Utterly Exhausted

Utterly exhausted.

I'm utterly exhausted!

Usually I have energy in winter - it's summer that wipes me out.

This winter's the exception.  I'm sleeping all night and most of the day.

Even when I'm awake I'm struggling to stay that way.

What's different this winter?  I don't know.  Maybe it's the emotional strain of all the losses I've experienced lately (in less than three years, my best friend from high school and her mother have both died, my father died, my brother died, and lastly my beautiful cat died. Oh, the kitten in the picture is new, not the cat who died.)

Maybe it's the strain of a heap of unexpected financial pressures. (From a neighbour complaining that my trees need to be cut down, to the air conditioner and washing machine needing repairs, to endless other small and large niggling financial pressures.) Being sick is itself an expense, and not being able to work limits my income.

I'm assuming it's emotional strain that's causing the fatigue, because to be honest, I haven't done anything physical in ages, so it can't be physical fatigue.

Maybe it's just lupus being lupus and doing the unexpected. Winter is time for aches and pains - fatigue usually belongs in summer.  This winter, I'm getting the aches and pains, but also the fatigue.

Either way, I'm struggling to be awake.

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The Funeral, the Flare, and the Feet

Just under a fortnight ago, my mother rang with horrible news. My younger brother had been killed in a horrible road accident.

I knew that the effort of travelling to the funeral would probably cause a flare, but if I didn't go, the stress and upset would probably cause a flare anyway. So of course I went.

Now, a little tip for pensioners travelling in Queensland.  Queensland Rail charged me $25 each way to travel from Brisbane to Rockhampton on the Tilt Train.  (You need your pension card when you book with them.) With a letter from my doctor saying I needed a carer with me, my son got his ticket free.

The actual trip involved about an hour on a city train to get from Ipswich to  Brisbane.  Then it was eight and a half hours on the travel train.

To help with the pain of sitting so long, I wore the portable tens machine attached to my hips and back the whole time.

I chose to stay at a hotel for the air-conditioning, instead of with family or friends. Because this trip was not planned ahead of time, with no time to save up, I could only afford two nights in the hotel.  So we arrived the night before the funeral,  stayed for the day of the funeral, and left the morning after.

By the time we arrived home, neither my mind nor my body wanted to function at all. To be fair my healthy son was in a similar state.

Two days later, however, he was back to normal, and I was sleeping on the couch all day.  I've been fatigued, in pain and brain-fogged for a week.

With this flare, something new is happening.  Not the crying, that's about my brother.  No, there's something weird happening with my feet.

When the rest of me is hot and pouring sweat (even in the air-conditioning), my feet are freezing cold.  I've been lying on the couch, under the air-conditioner with my feet wrapped in a blanket. Then occasionally I get horrible pains in the soles of my feet.

I suspect it's a circulatory problem.  One of the tests on my brain ages ago showed lupus had caused some vascular changes, so it's not beyond the realms of probability that the same thing is happening to my feet.

So I'm making sure I use the big tens machine at home each day - the one that does the base of the feet as well as having the electrodes for sore spots on the body.

My hope is this flare will burn out quickly, so I can get back to the exercise program the exercise physiologist worked out for me.  But all lupies know a flare will last as long as it lasts.

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.)

Survival Vs Achieving Things

After a couple of weeks of having no energy, and lying exhausted and in pain on the couch, I'm
starting to want to do things again.

I've been going for walks again.  I've learned my lesson - I'm not going for hour long walks as I did a while back - which was great until I crashed.  Now, I'm taking a couple of ten minute walks each day - breaking things down and trying not to overdo it.

Today, I've dug out my Calorie King app and started to track what I eat again. 

I'm getting restless, wanting to do more than just sit mindlessly in front of the television.

I'm starting to care again. 

That means one thing.  I've been having a couple of good days. (Hopefully, it could be the start of a good week, month, dare I hope year?)

The difference between a good day and a bad day is simple.  On a bad day, I have only one aim - survive. (On some bad days I don't care if I even achieve that.)  Sometimes I feel a little frustrated I don't have the energy to do anything, but most of the time, I don't even have the energy for that.

On a good day, I feel like doing worthwhile things.  I have energy, and my pain levels are manageable, and I remember that I'm more than just a diseased lump lying on the couch.

I used to feel bad about all I didn't achieve, once I started to feel better. But I've realised that's just a waste of precious energy.

On bad days, all I have to do is survive.

On good days, I can do practically anything, as long as I'm careful with the energy I have.

Never Take a Good Day for Granted

It's confession time.  I may not be quite as well as I've been telling you (and myself) lately.  With my effort at eating properly and exercising almost daily,  I don't seem to have the energy to do much else.  I'm not writing much, and I'm sleeping 12 to 14 hours a night.

What I have been feeling is less pain.  And less pain is good, extremely good.

So while I can I'm going to make the most of the low pain days.

I'm going to keep exercising, and I'm going to keep being a careful to try to eat properly.

You see, lupus has taught me a lot.  One of those things is that a good day is a rare and precious thing.  It should never be taken for granted.

So while the good days last, even if I end up going to bed at 5pm, I'm going to continue trying to get my health into the best possible state before my next flare.

I recently asked on Facebook what lessons other lupies had learned from lupus, a lot are things I have also learned. I'm going to share those over the next few days. Lupus has taught us all a great deal - mostly things none of us ever wanted to know.

Lupus Fatigue

You know what it's like, a healthy person complains of being tired, and you wish that "tired" could be a temporary thing for you, the way it is for them.

Chronic illness fatigue just isn't like any other kind of being tired.

It's more like Sisyphus would feel after an eternity of pushing a boulder up a mountain.  (Of course, according to the myth, he earned his punishment.  We didn't do anything to deserve this.)

We wake up tired and go to bed exhausted, and in between we fumble through life as best we can.

Sometimes, we manage to fight the fatigue and get things done.  But that usually catches up with us in the end.

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I have to get up tomorrow

lupus.cheezburger.com

I have to get up early tomorrow.

I have to get up early enough to get to the railway station by 6am, so I can get to the airport by 8am to catch a plane to Melbourne for the Patient Education Conference at Lupus 2017.

Knowing my difficulty with waking up in the morning, I have created a foolproof plan.  (Well, hopefully a foolproof plan.)

I've set an alarm for 4.45am.  I made it "Hot Potatoes" by the Wiggles.  That should be something that will force me to get out of bed and shut it off.

As my daughter has to catch a train to work at the same time as I'm going, I've asked her to check that I'm awake as soon as she gets up as well.

Then, I'm going to drink copious amounts of coffee.



Tomorrow afternoon, there's a meeting of representatives of lupus support groups - so hopefully,  I'll have something interesting to report tomorrow night.  And on Wednesday is the Patient Education Conference, and I'll definitely have something worth while to tell you about then.

Thursday, it's back to the plane and trains to get home.

Lupie's Morning Routine

Wake up.  I'm feeling terrible. What to do now?

Analysis. Why do I feel bad?

1. My eyes are sore dry, and feel like they've been rubbed down with sandpaper.
2. My mouth's also dry.
3. My feet and legs are sore and swollen, and it hurts to stand.
4. Random joints hurt.
5. Exhaustion.  I feel like I haven't slept in a month.
6. Overheated.  
7. Gut feels uncomfortable.

Plan.  What can I do about each of these things?

1. Dry eyes: Use my eye gel.
2. Dry mouth:  Rinse with dry mouth mouthwash.
3. Feet and legs:  Try the tens machine.  If that fails take a fluid tablet.
4. Joint pain: Tens machine again, if that fails, anti-inflammatory gel on the problem joints, failing that, pain pill.
5. Exhaustion: Coffee.  Lots of strong coffee, and my vitamin B12 supplement.
6. Overheated: Turn on air conditioner, and put hair up in ponytail to get it off the back of my neck.
7. Gut: Take my fibre supplement.

Action. What I do.

1. Put in eye gel.
2. Wash mouth with dry mouth mouthwash.
3. Have coffee and try to remember what else I planned to do.
4. Go back to bed for another hour because I feel horrible.

My Memory's Getting ... What Was I Saying?

lupus.cheezburger.com

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.

Trying Not To Be a Wonky Donkey

Hee-haw! I'm a donkey.

Lately, my "normal" bed time is 7pm.  Add to that, the issues with nausea I've been having, going out at night is not something I really do much of.

But last night, I did go out.  I even drove.

I went to an function for all the Toastmasters' clubs in the area.  There was a nursery rhyme theme, and my club went as Old McDonald's Farm.

I made animal ears for team members as our costumes.  Because I had a couple of week's notice, the sewing and craft work was easy to do in time.  

It was actually going out at night time that I was afraid might go all wrong.

I went as a donkey.  I was very drugged up on anti-nausea medications because I was very afraid of being a seriously wonky donkey.

I also slept for several hours through the day, and had a similar nap today as well for recovery.

Despite my fear that I'd end up having to rush out and throw up through the evening, or be unable to handle driving, it all worked out well, and I had a good night.

The days of just going and doing things on impulse are long gone.  But with a bit of care and preparation, I can still make the most of an opportunity to go out.

Participation Award

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

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

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

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

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

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

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

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

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

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

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

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

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

You are amazing.  Don't ever forget it.

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

Energy Level Critical

I've been doing things lately.

When I say "doing things", I don't mean things like running marathons. (That's what my sister does for fun.)

I mean things like going to the shops, or sewing, or giving a speech at Toastmasters, or spending 15 minutes gardening.

The trouble with doing things, is that it takes energy.

My brain says, "What a great day to get something done."

My body says, "Fine, but when do we sleep?"

When we sleep has been about 4.30pm quite often lately.  My son wakes me up about 7pm for pills, and I go back to sleep until morning.

Today, I've reached 2.30pm and I'm wondering if I'll make it to 4.30.  But hey, I've got some things done.  If you visited me you might not notice what those things were, but let me assure you some things have definitely been done.

Consequences

I'm tired, really, really, incredibly, beyond words, tired. It's my own fault, of course.

Another "medically interesting" friend has been for quite some time asking me to go jet skiing with her.

All sorts of things have interfered with getting out, but finally, on Saturday, we managed to do it.

Despite my slipping on the riverbank and having an unexpected swimming lesson, it was a great day.

I covered up, doused myself in sunscreen, and did everything I reasonably could to minimise the damage.  But really, there's no way to go out and do something like that with no consequences.

We had about 40 minutes on the water.  By that time, my back, hips and knees couldn't have stayed in that position any longer.  But it was starting to rain anyway.

On Saturday night everything hurt so much I needed a sleeping pill to get to sleep.  I haven't had any trouble getting to sleep since. Staying awake? That's another matter.

On Sunday I did get to church.  I had four cups of coffee beforehand, and took another with me to help me stay awake through the service, then had an extra cup before I drove home and went to sleep.

On Monday, I managed to get up, and with the help of rather a lot of coffee I did a load of wash, played with my granddaughter for about ten minutes and did some work on the current novel I'm writing for about a quarter of an hour.  Then I went to sleep until my son woke me to tell me to take my lunchtime tablets.  After lunch and tablets I found some appropriate television for sleeping in front of, and slept on the couch for the rest of the day.

It's Tuesday now.  I've been up for two hours.  If I make it to lunch time, I'll consider it a great achievement, because I'm utterly exhausted.

If I told this story to my rheumatologist I'd get his "stop trying to prove you can have a normal life" lecture.  But do you know something?  I think that once in a while, going out and doing something that's fun and is totally outside my normal routine is worth the consequences.  This time the consequence is a few days (OK it might yet turn out to be a couple of weeks) of increased fatigue - which surprised me because I thought I might end up with a lot of extra pain and rashes as well.

I did it.
I thoroughly enjoyed it.
I don't regret it.
I might even do it again one day.
But right now, I need a nap.

Do you have a story to share about life with Lupus?  Throughout May, I want to feature stories by lupies.  Please tell me your story.  (Details are here:http://www.sometimesitislupus.com/2016/01/tell-me-your-story.html)

Tired

When a lupie complains of fatigue, I wonder if healthy people understand what that means?

Unlike most people "tired" is a baseline for us.  We're always tired. We don't complain about that usually, because that's "normal".

We wake up tired - even if we've actually slept well - even if we've taken medication to ensure we've slept really well.

There's degrees of tired, however.  Most days I can make my zombie-like way to the kitchen to fuel up on caffeine so I can actually do something with my day.  Some days, I don't make it that far, I get half-way out of bed and go back for a nap.

Why is that?  Well some days, right from the start, "tired" feels like I've been dragging a load five times my own weight across a desert for the last 48 hours.

However I start the day - tired just gets worse from there.

For anyone who doesn't know, these are the basic stages of "tired" in lupus.

1. Simply tired.  I can function, but I could do with a cup of coffee.
2. Moderately tired.  That coffee is getting urgent.
3. Very tired.  I'm struggling to stay awake.  Coffee's no longer helping much.
4. Extremely tired: I'm binge eating, drinking anything I can find with caffeine, and shaking, trying to get the energy to keep going when every cell of my body just wants to sleep. 
5. Fatigue: I'm not making sense when I talk, I keep forgetting basic things,  my co-ordination's shot and I'm dropping things and falling over.  I'm getting frustrated that my brain and body just aren't working any more.
6. Severe fatigue:  Not only are my brain and body malfunctioning, but my emotions are all over the place. I'm just going to sit down here and throw a toddler tantrum until I get my milk and bikkies, and my blankie and nap.
7. Exhaustion: I'm going to sleep.  I may be standing up.  I may be in a meeting.  I may be in a movie theatre. I may be standing in a line at the bank.  I may be shopping in the supermarket.  It doesn't matter.  I am going to just stop here and sleep.

I can remember (vaguely) days when I was healthy, that I really didn't even get to a 1 until late afternoon.  Now I can hit a 7 as I'm getting out of bed. An incredibly good day is one when I don't get past a 3.  On a regular day, I'm moving back and forwards over all points from about 3 to 6. 

Well, that's just fatigue.  When you add pain into the mix, that's when it gets really interesting.

Hey lovely lupies, have you thought about writing your story for me?  All through May, I want to feature posts about lupies sharing their story of life with lupus.  I just need your photo, your name, and your story.  

Full details are here: 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.)

I'm looking forward to hearing from you.

The Cat, the Mat, and the Lupie

A while ago, I told you about how one of our cats ran away and we couldn't catch him for ages, and I was so stressed out I had a flare.

That's not the cat in this story. This is the other one.

Since those fateful events, we've had an "air lock" system in our house.  Both the little entry hall has both the front door and the door to the rest of the house closed - only one can ever be opened at a time so as to make sure no cat can get out.  We have the same system with the laundry and the back door - the door between the laundry and the rest of the house has to be closed before the back door is open.

This has left us with two cats who have begrudgingly accepted becoming "inside cats", but who still look enviously at a dog who is regularly taken outside.

Another piece of background to this story is that on good days, I try to do many of the things that I would leave for my son/carer on bad days.

So it happened that on Wednesday, I was taking my washing out to the clothesline.  It was late in the day and I was a little tired, so a little brain fogged, and I didn't properly close the door to the laundry before I opened the back door to go outside.  Out of nowhere the older cat appeared, and disappeared through the gazebo and into the trees before I had a chance to catch him.  (He may be getting on, but you wouldn't know it.)

I called for my son, who failed to catch the miscreant, but did give me a lecture.  (Whose job is it to make sure I close doors, turn off the stove, etc anyway?)

As I said this cat isn't the one who stayed away for ages.  This one will always come home, the issue is just how much mayhem he will cause and what injuries he will come home with.

I finished hanging out my washing, and came inside.

A little later it was getting dark, and I thought it might be time to check if Mr Bumpy Cat were back home.  I went to the front door, making sure to shut the other door behind me.  I didn't think to turn on the entryway light, I wasn't going to be there long. Just outside the front door was said cat.  He'd apparently been considering coming home.

Trying not to scare him away, I squatted down to try to coax him in.  I had one foot on the doormat and one on the tiled floor.

Mr Bumpy took one or two steps in, but once he was half-way through the door he turned to go back out again.

I grabbed for the cat, not wanting him to run off into the darkness.

The next thing I knew I was lying on the tiled floor in a tangled mess of arms, legs, cat and doormat, with my bad hip and shoulder both making their pained objections quite clear.

There was only one thing I was certain of:  if I let go of the cat before I got that front door closed,  I wouldn't be able to catch him for hours.

I thought of calling for help, but my son was in his room at the back of the house, and if I called too loudly, I would wake my toddler grand-daughter upstairs.

I lay there for a moment, trying to gather my thoughts, and discovered they were as hard to catch as the cat had been.  Eventually, I rolled the entire ball of cat, me and mat fully inside so I could lean on the door to close it.  Done.  I could let go of the cat.

Now, I was in the dark, on the floor and in pain.  I slowly rolled over on to my hands and knees.  Sadly, my left hand was on the corner of the mat, which was now upside down (so the stuff to make it stay in place was on top, not on the tiles), and it shot out from under me.  Have I mentioned that my bad shoulder is the left one?  I almost screamed.

I made it back to my hands and knees, making sure no part of me was on the mat.  I stopped for a moment to recover and make sure nothing was actually broken, before I got completely to my feet.

I opened the door back into the rest of the house.  Just at that moment, the cat darted under my feet, and I fell against the wall. (It was my left shoulder that hit the wall.)  At least I stayed basically upright.

There were no real consequences, other than that my bad hip and shoulder hurt a bit more than usual.  But I can tell you, fatigue, brain fog and basic clumsiness are a very bad combination.

Oh, the washing machine's just finished.  I have to go and hang out another load.

You can read the same story, from the point-of-view of the cat here: http://www.mrbumpycat.com/2016/04/mr-bumpys-version-of-certain-events.html

Doing Things and Overdoing Things

I have a very bad habit, and I know I'm not the only lupie guilty of this.  I overdo things.

Sometimes I just miscalculate what I can and can't do.  Sometimes I know it's too much, but I do it anyway because it's something I really, really, want to do. Sometimes, I feel I need to do something for someone else.  Sometimes I do things because I feel guilty about all the things I can't do.

It doesn't really matter why.  The fact is that I overdo things, and I do it by choice.

Take, for example, the Toastmasters Club I recently joined.

On Monday this week, I had my first turn as the toastmaster - that's basically a master of ceremonies.  My job was to make sure the meeting was following the agenda, going to the anticipated time on the agenda, introduce people (who we all knew anyway), and have something interesting or semi-interesting to say to fill in gaps.

It required some preparation, a lot of concentration, and a lot of getting up and sitting down and getting up and sitting down.

Immediately prior to the meeting starting I was asked by some of the older members if I would be willing to be nominated as VPE (Vice President Education) when we have to elect officers again soon. I hummed and haa-ed, but was persuaded to give it a go.

After the meeting, my daughter and I stopped off at a supermarket. I had friends visiting for pizza and a movie later in the day, and wanted to get some pizza ingredients.  Firstly, I couldn't find my way around a supermarket that I know really well. Then, I had no idea what goes on a pizza, and had to ask my daughter to sort it out for me.

At that point, my daughter pointed out, that if I was that tired and brain-fogged after just being toastmaster, I really shouldn't be VPE.

I had to agree she was right.

A short nap later, I managed to be vaguely human and enjoy my friends' visit. On Tuesday, however, all I did was sleep.  It was all I could do.

That's making me a little concerned.  You see, recently I told the minister at the local church that I was sure I was well enough to lead worship from time to time - a task which also takes a lot of standing, a lot of preparation, and concentration.

I love leading worship so much, that I really, really do want the opportunity to continue to do it. But if I do, it looks like I need to plan my time so that I can have a day or two out to rest afterwards.

It's always a matter of balance, is the thing I'm presented with the opportunity to do worth the amount of time it will take me to recover?  Like many of you, I have to carefully work out the pros and cons of the activity, and the exhaustion, confusion and physical pain to follow.

While I'm here, I must mention, that if you don't hear from me much next week, it's because a friend is taking me jetskiing on Monday. That will definitely be worth it.

And while you're here, why don't you hope over to the Lupus Survey and fill it out if you haven't already?  There's no identifying information requested, and next month we can have a look at the results maybe learn more about ourselves as a group.

Crossing The Line

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.)

Coming Out of a Flare (Hopefully)

Something's changed just in these past couple of days.  Maybe longer, but I've actually noticed it the past couple of days.

I've been getting more done before becoming exhausted.

At first, I started having the energy to post more frequently on this blog.  It had been more and more sporadic as I found myself more and more fatigued and sleeping most of the day.

I started finding the energy to take the dog for a short walk some days, and to face my overgrown garden and start to work on it again some days.  To start with, I was alternating, ten minutes gardening one day, ten minutes walking the other. I also started work on a sewing project for my granddaughter that I'd been putting off.

Yesterday, I stunned myself.  I did both.  I took my dog for her walk and I planted out some new things in the garden.  I could barely believe it.  It's been months and months and months since I was able to do anything so incredible.

Last night I realised that I was probably coming out of a flare I'd been in.

Then I realised I was so exhausted I was no longer communicating coherently, and went to bed.  The pain was so bad that after lying there trying to go to sleep for a couple of hours, I ended up getting up for some endone (oxycodone) and a sleeping pill.  At that point, I thought maybe I'd been kidding myself and I wasn't really coming out of a flare, just pushing myself too far.

What happened next was a miracle.  I got up this morning and stayed up.  It's after 5pm and I haven't had, or needed, a nap.  If this continues I can see all sorts of wonderful things happening, for example I might actually be able to go to church.  It's been ages, but when I've managed to drag myself there, I've either slept through the service or been shaking with the effort of keeping myself awake.

I'm starting to get tired now, but I went grocery shopping today, and, as I said, I didn't have my four-hour nap after breakfast.  Even if it proves to be a very early night, I think I'll still celebrate what seems like a siginficant improvement.

Looking on the Bright Side

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.

When One Day At A Time Is Too Much

 A long time ago in a city far away, I joined Weight Watchers and was dismayed that I had to lose a little over 15kg.  (That doesn't seem so bad now, when I need to lose more than 50kg.)  At the time, the very wise lecturer gave me some important advice: just think about the first 5kg.  The rest can wait until you've done that.

It's good advice for any large task, break it down into smaller, more manageable chunks. 

There's an old song that asks Jesus to "teach me to take one day at a time."  It's about breaking life down into manageable chunks.

Sadly, for many of us with lupus, a day at a time can be to much to deal with.

If you have a list of things to do today, and it all looks too much, stop looking at it all.  Just pick one task and break it down into its smallest possible parts.  Then chose one small part you're confident you can do. Just one.  When you get through that, have a rest if you need to, before you look for another one little thing you can do.

For example, if one of the tasks you need to do today is to clean the kitchen, break that down into: unload the dishwasher; load the dishwasher; put things away; wipe down the benches; wipe down the stove; sweep the floor; mop the floor; take out the rubbish.  Then choose, just one of those smaller tasks. Do it. Give yourself credit for achieving something.  Have a rest if you need to. Come back when you're able to do the next little bit.

When a day at a time is too much, it's OK to take life an hour, or a minute at a time.