Showing posts with label exercise. Show all posts
Showing posts with label exercise. Show all posts

Saturday, 7 April 2022

Flare Ongoing

Image: Sad dog, with toy crocodile leaning over arm of lounge.
My dog, missing out on her walk.
I'm still struggling with that flare that came up after my trip to my brother's funeral, but I'm slowly seeing signs of things improving.

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

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

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

Image: dog, lying on her back with her legs up in the air, with toy crocodile also on its back with legs in the air.
My dog, after a walk.
So far, each time I've had a morning walk, I've been unable to do it again the next day, but one walk is better than no walk.

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

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

Tuesday, 30 May 2022

While I feel well, part 3

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

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

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

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

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

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

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

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

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Wednesday, 24 May 2022

While I feel well, part 2

So, I'm exercising almost every day.

The next step in improving my overall health is looking at my diet.

So I have been looking at the Australian Guide to Healthy Eating. The diagram below gives the overview of what a healthy diet should look like.

The guide gives a breakdown of actual number of serves recommended from each food group, for people on the basis of sex and age.

Looking at it, there are a lot of changes I need to make.  The biggest will be to get five serves of vegetables into my diet each day.  But a few weeks ago, getting exercise into every day seemed a major challenge, so I'll do this the same way - work up to it.  I'm going to look for ways to include more vegetables in my diet day by day, until it eventually becomes a habit.

Once I get that under control, I'll start looking at how well I balance the other food groups.

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Saturday, 20 May 2022

While I Feel Well

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

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

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

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

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

Tuesday, 4 April 2022

Maybe I Should Ease Into This

Have you tried the Lupus Exercise program from Syasmi Dhuha I told you about the other day?

I did it two days in a row.

The first day I felt really good.  The exercises did seem to help with my pain, and I had more energy for the rest of the day.  I got so much done that day, without too much pain, and with lots of energy.

The second day, I felt quite good.  I was a little better at the exercises, and paid more attention, realising that I was working even those bothersome small joints - fingers, wrists, ankles.  I got a fair bit done that day.

Today I crawled out of bed and realised something: it might be better if I ease into anything new, even something that is lupus-specific.  I'm taking a break today and tomorrow.

Then I'm going to start again.  Initially, I'll do the exercises every third day.  When I can handle that consistently, I'll bring it down to alternate days.  The aim is still to get to the point of exercising every day, but I'm going to get there slowly, over time. Oh, and I still have to remember to not overdo things on the days I feel good.

This really is a great exercise routine.  As I said earlier, it was designed by doctors specifically for people with lupus.  It's a low-impact exercise routine that gently works all of the joints and muscles.  It's really, really, good.  And, eventually, I'll get to do it every day.  Maybe you'll join me.

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Wednesday, 19 October 2022

My Memory's Getting ... What Was I Saying?
I had to go to the GP for a new referral to my gerontologist (not for my age, for my memory.)

I made the appointment, thinking, "I don't really need this, my memory's been getting much better lately."

In fact, I'd been telling myself I had been feeling really good, generally, and that everything was getting better.

I walked the dog every day for a week. I convinced myself that the exercise was good for me, and I was actually feeling better in all ways.

Then I got the phone call from the doctor's office asking why I'd missed my appointment.  I'd forgotten to go.

Suddenly, I realised just how exhausted I actually was.  I looked at my pill sorter, and noticed the number of times during the week I'd forgotten to take my meds.

I went to bed.  I stayed there for most of the week, and and probably not yet quite back to where I was before I decided to exercise every day.

My son's been walking the dog. This has made the dog much happier because he walks further and faster than I do.

The lesson from all this is that yes, I do have limits, and constantly pushing past them isn't going to make them go away, it's just going to make the crash worse when it comes. It seems I had learned that lesson a few times before, but I've kept forgetting it.

The other lesson is that, yes, I do need that appointment for my memory.

Friday, 19 August 2022

Participation Award

Image: flowers.  Text: To all the lovely lupies who coaxed sore, tire,d complaining bodies out  of bed and took part in today; you're awesome!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.)

Wednesday, 3 February 2022

Crossing The Line

Image: yellow marigold.  Text: I wish I could actually see the fine line between doing things and overdoing things.There is a fine, very fine, microscopic even, line between doing things when I feel fairly well, and over-doing things and making myself unwell again.  I may have crossed the line a little.  Hopefully, only a little and I will get back on track after a day or two of rest.

What did I do wrong?  I broke my own rule of only doing one "big" thing a day.  For me a "big" thing is pretty much anything I have to leave the house for.

On Monday,  I walked my dog (one "big" thing), and because I was feeling quite good, and because she was really having a great time, we went quite a bit further than usual.  We must have been out at least 15 or 20 minutes.

Then I went to my first ever Toastmasters' meeting.  (Well, feeling relatively well made it a good time to further my plans to get out and meet people, but this was a second "big" thing.) From there, I went to coffee with some of the Toastmasters' members ("big" thing number three).

When I came home I crashed.  It was a very long sleep, and I still didn't feel quite right.

On Tuesday,  I had a Writers' Circle meeting.  Which I went to, and thoroughly enjoyed.

For my dog's exercise, we played our version of fetch.  It involves her running around madly with a squeaky toy for five or ten minutes, letting me get the toy to throw, lolloping off after it with a dumb grin, running around with it for another five or ten minutes before I throw it again.  It's good, she gets half an hour's cardio, while I only have to throw a squeaky toy three times.

By Tuesday afternoon, I had taken extra pain pills, and my son suggested that for our grocery day (Wednesday/today) maybe we should just order on-line to have our groceries delivered, instead of me going out again. I assured him I would be fine, after all I do seem to be just about over this flare.

This morning?  I got up, ordered the groceries on-line, and the dog and I went back to bed.  My son graciously refrained from saying he told me so.

If anyone's looking for me today, if I happen to actually be awake, I'll be in the studio, writing or sewing, anything that's relaxing and doesn't take any real physical effort. Oh, and at some stage, I'll probably toss a squeaky dog toy down the hallway a couple of times (at least one of us should get some exercise.)

Sunday, 24 January 2022

Looking on the Bright Side

Image: sunflower. Text: Lupus cna mess with my memory,c ause me pain, and drain me of energy. It can't take away my determination to be happy with my life.The limited energy I have means I have to make choices every day.

I could take my dog for a ten minute walk, or I could do ten minutes work in the garden.  I don't have the energy to do both those things.  (Thankfully, my dog loves playing in the yard and "helping" me garden.)

I could spend an hour or so writing, or spend an hour or so on art or sewing.  Again, it's only one of those things, and then I need to rest.

If I go shopping, I can walk for a short while and get into places that are awkward for mobility scooter,  or I could take the scooter and go further, do more, and stay out longer, but I can't get into places that have limited accessibility.

Every day I make lots of choices, deciding how to use my limited energy each day.

There's another, equally important choice I have to make every day.

I can look at my draw full of medication, and be dismayed. Or I can look at it and be glad that these drugs have made it possible to have a quality of life that I wouldn't have if they weren't available.

I can be miserable about not being able to do a job I loved any more, or I can do other things I love, reading, writing, arts and crafts, being with people I love.

I can be annoyed that I don't go out very much, or I can be appreciative that I have a house that so perfectly meets my needs, and also provides shelter for my family.

I'm not minimising depression that can go with chronic illnesses.  I'm first to confess that I do get overwhelmed at times, especially when brain fog makes me vague and confused.  That drawer of medications includes an anti-depressant.

What I'm saying is that the story is bigger than that.  I can't, and I don't expect you can, force myself to be ecstatic when everything's bleak.  And I know if I'm in the pit of depression, getting out is a long, slow, process. I don't want to go back there. What I can do, is choose the way I look at whatever's right in front of me.

There's at least two sides to every story, every day we choose which side to focus on.

Thursday, 3 December 2022

Once Upon A Time

Yes, these really are my taekwondo medals.
(Taekwondo ended for me about the  time I needed
a hysterectomy for unexplained symptoms.)
There was a time, before I was diagnosed, when I had enough stamina for an hour and a half training session.

There was a time, before steroids, when I didn't weigh twice my healthy weight.

There was a time, when cooking a meal didn't leave me exhausted.

There was a time when my shoulders (and hips) were right and left, not good and bad.

There was a time when I could not only work full time, but also be involved in sporting and community activities after work.

There was a time when I could drive for hours on end, without needing rest breaks.

There was a time when I could go shopping without ending up exhausted and in agony.

There was a time when I could deal with hot days without starting out completely exhausted.

There was a time when I could deal with cold days without all of my joints being in absolute agony.

There was a time when I donated blood, and didn't just have it constantly taken for tests.

There was a time when I could start writing something and get to the end and still remember what the point of what I was writing was...

Um sorry. I think this was meant to go somewhere, but brain fog.

Wednesday, 7 January 2022


I've started the New Year with a definite plan.

I'll try hard to take care of my diet, and to do a little bit of exercise.  If I fail, I won't beat myself up over it, and will just try again the next day.  I'm going to do what's good for me, without worrying about the number on the scale (because prednisolone and any number of other things affect that number any way.)

I'll try to keep on top of my work around the house and garden, so I don't have lots to catch up. But, if I don't get to keep up with everything, I'm OK with that.

I'm not going to stress about what I don't get done.  If you visit me and the dishes aren't done, don't be surprised. (The carpet will be vacuumed - my son does the heavy jobs.)

I will rest if, and when, I need to, and I won't feel guilty about it.

I will try to build some relationships with other lupies locally. (I've already arranged a get-together for the Lupus Association Queensland, at the end of February, so lupies who live in this area can meet up.)
Most of my life, I have been mostly interested in caring for other people.  This year, I'm aiming to learn to care properly for me. (That doesn't mean I will forget everyone else.)

Saturday, 8 February 2022

Fat or Fast

I had my regular visit to the rheumatologist this week.

Dr K works in the city, which means driving to the station, a train to the city, and a 20 minute walk from the station to Dr K's surgery.  (OK, it's probably a five minute walk for most people, but this is me.)

So he immediately noticed that I looked unwell.... I explained I always look unwell after a 20 minute walk, but I persist in believing that little bits of exercise must be good for me, even if I can't go to a gym for a full work-out any more. For once he didn't bother to give me the "with lupus, if you use it you'll lose it" speech.

Instead he gave me the "you need to lose weight" speech. He added a horrible warning this time - my arthritis in my ankles may be from lupus, but unless I lose weight, I'll also have osteo arthritis, which isn't ever going to go into remission.

Now, I'm fully aware that I'm well and truly over my healthy weight. I know it's completely necessary to lose the excess.

I also know that Dr K has me taking prednisone which puts on weight just by existing, but which also gives me an uncontrollable appetite.  Every time I try to diet, I can stick to a program for a couple of days but by the end of the week, the ravenous prednisone appetite gets to the point that there's no way I can possibly suppress it.  Add to that, that Dr K stopped me going to the gym, and absolutely insisted he would not give me enough pain relief to be able to do any strenuous exercise (the "use it and you'll lose it" speech), I'm well and truly sunk.

So here I am stuck, with willpower that's just not strong enough to beat prednisone and a body that can't and won't exercise more than a very slow walk, or a hydrotherapy workout.

The next day, I told my problems to my GP (for those of you overseas, a GP is a General Practitioner, a family doctor).  I asked if there are any weight loss pills that actually work. Her answer was simple - no there aren't.  

I wanted to know, what else I could do (apart from developing a weight loss tablet that doesn't work, advertising it as a miracle drug, and getting rich).

Her answer was to try a different kind of weight loss program. She recommended the book The Fast Diet by Michael Mosely. Dr Mosely looked at scientific evidence for fasting on alternate days providing lots of health benefits - not just weight loss, but reduced inflammation, better blood pressure and cholesterol, and number of other benefits.  He then developed the idea of a fast on two non-consecutive days a week, on the basis that it is easier than alternate days, and people would be more likely to stick to it.

By self-testing, he found he lost weight by sticking to a fast on two non-consecutive days a week, and found that his health improved as well. 

On a fast day, women eat no more than 500 calories (if you're like me and grew up with kilojoules, that's 2100kj), men eat no more than 600 calories (2520kj).

Do I really believe that a fast on two days a week will do everything for me that the alternate day fasting, which scientists actually researched, would do? I'm skeptical. But on the other hand, if on the non-fasting days, I don't eat more than usual to compensate, then in any given week, I have surely eaten at least 5000 to 6000 kj less than I'd normally have eaten. That's a whole day's food less than usual, so I should theoretically lose weight.  And it means I don't have to struggle with maintaining willpower day after day - I just have a "first day of the diet" to deal with - then I go back to eating normally, and then have another "first day of the diet" to deal with.  I always know that I'm only one day away from being able, without guilt, to give in to the craving for chocolate or cake.

So far, I've fasted two days.  I've found it not at all difficult. In fact, I'm starting to wonder if I want to increase it to three days per week during Lent, and to explore some of the spiritual side to the tradition of fasting.

And if I do have a bout of the prednisone hungries on a fast day, all I have to do is nominate it a non-fast day after all, and have another fast day in its place.

Hopefully, this will work. It has to. My ankles are depending on it.


Mosely, Michael. The Fast Diet: Lose Weight Stay Healthy and Live Longer with the Simple Secret of Intermittent Fasting.

Wednesday, 27 March 2022

Back In The Pool
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.

Saturday, 2 March 2022

Running Away
At my weight loss group this week, we were talking about stress eating, and more constructive ways to deal with stress.

Of course, the best way to deal with stress, is to solve the problem that is causing stress. But that isn't always possible.  Everyone in our group was able to identify sources of stress that were constant, and had no solution.  As someone in the group said to me, "You can't leave your body behind."

Whether it's your own or a family member's chronic illness, or another problem that doesn't have an easy or practical solution, there's often causes of stress that can't be fixed.

It's no wonder that many people, like me, use food as a means of dealing with stress - some of us binge eat, others don't eat enough. In many ways, it's not as bad as using dangerous drugs to cope, but it's still not healthy, and it can still have fatal consequences. (Obesity-related illness is a major killer, and, let's face it, if you're reading this site you've probably got enough health problems without adding any more.)

If it's not possible to deal with the cause of stress, to fix the problem, then it seems the only way to deal with it is to deal with the results. Instead of having stress hormones giving us fight or flight messages our bodies can't do anything with, we need to encourage our bodies to produce the kinds of hormones that tell us everything's fine and we don't need to worry.

We can help ourselves to feel happier, more content (and less likely to feel on edge and to eat to calm that feeling).

For many people, exercise helps with this.  That's not always an option for lupus patients.  Doing what exercise we are able is good for a number of reasons, and regulating those stress hormones is only one of them. It also makes a difference to joint mobility and overall health.

Sometimes, the way to deal with the stressors that we can't change, is to take a tip from small children - to announce that we're just going to "run away".  To simply take a break from the cause of the stress.

We can't take a holiday from our bodies, but we can take our minds away from our stresses for a while.

Here's some suggestions for "running away" from stress:

  • Read a good book.  Slip into a fantasy world, and forget reality for a while.  (If money for buying books is a problem, remember council libraries are free.)
  • Watch a movie or a play.
  • Try writing fiction, create your own fantasy world.
  • Arts and crafts can give you something to focus on, where you can have a sense of achievement, and create something worthwhile. 
  • Pets can give you something to focus on beyond your own stressors.
  • Meditation and prayer give the opportunity to let go of the stress, to relax, to feel that you are not carrying a burden alone.
  • Put on some favourite music and dance. 
  • Play an instrument.
  • Have coffee with a friend. (It's just as good having coffee at home as it is to go out to an expensive coffee shop.)
Do all of these things sound obvious?  Yet, it's easy to go on and on for weeks even months without doing any of these things, or anything else that makes you happy, takes you out of yourself, or gives you some sense of happiness or achievement.

It's possible to have stress just build up and build up and build up, to get depressed, or to engage in self-destructive behaviours, like binge eating, to try to deal with how we feel. It's much better to try to release the pressure in some healthier ways.

Monday, 5 November 2022

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.

Energy Levels Low
I've been struggling a lot with brain fog lately, but it's not the only symptom that's been flaring.  I've also had some killer headaches, and fatigue and joint pain are hanging around as well.

I cannot believe how much I've slept since I stopped work. I really hadn't realised how fatigued I was.  But what I'm starting to realise now, is that while I've been sleeping, I haven't been looking after the housework, and I haven't been looking after myself very well either.

Yesterday, I had a big step forward.  I changed the cat's litter trays. He was very grateful. And last night, I cooked an actual meal.

Today, it's off to hydrotherapy, no matter what. Somewhere along the line, I need to start cleaning the house up.  (I have a house inspection in a couple of weeks - so that's incentive.) And I need to stay awake long enough to hook up all my achy bits to the TENS machine for a while.

The challenge is, of course, to do all of that while making sure I still get enough rest so I don't get sicker. And I really don't want to get any sicker.  I've already handed control of my bank account over to my daughter because the brain fog is worst when I'm trying to deal with numbers.  (I am so thankful that I'm still able to write - and hopefully what I write is coherent.)

You can help improve day-to-day life for someone with a chronic illness, when you buy products from businesses listed in the Lupus Business Directory.

Tuesday, 4 September 2022

I went back to hydrotherapy yesterday, for the first time in weeks.

Spring is here, and I no longer have the excuse of it being freezing cold when I get out of the pool. So, when I'm well enough, it's back to hydro a couple of days per week.

About half an hour of gentle exercise in a warm hydrotherapy pool leaves me tired enough to have a three hour nap afterwards, so my trip to hydro is a major event.

Exercises include walking up and down the pool, forwards, backwards, sideways; doing "push-ups" against the side of the pool, arm and leg raises, stretches, etc.  It's pretty much a full workout, with both the support and resistance of warm water.

It's interesting to observe the other people around me. I'm about the youngest person in the pool for hydro. (There's usually a parent or two teaching a toddler swimming.)

The pool is quite often crowded, so we're all having to be careful to move around each other, and it's strangely difficult to change direction while you're walking in the water.

In the crowd, there's usually one or two older ladies who get in the pool with perfectly done make-up and perfectly styled hair.  And when they finish their work-out, they still get out of the pool with perfectly styled hair and perfect make-up.  I don't know how they do that - I get out of the pool looking remarkably like a drowned rat.

There's a couple of ladies who seem to be there more for a chat than exercise. They stand in the pool and talk and never seem to move.

There's some older men who walk together up and down the pool to talk as they go, talking and keeping pace with each other.

And there's some who say hello to everyone, and some who don't say anything to anyone.

Yesterday, there was something new.  There was a lady who borrowed my pool noodle, without asking, just took it from where I left it at the side of the pool without a word, to use it and then left it at the other side of the pool without a word to me.  Later, I realised that the plastic-covered sheet with exercises listed on it that she was using wasn't hers either; the owner came and collected it before leaving the pool.  This strange lady was not only using other people's equipment, she was also using an exercise program a physiotherapist had designed for another person. (Very interesting.)

There's always a couple of people working with physiotherapists, still learning how to do their exercises.

And there's one or two people with severe disabilities who go into and out of the pool on a hoist, and have a carer with them to help them out.

At first, I was self-conscious about going to hydrotherapy.  I don't look sick. And I'm certainly not as old as most of the people there. So I felt bad about how little strength, energy, and flexibility I have.  I don't feel that way any more. Everyone there is at a different level.  There's no competition. It doesn't matter whether I'm having a good week or a bad week. I just do my own thing at my own level, the same as everyone else does.

Thursday, 30 August 2022

How About a Lupie-lympics?

My medal collection (pre-lupus)
Well, I didn't watch the Olympics, and I'm not going to watch the Paralympics either. I'm sure it's all very inspirational stuff, with people overcoming their disabilities to do things I wish my body could do.

Can I propose a variation on the olympic theme for people with lupus?

The first rule would be that anyone who managed to get out of bed and turn up for an event should immediately qualify for a gold medal.

Events would include some that require real skill - like pill sorting, some that take endurance like marathon napping, some that require endless patience like waiting for the appointment with the rheumatologist. I think I could also do quite well at a coffee-drinking event.

Wednesday, 15 August 2022

Just Too Tired
I was going to go to hydrotherapy today, but after my busy day Monday, and my recovery day yesterday, I've found that I'm just not yet ready to move that much.

Perhaps a second recovery day is in order.

Tomorrow I need to work, so maybe Friday I'll get to hydro.

The exercise at hydrotherapy really is good for me - the warm water helps soothe sore joints, and the exercise has the usual health benefits of exercise.

But it always has to be weighed up against how much energy I have in the budget for the day.  On Monday - I used up Monday's energy, and put a bit on the "credit card". I have to deal with that quickly - because if I push myself when my energy is already low, I can make myself very sick. (Putting too much on the energy credit card, can have dire consequences - just as putting too much money on the plastic credit card can!)

Monday, 6 August 2022

The Cost of Independence
Well, a couple of days ago, I bought the smaller vacuum cleaner, with the aim of being able to vacuum for myself.

Today, I tried to use it quickly through the house.  It's a small house, so that's only about 10 to 15 minutes' work.  (Especially as I didn't try to do areas where I can't see the floor, so didn't go near the kids' rooms.)

The result? Well, for a while, my carpets are slightly cleaner. And my left shoulder and my back are killing me.

It's going to be a couple of hours with the hot water bottle, and perhaps the tens machine, before I'm able to even consider doing anything more.

Doing things like this for myself is very costly in terms of the pain as a result. Unfortunately, I can no longer afford to hire someone else to do this for me.

So now, the challenge is to work out how much I can do at a time, and how much recovery time I need, and to plan around that.