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.

Participation Award

Have you ever heard people complain about little kids getting "participation awards" when they don't win competitions?

They'll say things like: "I never got an award for just turning up."

Well, I never got an award for just turning up either, and I really think some days I deserve one!

I think all lupies have those days, when just getting out of bed is an award-winning performance.

We all have times when if we manage to smile and say, "I'm fine," through all the physical pain we're in, we should get a Logie.

Some days, we deserve Olympic Gold, for walking down our own hallway.

Some days, we should get an ARIA award for opening our mouths and not screaming in pain.

Some days, the artwork involved in make-up to change a rash-covered death-mask into a "normal" face is deserving of an Archibald.

If you coaxed a sore, tired, complaining body out of bed this morning, you deserve an award.

If you took part in today in any way despite pain, fatigue, brain fog, depression and rashes, you should get a round of applause.

If you did something to care for someone else today, despite being barely able to care for yourself, you should be Australian of the Year.

Pat yourself on the back (or get someone else to do it - arthritic shoulders don't like to reach like that.) You deserve all the awards.

Hip! Hip! (The good hip, not the bad one.) Hooray for you!

You are amazing.  Don't ever forget it.

(Note: for overseas readers - a Logie is an acting award, an ARIA award is a music award, and the Archibald is a portrait-painting prize.)

Anti-Arthritis Packaging.

I'm having a little rant about an everyday problem suffered not only by lupies, but by everyone with
weak or sore joints in their hands - anti-arthritis packaging.

You know what I mean.

Even people who don't have weak or sore hands struggle with it.

It's the pill bottle for your sore joints, that you can't get the lid off because of your sore joints.

It's the five thousand cable ties  pulled so tight you can't get a pair of scissors into them to cut them.

It's the completely sealed ultra plastic that you need a knife, scissors, scalpel, chainsaw, lightsabre and atomic bomb to open.

Today, I discovered a new level of hell in packaging.

I ordered a gizmo to help me pull weeds out of the garden.  If it works, I hope to be able to, over time, get the mass of weeds out of my herb and rose gardens. It doesn't require bending or much strength to get the weeds out roots and all.

You might think that the manufacturers of such a product would stop to think that the type of people who might want to buy it could be people who can't bend much and maybe don't have a lot of strength - maybe people with arthritis.

If you were selling this and wanted to be kind to your customers, you might want to consider that in your packaging.

You might.  Or then again, you might make the packaging of a plastic and cardboard combination that you can't cut or tear and then screw it, very securely, to the product itself.

Now I have a product I bought to make me a little more independent, and before I can use it, I have to ask my son to open it for me.

The News You Were Waiting For

My ankles don't hurt.

You were just desperately holding out, waiting for that news, weren't you? It's made your whole day just to know about it.

Well, it really has made my day.

Far too much of my life is influenced by fatigue and pain.  If I have an improvement in one or the other, it's worth celebrating.

Since my "new" now "ex" rheumatologist reduced my medications, I've had a lot of bad pain and fatigue days.  (I haven't got my appointment with my original rheumatologist yet.  Yes, I will do something about it soon.)

I've been looking for other ways to help control pain.  I have used tens machines for a while now.  I have one large one that plugs into the wall, and a smaller (less powerful) battery operated one I can use while I'm out.

I recently bought a heated massager that goes on the couch (I couldn't afford the actual massage chair.)  That helps a little - it's certainly a little better than just a hot water bottle.

Today, I tried my new foot spa for the first time.  Why soaking my feet in bubbly water for an hour makes a difference, I don't know.  What I do know is that my ankles stopped hurting, and were pain-free for the next two hours after the foot spa.

As I write, the pain is coming back, but that's OK.  I got two good hours of being able to play fetch with the dog, and do some washing and dishes, without the standing making my ankles scream in agony.

Two hours pain-free (well in that joint), with only an hour of preparation to make it happen?  I'll accept that as a good deal.

Now, I need to work out how to get my bad shoulder into the foot spa.



Do you have favourite methods for temporary pain relief?  Tell me about it in the comments.

Supermarket

I went to the supermarket on my own today.

That's right, I went out in public, totally unsupervised.  There's no way that could end badly, is there?

I was fine until I started to get tired and sore.

That happened a little faster than usual, because I was pushing the trolley.

Once everything was in the trolley, I was more than relieved to line up at the checkout. I waited patiently for my turn.

When I was finally at the head of the line, the checkout operator looked at my trolley and just said: "That's more than 15."  I hadn't realised I was in the express lane.

I went on to another long line and had to wait again.  Since my hips, knees and ankles were already hurting, standing in line was quite painful.

At last I made it to the carpark.  When I got home, I found my son had arrived before me so was able to take the shopping inside.

All I had to get from the car was my handbag and .... no walking stick.

I can remember having it as I pushed the trolley to the car. After that?  I have no idea whatsoever.

I rang the shopping centre, and it hasn't been found and handed in.

It looks like a need to go shopping for another stick now. I'll wait until someone's free to go with me.

It's The Worst

Lupus bites!

It just does.

I hate all of it: the pain, the fatigue, the limitations on what I can do, the constantly swallowing pills, the risk that any organ could suddenly fail, the avoiding sunlight, etc, etc, etc.....

But for me, the absolute worst, the one thing that just tops everything else for horror, is that my brain doesn't work the way it should.

I've always considered my brain to be the best part of me. I'm intelligent, I'm creative, I've always had a great memory.

But now....

Now, I do and say stupid things. I was holding the baby the other day, talking to her, when my daughter interrupted: "Ah Mum, that's not me, that's Johanna."  I knew that, right? I know that my daughter is 22, and the four month old is her daughter. Well, I do right at this moment.  At that exact moment I was a little lost.

I hate not being able to lead worship - and worse I hate that the last time I did, the sermon I'd written suddenly didn't make sense and the words all seemed to be gobblydegook and I didn't know what to do about it.

I'm not particularly keen on hallucinations, either.  Seeing a strange woman without a face in my flat was disconcerting, to say the least.

Writing is just a part of who I am, and it has been since I started writing stories as a child. But now, half the time I can't spell, have trouble with punctuation, and write ungrammatical sentences.

I have trouble organizing my thoughts, and even more trouble organizing myself to do anything.

So that's the absolute worst for me.... messing with my body was bad enough, but once lupus started messing with my brain, things just became far too frightening.

But that's just my experience.

The one thing that's consistent with lupus is its utter inconsistency, so I asked some lovely lupies on social media what was worst about lupus in their experience.

For lots of people, the pain and fatigue were the worst thing.

For others, it was things they had lost: their jobs and income, their homes, their independence, the ability to do things they used to love, even some friendships.

For some the worst is the cost of managing lupus, some with insufficient health insurance or no health insurance at all.

For some the worst was the unpredictability of lupus - of not being able to plan because there's no way of knowing in advance what will be a good day and what will be a bad day.

For lupie mums, feeling that they're not able to care for their children the way they want to, even being in too much pain sometimes to hold their own babies, is the worst.

Some lupies have other health issues as well, throw in cancer or something equally horrible, on top of the horribleness of lupus and you have a nightmare Stephen King couldn't have scripted.

For some lupies, the vampire life of avoiding the sunlight is a huge sacrifice, especially if they have children who want to do things outside.

Some have found the mental health issues that are often a part of lupus - anxiety and depression - are the worst thing.

For a number of people, the worst thing was becoming isolated.

One lupie who answered, said the worst was when she wasn't diagnosed and didn't know what was happening to her.  Knowing what was wrong and beginning treatment had come as a huge relief.

Some of the people who responded were friends of lupies, who found the worst things were:when their friend forgot they'd been there for them; when they had to watch their friend go through the pain and fatigue; or when they lost a friend to lupus.


As I said at the beginning, lupus bites.

With bodies that don't bend where they used to, pain in places we'd never known we had places, fatigue that makes Sleeping Beauty's 100 year nap seem reasonable, the uncertainty of whether or not we'll be able to do tomorrow what we can do today..... there's a lot that's bad.  But the absolute worst? That's different for all of us. And it's different on different days. Because that's how lupus is. The only thing that's consistent about it is its utter inconsistency.


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Lupus Hands

I've been thinking about my hands....

My hands used to hit boards and break them,
Now they drop plates and break them.

My hands typed the final draft of a Masters' Thesis in a couple of days.
Now a blog post leaves them tired.

My hands used to be able to play guitar for hours,
Now they last a few minutes, and hit wrong notes when the fingers don't stretch quite far enough.

My hands used to be constantly moving, creating, doing craft, painting, drawing.
Now they do a little and get sore and need to rest, and none of the work is as fine and as detailed as it used to be.

My hands used to be able to lift and carry things.
Now I use a Kindle because so many real books get too heavy for my hands to hold after a while.

My hands, like most of my body, got old far too young.

Shoes Is Shoes - But The Issue Isn't Just Shoes

Back in 2011, I wrote a post, De Agony of De Feet, complaining about not being able to wear
beautiful high-heeled shoes, or shoes with even slightly pointed toes, or basically any even slightly attractive shoes at all.

Yes, I hate that I can't just go to a regular shoe shop and pick any shoe that I like. When I go to the chemist and shop for shoes in the Homey Ped section, and then have to buy D or D+ (when even their attractive shoes are never any wider than C), I find myself thinking that I got to be an old woman far too young.

But there's more to the shoe issue than feet and shoes.

There's a thing ministers encounter in pastoral care. People talk for a while, but just as they're leaving say "by the way..." and then the real issue that's bothering them comes out.  It's a common thing, it even has a name in pastoral care textbooks, but I can't tell you what it is because my lupus-addled brain doesn't retain that kind of information any more.

If you'd like to go and read the original post, I'm happy to wait here.....

You're back?

OK then, well, by the way...

Yes, I do miss beautiful shoes, but there's more to it than that. Lupus has messed with just about every part of my life.

I don't just miss shoes.

I miss my profession.  I miss feeling like a useful, contributing, member of society. I miss paying taxes to support other people's pensions.

I miss only visiting the doctor once in a while.

I miss being able to go out without spending a week recovering.

I miss going out without carrying a pile of tablets, just in case I'm out longer than expected.

I miss just walking instead of having a limp which reduces to a hobble after the first five minutes of walking.

I miss my sport (I did martial arts).

I miss having a body that just did things, and wasn't bloated up on steroids.

I miss my memory. I miss knowing what day of the week it is, where my keys are, the name of the person I'm talking to, and what we were talking about.

I miss being able to plan things, and then do them. (Rather than discovering at the last minute that I'm too sick.)

I miss being able to drive a manual car, that didn't have power steering.

I miss being able to use the stairs.

I miss so much that lupus has taken away from me, including the shoes.

Queensland Government gives $1.25 Million to Research

So thrilled when the following media release was forwarded on to me.

The State Government has given $1.25 million to an arthritis researcher who is working on Rheumatoid Arthritis (RA) and tuberculosis (TB).

Hopefully advances in understanding RA will also help people with lupus and other forms of arthritis.

Following on from the recent decision to join in with the rest of the country in Disability Services Australia, this government is starting to look like it might actually care. (Of course, there have also been cut-backs in Queensland Health, but we can't have everything.)

I'm reproducing the media release in full (not the kind of thing I used to do as a journalist) because this is something I think is quite important to all of us.

JOINT STATEMENT Premier The Honourable Campbell Newman Minister for Science, Information Technology, Innovation and the Arts The Honourable Ian Walker

Premier’s Science Fellow to help arthritis sufferers An expert on genes that increase the risk of common human diseases was today awarded the Queensland Premier’s top science prize. Professor Matthew Brown from the University of Queensland Diamantina Institute was awarded the prestigious $1.25 million Premier’s Science Fellowship to advance the diagnosis and treatment of rheumatoid arthritis and tuberculosis (TB). Premier Campbell Newman congratulated Professor Brown on his award and thanked him for his remarkable work that was positioning Queensland as a global leader in genetic research and diagnostic testing. “This Fellowship allows Professor Brown to progress his gene-mapping research in ways that will benefit not only our health but also Queensland industry,” Mr Newman said. “He already has three patents for tests to diagnose a related condition, ankylosing spondylitis (AS)—a severe type of arthritis affecting more than 80,000 Australians—and his genetic findings have led to trials of new treatments for AS.  “Over the next five years Professor Brown will use the fellowship to identify the genes underlying the causes of rheumatoid arthritis and tuberculosis and develop better diagnostic tests to screen for them.” Professor Brown said it was a great honour to win the Premier’s Science Fellowship. Professor Brown trained as a physician specialising in rheumatology but was unhappy with the limited treatments he could offer patients so he switched from clinical practice to researching the condition. “The techniques we are developing have real commercial possibilities and healthcare benefits. We expect to roll out affordable diagnostic tests within five years, paving the way for new treatments targeting the root cause of the diseases,” Professor Brown said. “Rheumatoid arthritis affects 2.5 per cent of Queenslanders and more than 513,000 Australians and there are no treatments to prevent the disease or induce remission.  “The increasing incidence of tuberculosis is also a concern, particularly the cases of multidrug resistant TB arriving in Queensland from Papua New Guinea and the Torres Strait islands.” The Queensland Government’s $1.25 million investment, which is matched by The University of Queensland, reinforces the government’s commitment to working with universities to support scientific research that delivers real benefits to the community. [ENDS] 16 May 2013

I Passed The Test

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I passed my bone density test!

One of the risks of long-term prednisone usage, is that it can reduce bone density.

I'm glad my rheumatologist has been monitoring my Vitamin D ever since I started taking steroids. I've been taking Vitamin D supplements the whole time, and regular blood tests have been used to make sure I'm taking the right amount of supplement.

I've heard that there's more than one way to do a bone density test, mine was basically an xray. I was asked to lie on a table, with my legs raised on a block and an xray machine passed over my torso.  My feet were then put flat on the table, toes pointed inwards and the xray machine passed over again.  The test was non-intrusive, and over in a couple of minutes.

Despite my normal bone density result, my GP and I have discussed, and are now beginning, weaning me off my steroids. This isn't because of any harm the steroids are doing, but to make it easier for me to lose weight.

I weigh about 90kg at the moment, and my healthy weight range is about 55-60kg.  My rheumatologist wants me to lose the excess, because excess weight adds so much extra stress to my joints.

It's very hard to lose weight while taking steroids. So I'm going to very slowly come off them.  Each fortnight, my dose will reduce by .5mg/day. Hopefully, my other medications, and time on the tens machine will keep keep my lupus symptoms in check. I might end up having to deal with a little extra pain, but hopefully that will be the worst result.  And if I can lose the weight, that will help with my pain levels long-term.

It's a tough time to try to lose weight.  This month I have my birthday, World Lupus Day, Mothers' Day and my daughter's wedding.  That's a lot of eating out, but if I'm careful, and with the steroids being reduced, I should still manage to lose some weight.

Back In The Pool

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Well, after months of not going, I finally went back to hydrotherapy.

It hurt a bit, getting joints moving, even with the support of the water. I spent three-quarters of an hour in the pool, and had a thorough work-out. (Or as thorough as I get.)

I found that after so long away from the pool, one set of ten repetitions of each exercise was as much as I could manage.

Today, my joints aren't hurting as much, and have a better range of movement than they've had for a while, but I am incredibly tired. It's always a challenge to balance the energy budget.



For a basic introduction to hydrotherapy exercises, see my earlier post: Hydrotherapy.
To understand my concept of the energy budget, see: The Energy Budget.

Hip... Hip... Hooray

Everything hurts today, especially my hips.

It was grocery day yesterday.

My son comes with me and pushes the shopping trolley, and I use an app from the supermarket on my phone which tells me which aisles each item on my list is in, so it's a quick trip.

Even so, by the time I left the shopping centre, I could barely walk.  My left hip was so sore, each step was agony.

So today is a day on the couch. The groceries are still on the dining table, not yet put away, and yesterday's dishes are not yet done.

I find, even knowing that it's this stupid disease, that I still feel like some kind of failure when normal, everyday activities are more than I can manage.

Limping through the shopping centre yesterday, I imagined, with dread, reaching the point of needing a walking stick. Hopefully, that's a long way off. I already feel a failure, how much worse will it be if I need help even to walk?

Hydrotherapy

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Someone just asked me about hydrotherapy exercises.

Hydrotherapy is exercises done in a heated pool. The water helps provide support, and the warmth also makes a difference to painful joints. I find hydro exhausting, but it does help ease joint pain, and to loosen up stiff joints a little.

To get my hydrotherapy program, I went to a physiotherapist to have exercises tailored to my needs - and I'd recommend anyone else to do the same.

To give you an idea of the kinds of exercises involved, here are some demonstrations from Gary Moller on You Tube.

Exhausted

The coffee walnut cake.

Just at the moment, I'm sure I can feel every single cell in my body - and they're all sore and tired.

My daughter turned 21 yesterday. (For me, the 11th of September is about my little girl, whatever it means for the rest of the world.)

Monday, I spent making her birthday cake. There was a time when making a cake was just something I did when I was doing other things.  Now, it's an entire day's project.

She wanted a coffee cake - something I didn't have a recipe for. I used a basic butter cake recipe (gluten free, so I could share it), and instead of the milk, used a mix of low-fat Greek yoghurt, and espresso. I added in a handful of chopped walnuts for some extra flavour.

Yesterday, I had a meeting for work in the morning, and dinner at a restaurant for her birthday last night.  It was a good night.  The food was good, the atmosphere was good.  But by the end of the night, everyone could see I was struggling. (Even my ex-husband noticed that I wasn't well, which is astounding.)

Today? Well, I had to get up and eat breakfast so I could take my pills. Now, I'm going back to bed. I'm cancelling today. Maybe tomorrow, I'll actually have a day.

Plans Change

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I woke up this morning, hitting about an eight on the pain scale.  By the time I'd had breakfast so I could take my pills, and swallowed some extra pain relief, it was down to about a six or seven.

I was meeting a friend this evening. I texted him to say  I wouldn't make it. We haven't been able to catch up for a while, and he was keen to meet up anyway. Would I like to just watch a DVD instead of going out?

I said no, what I wanted to do was curl up and die.

He texted back,  maybe I'd feel better later in the day, he'd text this afternoon to see if I was up to going out.

I replied that my joints were in so much pain I was vomiting - that wasn't going to be better by tonight.

I feel guilty when I have to cancel plans with friends because of pain or fatigue. It's bad enough without people doing their best to "convince" me I'm going to be OK.  I've had lupus long enough to know that  if I'm this sick in the morning, the rest of the day isn't going to improve a lot. To have any hope of things being better tomorrow, I need to take things easy today.

Good friends know I'll try to make it up to them when I'm better. But some other people just don't seem to understand.

How Do You Roll?

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This Month's Patients For A Moment Blog Carnival asks:

How do you roll? What do you have to do to travel or just get around?

The person hosting this month, had been through the most horrible experience with airport security in the USA. I've never had anything quite so horrible happen to me, but lupus has changed things.

One of the great pleasures of my life has always been driving - not in traffic - but long-distance  country driving.

I learned to drive on dirt roads - and for years when I worked as a journalist in north-west Queensland, it was nothing to drive six to eight hours each way for a story. And I could go from driving my V8 Falcon (back in the days when it was possible to buy fuel for a V8 Falcon without taking out a loan), to the newspaper editor's automatic car that just about drove itself, to the manual ute that deliveries used, without thinking. I could drive just about anything, just about any distance.

Post-lupus I've had to give up driving a manual car - I had to buy an automatic, because changing gears  causes excruciating pain in my left shoulder. (If you're in America and trying to work that out - we drive on the  left-hand side of the road here and so change gear with the left hand.) When I went to an automatic transmission, I also went to power steering. Even with a car that is easier to drive than anything I've ever owned before (and twice as expensive as anything I've ever owned before), I still can't drive long distances - because apart from pain, I have an issue with fatigue. I just get tired too easily.

Distances I used to walk, I now drive. Distances I used to drive easily, I now take the train.

And of course there's an issue of where to park. I don't qualify for a disabled parking permit, because I don't need any aids for walking.  (I could get a walking stick, but seriously, what would I hold it with when my wrists and shoulders are just as sore as my knees, hips and ankles?) Most of the time it's not a problem, but at those times of year when the sales are on, and the nearest available parking space is so far away that the shopping centre is a vague dot in the distance, the walk just to get in the door can leave me too exhausted to get into the shop and buy whatever I went there for anyway.

Taking a train also has a challenge - wherever possible I avoid travelling at peak times.  Because I don't look sick, no-one is going to offer me their seat. My co-ordination,  balance, and the pain in my joints, means that it's really not a good idea for me to be standing on board a moving train. So, if it's possible, I plan to travel at a time when I know there's enough seats available.

A Pleasant Surprise

"Birthday" Celebration in Church today

It's almost 5pm and I've come to a sudden realisation - I'm not in pain.  I haven't been in pain all day.

The sulfasalazine must be starting to work.

I'm still tired and nauseas.  But to be fair - I've only had a half hour nap today. I was up at 6.30am to get ready for church. It was the 35th anniversary of the Uniting Church in Australia, and my son and I went in early to surprise everyone by having the church decorated for a birthday party.  Since church and morning tea, I've been shopping with my son, and been out for coffee with twice (with different friends). And I went to bed late last night because I was making birthday cake.  So maybe I've earned being tired at the moment.

The nausea's annoying, but it's not as bad as it was earlier in the week when I started the sulfasalazine.

All in all, I've got to say, it's been a surprisingly good day.  I think I'll have a little nap before I cook dinner. And hope for more good days to come.

Health Writer's Month: Painsomnia

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Today's Health Writer's Month topic is: Third person post. Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue.


Hmmmm stand back and write about myself as if I was someone else? This could be interesting (or quite boring, or maybe even disastrous). Oh well, let's give it a go.


Painsomnia. She knew the term, had known other lupies to use it. She'd even had a few nights where pain had interrupted her sleep - but never this bad before.

This night it was her ankles. They felt as if they were the size of beachballs. The pain was so intense, she wasn't really aware of any other part of her body.  Deep breaths. Try to relax.

Her own breathing, the snoring of the elderly dog beside the bed, the purring of the cat beside her feet, the hum of the airconditioner, the scratching and scrambling of some night animal outside the window. Why did they all seem so loud tonight? Surely the sounds were the same every night.

"Relax" she said out loud, "relax".  Her ankles didn't hear, or didn't want to obey.

She had to do something! To do something, anything meant getting out of bed - meant using those same traumatised ankles to hold her bodyweight.

Pain pills. She could take some meloxicam - hadn't had it for a couple of days.  All she had to do was walk to the kitchen.  Every step was agony. Her feet were swollen as well as her ankles, the pile of the carpet felt like needles sticking into her feet. In the half-light she found the appropriate pill, and took it with a glass of water that seemed extra-cold. She padded gingerly back to bed.  Somewhere in the back of her mind she could hear the almost-forgotten voice of a deportment teacher saying: "A woman doesn't walk into a room, a woman glides into a room." Not tonight. Tonight, just making it where she was going was enough. Gliding could wait for some time when her ankles felt like ankles.

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Lying awake.... Hoping for the meloxicam to kick in.... Her stomach started to churn - meloxicam without food will do that to you. Her ankles were still screaming at her. The airconditioner, the snoring dog and the purring cat were all getting louder. So much noise! So much pain!

 A hazy thought forced its way into her mind - ankle supports. Somewhere she had elastic ankle supports. She hadn't used them for ages - wary of putting elastic around her ankles when she had a condition where circulation could become a problem. But now she was beyond the point of desperation.

It meant getting up again. She tried to delay it, tried to think of anything other than the pain. But it was inevitable. Once she'd had the thought she would have to act on it. Again, the torture of the harsh pile of the carpet attacking her tender swollen feet. She searched in the half-light, not wanting to turn on lights and disturb the animals for fear that she would have to go to some effort to get them (particularly the geriatric dog) settled again.

Eventually she found them.

There was something reassuring, comforting, in just having her sore swollen ankles compressed in the elastic.

She lay back. "Relax, breathe deeply," she told herself.

The cat moved and leaned against her right ankle and foot. The soft purring was actually soothing.

Slowly, the pain eased. The night sounds of her bedroom became comforting and familiar once more. Gently, she relaxed into sleep.

This post was written as part of Wego Health's Health Activist Writer's Month Challenge.

Health Writer's Month: Random Phrase.

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Today's Health Activist Writer's Month Challenge Prompt is:

Open a Book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.


So, firstly, let's choose a book. The one I was reading while waiting to see the doctor this morning was:

Hunter, Dr David. Living With Arthritis: the Complete Self-care Guide. Sydney: ABC Books, 2006.  (Amazon doesn't have it listed, so I can't give you a link.)


Let's grab a sentence from page 127, on exercise. Regular, moderate exercise offers a whole host of benefits to people with arthritis, the most important being that it replenishes lubrication to the cartilage of the joints and can reduce stiffness, pain and swelling; it builds strong muscles around the joints and increases flexibility and endurance; and it can decrease bone loss.


All good stuff.  I have a love-hate relationship with exercise. I hate it when I'm not allowed to do the exercise that I used to love.

I loved martial arts - I did judo as a kid and taekwondo as an adult.  Both of these are excellent forms of exercise - they work on stamina, strength and flexibility - all the areas exercise is supposed to cover. They also require a body that actually works properly. You just can't play a contact sport when you have lupus (well, at least it's not advisable to do so.)

 What comes immediately to mind is using my entire strength to kick a kick pad, at chest height, over and over and over again, why the coach yelled: "Come on Iris! Crunch it out! This is for the nationals!" I'd be flat out doing a round kick at knee height now. I'd be flat out doing a front kick (which doesn't require anywhere near as much hip flexibility) at knee height.

From taekwondo, I went to the more ladylike Curves. I loved the Curves workout. It's circuit training, but with their Curves Smart program, everyone carries a little smart card to plug into each machine as they come to it.  The computer knows everyone's individual capability and keeps everyone working at their own set level.  It was a combination of resistance and cardio workout, with a stretching program to cool down. Again, an all-round exercise program, and this one was tailor-made for the individual.

Then came the fateful day when my specialist said I had to reduce the amount of steroid I was taking.  "But, but, but," I stammered, "what about my exercise?"

That's when I got my lecture about how much I was doing. That whole "use it or lose it" thing works for most people.  With lupus, there's a big risk that if you over-use it you lose it, so my rheumatologist told me. (Of course, he may have just made that up to be mean because he knew how much I loved Curves!)

Didn't I need exercise?  He recommended I do hydrotherapy instead.

Wego Health:
 Health Activist Writer's Month Challenge

So now, I've started my new exercise program.  I've been to the physiotherapist, and have a tailor-made individual work-out plan. And I drive to a heated pool to get in and walk backwards and forwards and side to side. Move my arms and legs in the water, and generally have a play around.  It all seems so simple, except that with my steroids down to such a low dose, it's as hard as a workout at Curves used to be when I was on the higher dose of steroids, or taekwondo training was when I was healthy.

Food and Inflammation

Someone suggested to me that I investigate what foods help reduce inflammation - and suggested a particular supplement that she had heard was really good.

So I started reading. The references links below will give you an idea of the wide variety of views that are out there.

There's a lot of myths. If you want to see most of the myths and the actual scientific response to them, check the food myths link. Almost anything can be considered an anti-inflammatory food by someone, but the actual research doesn't back a lot of it up.

If you type "food and inflammation" into Google, you'll get endless options. You can read through it all if you like. There's been an Inflammatory Factor list made up to describe the inflammatory effect of various foods - but unlike the Glycaemic Index, it doesn't appear to have any stringent research behind it. (I'm open to being corrected on this - but I have looked and not found the actual research behind it.)


So what have I learned?  The sites that actually seem to rely on the most solid research encourage the same kind of diet that my Thursday night weight loss group is working on: low in saturated fats, low GI, high fibre, lots of fresh foods.

The other thing to bear in mind is that there is a definite link between weight and inflammation. Excess weight makes inflammatory disorders like lupus worse. (There's also signs that inflammation can contribute to obesity.)


So if you want an anti-inflammatory diet, here's some basic tips, that pretty much all the sites would agree on, without some of the more radical suggestions.

1. If you have any food allergies or sensitivities (eg gluten, lactose), avoid the foods that you know make you sick. (If you have persistent reflux or irritable bowel, and haven't ever checked with your doctor, it's a good idea to ask if something like gluten or lactose could be at fault.)
2. If you're eating red meat, cut off the fat. Go for pasture-fed red meat, rather than grain fed. Grain fed has fat marbled all through it, that you can't see. 
3. For poultry, remove the skin.
4. Fish, especially oily fish, is good. Just don't ruin it by deep frying, or something gross like that. (Fish oil capsules are also good - although the amount my rheumatologist has me taking should cause me to grow gills.)
5. Dairy products are a great source of nutrients of calcium, but also a source of saturated fats, so keep to sensible serves, and opt for lower-fat varieties.
6. Beans, peas, lentils - all kinds of legumes or pulses - are very good for you. They're low GI, low fat, high fibre, and full of nutrition.
7. Fresh fruit and vegetables are good for you too. Remember that vegetables are colour-coded you want a variety of different coloured vegetables every day.
8. Nuts, avocados, seeds, olives, etc are a great source of healthy fats. If you're watching your weight, be careful of serving sizes, because they are very energy dense.
9. Go for monounsaturated oils like olive oils instead of saturated fats (usually animal fats) or polyunsaturated oils. Avoid trans-fats.
10. Choose whole grains ahead of refined grain products. Pasta is OK but be careful of the company it keeps!
11. If you eat food as close as possible to its natural state, you will have the benefit of the fibre, and it will usually be lower GI, with less salt, fat and other nasties added.
12. Following on from point 11, foods with numbers listed as ingredients are not really good. I love the explanation I heard my 18 year old son giving to a 10 year old:  "You can't eat numbers. Numbers are math, not food. Math is always bad for you."
13. Grill, steam, microwave, stir-fry, oven-bake without fat. Don't deep fry your food.
14. If weight is an issue with your health - keep your portion sizes sensible, for everything you eat.

References:
http://www.arthritissupportboard.com/Diet_in_Arthritis.aspx
http://www.arthritistoday.org/nutrition-and-weight-loss/healthy-eating/food-and-inflammation/index.php
http://www.arthritistoday.org/nutrition-and-weight-loss/healthy-eating/food-and-inflammation/food-myths-arthritis.php
http://www.arthritistoday.org/nutrition-and-weight-loss/healthy-eating/food-and-inflammation/fiber-inflammation.php
http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet
http://www.eatright.org/media/blog.aspx?id=4294968470&blogid=269
http://inflammationfactor.com/
http://www.ncbi.nlm.nih.gov/pubmed/20410248
http://nutritiondata.self.com/help/inflammation
http://theconsciouslife.com/top-10-inflammatory-foods-to-avoid.htm
http://www.womentowomen.com/inflammation/causes.aspx