I'm Fine

When I'm having issues reaching
my feet, is a really bad time for
the kitten to learn to untie shoelaces.

"I'm fine," I said, as my son cut and filed my toenails.
"Uh huh," he replied.
"It's just that my bad hip doesn't like me to bend that far for any length of time," I explained.


"I'm fine," I said as my son put my shoes on for my walk.
"I'm fine," I said again as he took my shoes off after the walk.  "It's just that my feet are a long way away at the moment."

"I'm fine," I said as I cracked an egg and dropped it all over the stove, entirely missing the frypan.
"So I've heard," my son replied.

I've come to the conclusion that "I'm fine" means something entirely different for a person with a chronic illness than it does for a healthy person.

When I, use the term, and I suspect when other people with chronic illnesses use it, it actually means: "There's nothing happening at the moment that requires immediate medical intervention."

The Horrifying Truth

It was a freezing cold morning, and I was lying in my nice warm bed, waiting for the coffee my son had offered to bring me.

He was taking an unusually long time, and I thought back to our conversation.

As well as offering me coffee, he'd asked me to cut his hair (he hasn't had his hair cut in about 12 years) and talked about the upcoming taekwando competition (neither of us has done taekwando since before his last haircut.)

The whole conversation had been an hallucination, or possibly a dream.

That's when the horrifying truth hit me. There was no coffee being made!

It's Complicated

I received an email from a screenwriter who is writing a script which includes a character with lupus. One of the questions he asked me was: "What can you eat?"

Well that's a big question, isn't it?

What I can eat has changed several times over the years. None of those changes have increased the things I can eat, sadly.

So what can I eat?

• Not dairy.  It used to just be no lactose, because lactose gives me reflux - nausea and heartburn, sometimes bad enough to be mistaken for heart attack.  Now it's no dairy at all, because even lactose-free dairy products are causing severe post-nasal drip.  If I eat dairy products, I end up choking on post-nasal drip.  Waking up in the middle of the night coughing and choking is most unpleasant.  I've decided I don't want to die by drowning on my own secretions.  If I did, I could end up as an urban legend like Bloody Mary - you know, you look in the mirror and say three times "Snotty Iris", and my ghost appears and drowns you in snot.  So, it's now a no on the dairy.
• Not gluten.  Gluten upsets my gut - gives me irritable bowel syndrome - wild, unpredictable, swings between constipation and diarrhoea. It's most unpleasant, and can be very embarrassing.
• Not much fat or alcohol.  Lupus has been messing with my liver for years.  My liver enzymes are always off at every blood test.  (Sometimes too high, sometimes too low, totally unpredictable.)  I need to be gentle on my liver.  So I eat low fat food mostly, and limit to alcohol to the occasional glass of wine at Christmas or a birthday.
• Low GI carbohydrates.  This is the newest thing.  My pancreas is struggling, so my blood sugar is now not being properly regulated.  Yes, the name for that is diabetes.  (Because I didn't have enough health issues already.)  So now I have to be aware of the Glycaemic Index of the carbohydrates I eat, and not over-eat carbs in general.

What can I eat?  Well, it's complicated, and it gets more complicated all the time.

Related Posts: 

Weight Loss Group: The Glycaemic Index

Inside my body is chaos

Why I'm Gluten Free

Food and Inflammation

Flare Ongoing

My dog, missing out on her walk.

I'm still struggling with that flare that came up after my trip to my brother's funeral, but I'm slowly seeing signs of things improving.

There are signs of hope.  A couple of times, I've managed my morning walk with my dog.  That's the basis of the exercise program I was working on with the exercise physiologist before this flare started.

The whole program was the ten minute walk every morning, tai chi on two days per week, hydrotherapy once per week, and some strength exercises with an exercise band on the same days as the extra exercise.

Using the morning walk as a basis for the exercise program is a great idea, because I have someone to go with who really misses it when I can't go.  She's my incentive when I just don't feel like a walk.  I have to be really sick to disappoint her.

My dog, after a walk.

So far, each time I've had a morning walk, I've been unable to do it again the next day, but one walk is better than no walk.

Eventually, I will be able have a walk every morning again, then I can start to introduce the rest of my exercise program - slowly, one part at a time, just the same way I did it last time around.

One of the ongoing frustrations of life with lupus is having to establish the "normal" routine over again each time a flare passes.

The Funeral, the Flare, and the Feet

Just under a fortnight ago, my mother rang with horrible news. My younger brother had been killed in a horrible road accident.

I knew that the effort of travelling to the funeral would probably cause a flare, but if I didn't go, the stress and upset would probably cause a flare anyway. So of course I went.

Now, a little tip for pensioners travelling in Queensland.  Queensland Rail charged me $25 each way to travel from Brisbane to Rockhampton on the Tilt Train.  (You need your pension card when you book with them.) With a letter from my doctor saying I needed a carer with me, my son got his ticket free.

The actual trip involved about an hour on a city train to get from Ipswich to  Brisbane.  Then it was eight and a half hours on the travel train.

To help with the pain of sitting so long, I wore the portable tens machine attached to my hips and back the whole time.

I chose to stay at a hotel for the air-conditioning, instead of with family or friends. Because this trip was not planned ahead of time, with no time to save up, I could only afford two nights in the hotel.  So we arrived the night before the funeral,  stayed for the day of the funeral, and left the morning after.

By the time we arrived home, neither my mind nor my body wanted to function at all. To be fair my healthy son was in a similar state.

Two days later, however, he was back to normal, and I was sleeping on the couch all day.  I've been fatigued, in pain and brain-fogged for a week.

With this flare, something new is happening.  Not the crying, that's about my brother.  No, there's something weird happening with my feet.

When the rest of me is hot and pouring sweat (even in the air-conditioning), my feet are freezing cold.  I've been lying on the couch, under the air-conditioner with my feet wrapped in a blanket. Then occasionally I get horrible pains in the soles of my feet.

I suspect it's a circulatory problem.  One of the tests on my brain ages ago showed lupus had caused some vascular changes, so it's not beyond the realms of probability that the same thing is happening to my feet.

So I'm making sure I use the big tens machine at home each day - the one that does the base of the feet as well as having the electrodes for sore spots on the body.

My hope is this flare will burn out quickly, so I can get back to the exercise program the exercise physiologist worked out for me.  But all lupies know a flare will last as long as it lasts.

Lupies Will Understand

I'm sure lupies will understand these things, healthy people might not.

• Having to do something important, that involves speaking, when you have a massive ulcer on the tip of your tongue.
• Going on a short trip, and having to take an extra bag for your medication.
• When you have a choice between going out and having fun, and having a nap, choosing the nap.
• Writing absolutely everything down, because otherwise you will forget 90% of it.
• Checking your pill case five times in an hour because you keep forgetting if you took your pills.
• Drinking coffee by the litre because otherwise you'll fall asleep, then not being able to sleep when you need to.
• Postponing dealing with a crisis because you have a doctor's appointment.
• Getting exhausted doing nothing
• Not knowing if something new is a symptom or a side-effect.
• Doing things you know you shouldn't because you're just so sick and tired of being sick and tired.

Trying Again - With Help This Time

Once more I'm feeling fairly well, and want to get active.

The trouble is, that hasn't ended well for me before.

You see, I feel good, so I do things. That goes well, so I do more.  I'm still feeling OK, so I do more.  Then I crash in a heap, and it takes me ages (weeks or even months) to recover.

This time, I'm going to be smart.  I'm getting professional help.

I'm seeing an exercise physiologist.

To start with I'm walking the dog every day (15 minute morning walk), and doing another exercise on alternate days.  At the moment, she has me using a beginners tai chi lesson on you tube, and exercising in the pool. I'm not doing the full hydrotherapy session I used to do, just a few minutes of walking in the pool, a couple of push-ups on the side, and a couple of arm raises and leg raises.

So the program is one day of just walking, then one day of walking plus tai chi, one day of walking, then one day of walking plus the pool.  I have to be careful to do the tai chi or pool only on days I don't already have something else on.  So days I do groceries, or go to church or Toastmasters, I only do the walking and no other exercise.

It's early days yet.  So far it's going well.  I feel good.

However,  I'm starting to get a bit bored, and restless, as I do when I feel well and am not constantly doing things.

My big challenge is to keep within the boundaries set for me.  Hopefully, I will keep feeling well, and keep having to deal with that challenge, for a long time.

Otherwise, I'll crash and try again when I recover.  (And I know I won't be the only lupie doing that.)

Survival Vs Achieving Things

After a couple of weeks of having no energy, and lying exhausted and in pain on the couch, I'm
starting to want to do things again.

I've been going for walks again.  I've learned my lesson - I'm not going for hour long walks as I did a while back - which was great until I crashed.  Now, I'm taking a couple of ten minute walks each day - breaking things down and trying not to overdo it.

Today, I've dug out my Calorie King app and started to track what I eat again. 

I'm getting restless, wanting to do more than just sit mindlessly in front of the television.

I'm starting to care again. 

That means one thing.  I've been having a couple of good days. (Hopefully, it could be the start of a good week, month, dare I hope year?)

The difference between a good day and a bad day is simple.  On a bad day, I have only one aim - survive. (On some bad days I don't care if I even achieve that.)  Sometimes I feel a little frustrated I don't have the energy to do anything, but most of the time, I don't even have the energy for that.

On a good day, I feel like doing worthwhile things.  I have energy, and my pain levels are manageable, and I remember that I'm more than just a diseased lump lying on the couch.

I used to feel bad about all I didn't achieve, once I started to feel better. But I've realised that's just a waste of precious energy.

On bad days, all I have to do is survive.

On good days, I can do practically anything, as long as I'm careful with the energy I have.

Great Gifts for the Lupie in your Life

Every lupie needs The LupusEncyclopaedia, by Dr Donald
Thomas.

I've just about finished my Christmas gift shopping. (Yes, I'm one of those people.) I don't like going
to shopping centres at Christmas time, when they're crowded and all the kids in the area are on school holidays, and the air conditioning just doesn't seem to be able to cool that number of people. So I get my Christmas stuff out of the way earlier in the year, and just shop on line from late November until about mid-January.

Wrapping presents made me think about the best gifts for lupies.  Here's my suggestions, from a variety of price ranges, of things most lupies should have.

• The Shade UV light sensor. This could save a lupie's life. It helps track the amount of sunlight she/he is exposed to, and for many of us, sunlight is a very dangerous thing.
• The Lupus Encyclopaedia, by Dr Donald Thomas, from Johns Hopkins University Press.  For all the general information every lupie needs.  (For specific, personal advice, always speak to your own rheumatologist.  For everything else, Dr Thomas is a great source of information.)
• A heat pack.  Everyone needs a heat pack or a hot water bottle for the occasional pain that just won't go away.
• A Tens machine.  This is the machine the physiotherapist uses to help control pain.  Electrodes

  

  A tens machine, this large type,
  or a small portable one is great
  for temporary pain control.

  are attached to the skin, and gentle electrical pulses help ease pain.  (I have two of these: a big one that also has foot pads to rest my feet on while sitting, and a little portable one to carry with me.)
• 
  
• A couple of ready-made home-cooked meals to keep in the freezer for a bad day.
• A soft blanket, or Egyptian cotton sheets. When you spend a lot of time in bed, you appreciate nice, comfortable bedding.
• Cute and comfortable pyjamas - for the same reason as comfortable bedding.
• A massage. (Or a massage chair - if you have the money - or a massage mat that goes on the bed.)



A Shade UV light sensor gives the
freedom to know how long it is safe to
stay outside.

• A pill sorter, the type that has three or four sections for each day of the week, and each day's pills can be removed, so it's possible to take enough pills for a day out, without taking the whole week's worth.
• Something from the Lupus Business Directory, where your purchase will help out someone with a chronic illness, while giving you a unique gift.

Catching Up

Do you know some people manage to hold down a full time job, manage their house and garden and still have time for hobbies?

I vaguely remember achieving something of the kind for a little while many years ago.

Now I don't have a job, someone does the bulk of my cleaning, other people mow my lawn, and I'm still struggling.

But I do have times I'm better at the few things I have left to do.

A while ago, I was posting about things I was doing while I was well.  You might have noticed that stopped, as I spent a week or two passed out on the couch.  Just yesterday, I suddenly found myself with energy again.

In the midst of it I had a meltdown about my role in Toastmasters being too much.  (I had an agenda to prepare.  Yeah, that's it, that's all it was. My body was sore and exhausted and my brain wasn't functioning. I couldn't cope.)

Of course, now, having taken a couple of weeks out from life, there's been so many weeds in the garden that the lawnmower guys whipper snipped my miniature roses.  (Yes, I'm back to weeding regularly as I carefully nurse them back to life.) In that same time my kitchen benches disappeared, the arts and crafts studio looks like it's been hit by a bomb, and the sewing work I had out on the studio table has been thoroughly lost in cat hair.

So once again, I'm back to trying to organise and repair all kinds of little bits and pieces of my life, while trying not to push myself to the point of ending back up on the couch for another couple of weeks.

My story's not unique, or even unusual.  Ask anyone with a chronic illness.  This seesaw between being too sick, and then catching up, is just the life we live.

It's OK to be Unreliable

One of the things I really hate about lupus is that I am unreliable.

It's not just me.  When I asked what other lupies had learned from lupus, there were a couple of people who responded about being unreliable.

It's not just that we feel bad about being unreliable, but that we also take on how others feel about our being unreliable.

We feel guilty and frustrated because we have to cancel plans.

Our friends and family may get frustrated or upset with us for constantly cancelling plans.  Some of them even give up making plans with us.

Their response makes us feel even more guilty and frustrated.

If they stop making plans with us, it also helps make us feel more isolated.

It's time for a line from my Granddaughter's favourite movie: "Let it go."  (Actually, my Granddaughter thinks the movie is named, "Let it Go", but that's a different story.)

We're going to be unreliable. We're going to plan for things and then be too sick to do them.  But that's no reason to stop planning things.  Beating ourselves up isn't going to change anything.  So we just have to accept that we will miss out on some things, but if we keep making plans, we will get to enjoy actually doing some of them.

We are responsible for how we react to our own being unreliable.  We are not responsible for how other people react to it.  Their thoughts, feelings, and actions are their own.  We don't control them. If they can't come to terms with a friend or family member being sick, that's their issue.

Never Take a Good Day for Granted

It's confession time.  I may not be quite as well as I've been telling you (and myself) lately.  With my effort at eating properly and exercising almost daily,  I don't seem to have the energy to do much else.  I'm not writing much, and I'm sleeping 12 to 14 hours a night.

What I have been feeling is less pain.  And less pain is good, extremely good.

So while I can I'm going to make the most of the low pain days.

I'm going to keep exercising, and I'm going to keep being a careful to try to eat properly.

You see, lupus has taught me a lot.  One of those things is that a good day is a rare and precious thing.  It should never be taken for granted.

So while the good days last, even if I end up going to bed at 5pm, I'm going to continue trying to get my health into the best possible state before my next flare.

I recently asked on Facebook what lessons other lupies had learned from lupus, a lot are things I have also learned. I'm going to share those over the next few days. Lupus has taught us all a great deal - mostly things none of us ever wanted to know.

While I feel well, part 3

I'm continuing my project, while I'm feeling especially well, to get my body in the best possible shape to handle the next flare. (Because all lupies know, feeling well is a temporary state and there'll always be another flare at an unknown future time.)

So, step one was exercise.  I'm now exercising most days.  (Not every day,  I won't claim to be that virtuous, but most days.) I either do the the Lupus Exercise video exercise routine, or I go for a walk.  Some days, I even manage both.  And some days I over-do it and end up going to bed at 3pm.  But I am exercising regularly.

Step two was to bring my vegetable intake up to the five serves a day level, recommended in the Australian Guide to Healthy Eating. I've got that under control, again most days. I've done it in the simplest possible way.  I buy pre-packed bags of salad, and divide them four ways into containers for lunches with a little meat or boiled eggs, and that's four days lunches.  A large stock pot of vegetables, with some canned tomatoes, stock and rice and lentils added makes up a very good vegetable soup - and again I can prepare several days' serves at once.  A salad for lunch, and soup with dinner brings up my vegetable intake nicely.

Now, I'm ready to focus on something new.  I'm looking at the two and a half milk serves the Guide to Healthy Eating recommends for me. Being lactose intolerant, I don't have regular milk, but use lactose-free milk instead. (That is milk, with lactase enzyme added to break down the lactose.)  Non-dairy substitutes are available for people who don't like animal products or can't handle the protein in milk, but it's best to go for calcium-fortified versions dairy substitutes.

At the moment, I have milk with my breakfast cereal.  I really need to intentionally have a second serve of milk, cheese or yoghurt at another time of day as well. I'm thinking of a few options: cheese added to my lunch salad, or a warm milk before bed, or perhaps yoghurt and fruit for dessert.

There was a time when I would have created an exciting, varied, menu for my meals throughout the week.  I really don't have the energy for that now.  It's just easier to have a routine that works for most days, and then I only have to plan occasionally.

So that's my task for the next few days, to intentionally add a little more dairy into my diet.

How about the rest of you lovely lupies out there?  When you're able, what do you do to try to improve your health? Do you find it easier to have a routine that's the same most days, or do you like variety?

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While I Feel Well

I mentioned my visit with my rheumatologist the other day, talking about costs.

I didn't share my good news.  Not only have I been feeling well most of the time lately, but my test results bear it out.  There's a very small amount of gut inflammation, and my liver function's not perfect, but all of my lupus markers are negative.

So I have a plan to make the most of lupus being inactive.  I'm going to work on my overall health as much as possible to be stronger and better able to cope when the next flare hits.

The first step is I'm exercising every day.  It took a while to build up to it, but I'm doing the Care for Lupus Lupus Exercise Program every day.  I'm also going for short walks with the dog on days when it doesn't rain.

Next, I'm going to try to get back in control of my diet.

Glad To Be Australian

I had an interesting conversation with my rheumatologist yesterday about the cost of managing lupus.

In Australia, as a pensioner, I pay about $6 for my methotrexate.  That's what it costs under the Pharmaceutical Benefits Scheme.  When I've paid a certain amount on medications for the year, they're free from then on.  Overall, including what I pay, and what the government pays, the methotrexate actually costs about $120, because it's a drug that's been around a long time and it's quite cheap.

Dr K asked me to guess what it cost in the USA.  I guessed about $2000, because the US is notorious for the high cost of healthcare. I was way off.
It's about $5,500. (Health insurance companies would pay some of that, if the patient has health insurance.) The government there isn't involved in purchasing drugs, and doesn't negotiate the price.

I'm sure America's a much better country to be a drug company - but as a patient I'm really glad I live here.

So my rheumatologist tells me that American patients can find it cheaper to fly here to see a specialist and buy medications, than to have their treatment there. (If you're not covered by the PBS, that methotrexate would be $120 here.)

I'm finding myself wondering how to start a drug smuggling ring - to smuggle methotrexate, prednisone, plaquenil, pyralin, all the usual lupus meds to people who really need them.

Flu Season's Coming

Yesterday was ANZAC Day, which means a few things. (No, I'm not talking about the ANZACs or the families who would have preferred their sons and husbands to be coming home, rather than becoming legends.)

It means we're about midway through autumn, so the weather is about to get colder.

It also means it's time to get a flu shot.

The flu shot won't give you protection against every sniff and sniffle going around, but it will give you some resistance to the most kill-ey versions of the flu that are expected to come around this flu season.

For lupus patients (and patients with other immune-compromising diseases) can go to our doctors to get the flu vaccine for free, under the National Immunisation Program.

It's worth asking family to consider getting a flu shot as well.  Them being protected also helps us to be protected.  For family members who aren't covered by the Program, it's possible to get a flu shot fairly inexpensively from a pharmacy or a doctor's surgery.

Want to be part of the World Lupus Day activity on Sometimes, it is Lupus? Email iris@sometimesitislupus.com your first name, your country and the advice you would give someone newly diagnosed with lupus.

I'll put all of the advice together in a resource to be published on this blog on World Lupus Day, 10 May 2017.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

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When Lupus is Unbearable

Trigger warning: discussion of suicide.


Lupus is a horrible disease, which makes life thoroughly miserable at times.

So when I found out that a lovely lupie I've had a fair bit of online contact with  chose to end her life recently, I fully understood that choice. Lupus caused her death, even though that's not what will be listed on the death certificate.

There have been times I have considered a half-formed plan in case lupus became unbearable. I've talked to other people with chronic illnesses who have had similar ideas. Strangely, having the reassurance that there's a way to stop things being unbearable, makes things easier to bear.

Lupus takes so much away from us: health, the ability to work, the ability to rely on our own bodies and minds, and replaces those things with fatigue, physical pain, and a sense of guilt about all the things we can't do.  That's aside from the risk of organ failure, the constant blood tests, visits to multiple types of doctor, a whole life that at times seems to be built around a disease.

When lupus is really bad, and organs do fail, and pain is worse than usual, just opting out of everything can seem to be a solution.

The discussion of voluntary euthanasia has been going on in Australia for years. Years ago, I was totally against it.  Now, after a few years of living with lupus, I get it.  Now, I think with some proper safeguards, it could be a good option. There would need to be a way to ensure that people weren't pressured by others into making the choice, and to ensure that it wasn't a result of depression.  (Depression is bad, I know from experience, and when you're at the bottom of the pit, it can seem like the pit is all that there is; but with support, medication, counselling and plain old determination, people can and do climb out of the pit and back into the light.)

What keeps us from all taking the option of ending our lupus and everything else? There's a few things:

• Hope.  One day some scientist is going to work out that this tiny change to that tiny gene or whatever is the solution. Lupus is going to be cured and we're all going to go back to normal lives. We want to be around to see that happen.
• Love.  Each of us, no matter what lupus has done to us, have people we love and who love us.  Those people would be devastated if we died. When we have a choice, we live for them.
• Faith. Viktor Frankl observed as an inmate of Auschwitz, that those who found meaning despite their suffering coped far better than those who did not find meaning. Whatever or whoever we have faith in, wherever we find our meaning, helps us get through things that would otherwise be unbearable.
• Future. Sure, things could get worse.  But they could also get better.  I can hold out a bit longer and find out which.
• Present.  Is this a "right now" thing, that will improve tomorrow or next week?
• Past.  I've been through bad things before.  If I could get through those, I can get through this bad thing that's happening now.
• Community. None of us is alone in this.  We belong to a community of people with lupus. Whatever we are going through, there's someone else who has been there and done that.  
• Stubbornness.  The simple determination to not let this dumb disease win.
• Support. Sometimes talking things out with someone, or having a friend or family member come in and catch up the washing we've been too sick to do, is all it takes to make the situation bearable after all.

Suicide is an understandable, and even in some cases reasonable, response to an incurable illness, but if you're considering it, I'd ask you not to take the decision lightly.  First step back, and look at the whole picture of your life and the network of the people your life impacts on.  Talk about it, with fellow lupies, with your doctor, with your family, with a counsellor. Don't make this decision hastily, or alone, or in the pit of depression.

If this post has raised issues for you, and you need to talk about it, you can call Lifeline on 131114 from anywhere in Australia.

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Don't Say It!

There are some things you should just never say to someone with lupus.

1. Everyone gets tired. Lupus fatigue is far more than just being tired. Imagine having heavy weights hanging off your legs, feet, hands, arms and head - all day every day.  That's what dragging our bodies through life feels like.
2. At least it's not cancer. I have a horrible illness that may kill me, and means I will take toxic drugs (some of which are the same ones given to cancer patients) probably for the rest of my life, can attack any organ without warning, and makes me sick each and every day.  No, it's not cancer.  People with cancer have a rotten time, but so do people with chronic illnesses.  
3. You should put more effort in. Some days, just getting out of bed takes all the strength I can manage. I do my best, and I already feel guilty for all the things I can't do.  I don't need your judgement as well.
4. You need to take something to boost your immune system.  My immune system is what's killing me. It doesn't need any help.
5. I know someone who can cure it. No, you don't. You know someone who wants to sell me snake oil - who wants to take advantage of me, because they think I might be desperate enough to be vulnerable.
6. A friend of mine had that but they were cured. So far there is no cure. Your friend is either in remission, or was misdiagnosed.
7. Why don't you try... My life is in danger here.  I don't have to justify to you why I choose to do as my doctors say.
8. You need to get out in the sun more. Sunlight makes lupus worse.  Think of me as the vampire you know.  I'll stay out of the ultraviolet light as much as possible, thanks.
9. All those drugs you take are dangerous. I know. They're horrible. The only thing worse than taking them, is not taking them.
10. You should get more exercise. I have a limited amount of energy for the day, once I've used it it's gone.  I will use my precious little bit of energy on whatever seems most important to me.
11. You don't look disabled, you don't need a disabled parking space. You don't look like an idiot either. I guess there's some things you just can't see.
12. You don't look sick. I'm so awesome, I can look well, while my whole body is falling apart.  That's my superpower. What's yours?

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It's Going to Take Some Work

Health Check Station at my local
pharmacy.

For the last few months, I've had a problem with my bathroom scale.  I will gain and lose more than six or seven kilograms per day.  Clearly my scale was faulty.

Rather than go to the expense of buying another one, I thought I'd check in at the free health check station at my local pharmacy.

It checks weight, BMI, body fat percentage, blood pressure, pulse, all kinds of things, and emails the results.

My results were very sad.  My weight came up worse than the scale at home said at any time. My overall health score was 3.6 out of ten or bottom six per cent of the population.

Now, don't get me wrong,  I wasn't under any delusion I was healthy, but I hoped that despite lupus, I wasn't that bad.

I guess I have a lot of work ahead of me.

Key to that will be slowly building up to daily exercise, and using my Calorie King app to get back in control of my eating.

When my steroids were reduced, I dropped a dress size, without trying, which was great. It's becoming clear, however, that to get any further will take some actual work.

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Real Food

I'm always going to have the times I don't have the energy to
make "real food", so I have to get back in the habit of
preparing multiple meals at once.

Yesterday, we ducked out for a couple of things, and My son suggested we stop for fast food on the way home.

I thought about the options available, and realised something.  For days I'd just been grabbing whatever was quick and easy to eat, not worrying about what it was, and I felt awful for it.

My son, it must be said, could live for ever on two food groups, chips and tomato sauce.  I can only handle junk for so long before my body rebels.  "I just want to eat real food," I said.

I bought sliced meat and a bag of mixed salad vegetables - still pretty fast food, but something much better for me.

So, I've decided to get back into the habit of preparing extra serves whenever I make a meal. I need to make sure that what is quick and easy is actually food, not just junk.

I'm feeling a bit better today, although still a little "off".  I hope I've learned my lesson this time.  (But if you've been reading this blog a while, you know I keep re-learning it over again.)

So lovely lupies, give me some ideas: nutritious meals that don't take any effort to prepare; and nutritious meals that I can make up multiple serves of that will keep a couple of days in the fridge.  You know the deal: give me your comments on this post or on any of the social media choices.

PS, yes, I still do have things to tell you about that I found out on the Melbourne trip. Tomorrow, I'll get back to it and tell you about what's happening for World Lupus Day.

The novel I'm writing at the moment has everything: zombies, romance, a mad scientist and a sinister mystery.  Patrons of my writing will get an electronic version of the book, before it is released to market. You can become a patron of my writing; my books and blogs, for as little as $1 a month.  Just follow the link below.

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