Showing posts with label PFAM. Show all posts
Showing posts with label PFAM. Show all posts

Tuesday, 13 May 2022

A Moving Experience

I'm packing to move house. Again.

Hopefully, this will be the last time.

You may remember that a short while ago, I asked lupies what they would do if they had one great big bucket of money to do something for their health.

My own answer was that I'd buy a house, which had a granny flat for me and would be able to house the rest of my family, or a carer's family. The idea was that I could continue to be as independent as possible, but there would be help close at hand if I ever needed it.

Since doing that post, I've been working on how I could make it a reality. You see, my family was keen to have the same thing: a home that really was ours, where we could all have our own space, but be there for each other if needed.

After lots of searching, a very disappointing call to the Qld Housing Department's home loans section, and a lot of daydreaming and scheming, we came up with something.

My superannuation has been paying me a pension - but I've always had the option to commute a part of that pension to cash - to get a lump sum of money in return for a reduction in income. That's what I've done.  I've taken a reduction in my superannuation income, so as to be able to have a home.

The house we've found is perfect.  It has two storeys.  My daughter and her husband and their daughter will have a three-bedroom house upstairs. My son and I will have a two-bedroom house downstairs.  The part I will live in is flat.  If I find I am going up and down the stairs a lot, we can look at installing a stair lift (because it's our house, not a rented house, and we can do what we want with it.) Downstairs also has a large rumpus room that can be an arts and crafts studio and office space, something I've always wanted.

It's a big risk. But most of the big things we do in life involve big risks.

One risk is that I will have a bout of brain fog and sign something I regret, or order three different electricity suppliers or none, or do something that makes the whole contract fall through.  This is where my family's invaluable.  I'm not doing anything on my own.  All the phone calls I have to make, someone else is with me, keeping track of things I might forget, finding easier ways to do things. We're sharing the work, and helping to keep each other organised.  All of the paperwork, someone else reads as well as me. Everything that happens that I have to remember, I tell everyone in the family. Everyone else's brains are working to cover for any brain fog I have. Even going to the shops for bits and pieces for packing, I have someone with me who can tell me if I'm getting vague and declare a rest break. Whenever a problem comes up, we talk it out until someone works out a solution.

Another really big risk is that I will end up with a major lupus flare from the work involved in moving. We started packing early, as soon as I signed the contract.  Packing very slowly means I'm not under as much physical pressure. I'm breaking the big job down into very small jobs.  I want to do my fair share of the packing, but I know if time gets tight, the family will be there to help. At the other end, unpacking can take as long as it takes. If I only unpack a box a day, I'll still get through them eventually.

Of course, sometime very soon after we move in, we'll need another trip to Ikea, and you know the risks involved there.  That always takes me at least a week to recover, with the risk of a flare no matter how careful I am.

One risk I really can't control is that the distance we're moving (we had to go a long way to find somewhere affordable) means that it will make sense for me to get a new GP.  Having been with the same doctor since before I was diagnosed - this is probably the scariest part of the transition.  There's a risk I won't find a doctor anywhere near as good as the one I have now.  I'll get to my specialist with public transport, but travelling an hour or more each way for my regular visit to my GP seems a bit extreme, when there will be several other doctors within a couple of minutes' drive of my new home. I've already had recommendations for someone who's supposed to be good. But changing doctor feels like a much bigger step than buying a house. I haven't yet worked out how I'm going to handle that transition.

Sunday, 9 February 2022

Ain't No Cure For The Summertime Blues

Patients For A Moment Blog Carnival this month asks how we patient bloggers are coping with the cold winter.  The person asking is lovely Leslie at Getting Closer to Myself wrote the topic, and she is living in that part of the planet that is reportedly cold at the moment.

As for me, I'm here in Brisbane, about 450km south of the Tropic of Capricorn.  Here, we're in the last month of a long hot summer. I'm having trouble remembering winter. We've had a few record-breaking heatwaves in the past couple of months, and looking at the news, it seems the southern states are all on fire. (There's ten bushfires in Victoria and one in South Australia at the moment. There's been lots more throughout the summer.)

Despite the searing temperatures, this summer has been far less traumatic for me than most.

Normally the summer heat saps my energy and I struggle to even get out of bed. And, to be truthful, that is how I started this summer as well.

This year, however, things changed. This year I said to the world's most awesome landlady, "I think I can afford to get an air conditioner, do you mind if I get one installed in my flat?"

She said she and her husband would get me one.

Summer started miserable, with me seeking shelter in libraries and shopping centers and anywhere else I could avoid the heat. Now, I can stay inside at home through the worst of the day.

Some days have been so bad that the air conditioner has struggled, but most of the time it has made a world of difference. It helped when I learned to turn the air conditioner on before the day got too hot - it's much better at keeping the flat cool than it is at cooling it down after it gets hot. This is my first bearable summer in a very long time.

So despite the horror of summer heat, I'm feeling pretty well, much better than I normally would. That might change when I get my next electricity bill, however. (Next on the agenda: solar power.)

Find how other health bloggers responded to this month's PFAM topic at Getting Closer to Myself.

Thursday, 14 November 2022

Not Keeping Up

For Patients for a Moment Blog Carnival this month, Leslie at Getting Closer to Myself asks "what do you do when you can't keep up?"

My first thought in response to that is "when did I last keep up with anyone or with anything?"

"Behind" is the basic way I live my life.

Unless people walk slower for me, I don't keep up when I'm out with family or friends.  Most people slow down for me.  My son just stops every now and then for me to catch up.

At the moment, my family and I are planning a trip to England to see my sister.  One of the things we plan to do there is a visit to a zoo which has electric wheelchairs to loan to visitors who need them - we've decided we need to hire one of those. For once, I will keep up.

Of course, keeping up with people when I'm out isn't my only issue.

I get behind on most things. Today I cleaned the bathroom.  I've been weeks intending to do it, but I've just run out of energy before I got to it.  I used to get really frustrated at all the things that had to wait because I just got behind.

I guess I've just become used to it. I've stopped beating myself up over things.

I know I have to prioritise what things are most important at any given time. I break the most important tasks down into their smallest parts, and alternate between small parts of tasks and rest.  Things that are low priorities usually don't end up being done.

Yes, I'm behind on all the things that need to be done. I probably always will be. Keeping up is unrealistic.  But I've come to terms with that.  My goal is to get by, to do what's necessary for survival, and just a little bit that I want to do more. That's enough.

Saturday, 13 April 2022

The Stress of Living with a Chronic Illness
As I write this, I realise I still have to catch up on doing dishes, the dog needs a bath, I haven't finished
writing a church service for Sunday, and there's other housework to do, and I'm supposed to do some yoga or some other exercise to try to keep everything moving, and I'm just too tired for any of it.

That last one is the problem.  I'm just too tired. Sometimes, I'm just too sore. Sometimes, it's both.

Whatever it is, I get behind on things that wouldn't be an issue for a healthy person. When I have to ration out my energy, it becomes a problem when I get behind, because catching up takes a lot more out of me than it would a healthy person. So I just get behinder and behinderer (those are real words, I promise they are.)

Another stress is financial. I often can't work at all, and when I can, it's only very, very part-time. That means limited money. Sometimes the basics of survival have cost more than my income (one of the big reasons for my latest move of house was that my rent had increased to the point where it cost more than my income) which has meant a steadily-growing debt, and an inadequate means to service the debt.

And then there's the biggest cause of stress of them all: what will lupus do to me?  There's always going to be anxiety about what the next surprise lupus will throw at me will be.  There's so many things it can decide to do for no apparent reason.  I live in fear of becoming a burden on my kids.

Everyone who lives with a chronic illness lives with some degree of stress. A lot of the choices healthy people have about how they will live their lives, are just far more limited for us. We get into difficult financial or living situations because of our conditions. Sometimes we get brain fog and can't even think straight (a real trauma for an intelligent, educated person.) And we all know that whatever our chronic conditions are doing to us, things could always get worse.

This post written as part of Patients for a Moment Blog Carnival, which this month is being hosted by Selina at Oh My Aches and Pains.

Thursday, 4 October 2022

Medical Horror Stories
Selina at Oh My Aches and Pains is hosting Patients For A Moment Blog Carnival this month.  She's got a Halloween theme - wanting our medical horror stories and mistakes.

I must say at the outset that mine aren't so much stories of mistakes doctors have made, but of things that were just really, really scary. I have a couple of them, especially relating to my time in a north-west Queensland mining town, when I was in my early 20s. It was long before my lupus was diagnosed, so I just kept having mystery health problems that no-one ever stopped to think might be linked.
So make sure the lights are on. Check there's no monsters in the wardrobe or under the bed.  Watch any open doorways. And let me share with you some of the greatest horrors of my life.

There are other stories I thought to tell you, and then decided, not to get too scary. Let's just go with these two, fairly tame adventures.

The non-sedating sedative

It was the first time I'd ever had a gastroscopy (endoscopy looking at the upper gastro-intestinal tract.)
I'm going to be bad here and use an actual name, because it was part of what was so scary.  The surgeon's name was Dr Hack.  He wanted to be paid in advance.  I later found out from other patients that was because some people had skipped out on paying their bills. But for a young woman, pretty much alone in the world, it was very worrying.  What was going to happen that I would not be able to pay the bill when the procedure was done?

Arriving at the hospital for the procedure, I was told I would not have an actual anaesthetic.  I almost panicked at that point - they were going to stick tubes inside me, and I was going to be awake the whole time? The nurse explained that they would need me to actually be conscious to co-operate, to help with the procedure. She said not to worry, I would have a sedative so I'd be relaxed and drowsy, and afterwards I would not remember anything.
Well, I don't remember the whole procedure, but there is a part I remember vividly. (If you're due to have a procedure in any way like this in the near future, do not read any further.  Go to and laugh at the jokes. Forget anything I've said so far.)

I remember gagging, choking on the tube down my throat.  I panicked, grabbed the offending thing and ripped it out of my mouth.  I took it all the way out, because I saw the little light at the end of it.

The surgeon told the nurse to hold my arms down, which she did, while I struggled. The surgeon calmly picked up the tube and pushed it back down my throat.

That's the bit I remember. For all that trauma, the only result of the procedure was that the surgeon found "some free-floating reflux". No cause for the problem, no cure, just confirmed the problem existed.

Just a touch of food poisoning
I felt awful, vomiting constantly, weak and shaking.

I did what most people do in that situation.  I took the day off work and went to my general practitioner.

He listened to my sad story, and told me I had a slight touch of food poisoning. Go home, drink flat lemonade, I'd be fine by morning.

I dutifully bought lemonade on the way home, drank some after stirring it to get rid of the bubbles and went to bed.

About 1am the next day, I woke up, feeling as if my stomach was exploding. I tried to get out of bed and found myself on the floor.  Over about a half hour, I managed to crawl to the next room as far as the telephone.  I was about to call the ambulance and realised I'd never get as far as the door to unlock it for them.  Instead I called a man I'd been dating for a little while. I was about to go on holiday and had given him the spare key to my flat so he could feed my cat while I was gone.
He came straight away and called an ambulance.

People always complain about the waiting times in public hospital emergency departments. I can tell you from experience, if it's a life-and-death situation, you get immediate attention.

I was sweating and shaking, feverish, in more pain than I'd ever been in my life.  I was 22, and my nearest family were about 1300km away. One of the doctors asked if the man who'd come in with me was my boyfriend - I mumbled "sort of".  From that point on, the doctors spoke to him, not to me.

A cannula was put in my arm (the first time this had ever happened to me), and I was given IV fluids but no pain relief.
My middle was poked and prodded by numerous people, making me cry in agony, but no-one could give an explanation for the pain I was in.

I was admitted to a ward of the hospital, under observation. No-one knew what was happening to me. About 9am, a nurse asked me if I wanted her to call my work, and I was able to ask her to contact my family as well.

My blood was taken for tests, and the nurse came back and said they wanted to take an ultrasound.  "It's like a picture of your tummy," she said.  "But the machine needs to look through a window. That window is a full bladder."

She injected me with a diuretic, and sqeezed two bags of fluid into my cannula.  The cold liquid entering my arm was excruciating, as was the increasing pain in my abdomen, already providing pain beyond my belief, now having an over-full bladder causing more pain in addition.
I was conscious of nothing except the pain, and that I was crying, the nurse staying with me, stroking my forehead with her cool hand, while I waited to be taken to the xray department.

There the pain of having the ultrasound machine sensor pressed into my tummy was even worse (if that is at all possible.)  I never felt relief as I did when I was finally allowed to go to the toilet that day.

All of the tests, apparently proved nothing.  A doctor came and said he needed my signature so they could do a laparotomy, to cut open my middle and see what was there.

About 6pm, about 36 hours after I'd first become sick, I was wheeled into the operating theatre.  The first face I saw was my own doctor, who had told me I just had a touch of food poisoning.  He said, "Fancy seeing you here. I'm doing your anaesthetic tonight." With that, he put a mask over my face.
When I started to wake after the procedure, I was aware of two nurses washing me.  One was saying she'd never seen so much blood.

Once they realised I was awake, the topic of conversation changed.  They were cleaning me with my own toiletries so I'd feel more comfortable, and were impressed with how my "boyfriend" knew exactly what to pack for me.  (Actually, I always kept an overnight bag packed. I was a journalist and sometimes had to go on fairly long trips. He'd simply found the bag and brought it up to the hospital.)

I was woken by a young doctor who told me, "Your mum's on the phone. Want to talk to her?"

He'd brought a wheelchair and helped me into it.  It was very clear that he had no idea how to do this, especially as he struggle to move my IV from its pole to the pole on the wheelchair, ending with us both tangled in the tubing.  He eventually wheeled me to the phone at the nurses' station.
My mother had been talking to my "boyfriend" and so she "knew" what I didn't - that I had been bleeding into my stomach.  I only had a rudimentary knowledge of anatomy, but I knew the pain, and the impressively long row of staples on my abdomen were way too low to have anything to do with my stomach.

Eventually, I managed to get a doctor to explain what had actually happened.  I had an ovarian cyst that had been bleeding, rather a large amount apparently, into my abdomen.  (The next time I'd have a problem with an ovarian cyst, I'd be pregnant - but that's one of the stories I thought was too scary for the blog.)

Saturday, 15 September 2022

Patients For A Moment Blog Carnival: You Know You Have ... When ...

I had the wonderful experience of hosting Patients for a Moment Blog Carnival this month. It's the first time I've done it, and was delighted to hear from other patient bloggers, and read their work.

The topic I set was "You know you have ... when ...", based on one of my posts, complaining about life with lupus.

There were four responses from bloggers, and they're all well worth reading! Let's have a brief look at them.

If there's a "best in show", it has to go to RA Guy at Rheumatoid Arthritis Guy. He started a bit before the rest of us, and had some help. His post You Know You Have RA When... has more than 500 responses from readers, some funny, some sad, all out of their experience of rheumatoid arthritis.  You know you have RA when you need scissors to open a packet of Doritos; you have to place the shampoo bottle against the shower wall and lean on it to get shampoo out of the bottle, etc, etc.

Next we take a look at what it's like to live with migraine, with Diana Lee at Somebody Heal Me.  Did you think a migraine was just a bad headache? Think again. Diana's post You Know You Have Migraine When... explains just how bad it can be to experience migraine.  You know you have migraine disease when people tell you how good you look despite the fact that your pain is 8/10, you're dizzy, hot, slow witted, and just about to puke on their shoes.

The lovely Leslie Rott, from Getting Closer To Myself explains what it's like to have a flare of lupus or rheumatoid arthritis, or both, in her post The True Meaning Of A Flare. For Leslie, a flare means pain and fatigue, times a million.  (Leslie is the founder of Patients for a Moment Blog Carnival.)

Then let's visit Selena at Oh My Aches & Pains! Selena's post You know you have chronic illness when... gives 20 points, that I think just about everyone with a chronic illness will agree with.  I know I nodded and smiled at every one of them. She make great points like: You and your chronically ill pals speak in code, using words like: fibro-friendly, painsomnia, Spoonie, ChronicBabe, CA (chronically awesome) and AWAP (as well as possible.) I have to admit that I sometimes forget that healthy people probably don't understand most of these terms.

Thank you to all the awesome bloggers who took part!

Next Month's PFAM

Patient bloggers beware! Turn on the lights. Lock the doors. Make sure you're not alone.

Selena at Oh My Aches & Pains! has a Halloween topic for you. It will be "The Fright Files: Stories of Medical Mistakes."

Watch Oh My Aches & Pains! or PFAM for the call for submissions in the first week of October.

Saturday, 1 September 2022

PFAM Call for Submissions

Calling all patient bloggers!  I'm hosting Patients For A Moment Blog Carnival this month. It's the first time I've done it, so bear with me if I seem a bit unsure of what I'm doing.

Our topic this month is: "You know you have .... when .... "

This came from a day I was too sore and tired to move off the couch, and spent the whole day on a post moaning about lupus. So here's your chance, complain about your condition, laugh at your condition, give insights for people what it's like to live with it from the "inside".

You have until the 14th on September 2012. (Australian time - so if you're in the USA, it will be the 13th. Time is one area where Australia really is ahead of most of the world.)  PFAM will be up on this blog on the 15th of September.

Once you've published your post, send the details to me at

I will need you to send me:

1. Your name (as it should appear)
2. Your blog’s name
3. Your post’s title
4. Your post’s URL 

Any further information you need about PFAM can be found at

I'm looking forward to hearing from you all!

Tuesday, 7 August 2022

How Do You Roll?
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.

Wednesday, 18 April 2022

Patients for a Moment Blog Carnival: Who Are You Without Your Disease? | Somebody Heal Me

Patients for a Moment Blog Carnival: Who Are You Without Your Disease? | Somebody Heal Me:

'via Blog this'

Patients for a Moment asked health bloggers: "Who are you without your disease?" The above link will take you to some amazing stories!

Monday, 9 April 2022

Who Am I Without Lupus?

Just a quick diversion from the Health Activist Writer's Month Challenge, because Patients For a Moment have asked an interesting question for April. They ask: "Who are you without your disease or condition? What makes you more than just your disease? How have you adapted these aspects of your life so they're not completely overcome by your illnesses?"

Interestingly, it's not a question as to who I was pre-lupus. I know who that person was. She was an athlete, a workaholic, superwoman.  

Instead, it's the much more difficult question: who am I now, if I'm not defining myself by my condition.  So much of my life revolves around lupus that this really is a difficult question for me to answer.

I still love my arts and crafts that I always loved. When I have the energy, I still prefer to make greeting cards instead of buying them.

Paper-quilled cards I made for Christmas.
I still love my cooking and baking, and prefer my own cooking to eating out. (This is good, now that I can't eat lactose, or gluten, and meat now makes me feel sick as well - but that's all lupus, I guess.) 

I love to write. (Four blogs - one of them my short stories, you might have guessed I love to write.) One thing that has become easier with lupus has been finding time for writing - when I have no energy for anything else, I still find peace and comfort in my writing.

My kids may be grown up now, but I am still mum. I may not be supermum, but my kids know I am there for them. The difference is that now, I sometimes need them to be there for me as well. I'm very proud of the people they have grown into - and they are very caring and supportive.

Christian faith, the church, and ministry are still central to my life. Ministry is only part-time now, but what I am able to do in Christ's service is still very precious to me, and I hope to the church. The congregation I am a part of now ministers to me far more than I ever minister to them. It is made up of the most wonderful, supportive, encouraging, faith-full people.

My friends are also a vital part of my life. I don't spend as much time with them as I would want, but the time we do spend together is precious.

Many years of ministry, a number of them in hospital chaplaincy, has left me with an acute awareness of just how precious and fragile human life is. It has taught me to value the good in every day, to make the most of special times, because we do not know the day or the hour that this life will be over. This life is far too short to dwell on our hurts and pains.

So, I guess that is me. I'd be fascinated if people who actually know me would comment on this post - to see whether they see me as I see myself!