Trying Again - With Help This Time

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

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

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

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

I'm seeing an exercise physiologist.

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

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

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

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

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

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

Great Gifts for the Lupie in your Life

Every lupie needs The LupusEncyclopaedia, by Dr Donald
Thomas.

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

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

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

  

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

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



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

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

Review: Shade UV Light Sensor

The Shade UV light sensor.  It may not be
the most attractive piece of jewellery
you will ever wear, but I'm pretty sure it will
be your favourite - because it can help
prevent lupus flares.

There are lots of different things that can trigger a lupus flare.  For many, probably most, of us ultraviolet light is one of those things.

Sadly, ultraviolet light is one of those things it's almost impossible to avoid all together.

Biophysicist Emmanuel Dumont, PhD has developed a gadget that helps us control the amount of UV light we're exposed to.

(I've told you before my heroes wear lab coats.  Dr Dumont, and his team are definitely heroes for lupus patients.)

The Shade is a sensor which detects and measures the amount of ultraviolet light we're exposed to each day.

You simply download the mobile phone app, pair the device up with your mobile phone, and attach the Shade to your clothes.

It's held on with a magnet, so it won't leave pin damage in your clothes.  And this is a strong magnet, so even when a small grandchild jumped at me for a hug, it stayed firmly in place.

Each day, the phone app asks how you are feeling.  After a while you can look at your history - how much sunlight exposure you've had each day, along with how you felt, to work out your personal limit.  (Everyone's limit is different. Some lupies can handle more UV than others.)

Once your limit is set, the device will alert you when you've received 20% of your daily limit, or 40%, 60%, 80% and 100%.

As lupus changes all the time, you can change your limit if you notice the relationship between daily exposure and how you are feeling changes.

If you tell the device the SPF of your sunblock, it will take that into account in measuring your UV exposure.

The phone app gives you the option to talk to the Shade team when you have questions of problems. But really, the device and phone app are so easy to use, you probably won't need it.

You can find out more about the Shade, and how it was developed (and you can buy one) here https://www.wearshade.com/about.

The Shade won't replace your hat, sunblock and everything else you do to protect yourself from too much sunlight.  But it will give you the freedom to know how much time you can safely spend outside, and a fair warning of when you are approaching your limit.

After a week of using it, I am totally in love with it.  It's not the most attractive piece of jewellery I wear, but it's definitely the most useful. It's a great feeling to know that I can safely enjoy being out in the garden for a while, and know I'm not going to overdo my sun exposure.

If I had a magic wand or multi millions of dollars, I'd provide one for every lupie on the planet. As I don't have the money or the wand, all I can do is encourage you to acquire one for yourself.

Now we just need something to help us control everything else that can trigger a flare....



Disclosure: this is not a paid post, however, I was provided with the device free of charge to enable the review.


Update: More on the Shade Sensor

Real Food

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

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

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

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

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

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

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

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

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

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

www.patreon.com/IrisCarden

Doing up a Zip at the Back of a Dress

One issue bothered me about my planned trip to Melbourne.

I'm going alone, so how am I going to dress myself? Specifically, since all my favourite dresses have zips up the back, how am I going to do up my own zip?

My first idea was to wear clothes that do up at the front, and I've started to make a new dress which buttons up the front.  However, I really don't have enough time, or energy, to make an entirely new wardrobe.

So I searched the internet, and found a number of gadgets it's possible to buy to do the job.  However, I also found, on a number of sites, a gadget so simple I could make it with materials in my arts and crafts studio. It's a safety pin on a long ribbon.

A safety pin with a ribbon helps do up a zip at the back
of a dress.

Tie the ribbon on the safety pin, then put the pin through the zip before putting the dress on.  Once the dress is on, throw the ribbon over your shoulder (if you're like me, throw it over your good shoulder) and pull the zip up.  Reach back and undo the safety pin.  (That's the hardest part - so use the biggest safety pin you can find  because it's quickest and easiest to undo.)

To undo the zip, reach behind your neck, put the safety pin through the zip, and then pull the ribbon down.

On a related note,  I've been having issues with the hook and eye at the top of zips lately.  They're too small and fiddly for me to do up, and they get caught in my hair. Fortunately for me, I have time to make my own clothes.  My solution to the problem, is to put a button and loop at the top of the zip instead of a hook and eye.  It's bigger, and easier for me to manage, and I use self-covered buttons so they don't stand out particularly.

A button with a loop is easier to manage
than a hook and eye at the top of a zip.

Quick Walking Stick Trick

Saved! My favourite walking stick,
with tennis racquet tape over the
broken foam padding.

It was a sad day when the foam padding the handle of my favourite walking stick finally started to
fall apart.

After searching everywhere for either a replacement piece of foam, or an identical stick, I came up with something a little different.

I went into a sports shop. That's something that doesn't happen often.  And I bought the tape that goes on the handle of a tennis racquet.

It could have replaced the foam, but I put it on over the foam, pulling the broken bits back together as I went.

This works! My favourite stick has been saved, and it's just as comfortable to use as it was before the foam started to come apart.

Oh, the little thing attached to the stick near the base of the handle allows the stick to be balanced on the edge of a table - so I can just pop my stick on the table beside me when I have coffee out or whatever. You can usually find them at pharmacies. (Brain fog won't let me remember what the gadget is called, but if you tell the pharmacy staff what it does, they will know what you mean.)

Games to Clear the Fog

The Vortex Point games are made by Carmel Games,
and published on Mouse City.

Looking for something fun to help clear a foggy brain?

Try playing these point and click games.  (They're flash games, so they will only work if your computer has flash installed.)

This series of games is by Carmel Games. I like their stuff because I don't need fast reactions to play.

These games help provide a little challenge, enough to force a foggy lupie brain to do some thinking, but not impossible.

It's just one of many ways I waste time when I'm not feeling well, and want to at least exercise my brain a little.

Depending on how foggy you are, you may not need this advice:   When you follow the link, you will get to a page, with an ad on the top, you need to scroll down to the screen with the game, and you will have to watch an ad (you can skip after the first five seconds) before you start the game.


 Vortex Point - Point and Click games at mousecity.com

  Vortex Point 2 - Point and Click games at mousecity.com

  Vortex Point 3 - Point and Click games at mousecity.com

  Vortex Point 4 - Point and Click games at mousecity.com

  Vortex Point 5 - Point and Click games at mousecity.com

  Vortex Point 6 - Point and Click games at mousecity.com

(If you're having a really foggy day and you get stuck, you'll find a link to a walkthrough under each of the games.)

While you're exercising your brain, how about thinking about the World Lupus Day activities at Sometimes, it is Lupus?

Tell Me Your Story http://www.sometimesitislupus.com/2016/01/tell-me-your-story.html (Note: if you have a lupus-related website or social media page, feel free to include the link with your story.)


Do the Survey http://www.sometimesitislupus.com/2016/01/lupus-survey.html

If It Doesn't Come From Someone Who Is Qualified, It's Not Real Medical Advice

I recently saw an article being shared around Facebook.  It said people with lupus shouldn't take
chemotherapy drugs.  Who was the person who had the expertise to write this? Was it a world-renowned rheumatologist? A medical researcher?

 The author's name tugged at my memory.  He was featured on an episode of The Checkout not all that long ago. His job was selling blenders on an infomercial.  He did claim some medical expertise on the basis that his parents were doctors. My father was an electrician, but that doesn't qualify me to rewire your house.

Hopefully, most lupies didn't fall for that.

I fell for something similar a few years back.

I went for a regular eye test, and filled in a form for a new optometrist which included all my medication (plaquenil being one medication I was taking.)

The optometrist told me I the plaquenil was damaging my macula and I should stop taking it immediately.  I said I had an appointment with my rheumatologist in a couple of weeks, I'd talk to him about it.  The optometrist said something along the lines of: "You could wait that long, but only if being able to see isn't all that important to you."

I stopped my plaquenil. By the time I saw my rheumatologist, my lupus was flaring.

The rheumatologist sent me to am opthalmologist.

The opthalmologist (eye specialist) told me two important things: firstly, I did not have a macular problem at all, and secondly, plaquenil maculopathy was so rare that most optometrists wouldn't recognise it if they saw it.

I never went back to that optometrist again. I did, however, see the opthalmologist every year while I took plaquenil, just in case.

So that's general advice from someone who doesn't know, specific advice from someone who didn't know,  what other advice do we get?

There's always the friendly advice:  "Don't let lupus control you, just get out and do what you want to do."  Fine, but right now I'm in agony and exhausted and all I want to do is take some pain relief and go to bed.  "You need something to boost your immune system."  Yes, well my immune system's trying to kill me, so I don't want to give it any help.  "You just need to get out in the sun more." Do you have any idea what happens to me when I go out in the sun? "You need more exercise."  Exercise causes me a lot of pain and can trigger a flare, I do what I can, but I can't push it further. "You should take some B12." If it shows up lacking on my blood tests, my doctor will tell me and then I'll take it.

Then there's TV doctor advice.  Some of the people who play doctors on TV talk shows might actually be qualified as doctors, but there's no guarantee. If they give general advice, even if it might be good for some people, no two people are the same, and lupies find we all have different experiences and different medications that help.  General advice is not a replacement for your own doctor's advice.

I'm not saying there's no reliable information around.  There's rheumatologists who blog, there's really good reference books, like Dr Donald Thomas' Lupus Encyclopaedia. Check who's giving the information, and what their qualifications are.  A practicing rheumatologist should have a current working knowledge of treating lupus.  But these are for general information.  I'm sure rheumatologists who blog or write books would be the first to say that reading their work  is not a substitute for seeing your own rheumatologist.  Rheumatologists writing on the net and in books can give you information, tell you about what tests mean, warn you about the side effects of medication, but they haven't seen you and they haven't looked at your test results and they don't know what is the best treatment personally for you.

So what I'm saying is, accept information from informed sources (but check that those sources are informed), but when it comes to actual medical advice about your actual treatment, check with your doctor.

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.

Brain Fog Day Reminders

• Take the clean dishes out of the dishwasher before trying to put the dirty dishes in it.
• The budgies like lettuce for a treat. The dog does not.
• Smiling and nodding will only get you so far. Sometime you do have to admit that you've completely lost the thread of conversation, and ask for a catch-up.
• Medication is important. Does anyone remember what I've taken?
• Red means stop. Green means go. (If you don't have the option to stay at home.)
• That drip - drip - drip noise means finish turning off the tap.  The rushing river noise means it wasn't turned off at all.
• Stoves are best turned off when not in use.
• Cats like to be fed. 
• If your new glasses have slipped through a wormhole into another dimension, your old glasses will do for a while.
• Keep all objects which are likely to slip through dimensional wormholes (pens, phones, keys, glasses, etc) within sight at all times.
• Food scraps go in the worm farm, cans and bottles go in the recycling bin.
• Find out if you've eaten anything today. Food can be good.
• If you've read the same page 15 times, that just means you get to enjoy the book for longer.
• A constant electronic beeping is highly likely to mean something, the right response is to look for the thing that's beeping.
• No matter how important the thing you forgot to do was, getting upset won't let you go back in time and fix the problem. Just accept it and move on.

Got the Time?

I love gadgets.

I have gadgets to help me open jars, gadgets to help me move around, gadgets to help me organise everything.

My new Pebble watch.

So, would it be any surprise to know I have a new gadget? This was a gift from my son.  Yes, it's a watch.  I've had watches most of my life (usually I go for pretty little gold ones, not big bulky plastic ones.)

What's so special about this?

Well, it's a smart watch, and it's customisable.

Mine now monitors and tracks my activity and sleep.  It's got a weight tracker, and if I have any kind of emergency, I can shake it, and it will automatically send emails to selected family members to say I need help.

Sleep tracker

I have an app which will help me find my mobile phone. That's very useful when my memory problems cause me to constantly forget where I've left my phone.

I've never dared take a watch in water, but this one is advertised as being OK to take in the pool, so I can use it to track my activity during hydrotherapy, as well as walks and just everyday life.

Activity tracker.

If I hadn't already had the pharmacist put all my pills into prepacks, I could have a reminder on my watch telling me which drugs to take when.  (I may still set reminders for the things that don't go in the prepack.)

If I had other kinds of health problems, I might use some of the other apps available, such as the seizure detector, or the diabetes app, or pulse check.



I only received this yesterday, so it will take a while to see if this really makes a difference to managing my health, but it looks promising.

Oh, and did I mention, it also tells the time?

How to Show a Lupie Some Love

Tomorrow is Valentine's Day.

I don't have a romantic relationship at the moment, although I did buy a present for a "special someone". (I bought cute shoes for my grand-daughter.) I do have people in my life who I love very much, and I don't think love really needs to be limited to romantic relationships.

Saint Valentine's message was about God's love, rather than romantic love. It's bigger than just one other person.

So, if you have a lupie in your life, and you want to show them a little extra love for Valentine's Day (or any other day, for that matter), what can you do?

I asked lupies on social media.

Believe it or not, we don't all want flowers and chocolate (although, I'm sure those would be nice, too.)

There were two main themes for answers.

The first was: help with the everyday work. Lovely lupie Twyla pretty much summed this up: Some help cleaning my house would be an amazing gift, it's causing me so much anxiety. I've always had a tidy house even battling lupus for 24yrs. But the last couple of months I have no strength or energy. 

Along similar lines, lupies said they'd love premade meals, the washing caught up, and pretty much anything else that would ease the burden of the necessary activities of daily life. Lovely lupie Sarah specified wash, dry AND put away 55 loads of washing.

Cooking a nice meal at home (without the crowds of a restaurant) also got the thumbs up.

The other big theme was a spa day, or similar.  Some suggested massage, one lovely lupie would love a heating pad. There were lupies in favour of manicures and pedicures. (Pedicures are especially valued by those of us who can't reach our own feet anymore.) This doesn't have to be expensive: as lovely lupie Megan said she just wanted chocolate and a hot bubble bath.

There are some lupies who would be grateful just for your time, just to have you turn up and watch a movie or whatever.  There's some who would just love a nice card, and to know you thought of them.

Of course, there's always someone who has different plans. Lovely lupie Pamela's story was unique: I have lupus and heart failure, caused by the lupus, but my husband, in 2007, had a rare tumour in his neck removed. He was the seventh person ever in the world to have had this thing, and was only 36 at the time. He almost died. Luckily he recovered. He was in and out of the hospital the whole year of 2007, and the strain that caused me was unbelievable, especially with a six year old son at home and dealing with my own health issues. His carotid artery burst 10 days post op and we thought we had lost him. But he and I rallied through it and thankfully he's OK now.  His first surgery was on Valentine's Day. So since that day we instead celebrate Happy Tumour Removal Day on February 14th and I make some tumour themed dessert that we then hack into with fiendish delight.  We've had tumour chocolate candies, a tumour cake (with red oozing pudding in the middle), and my favourite... catastrophic haemorrhage over ice cream (with fake, tasty blood  - corn syrup, red dye, and chocolate sauce.) I haven't decided which tumour delight to make this year. 

Of course, what we all most want is a cure.  You can't buy that.  But there are lots of institutions working on it, who would be happy for you to donate to them.  And we'd all feel loved, if we had a cure.

What was I going to say?

It's Friday.

It was kind of a surprise to discover that this evening, because I personally have been having a Saturday.  It's not that I chose to have a Saturday on Friday, just that I honestly believed it was Saturday.

I've been having issues with cognitive function for a long time now.

I would tell you how long, but I really don't remember.

I'm on a waiting list for the Neurology Clinic at the Royal Brisbane and Women's Hospital, but I've been on the waiting list for years. The latest letter from them tells me I'm still on the waiting list. There's no indication of how much longer I'll need to wait.

In the meantime, my GP has come up with an idea to deal with some of the symptoms of my cognitive issues, even if we can't do anything about the cause.  She's sent me to a psychologist to help me with memory and the fuzzy thinking/confusion I get sometimes.  She's also sending me to an occupational therapist to look at the clumsiness that seems to go with the confusion.

So far I've had my introductory meeting with the psychologist. It was just for him to gather information about the problem. He's thinking about strategies for me for our next meeting on Monday. Hopefully, he and I will both be having a Monday at the same time.

I haven't seen the occupational therapist yet.  I think I may have forgotten to make the appointment, or maybe I did make the appointment and forget to go.  If anyone knows where I left the information the doctor gave me about the occupational therapist, please call me and tell me.

So, hopefully, between the psychologist and the occupational therapist, I may have some very good strategies for managing my brain fog soon.  I'll let you know how it all goes. If I remember.

Oops

We've had to put one of those non-stick mats in the bath.

You see someone, I won't mention who, slipped over getting into the shower the other night.

I could blame lupus for this - brain fog, poor co-ordination, you know all that stuff goes together.

But that's not the truth.

You see the truth is that there's a scientific anomaly in my  bathroom.  Gravity is significantly stronger just in my bathtub.

The CSIRO would have been in to investigate, but they had their funding cut in the last Federal budget.

So, as we've no anti-gravitational devices to counter the extra strength of gravity in just that spot, we've put in a non-slip mat so as to make it harder to slip over.

In fact, when we brought the mat home, my son put it in the bath tub, and then jumped up and down on it to ensure the suction cups on the bottom were holding it securely in place.

Changing Gear

Fairly soon after I was diagnosed, I upgraded my little manual car to an automatic with power

Driving my little mobility scooter
(with help from my small "co-pilot").

steering.

I loved my little Ford Focus, and took very good care of it.  Buying it brand new, I'd planned to stay with this one car for a very long time.  It was easier to drive than my previous car, the steering was light, I could handle it even on days when all my joints hurt.

I failed to take one thing into account in choosing it.  A Focus is a fairly small car.  That was fine to start with.  Once I needed to start carrying extra things to help me with mobility, the car didn't have quite enough space.  First, it was the wheelchair. Then, to be a bit more independent, I got a groovy little red mobility scooter.  Now, I don't need someone to push me around.

The scooter breaks down into small enough parts to put into the boot of a Focus, but then I needed to have someone with me wherever I went, to get all the pieces out of the car and assemble it, and to break it down and put it back in the car again later. The boot of the car was then full, with no room left to put the groceries, or anything else I might have wanted to carry.

So this week, I did the unthinkable.  I traded in my little car that had less than 60,000km on the odometer, for a very well used Nisan XTrail four wheel drive.

The "new" car - with experience.

It's close to the same age as the Focus was, in years, but has more than 200,000 on the odometer.  So I guess it's a car with experience.  Second-hand was the only way I was going to afford a 4WD.

The benefit is, that my scooter doesn't have to be broken into as many parts - so is easier to set up and put away.

Add to that, my son has promised me an early Christmas present - he has it on order to pick up next week - a folding ramp to make getting the scooter in and out of the vehicle simple and light enough that anyone, hopefully even me, could do it.

Of course, there's also heaps of room in the back for me to get shopping and whatever else I need and carry it home, too.

I was a bit sad about changing cars. You might have guessed.  I was also a bit concerned.  I drove 4WDs when I was younger, but haven't done so for years.  I remember them being heavy to handle, but I was much stronger back then. Fortunately, that has changed dramatically.  This is automatic, has power steering, and in two wheel drive mode, is no harder to handle than the smaller car was.  I also remember 4WDs requiring a great deal of effort to climb into. This one's not all that much higher than a regular car, and I can step into it, rather than climb.

Wheelchairs Don't Bounce

My "new" chair.

Well, I did only go overseas for two weeks. It's a while since I got back.

I needed a bit of recovery time, and then there were some family and health crises (not all the health crises were mine for once.)

So, as an intrepid lupie world traveler, I've had quite an adventure, and I don't know where to begin telling you the stories of what happened.

I guess I'll start with the discovery that wheelchairs don't bounce.

You wonder why I tried to find that out?  Well, actually it wasn't me who did the experiment. But I did provide a brand new wheelchair for it.

I'd bought a wheelchair with the trip in mind. The theory was that if I was pushed around in a chair instead of walking (limping) I would have the energy to do more. This actually worked out quite well, despite the hiccup.

My family pushed me through Brisbane International Airport in my own chair.  At the door of the plane, my chair was taken away.  In the stop-over airports I was transported by airport staff in the airport's own wheelchairs to my connecting flights. (This, in itself, is a great reason to take a wheelchair on a flight. It meant my family had a guide to show us where we were going getting from one gate to another.)

At Manchester, the final stop, the airport wheelchair was awful. The airport staff didn't push this one, but gave it to my son to take me, saying that it would be a while before someone was available and we'd be faster on our own.  The wheels of the chair seemed to have come from the same factory that produces those shopping trolley wheels that go in four different directions at the same time.

My son struggled and I got frustrated, and we were both incredibly glad to pick up my chair from the baggage collection point.

My chair was so good in comparison to the airport one that we didn't even notice that it wasn't behaving as well as normal.

We passed a sign that said, "Check your luggage, no complaints accepted after this point." We'd been travelling for 24 hours straight. We had all our bags. Nothing was obviously wrong. We left the airport.

The next day, the family went for a walk through the streets of Frodsham to the local park.

Family members took turns pushing my chair, and complaining about the rough footpaths, especially the sections that were cobblestones. (Cobblestones may be very pretty, but they're not good for wheelchairs.)

It got worse a it went on, and then we discovered that one of the front wheels wasn't straight. It was bent under part way.  We were all muttering about just how horrible British footpaths were.

Eventually the front wheel collapsed all the way, and I had to walk back to my sister's house.

My sister asked around and found that a place called Motability would be able to fix my chair. We went in to the place suggested, and handed my wheelchair over to be examined.

While waiting we watched a video about the business - which employed people with disabilities to restore and repair mobility equipment for other people with disabilities.

The diagnosis for the chair: it wasn't damaged by the street. It had received a hard knock, probably from being dropped from a height.  The repair people strongly suggested airline baggage handlers had something to do with it. The frame was so badly damaged, it couldn't be repaired.

I bought a red reconditioned chair from them for 50 pounds, which meant we were free to continue the holiday.

And having a chair for trips to all the amazing places we went really was worth it.

So, dear lupies, if you're planning an overseas holiday, taking a wheelchair is a great idea. Just don't buy an expensive new chair to take with you. Get the cheapest one you can buy, second-hand is fine.

Handing Over Responsibility

I've done it.

My first medication pre-pack.

I've thought about it for years, and at last, with great trepidation, I've done it.  I've handed over responsibility for my weekly pill sorting task to the local pharmacy.

It was getting to the point of being half way through sorting and saying "did I put in....?"  "have I remembered....?"

So the time had come.

It's $2 a week on top of the regular cost of my medications, so that adds up to about $50 a month, and my fish oil doesn't fit into the pack.  But mostly, it's all done for me.

I picked up my first month's packs today.  Actually my first two months' packs, because I'll be going overseas soon and needed to have some to cover that time as well.

The details of all the medications is listed on the back.  Which is good, because it allows me to still be obsessive. I can obsessively check that they haven't made a mistake, instead of me making a mistake. (I just checked the back, and it says I have one methotrexate tablet on Sunday night.  Actually I'm meant to have two and a half.... so I guess I'm ringing them in the morning to sort it out.)

The days of the week are set out so that tomorrow is the bottom strip of pills. I can take the single strip off and carry it in my handbag if I'm going out.  The next day is the next strip from the bottom, and so on, up the pack, making it easy to separate out the strip of pills for whatever day I am going out.

It may take a little getting used to.  But I'm no longer spending half a day each week sorting out my pills. Maybe once the first bugs are worked out of the system and I'm used to just picking up my pills, ready sorted, each month, I'll even feel comfortable about handing over the responsibility.

 

It's Heating Up

It's late spring, and the summer storm season's already begun.

That means incredibly hot, humid days, with storms in the late afternoon or overnight.

It also means I'm suffering from fatigue reaching the point of exhaustion without doing much at all.

My son's first-ever attempt at hairdressing.

And, on top of that, I'm suffering from rashes from the heat.  Dermatitis on my scalp has come back, after being away for some time.

Today, it reached the point where I couldn't stand it any more.

My son came to the rescue, with the hair clippers.

For his first-ever attempt at hairdressing, I think he's done a good job of clipping my hair.

I've also noticed that, although I don't have a serious butterfly rash, I'm starting to get pink across my cheeks, which is not a good sign.

The worst of the hot weather is yet to come. Summer doesn't actually start until December. So far, this year has been Australia's hottest on record, so I'm not looking forward to the last six weeks of this year, or the start of next year either.

I have a couple of strategies for hot weather. One is to get rid of as much hair as possible and wear light clothing.  My home is quite cool, except for the hottest days, and normally I can keep under fans or an evaporative cooler. (Eventually, I will save up for air conditioning.)  When it does get too hot here, I tend to go to places like shopping centres, or fast food places, where I can find a quiet place to sit with a cool drink and my kindle while the worst of the heat passes. As always, I try to avoid being outside in the sun.

Say Hello To My Little Friend

Say "hello" to my little friend.

My new, portable tens machine.
(And Mr Woof and Mr Bumpy.)

No, I don't mean the cat or the dog in the picture, but if you want to get to know Mr Bumpy Cat and Mr Woof, you can meet them on www.mrbumpycat.com.

I ordered my new portable tens machine a couple of weeks ago, and have been enjoying trying it out.

Unlike the  big one I've had for quite a while now, it can go anywhere.  Powered by a  9 volt battery, the controller clips on my belt or waist band. I'm not tied to a power outlet.

The electrodes attach to whatever joints are sorest, and the wires feed under my clothes to the controller.

Tens machines produce electrical impulses that interfere with pain signals from the nerves. Instead of pain, the otherwise sore spot just feels a massaging buzz.

How good is it? Well, while my friends upstairs have been on school holidays, I've joined them on a few outings. We've been to the beach, and even for a walk through Ikea. With the tens electrodes placed on my sore hips and lower back, I managed to do it without being in pain. (Yes, I slept for about 36 hours straight after Ikea, but I was only fatigued, not fatigued and in agony.) I also went to a birthday party. (Now you know why you haven't heard from me much over the past couple of weeks.)

As with anything, I can't promise it would work for anyone else.  But I'm gaining a lot of freedom by using it.

It Stopped Being Funny

Today's shopping, my new floral walking stick,
and my backpack-style handbag.

A month or so ago, my son and I were at the shopping centre, and I was complaining about how much walking hurt my hips.  My son offered to go and get me a walking stick.  I said, "You do, and I'll hit you with it." We both had a good laugh.

Well, maybe it was a bit funny.  But you know what's not funny?  When I start walking my left hip hurts, then I start to limp, then because my right hip is doing so much extra work, it starts to hurt.  Then the level of pain in both hips just increases the longer I have to be upright.

I guess the reason I didn't want to try a walking stick was that they look so overwhelmingly like "old" and "disabled", maybe even like "helpless". I don't want to look like those things.

People tend not to change until the new thing is more attractive than what we already have.  Being able to walk further without as much pain has been becoming more and more attractive.

Today, I did it. I bought my first-ever walking stick.  It's a light-weight aluminium one, which has a floral pattern on it. So at least it's pretty, and doesn't look huge. And.... well, we spent a long time at the shops today, and I didn't feel much hip pain at all. So I guess it's a success.

Since I was spending on things to make life more pain-free, I also replaced my handbag, with a backpack-style handbag.  It means I'm distributing the weight of the things I carry across both shoulders, so one doesn't get so sore.

It's going to take a bit of adjusting, because using a walking-stick at the age of 47 doesn't fit the "me" I see myself as... but the flowers on it make it more fun and pretty, and I do enjoy having less pain.