does his job swiftly and efficiently, with the minimum of damage to the palace.
This is the immune system I have:
The lupus immune system is anything but the knight on protective duty. The lupus knight has rusted armour, and is more than a little insane.
He either ignores the invaders, or over-reacts to things, and knocks down half the palace trying to get to a single germ goblin.
At times, he is so confused he mistakes the princess herself for an invader and attacks her personally.
Wherever he goes he leaves destruction in his wake.
Last night, I ate ice cream for dinner. I have a cold and my throat is incredibly sore. Ice cream seemed like a good idea. You can buy lactose free ice cream at the supermarket, but it's dearer than the regular stuff. I make mine at home. Here's my recipe.
Mix all ingredients in a saucepan.
Cook, stirring, over medium heat, until the custard thickens.
Chill custard in refrigerator until very cold.
Pour into an ice cream churn (I use ice-cream attachment of my Kenwood Chef), and churn about ten minutes until frozen.
Don't have an ice cream churn? You can try part-freezing in a shallow dish, taking out to beat, part-freezing again, beating again and then freezing.
For other flavours: leave out the cocoa, and replace with a teaspoon of vanilla extract, rosewater essence, or peppermint essence, etc. You could try adding pureed berries when the ice cream is almost frozen.
I haven't felt like eating anything for days, but yesterday afternoon Little Miss from upstairs came for a visit, and asked if we could do some baking. I was reluctant, but was eventually persuaded, and was glad of it later. We made these lovely little coconut macaroons, which are a favourite in my family, and which did tempt me to eat. I ate, and enjoyed, two of them.
These little delights are half-way between a meringue and a biscuit, a little bit crispy on the outside, and soft and sweet inside.
You'll notice they don't look at all like the "Masterchef" style macaroons which are perfectly round, and sandwiched together with some sort of cream. This is what I knew as macaroons as a child.
Coconut Macaroons
2 egg whites
1 cup desiccated coconut
2 tablespoons rice flour
2/3 cup caster sugar
Preheat oven to 180 deg C.
Line two biscuit trays with baking paper.
Beat egg whites to form stiff peaks.
Add sugar, a little at a time, beating with each addition.
Gently fold in coconut and rice flour.
Mound teaspoonfuls on the prepared trays.
Bake until lightly browned. (In my old gas oven this was 12 minutes. In my new electric oven it's about 15. Start checking after 10.)
Variation: If you use shredded coconut, you will get the same taste, but a very different texture and look.
These macaroons are very energy-dense, with lots of carbohydrate and fat as well as a little protein. They are definitely only a "sometimes" food. (In my house a double batch can disappear in an afternoon.)
Well, superheroes are strong, they meet difficult challenges, they have special skills, and they fight evil.
I've been strong. Even though I feel as though I'm too sick to eat, I ate cornflakes for breakfast, and an apple for lunch.
I've met some difficult challenges. I got out of bed, twice. I've run the carpet sweeper over the carpets and a broom over the hard floors.
I've exercised some special skills. I've swallowed two handfuls of pills so far today and have another handful later. I've squirted gooey eye moisturiser stuff into my eyes. I've cut my own hair (something people on low incomes tend to learn.)
I've fought evil. Well, OK, I know that lupus is just a disease, probably an unfortunate coincidence of genes and environment, and not able to make any moral decisions of its own - so it's not capable of actual evil. Even so, some days, just surviving seems like a battle against all the forces of evil in the world.
So that, in a nutshell, is why I'm a hero today.
How about you? Yes, you reading this. I'm not letting you get away with just reading and leaving today. Tell me, either in the comments here or on one of the Sometimes, it is Lupus social media pages: why are you a superhero today?
As regular readers know, I struggle with my weight.
I know I'm not the only lupie with this problem. Sometimes, prednisone just makes me ravenous. I can't stop eating. That's the reason for my failed attempt to wean off it. (OK, I have discovered what a wimp I am - I just can't take the pain I suffer if I take less steroid.)
Then there's other times, such as the past few days, when I can't eat. I can't tell you why it happens. I just don't know the cause. I know that some of the books I have read have said that lupus can cause anorexia. I know that some of my medications have anorexia listed as side effects. When I'm 30kg overweight that I can't say I could be considered anorexic in any way, shape, or form.
But I have times, when the thought of food revolts me, and when I force myself to eat, my stomach objects in no uncertain terms. For half the week, I've been trying to force myself to eat. I'm almost at the stage of giving in and just buying a can of Ensure powder to sustain me until I get past this stage.
It's always passed before, either in days or a week or two at the longest.
What I'd like is a half-way point. I would love to be able to eat the way healthy people eat - to have enough, and know when to stop. That's the dream.
OK, I hate lupus generally, but some things are more annoying than others. My way to deal with it is have a little rant, and try to laugh at myself. So here's some of the things I hate about lupus:
When I actually use the energy to cook a meal, and then am too nauseous to eat it.
That I have to take pills to manage the side effects of my pills.
When people compare my condition to others and tell me how much worse it could be. (I'm not saying others don't have a rotten time, just that them having a rotten time doesn't make me feel any better.)
That I can no longer rely on my memory and forget what I've just done.
That I can no longer rely on my memory and forget what I've just done.
That I can no longer rely.... oh wait....
That my afternoon nap is no longer decadent - it's essential for survival.
That a day out requires several days to recover.
That I'm no longer earning a living.
That my living expenses increased dramatically (with costs of medications, etc) when my income dropped.
That things I used to love doing are now hard work.
That even something as simple as going for a coffee with a friend has to be calculated into my "energy budget" for the day.
That my brain, which earned a postgraduate degree, is now overwhelmed at times by a shopping list.
That I have a prednisone "buffalo hump".
That my hands get tired when I read an actual paper book.
That sunlight can give me strange rashes and makes me tired.
That when I'm walking with family or friends, everyone has to slow down for me.
I'd like to share with you some of the lessons I have learned through experience.
Good idea: Take a lasix for fluid retention while it's just causing uncomfortable swelling, before it gets to the point of causing an agonising headache.
Good idea: Wire oneself into a tens machine and set it on a half hour cycle to help with pain relief.
Bad idea: doing both of those things at the same time.
Good idea: Reduce steroids so as to not be hungry all the time so it's possible to lose weight.
Bad idea: Reducing steroids when you're having a flare so bad that even the small joints in your fingers hurt.
Good idea: Trying some gentle "beginner's yoga" exercises to try to get sore joints moving a little.
Bad idea: Allowing the cat in the room so he can decide to sit on top of you while you are struggling for balance and trying in an ungainly fashion to try to emulate the person on the yoga app.
Good idea: Writing down everything you need to tell your doctor, or ask your doctor.
Bad idea: Leaving your notes at home when you go to the doctor's visit.
Good idea: Booking the first appointment of the day so the doctor won't be running behind schedule.
Bad idea: Sleeping through the alarm and missing the first appointment of the day.
Good idea: Doing some of the housework to begin to catch up.
Bad idea: Doing so much you have to sleep for two days to recover and end up further behind.
I just want to put it on the record that I'm not clumsy.
