Two days in a row, I've woken up without pain. For many people, that probably doesn't sound like an achievement. When I told my son, he applauded appropriately because he knows I actually haven't had that happen for a very long time.
I'm getting ahead of myself, hoping I'm going into remission.
It's been about four to six weeks since my fish oil dose was increased to 10g per day, and that's about how long it's taken for previous changes in medication to show any effect. So what is probably happening is that the fish oil is starting to have the impact my specialist hoped it would. (The hope is that I can eventually cut down on some of my pain control drugs.)
But I could definitely get used to not being in pain. It makes everything else in life seem so much better! I feel like I can do more (but know I have to always do just that little bit less than I think I can).
So this leaves me wondering: how will I know when lupus is in remission, not just controlled by the drugs?
From everything I've read, it seems no-one really knows why lupus flares or why it goes into remission. There's no set time period for any flare-up of the disease (or for periods of remission). While it's flaring drugs can control the symptoms to a greater or lesser degree, but drugs don't cause lupus to go into remission.
So what do I do with my current situation? To start with, I enjoy my pain-free days! Then, if it lasts, I guess the next step is to start reducing those pain medicines the specialist wanted to be reduced (they can have long-term effects that aren't nice.) If it still lasts - who knows?
Wednesday, 27 July 2022
Saturday, 23 July 2022
Not looking sick
No-one ever says I look sick. They either say I look well or I look tired. What's the difference between the two? About ten minutes of applying make-up (OK more like twenty minutes), dying my hair once in a while, and generally checking my clothing and appearance are OK before I leave the house.
Some days I don't feel up to bothering. I just don't have the energy. Some days I'm going to Curves anyway and need to wear tee-shirt and gym pants. But most times, when I leave the house, I try to look the best I can.
It takes effort, and precious energy out of my energy budget. But it's important to me. It's important partly, because people react differently to me when I look OK to when I look like I'm about to pass out any minute It's also important because I feel differently about myself. When I think I look OK, I feel that bit better.
It comes down to something my high school deportment and grooming teacher said once. (I know studying deportment and grooming at high school is really, really, dumb - but it was being offered one semester as an alternative to sport. Get dressed up or do sport and have an asthma attack - it was an easy choice.) She was talking about how to dress in the workplace. She said you should always aim to be just that bit better dressed than other people - if you're in a workplace everyone wears jeans, wear designer jeans. Always look like you're one level higher than you actually are - it changes people's perceptions of you and helps you actually get to that next level up. In other words "fake it till you make it."
I don't know if it works in the workplace. I never could afford the designer clothes. But on the other hand, I do have a strategy to get nice clothes. My favourite clothes shop tends to bring out new dresses at $80 each. I choose what I want when they first come out, and then just keep coming back. Eventually the price comes down to $40 which is the time to buy it because that's the lowest it will go before it's removed from stock. I never choose on the basis of what's fashionable, but on the basis of what I believe will look good on me, because I need my clothes to last longer than one or two seasons.
I'm not "faking it" to get respect or a promotion at work. I just want to look like I'm not some strange, sick person who at best should be pitied or at worst avoided for risk of contagion.
So my bathroom cupboard is cluttered with hair dye, home tooth whitener, make-up, make-up removers (paint strippers), waxes and shavers.
It all seems a bit much at times, and does take far too much time and effort. But if you're going to talk to me, would you rather I looked like someone who put a bit too much effort into their appearance, or the deathly-pale person with the black under-eyes who looks like Dracula's twin sister?
Some days I don't feel up to bothering. I just don't have the energy. Some days I'm going to Curves anyway and need to wear tee-shirt and gym pants. But most times, when I leave the house, I try to look the best I can.
It takes effort, and precious energy out of my energy budget. But it's important to me. It's important partly, because people react differently to me when I look OK to when I look like I'm about to pass out any minute It's also important because I feel differently about myself. When I think I look OK, I feel that bit better.
It comes down to something my high school deportment and grooming teacher said once. (I know studying deportment and grooming at high school is really, really, dumb - but it was being offered one semester as an alternative to sport. Get dressed up or do sport and have an asthma attack - it was an easy choice.) She was talking about how to dress in the workplace. She said you should always aim to be just that bit better dressed than other people - if you're in a workplace everyone wears jeans, wear designer jeans. Always look like you're one level higher than you actually are - it changes people's perceptions of you and helps you actually get to that next level up. In other words "fake it till you make it."
I don't know if it works in the workplace. I never could afford the designer clothes. But on the other hand, I do have a strategy to get nice clothes. My favourite clothes shop tends to bring out new dresses at $80 each. I choose what I want when they first come out, and then just keep coming back. Eventually the price comes down to $40 which is the time to buy it because that's the lowest it will go before it's removed from stock. I never choose on the basis of what's fashionable, but on the basis of what I believe will look good on me, because I need my clothes to last longer than one or two seasons.
I'm not "faking it" to get respect or a promotion at work. I just want to look like I'm not some strange, sick person who at best should be pitied or at worst avoided for risk of contagion.
So my bathroom cupboard is cluttered with hair dye, home tooth whitener, make-up, make-up removers (paint strippers), waxes and shavers.
It all seems a bit much at times, and does take far too much time and effort. But if you're going to talk to me, would you rather I looked like someone who put a bit too much effort into their appearance, or the deathly-pale person with the black under-eyes who looks like Dracula's twin sister?
Wednesday, 20 July 2022
Getting back to Curves
This morning I'm lying in bed and blogging. I need a "rest day" because my shoulder is hurting.
The past two days I've worked out at my local Curves gym. I had stopped while I settled back into part-time work. While I had yoga workouts on the wiifit, a treadmill I didn't use, a bike I've discovered I just can't balance on, I found I just wasn't getting any exercise.
Exercise is always an issue with chronic illness. It takes up precious energy, and energy needs to be rationed. But it also helps to regulate blood sugar and mood. It helps to control weight. And it helps keep joints and muscles working.
I like the Curves workout because it has everything: strength training, cardio, and stretching. That's all three areas of exercise covered in a workout of about half an hour. The other thing is that I can do it at my own level. Our local Curves owner Sue, and her staff, are all incredibly understanding and they know there are days when I'll just "go through the motions" rather than push myself. They're OK with that because they know about my condition, and that some days just turning up is more effort for me than an intense workout is for some of the fitter ladies.
The other thing about Curves is that it's full of women like me - not necessarily lupus patients - but women who are there because they want to improve their health. It's not a competition to be the fittest, or the best built. There's no mirrors on the walls so we don't have to see which bits are wobbling from all directions - and no windows that passers-by can look through to watch us.
There's also this cool little computer program called "Curves Smart" - which means we all have little smart card tags that tell the machines who we are - and a computer measures what we're doing compared with what we're capable of - there's instant feedback on the energy we're using, our range of motion on the equipment, and heart rate.
It is a commitment of money, and money is hard to come by. But it's less expensive than a number of other gyms around, another thing that attracted me.
If you go to Curves at Keperra, you'll know me. I'm the woman who winces every time she has to move her left shoulder.
Find a Curves near you: http://www.curves.com.au/
Find a Curves near you: http://www.curves.com.au/
Monday, 18 July 2022
A matter of life and death
Have you ever thought about your end-of-life decisions?
You may not want to, but I've worked in hospital chaplaincy, and I know it's something you need to not just think about, but to talk about as well.
I used to believe that an Advanced Health Directive - a legal document setting out the individual's personal preferences around the end of life - was a great idea. Then I went to a bioethics seminar, where the speaker pointed out the drawbacks of AHDs: that they were legally binding, but no-one could foresee all eventualities in preparing it and so it could actually end up forcing medical staff to do things the patient wouldn't want.
A much better idea is to make sure you appoint someone to make your decisions for you when you are unable to make your own choices. This person should be very clear that their responsibility is to make the decision you would want - not what they would want in the situation. They should be someone who knows you very well, knows your religious and ethical beliefs about life and death, knows your position on practical issues like the difference between prolonging life and prolonging death, and whether you want to donate your organs.
While you're thinking about all of this, you also need to think about your will. If you made a will forever ago, remember that major life events such as marriage, divorce, family births and deaths can affect your will. You need to check every few years whether it needs to be updated.
As soon as I was diagnosed, I made my will. Since then, I've had several conversation with family and friends - everyone who might in any way be consulted - about my end-of-life preferences.
This is one of the few advantages of having a chronic illness: knowing that I need to get these things in order.
Having been a hospital chaplain, having seen what happens to families around a death-bed, let me assure you that if you care at all for your loved ones, you need to do the same things. The overwhelming feeling felt by family members who don't know the patient's wishes is guilt: they are given difficult choices, and if they can't say for sure what the patient would want, they feel guilty about whatever they decide.
Do your family a favour: talk to them about life support machines, resuscitation, and organ donation.
You may not want to, but I've worked in hospital chaplaincy, and I know it's something you need to not just think about, but to talk about as well.
I used to believe that an Advanced Health Directive - a legal document setting out the individual's personal preferences around the end of life - was a great idea. Then I went to a bioethics seminar, where the speaker pointed out the drawbacks of AHDs: that they were legally binding, but no-one could foresee all eventualities in preparing it and so it could actually end up forcing medical staff to do things the patient wouldn't want.
A much better idea is to make sure you appoint someone to make your decisions for you when you are unable to make your own choices. This person should be very clear that their responsibility is to make the decision you would want - not what they would want in the situation. They should be someone who knows you very well, knows your religious and ethical beliefs about life and death, knows your position on practical issues like the difference between prolonging life and prolonging death, and whether you want to donate your organs.
While you're thinking about all of this, you also need to think about your will. If you made a will forever ago, remember that major life events such as marriage, divorce, family births and deaths can affect your will. You need to check every few years whether it needs to be updated.
As soon as I was diagnosed, I made my will. Since then, I've had several conversation with family and friends - everyone who might in any way be consulted - about my end-of-life preferences.
This is one of the few advantages of having a chronic illness: knowing that I need to get these things in order.
Having been a hospital chaplain, having seen what happens to families around a death-bed, let me assure you that if you care at all for your loved ones, you need to do the same things. The overwhelming feeling felt by family members who don't know the patient's wishes is guilt: they are given difficult choices, and if they can't say for sure what the patient would want, they feel guilty about whatever they decide.
Do your family a favour: talk to them about life support machines, resuscitation, and organ donation.
Sunday, 17 July 2022
Woman on the seesaw
Do you remember playing on the seesaw as a kid? Not the times you played with someone else, but when you got on alone and tried to make it balance? You'd try to stand in the middle, it would tilt one way, you'd lean towards the other end, then that end would tilt down and you'd lean the other way. It was a matter of constantly shifting your weight, trying to get that exact centre to balance both sides.
That's what life with lupus is like. It's a constant battle to balance everything:
My balance constantly changes. On days and weeks when I'm well, I have more energy to budget. Sometimes I have more pain and less fatigue. Sometimes I have more fatigue and less pain. Sometimes I have brain fog and don't know what's going on anyway!
My GP constantly warns me about packing too much into my life when I'm feeling well - in case I use up the precious little reserve of energy I've built up, or commit myself to things I just won't handle when I have a bad day or week.
I know everyone has to balance their work and personal lives. Everyone has to balance their financial budget. I remember what it used to be like before I got sick - believe me it was different. Now the struggle to keep balance is so much more serious!
That's what life with lupus is like. It's a constant battle to balance everything:
- how much I do for myself to save money vs how much I pay others to do to save energy
- how much exercise I get to keep joints moving vs how much rest I get to avoid fatigue
- how much energy I budget to work vs how much for my family vs how much for friends and partner vs how much for the things I need for myself
- needing to get things done vs needing to have a nap
- using energy driving vs the risk of having to stand on public transport
My balance constantly changes. On days and weeks when I'm well, I have more energy to budget. Sometimes I have more pain and less fatigue. Sometimes I have more fatigue and less pain. Sometimes I have brain fog and don't know what's going on anyway!
My GP constantly warns me about packing too much into my life when I'm feeling well - in case I use up the precious little reserve of energy I've built up, or commit myself to things I just won't handle when I have a bad day or week.
I know everyone has to balance their work and personal lives. Everyone has to balance their financial budget. I remember what it used to be like before I got sick - believe me it was different. Now the struggle to keep balance is so much more serious!
Saturday, 16 July 2022
Parking spaces
I'm not excited by trips to large shopping centres at the best of times. There's too much background noise, and I can't clearly hear what people are saying to me.
The absolute worst time of year to go to a major shopping centre is December and January. To start with, this is the worst of summer here in sunny Queensland - summer heat means I get tired far more than usual Then the December pre-Christmas sales, then the Boxing Day sales, then there's the January sales which just run on from Boxing Day, along with the school holiday crowds, means the carparks are always full.
I have been tired and sore from the heat, just about too exhausted to even think about what I've faced the trauma of a shopping centre to buy anyway, and had to drive around the carpark for 30 minutes, looking for somewhere to park
At these times, I've looked at the empty "disabled" parking spots with a kind of avarice I think I rarely have over anything.
I, along with many other people who have chronic illnesses that involve severe pain and fatigue, do not qualify for "disabled" parking.
I checked the Queensland Transport website. To get the magic tag that makes those spots legally accessible, one must need assistance with mobility. So, people with wheelchairs, walking sticks, and walking frames get the spots. And I don't begrudge them those, they need it.
But people with Lupus, people with MS that hasn't progressed to the point of needing a wheelchair yet, people with some cancers, etc, who suffer from fatigue and pain, but aren't attached to any hardware, don't get the permit.
Most of the time it doesn't worry me. Most of the time, I wouldn't use the permit if I had it. But sometimes, on those incredibly hot days, when I can't walk five metres without falling into exhaustion, when I need to buy something so desperately that I absolutely must go to a shopping centre - God help me, I covet a disabled parking permit!
The absolute worst time of year to go to a major shopping centre is December and January. To start with, this is the worst of summer here in sunny Queensland - summer heat means I get tired far more than usual Then the December pre-Christmas sales, then the Boxing Day sales, then there's the January sales which just run on from Boxing Day, along with the school holiday crowds, means the carparks are always full.
I have been tired and sore from the heat, just about too exhausted to even think about what I've faced the trauma of a shopping centre to buy anyway, and had to drive around the carpark for 30 minutes, looking for somewhere to park
At these times, I've looked at the empty "disabled" parking spots with a kind of avarice I think I rarely have over anything.
I, along with many other people who have chronic illnesses that involve severe pain and fatigue, do not qualify for "disabled" parking.
I checked the Queensland Transport website. To get the magic tag that makes those spots legally accessible, one must need assistance with mobility. So, people with wheelchairs, walking sticks, and walking frames get the spots. And I don't begrudge them those, they need it.
But people with Lupus, people with MS that hasn't progressed to the point of needing a wheelchair yet, people with some cancers, etc, who suffer from fatigue and pain, but aren't attached to any hardware, don't get the permit.
Most of the time it doesn't worry me. Most of the time, I wouldn't use the permit if I had it. But sometimes, on those incredibly hot days, when I can't walk five metres without falling into exhaustion, when I need to buy something so desperately that I absolutely must go to a shopping centre - God help me, I covet a disabled parking permit!
Thursday, 14 July 2022
Alternative therapies
As I write, I'm listening to a medical researcher on the radio urging doctors to stop recommending unproven alternative therapies.
It's interesting that people like to trust things that are considered "natural", or "alternative", whether or not there's any proof that they work.
Of course, it's getting harder to tell what is and isn't proven. I was looking at weight loss things on the internet. I actually subscribe to CalorieKing.com.au which is a reputable weight loss website, which does weight loss the old-fashioned proven way - with nutritional education and counting energy, etc.
One site I discovered, sold a product which it claimed was "clinically proven". It didn't give any reference to who had done these trials when or where or where they were published. Curious, I emailed the company and asked if they could tell me where the results of the clinical trials were published.
Their (totally unedited) reply is:
Hi Iris,
Thank you for your email. There has been significant amount of research done on the effectiveness of all of the ingredients for weight loss, and they all work well to help the body to work more efficiently to lose weight.
The ingredients in Liproxenol have been combined in a synergistic formula which means that each individual ingredient works more effectively in combination with the other ingredients than they would when used independent of each other.
Thanks,
Louise
Customer Support Team
In other words, for the sake of advertising on the internet, someone's vague idea that something might work, counts as clinical evidence. I'm sure if I looked into it further, the advertising would have originated from some country that has lower standards in its advertising regulation than Australia does.
When you're sick and in pain, or even just desperate to lose weight, any offer of help or hope seems like something to grab on to. But the truth is that many of the "alternatives" are totally unproven, and not worth the money. If someone advertises their product as "clinically proven", but can't give you details of a reputable organisation doing the studies on it, you know it's all a con act. Save your money.
It's interesting that people like to trust things that are considered "natural", or "alternative", whether or not there's any proof that they work.
Of course, it's getting harder to tell what is and isn't proven. I was looking at weight loss things on the internet. I actually subscribe to CalorieKing.com.au which is a reputable weight loss website, which does weight loss the old-fashioned proven way - with nutritional education and counting energy, etc.
One site I discovered, sold a product which it claimed was "clinically proven". It didn't give any reference to who had done these trials when or where or where they were published. Curious, I emailed the company and asked if they could tell me where the results of the clinical trials were published.
Their (totally unedited) reply is:
Hi Iris,
Thank you for your email. There has been significant amount of research done on the effectiveness of all of the ingredients for weight loss, and they all work well to help the body to work more efficiently to lose weight.
The ingredients in Liproxenol have been combined in a synergistic formula which means that each individual ingredient works more effectively in combination with the other ingredients than they would when used independent of each other.
Thanks,
Louise
Customer Support Team
In other words, for the sake of advertising on the internet, someone's vague idea that something might work, counts as clinical evidence. I'm sure if I looked into it further, the advertising would have originated from some country that has lower standards in its advertising regulation than Australia does.
When you're sick and in pain, or even just desperate to lose weight, any offer of help or hope seems like something to grab on to. But the truth is that many of the "alternatives" are totally unproven, and not worth the money. If someone advertises their product as "clinically proven", but can't give you details of a reputable organisation doing the studies on it, you know it's all a con act. Save your money.
Tuesday, 12 July 2022
Working from home
Having had two years off work, and not liking being totally dependent on disability pensions, I was looking for ideas of what I could do to make a little extra money without much physical effort, just in case the time comes that I have to stop working again.
I have a computer and the internet. Some people apparently make money with those two resources.
So I started blogging. Blogs make money by selling advertising - each time a person clicks on an ad on a blog, the owner gets a couple of cents. I've got three blogs, and I'm well on my way to making my first dollar by the end of the year. This is not something that will get me independent, and it's not an alternative career. It's a hobby.
Some people seem to make money by signing up for those opinion poll companies - I'm signed up to a few of them, just in case. Again, there's no sign of making anything out of them. I do better with the rewards programs for the shops I buy my groceries at - they have at least earned me gift cards I could buy more groceries with.
So blogging, opinion polls, etc - they're hobbies, things to fill in time. They're not things to do and expect to make money.
There are all sorts of "business opportunities" on the net - but I've found from looking at their ads that they often don't say what their business actually is up front. Maybe I'm a bit cynical - but I think that if you can't tell people upfront what you do, you must have something to hide.
The people who seem to make money from working at home are those with marketable skills. I know someone who set up a secretarial service, or "virtual office"; typing and data entry with information sent via internet or in the mail.
And me? Well, it's not an extra income source, but I've started doing more of my current job from home. Saving the energy I would use on that little bit of travelling might mean I can keep doing the job I have for longer, and I won't need to be looking for something else after all.
I have a computer and the internet. Some people apparently make money with those two resources.
So I started blogging. Blogs make money by selling advertising - each time a person clicks on an ad on a blog, the owner gets a couple of cents. I've got three blogs, and I'm well on my way to making my first dollar by the end of the year. This is not something that will get me independent, and it's not an alternative career. It's a hobby.
Some people seem to make money by signing up for those opinion poll companies - I'm signed up to a few of them, just in case. Again, there's no sign of making anything out of them. I do better with the rewards programs for the shops I buy my groceries at - they have at least earned me gift cards I could buy more groceries with.
So blogging, opinion polls, etc - they're hobbies, things to fill in time. They're not things to do and expect to make money.
There are all sorts of "business opportunities" on the net - but I've found from looking at their ads that they often don't say what their business actually is up front. Maybe I'm a bit cynical - but I think that if you can't tell people upfront what you do, you must have something to hide.
The people who seem to make money from working at home are those with marketable skills. I know someone who set up a secretarial service, or "virtual office"; typing and data entry with information sent via internet or in the mail.
And me? Well, it's not an extra income source, but I've started doing more of my current job from home. Saving the energy I would use on that little bit of travelling might mean I can keep doing the job I have for longer, and I won't need to be looking for something else after all.
Sunday, 10 July 2022
Getting cold feet
This winter's been a bit hit and miss. Early on it was freezing. Then we had some rain and cloud cover and things warmed up. And just the past few days, winter's come back, reminding us that here in Brisbane, it must always be cold and windy in time for the Brisbane Exhibition in August.
So I've been in and out of jackets and jumpers, boots and gloves.
Yesterday, I was at my boyfriend's house, when he asked me couldn't I feel the cold. Of course I could feel the cold, what did he mean? Well, I was barefoot. He was wearing wool-lined slippers, his friend who was also there was wearing shoes with thick socks. How could I stand having bare feet? Weren't they cold?
I stood on my left foot and lifted my right, putting it against my left calf. Funny. I did it in reverse: stood on my right foot and lifted my left, placing it against my right calf. I sat down and felt my feet with my hands. He was absolutely right. My feet were very cold. But I hadn't noticed that by feeling them from the inside.
What does this mean? Hopefully absolutely nothing. I'll tell my doctor about it at my visit on Friday, she'll have a look at my feet and say, well that's odd but there's nothing going wrong.
It bothers me because it could be something - and that something has the potential to be bad. I spent years of my ministry as a hospital chaplain. Again and again, I saw people with chronic illnesses who had the same story: it started with a sore on one foot that wouldn't heal; then a toe had to be cut off, then half a foot; six months later it was the other foot, then half a leg, eventually most of the leg. People lost themselves, literally, bit by bit. The culprit? Vasculitis. It's a horrible condition of the circulatory system. Blood stops flowing to the area, nothing heals, seemingly small injuries become incurable rotting (gangrenous?) sores, and the only solution is to cut off the affected area.
Because I've seen more than enough of that, I'm a bit obsessive about my feet. (OK, wondering around with bare feet on a cold day may not make that obvious, but it's true.)
When I was first diagnosed, a friend with diabetes taught me all about how to care for feet.
She took me to buy proper shoes. I'd always bought shoes from discount shoe shops, aimed at spending $20 or less per pair. What a shock to discover that a "cheap" pair of shoes for me is now $100 on special. Shoes now come from the kind of place that measures my feet (length and width exactly, not just "well that's about size 7 and a half") every time I go there.
She also recommended a good podiatrist - I go to him every eight weeks or so. He cuts my toenails, sands and files back any rough bits, investigates every scratch, scrape, bruise, bump, or blister. He generally checks to make sure my feet are healthy and that I'm looking after them.
I soak my feet, I moisturise them, and massage them. And, usually, I'm very careful to support and protect them.
I'm very attached to my feet. So getting cold feet is concerning. Not realising they're cold is even more concerning. But it's probably just my body doing silly things and nothing at all to worry about (well I hope it is).
So I've been in and out of jackets and jumpers, boots and gloves.
Yesterday, I was at my boyfriend's house, when he asked me couldn't I feel the cold. Of course I could feel the cold, what did he mean? Well, I was barefoot. He was wearing wool-lined slippers, his friend who was also there was wearing shoes with thick socks. How could I stand having bare feet? Weren't they cold?
I stood on my left foot and lifted my right, putting it against my left calf. Funny. I did it in reverse: stood on my right foot and lifted my left, placing it against my right calf. I sat down and felt my feet with my hands. He was absolutely right. My feet were very cold. But I hadn't noticed that by feeling them from the inside.
What does this mean? Hopefully absolutely nothing. I'll tell my doctor about it at my visit on Friday, she'll have a look at my feet and say, well that's odd but there's nothing going wrong.
It bothers me because it could be something - and that something has the potential to be bad. I spent years of my ministry as a hospital chaplain. Again and again, I saw people with chronic illnesses who had the same story: it started with a sore on one foot that wouldn't heal; then a toe had to be cut off, then half a foot; six months later it was the other foot, then half a leg, eventually most of the leg. People lost themselves, literally, bit by bit. The culprit? Vasculitis. It's a horrible condition of the circulatory system. Blood stops flowing to the area, nothing heals, seemingly small injuries become incurable rotting (gangrenous?) sores, and the only solution is to cut off the affected area.
Because I've seen more than enough of that, I'm a bit obsessive about my feet. (OK, wondering around with bare feet on a cold day may not make that obvious, but it's true.)
When I was first diagnosed, a friend with diabetes taught me all about how to care for feet.
She took me to buy proper shoes. I'd always bought shoes from discount shoe shops, aimed at spending $20 or less per pair. What a shock to discover that a "cheap" pair of shoes for me is now $100 on special. Shoes now come from the kind of place that measures my feet (length and width exactly, not just "well that's about size 7 and a half") every time I go there.
She also recommended a good podiatrist - I go to him every eight weeks or so. He cuts my toenails, sands and files back any rough bits, investigates every scratch, scrape, bruise, bump, or blister. He generally checks to make sure my feet are healthy and that I'm looking after them.
I soak my feet, I moisturise them, and massage them. And, usually, I'm very careful to support and protect them.
I'm very attached to my feet. So getting cold feet is concerning. Not realising they're cold is even more concerning. But it's probably just my body doing silly things and nothing at all to worry about (well I hope it is).
Saturday, 9 July 2022
Driving issues
The good thing about blogging as a hobby is that I can do it without going anywhere.
My son chose my netbook computer on the basis that the keys were big enough for me to type comfortably, but the whole thing was small and light enough that I could type while lying in bed. (Today, I've got as far as sitting at my desk, right next to the bed - impressive effort huh?)
While I'm blogging, my brain is working, but the rest of me is still resting. It helps to fight the boredom of fatigue, and to keep away the dreaded brain fog (where thinking is slowed down to about a quarter of normal pace, and no thought is actually clear enough to catch and hold on to.)
On the other hand, because it takes some concentration, it does take up some of my precious energy allowance for the day. But it takes relatively little.
At the other end of the scale of mental activity - is driving. This one takes such a heightened level of concentration, that it takes out of my energy budget the same amount as a physical activity like an aerobics workout might. (OK - I wouldn't do an aerobics workout - joints would creak ominously and I'd be afraid something would snap completely. I would not want to try to explain the results to my specialist, nor would I want to live with the consequences.)
I'm OK with driving. My doctor tells me I don't need to get the special medical permit or whatever it is. I just have to know when I've had enough. (Like everything!) So if we're going somewhere together, I'd prefer if you drove, especially if it's a long way.
What I did have to do was change my old manual car for an automatic. My left side is my worst - and my left shoulder used to hate changing gears. The effort to concentrate on driving is one thing, the effort to concentrate on driving while trying to ignore the distraction of an incredibly painful shoulder is something different! (If you're reading this from somewhere they drive on the wrong side of the road - eg America - our cars are built the opposite way around to yours.)
I'm rediscovering public transport. A train, if I can get a seat and don't have to stand holding something for balance and feeling pain increasing as the journey continues, is a great way to get from place to place in relative comfort.
Train carriages do have those seats that are reserved for people with disabilities, the elderly, or pregnant people, and those seats are usually full of fit and healthy-looking people. But I don't feel confident to say to any of those fit and healthy-looking people, "You can't see it, but I have a disability and I need a seat." I'm a healthy-looking person in my 40s - how do I know those people aren't really every bit as in need of the seat as I am? I also have the experience of having caught trains when I was heavily pregnant, and knowing that the only people who would offer me a seat then were women whose level of sympathy indicated they'd been in the same position. Full credit to Queensland Rail for giving me discount fares - but that doesn't come with a sign saying "give me one of the priority seats".
If I can get a seat, the train is great.
I'm not so good with buses. That's not the fault of Brisbane City Council's bus service - I must say that. Like the trains, I get discount fares, and if I can get a seat they're usually OK. But I've had the odd experience on a bus where the driver's taken a corner sharply and I've been thrown across the seat, and had to grab something to avoid ending up on the floor. This of course, wrenches wrists and shoulders, and jars the back and hips. So, on a couple of occasions, I've gone somewhere by bus and really wished I'd taken the car. Some years back there was a move to have seat belts on all buses. I don't know whatever happened to that, but it would be a really good idea.
So blogging's great. I don't have to go anywhere. I don't have to contend with the level of concentration needed for dealing with traffic. I don't have to hang on for dear life. I don't have to stand in the sun and wonder if the bus will be on time. All I have to do is watch that the cat that keeps walking across my keyboard doesn't type some obscenity in the middle of my blog!
My son chose my netbook computer on the basis that the keys were big enough for me to type comfortably, but the whole thing was small and light enough that I could type while lying in bed. (Today, I've got as far as sitting at my desk, right next to the bed - impressive effort huh?)
While I'm blogging, my brain is working, but the rest of me is still resting. It helps to fight the boredom of fatigue, and to keep away the dreaded brain fog (where thinking is slowed down to about a quarter of normal pace, and no thought is actually clear enough to catch and hold on to.)
On the other hand, because it takes some concentration, it does take up some of my precious energy allowance for the day. But it takes relatively little.
At the other end of the scale of mental activity - is driving. This one takes such a heightened level of concentration, that it takes out of my energy budget the same amount as a physical activity like an aerobics workout might. (OK - I wouldn't do an aerobics workout - joints would creak ominously and I'd be afraid something would snap completely. I would not want to try to explain the results to my specialist, nor would I want to live with the consequences.)
I'm OK with driving. My doctor tells me I don't need to get the special medical permit or whatever it is. I just have to know when I've had enough. (Like everything!) So if we're going somewhere together, I'd prefer if you drove, especially if it's a long way.
What I did have to do was change my old manual car for an automatic. My left side is my worst - and my left shoulder used to hate changing gears. The effort to concentrate on driving is one thing, the effort to concentrate on driving while trying to ignore the distraction of an incredibly painful shoulder is something different! (If you're reading this from somewhere they drive on the wrong side of the road - eg America - our cars are built the opposite way around to yours.)
I'm rediscovering public transport. A train, if I can get a seat and don't have to stand holding something for balance and feeling pain increasing as the journey continues, is a great way to get from place to place in relative comfort.
Train carriages do have those seats that are reserved for people with disabilities, the elderly, or pregnant people, and those seats are usually full of fit and healthy-looking people. But I don't feel confident to say to any of those fit and healthy-looking people, "You can't see it, but I have a disability and I need a seat." I'm a healthy-looking person in my 40s - how do I know those people aren't really every bit as in need of the seat as I am? I also have the experience of having caught trains when I was heavily pregnant, and knowing that the only people who would offer me a seat then were women whose level of sympathy indicated they'd been in the same position. Full credit to Queensland Rail for giving me discount fares - but that doesn't come with a sign saying "give me one of the priority seats".
If I can get a seat, the train is great.
I'm not so good with buses. That's not the fault of Brisbane City Council's bus service - I must say that. Like the trains, I get discount fares, and if I can get a seat they're usually OK. But I've had the odd experience on a bus where the driver's taken a corner sharply and I've been thrown across the seat, and had to grab something to avoid ending up on the floor. This of course, wrenches wrists and shoulders, and jars the back and hips. So, on a couple of occasions, I've gone somewhere by bus and really wished I'd taken the car. Some years back there was a move to have seat belts on all buses. I don't know whatever happened to that, but it would be a really good idea.
So blogging's great. I don't have to go anywhere. I don't have to contend with the level of concentration needed for dealing with traffic. I don't have to hang on for dear life. I don't have to stand in the sun and wonder if the bus will be on time. All I have to do is watch that the cat that keeps walking across my keyboard doesn't type some obscenity in the middle of my blog!
Friday, 8 July 2022
Speed Cleaning
Our cleaner disappeared. Do people just disappear? He stopped coming and cleaning our house, and then when I tried to ring him the phone had been disconnected.
My theories are: he finally won the lottery and is travelling around the world repeatedly; aliens abducted him; or he finally realised that cleaning up after my family is not worth the money I pay him, and has changed his name and gone to live with a new identity somewhere exotic, like New South Wales. Because he's a missing person, I should give you his description: he's tall enough to reach shelves I can't reach and put things I use on them; wears the kind of daggy clothes you'd wear for cleaning house; and is the kind of person who'd buy a meat pie for his morning tea and then share it with my scavenging dog.
Given that working part time and being on a part pension, money isn't all that easy to come by, I decided now was a time to get inventive. One of my kids is officially an adult now and one is less than a year off it. A house with three adults in it should be able to be cleaned by the residents, right?
I thought I'd enlist the help of experts and bought Speed Cleaning by Shannon Lush and Jennifer Fleming. They know how to keep an entire house clean in 15 minutes per day. (Seriously.)
Clearly, they don't have lupus, and the help of a pair of teenagers who really don't want to help.
I've read the book cover to cover, several times.
Here's the thing: what they can do in 15 minutes, I could probably do in about five hours - as long as I spread those five hours over about a week. But their 15 minutes a day, is meant to be done every day - which means I would need seven weeks to do a week's worth of their cleaning methods.
This is not to say there's anything wrong with their book. I'm sure if I was healthy, I could do everything they say, and it would all be good. If you don't have lupus or some other chronic condition that leaves you fatigued, or in pain, when you do too much, I recommend you buy it. I want to give a copy to each of my kids when they leave home.
The big thing from this book that I can use, is that the best way to clean is to break things down into little bits. That fits with the lupus lifestyle. I can go and throw a load of washing into the machine, do a couple of dishes, then go lie down until the washing needs to come out of the machine. I can hang up the wash (on a rack in the laundry - saves going outside), wipe down a bench and go for a lie down. Then I can fold the previous day's washing since it's dry, sweep the kitchen floor, tell a teenager to take out the garbage and - yes of course - have another lie down. I break every job down into its smallest part, and then give myself credit every time I achieve each little part. For the big stuff, like using a vacuum cleaner - well I've got big teenagers, and it's time to teach them some life skills.
Well, that's a blog entry done.... Time for a lie down.
LUSH, Shannon & FLEMING, Jennifer. Speed Cleaning. Sydney: ABC Books, 2006.
My theories are: he finally won the lottery and is travelling around the world repeatedly; aliens abducted him; or he finally realised that cleaning up after my family is not worth the money I pay him, and has changed his name and gone to live with a new identity somewhere exotic, like New South Wales. Because he's a missing person, I should give you his description: he's tall enough to reach shelves I can't reach and put things I use on them; wears the kind of daggy clothes you'd wear for cleaning house; and is the kind of person who'd buy a meat pie for his morning tea and then share it with my scavenging dog.
Given that working part time and being on a part pension, money isn't all that easy to come by, I decided now was a time to get inventive. One of my kids is officially an adult now and one is less than a year off it. A house with three adults in it should be able to be cleaned by the residents, right?
I thought I'd enlist the help of experts and bought Speed Cleaning by Shannon Lush and Jennifer Fleming. They know how to keep an entire house clean in 15 minutes per day. (Seriously.)
Clearly, they don't have lupus, and the help of a pair of teenagers who really don't want to help.
I've read the book cover to cover, several times.
Here's the thing: what they can do in 15 minutes, I could probably do in about five hours - as long as I spread those five hours over about a week. But their 15 minutes a day, is meant to be done every day - which means I would need seven weeks to do a week's worth of their cleaning methods.
This is not to say there's anything wrong with their book. I'm sure if I was healthy, I could do everything they say, and it would all be good. If you don't have lupus or some other chronic condition that leaves you fatigued, or in pain, when you do too much, I recommend you buy it. I want to give a copy to each of my kids when they leave home.
The big thing from this book that I can use, is that the best way to clean is to break things down into little bits. That fits with the lupus lifestyle. I can go and throw a load of washing into the machine, do a couple of dishes, then go lie down until the washing needs to come out of the machine. I can hang up the wash (on a rack in the laundry - saves going outside), wipe down a bench and go for a lie down. Then I can fold the previous day's washing since it's dry, sweep the kitchen floor, tell a teenager to take out the garbage and - yes of course - have another lie down. I break every job down into its smallest part, and then give myself credit every time I achieve each little part. For the big stuff, like using a vacuum cleaner - well I've got big teenagers, and it's time to teach them some life skills.
Well, that's a blog entry done.... Time for a lie down.
LUSH, Shannon & FLEMING, Jennifer. Speed Cleaning. Sydney: ABC Books, 2006.
Tuesday, 5 July 2022
Afternoon naps
I have an afternoon nap almost every day.
I, of course, need it. I would get sick if I didn't have enough rest.
But I wonder if everyone should have a nap after lunch? If we could learn something from cultures that have a siesta in the afternoon.
Ask any school teacher: the kids are always ratty, inattentive and annoying in that first lesson after lunch. Lots of people I know have their least productive time at work immediately after lunch.
If everyone else did the same as I do, and had a nap for half and hour to an hour after lunch, we might all be less stressed, and enjoy life more than we do now.
I, of course, need it. I would get sick if I didn't have enough rest.
But I wonder if everyone should have a nap after lunch? If we could learn something from cultures that have a siesta in the afternoon.
Ask any school teacher: the kids are always ratty, inattentive and annoying in that first lesson after lunch. Lots of people I know have their least productive time at work immediately after lunch.
If everyone else did the same as I do, and had a nap for half and hour to an hour after lunch, we might all be less stressed, and enjoy life more than we do now.
Monday, 4 July 2022
Brain Fog
One of the annoying symptoms of lupus is "brain fog". At one stage when this was bad - I bought a puzzle magazine and couldn't do any of the puzzles, my kids tried to teach me to play "Animal Crossing" and I couldn't even read the map (a game designed for primary-school kids).
A week later, after a bit of sleep, and some concentration exercises, I did the whole puzzle magazine in under an hour - and I found "Animal Crossing" a cute little kids' game instead of a major frustration.
So what is it like to have brain fog? Imagine you're me for a little while.
You've woken up and are walking towards the kitchen to make your breakfast. The dog and cat appear from somewhere and wrap themselves around your feet, and look up at you hopefully. What do they want. Woof woof, meow, meow. There's something they want. Of course. They need to be fed. What do you need to feed them? Can opener. You open the drawer with the can opener. What are you looking for in the drawer? You're in the kitchen for some reason. Maybe it's to get a coffee. You take a teaspoon out of the drawer, then stand holding it, trying very hard to think of whatever else it is you need to make a coffee. Woof woof, meow meow. "Oh hi boys, do you want your breakfast? I'll get it for you now." The cans of pet food are in the laundry, you go there. What are you doing in the laundry? You get the towels out of the dryer and take them back to the lounge room to fold. You feel hungry, why? Surely you had breakfast? You can't remember whether you did or not. And the animals are following you everywhere, what could they want?
I don't get brain fog often. But I've learned some strategies to deal with it. The first is to write everything down - lists, lists and more lists. If it's not crossed off the list, it hasn't been done, I don't have to rely on remembering. The other strategy is to try to avoid brain fog in the first place - brain exercise: writing, doing puzzles, reading. Brains work like muscles in this instance - use it or lose it. (But like muscles, they get fatigued, and mine needs lots of sleep as well.)
A week later, after a bit of sleep, and some concentration exercises, I did the whole puzzle magazine in under an hour - and I found "Animal Crossing" a cute little kids' game instead of a major frustration.
So what is it like to have brain fog? Imagine you're me for a little while.
You've woken up and are walking towards the kitchen to make your breakfast. The dog and cat appear from somewhere and wrap themselves around your feet, and look up at you hopefully. What do they want. Woof woof, meow, meow. There's something they want. Of course. They need to be fed. What do you need to feed them? Can opener. You open the drawer with the can opener. What are you looking for in the drawer? You're in the kitchen for some reason. Maybe it's to get a coffee. You take a teaspoon out of the drawer, then stand holding it, trying very hard to think of whatever else it is you need to make a coffee. Woof woof, meow meow. "Oh hi boys, do you want your breakfast? I'll get it for you now." The cans of pet food are in the laundry, you go there. What are you doing in the laundry? You get the towels out of the dryer and take them back to the lounge room to fold. You feel hungry, why? Surely you had breakfast? You can't remember whether you did or not. And the animals are following you everywhere, what could they want?
I don't get brain fog often. But I've learned some strategies to deal with it. The first is to write everything down - lists, lists and more lists. If it's not crossed off the list, it hasn't been done, I don't have to rely on remembering. The other strategy is to try to avoid brain fog in the first place - brain exercise: writing, doing puzzles, reading. Brains work like muscles in this instance - use it or lose it. (But like muscles, they get fatigued, and mine needs lots of sleep as well.)
Saturday, 2 July 2022
Diagnosing Lupus
For many people with lupus, the diagnosis comes as a relief, because there are so many varied symptoms, and we begin to feel like we might perhaps be imagining it. I had lupus symptoms on and off for years - but no-one ever realised they were linked.
So how is lupus diagnosed?
The following information is summarised from: Dibner, Robyn and Colman, Carol. Lupus Handbook for Women. New York: Fireside, 1994. Pages 29 to 33.
There are 11 abnormalities commonly associated with lupus. Having any four of them is sufficient for a diagnosis of lupus. Very few patients develop all 11 abnormalities.
The 11 key points are:
1. Malar Rash - a butterfly shaped rash over the nose and cheeks.
2.Discoid Rash - a rash that looks like psoriasis, and appears after exposure to sunlight.
3. Photosensitivity - sensitivity to both UVA and UVB radiation - even fluorescent lights can affect lupus patients. (We wear sunblock 24/7)
4. Oral ulcers - can be painless, and the patient may even be unaware of them.
5. Arthritis - usually affects small joints (eg in the hands) but can also affect larger joints, and ligaments. It does not damage bone. It can be transitory or chronic.
6. Serositis - inflammation of linings of lungs, heart or abdominal cavity. (For those of us with abdominal inflammation, a diet free of gluten and lactose can help with reflux and irritable bowel symptoms.)
7. Renal disorder - kidneys with some damage, from mild (eg leaking protein into urine) to severe (losing ability to remove waste from the body). This can be associated with high blood pressure.
8. Neurologic Abnormalities - from simple "brain fog" (forgetting things, having trouble concentrating) to psychosis or seizures.
9. Haematological Abnormalities - hemolytic anemia (body makes antibodies to own red blood cells); thrombocytopenia (low number of platelets, can result in excessive bleeding); leukopenia (low white blood cell count); lymphocytopenia (lymphocyte count is low).
10. Immunologic Abnormalities - Anti-DNA antibodies (exactly what it sounds like, body makes antibodies against its own DNA); lupus erethematosus cell preparation (LE cell is in blood of 90% of lupus patients, but also in patients with other autoimmune disorders); Antibodies to Sm (antibodies to a protein found in the cell nucleus); false-positive sereologic test for syphilis (some lupus patients produce antibodies similar to those produced by patients trying to fight off syphilis.)
11. Antinuclear Antibodies (ANA) - about 95% of lupus patients are positive for ANA (antibodies to cell nuclei), but a positive ANA can also be associated with other autoimmune diseases.
So how is lupus diagnosed?
The following information is summarised from: Dibner, Robyn and Colman, Carol. Lupus Handbook for Women. New York: Fireside, 1994. Pages 29 to 33.
There are 11 abnormalities commonly associated with lupus. Having any four of them is sufficient for a diagnosis of lupus. Very few patients develop all 11 abnormalities.
The 11 key points are:
1. Malar Rash - a butterfly shaped rash over the nose and cheeks.
2.Discoid Rash - a rash that looks like psoriasis, and appears after exposure to sunlight.
3. Photosensitivity - sensitivity to both UVA and UVB radiation - even fluorescent lights can affect lupus patients. (We wear sunblock 24/7)
4. Oral ulcers - can be painless, and the patient may even be unaware of them.
5. Arthritis - usually affects small joints (eg in the hands) but can also affect larger joints, and ligaments. It does not damage bone. It can be transitory or chronic.
6. Serositis - inflammation of linings of lungs, heart or abdominal cavity. (For those of us with abdominal inflammation, a diet free of gluten and lactose can help with reflux and irritable bowel symptoms.)
7. Renal disorder - kidneys with some damage, from mild (eg leaking protein into urine) to severe (losing ability to remove waste from the body). This can be associated with high blood pressure.
8. Neurologic Abnormalities - from simple "brain fog" (forgetting things, having trouble concentrating) to psychosis or seizures.
9. Haematological Abnormalities - hemolytic anemia (body makes antibodies to own red blood cells); thrombocytopenia (low number of platelets, can result in excessive bleeding); leukopenia (low white blood cell count); lymphocytopenia (lymphocyte count is low).
10. Immunologic Abnormalities - Anti-DNA antibodies (exactly what it sounds like, body makes antibodies against its own DNA); lupus erethematosus cell preparation (LE cell is in blood of 90% of lupus patients, but also in patients with other autoimmune disorders); Antibodies to Sm (antibodies to a protein found in the cell nucleus); false-positive sereologic test for syphilis (some lupus patients produce antibodies similar to those produced by patients trying to fight off syphilis.)
11. Antinuclear Antibodies (ANA) - about 95% of lupus patients are positive for ANA (antibodies to cell nuclei), but a positive ANA can also be associated with other autoimmune diseases.
Friday, 1 July 2022
Discovering DORA
Have you ever been curious about just what medical research is going on?
The Office of Health and Medical Research (OHMR) has a new publicly-searchable database called DORA (Database of Medical Research).
DORA takes information submitted to the Medical Ethics Committee (which oversees all medical research in Queensland Health). At the moment, the database is quite new, which explains why there's nothing about any research into lupus or other autoimmune diseases on it yet (I'm refusing to believe no-one in the state is researching autoimmune disorders). Over time, it will come to reflect all of the research going on in Queensland Health.
The idea is to give information to researchers - so they can see who else is working in the same area and collaborate more effectively - and also to patients.
DORA gives information on what research is happening, who is conducting it, and when it's due to start and finish.
If you want to take a look, you can find DORA at http://access.health.qld.gov.au/DORA/view/search.aspx.
The Office of Health and Medical Research (OHMR) has a new publicly-searchable database called DORA (Database of Medical Research).
DORA takes information submitted to the Medical Ethics Committee (which oversees all medical research in Queensland Health). At the moment, the database is quite new, which explains why there's nothing about any research into lupus or other autoimmune diseases on it yet (I'm refusing to believe no-one in the state is researching autoimmune disorders). Over time, it will come to reflect all of the research going on in Queensland Health.
The idea is to give information to researchers - so they can see who else is working in the same area and collaborate more effectively - and also to patients.
DORA gives information on what research is happening, who is conducting it, and when it's due to start and finish.
If you want to take a look, you can find DORA at http://access.health.qld.gov.au/DORA/view/search.aspx.
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