Remembering to say NO…

Hello, yes I’m still here and still alive.

I’ve been wanting to write this post for a few weeks now but have struggled to find time when Foggy Frog isn’t being a pain!

With so much going on, writing this post has been a good reminder to me that I need to remember to pace myself and listen to my body. Although physically I’ve been able to do so much more, I’ve found mentally I’ve been struggling the last few weeks.

This means it’s time to reevaluate again and find what I can step back from to achieve balance again.

Pacing is such an important part of my management strategy for the pain and other debilitating symptoms, such as the fog and fatigue. With the changes in my medications over the last few months my pain levels have been lower and, as I said above, I’ve been able to do more than I have in over 3 years.

I’ve joined a gym and have found that doing something most days (generally a stretching based class or a swim) has been beneficial for my pain levels as well. My step count is back to an average of 7,000; a level I haven’t managed since December 2014.

I’m still working on the Australian Association of Environmental Education Biennial Conference occurring in October, and my upcoming book launch on 24 September… less than a month to go! This has meant meetings almost every day about one thing or another.

As you can probably tell there’s a lot going on at the moment. In fact, it’s a little too much so I’ve been slowly stepping back from the conference planning and trying to work out what the essential things are for me to get done for the book launch to be a success.

I want to keep up my physical activity, as I’m trying to make sure I’m as healthy and strong as possible for when we start trying for a family (something we’re seriously talking about at the moment). So that means saying No to some of the other activities in my life.

Right now I’m saying NO to:

• taking on any more for the AAEE Conference planning
• to other volunteer opportunities that don’t have any connection to possible paid work in the future
• meetings I can postpone until later

I’m saying YES to:

• time with family and friends
• actions that will progress the book launch
• actions that will help me be healthier and stronger (exercise, diet, rest)

What do you say No to in order to say YES to the things that matter?

Are you feeling better? You’re looking good!

The other day, E and I were out celebrating the birthday of one of our friends. It was a dinner and dessert event, which meant a late night for me.

Because I knew we were having a late night I’d spent most the day doing quiet activities like reading and building the Lego I got for my birthday. Even though these were the main activities I did that day by lunch time I was struggling to keep my eyes open and my pain levels were rising.

I spent most the afternoon on the couch resting and thankfully I was feeling reasonably well when it came time to head to dinner. Still low energy and slightly raised pain levels, but not bad enough that I couldn’t focus at all.

At dinner, the venue was quite loud and I did struggle with focusing on conversations so didn’t even bother trying to keep up with conversation at the far end of the table. I did chat a bit with those at my end of the table but mainly just tried to listen.

When we got to where we were having dessert it was quieter so I began to join in the discussion again. At this point someone asked me if I was doing better because I looked a lot better than I had before.

Now, I’m always hesitant to answer this question.

Yes, at the moment I’m managing to do a lot more than I had in the last 3 years. I’m working and I’m socialising more. My energy levels are (ever so slightly) better than they have been (more stable), meaning I’m crashing less often, and my pain levels are relatively stable (although they’re beginning to fluctuate a lot more now that winter is here again).

If I just compared how I’m doing right at this moment with how I was 6 months or 2 years ago my answer would be a resounding YES, I’m doing better.

But I’ve felt better before, for a month or two, and then had a major crash which took me back to worse than I was to start with so I don’t want to jump the gun and say I’m doing better yet.

I believe the Testosterone cream is helping with my energy levels at the moment, but I am concerned about the side effects if I stay on it long term and I really want to have children at some point.

E was frustrated with me that I wouldn’t give a clear Yes answer to our friends and that I deferred to him and asked if he thought I’ve been doing better.

I did this because, up until recently, he’s always been able to tell (even before me a lot of the time) if I’m doing too much and about to crash. It seems that I’ve been able to perfect my ‘well’ face (the one I use to cover the fact I’m struggling) to a point where even he’s not noticing as quickly when I’m struggling with things.

That night out, I looked like I was doing well. For some periods of time I was, my energy levels were fluctuating dramatically going from able to focus to complete zone out several times during the mean. Normally E would notice these zone out times, but it appears he didn’t that night…

Do you struggle with people assuming you’re better because you ‘look’ better than before?

How do you decide how much to share?

Share Your World – Week 7

Jumping straight in today so here we go…

What are you a “natural” at doing? 

I’m a natural at engaging with babies/younger children. When they’re really young, I can usually get them to settle in my arms. Older, they seem to be attracted to me and want me to participate in their adventures. I’m enjoying spending more time with my friends children these days and I really can’t wait until we’re ready to try for our own.

Would you prefer a one floor house or multiple levels?

Definitely one floor. Our current house has only one step down across the middle of the house but even that means I can’t just put Mr Vacuum on to run around the whole house… He just focuses on the bottom floor (kitchen, family room) most the time.

Mr Vacuum resting after cleaning the floor 🙂

I wouldn’t want to drag washing up and down stairs and everything is just so much easier on one level.

What was your favorite subject in school?

My favourite subject at school was music. I participated in school musicals and other events. It was a great break from the more serious maths, english and science I focused on all the way through to the end of year 12.

At university, I focused on subjects related to the environment and sustainability.

Complete this sentence: If only the rain.. came regularly year round. It would save me so much energy if the rain came regularly enough that I didn’t have to worry about watering 🙂

What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful for the time I got to spend with my friends and their children.

In the next week I’m looking forward to catching up on some much needed work (supposing this relief from extreme fog stays – I can focus enough to do a little work again now).

Zero Waste Purchases: No Buy Challenge Update Week 11

I did some shopping this week…

There, I got that off my chest. I didn’t break my rules for the 20 week no buy challenge, but I did buy things I wouldn’t normally buy (they were on my to-buy list a long time.

If you’re a regular reader you’d be aware that I’ve yet again been trialling new drugs and suffering from very frustrating side effects that are impacting on my quality of life.

In particular, the brain fog (which I had got to manageable levels) has been so bad I’ve pretty much been unable to do any work for the last few weeks apart from attending meetings (listening but not contributing as much as I usually would) and writing here on the blog.

Yesterday, when I came onto the computer to do some work (I didn’t manage to actually do any work in the end)* I got completely distracted. Don’t ask me what distracted me because I honestly don’t know but somehow I ended up looking at sustainable living/baby related sites.

Our kitchen has several plastic and glass (pyrex) storage containers but as part of my journey towards zero waste I’ve been wanting to get my hands on some leak proof stainless steel containers for getting meat from the butcher. I also wanted to get my own spork to go into my zero waste eating out kit instead of transporting a cutlery set (i.e. cut my kit back to a spork, straw and napkin, along with my sandwich wrap, jar of snacks and stainless steel drink bottle for longer trips out and about.

My original zero waste eat out kit… spoon, chopsticks, straw and napkin. I want to replace the normal sized spoon and chopsticks with a reasonable sized spork (a more flexible tool with less to carry around)

On one of the sites I ended up on I found a good special on both of these items so jumped in and bought myself 2 stainless steel containers (with BPA free lids that seal and a removable divider inside) and a bamboo spork.

My zero waste purchases

I also bought my supplements online for the first time (calcium and folate), so now I’m waiting excitedly for my packages to arrive!

I’ve also started a list of things that I will need to consider buying in the near future. Because my wardrobe is now so minimal and I wear my favourite things most days, I’ve reached the point where things are starting to wear out.

Some of these things won’t be replaced, like the 2 dresses that reached the “I can see my undies through them” point in the last few weeks, because I have already decided I had more than I actually needed of these items.

I’m now down to 7 dresses. I wear dresses almost every day, all year round. Seven is probably still more than I need but as things wear out I consider whether I need to replace it or if something else I already own fills the same niche. I’m getting closer to the magical 33 Items recommended by Courtney Carver from Be More with Less in her Project 333 (I’m down to 36 items, excluding underwear, shoes, and accessories – scarves, jewellery, hats, etc).

Other things will need to be replaced, like undies. I bought 4 new pairs of undies from the local shops in July last year (bonds brand). These are already reaching the point where they’re starting to go see-through or holey. They’re also not very comfortable to wear anymore, riding up or falling down regularly.

My other 3 pairs of undies I bought online in March (2 months earlier) and they’re still going strong with no sign of being even close to worn out. They’re extremely comfy and actually function as pads (just add inserts) by themselves if you want them to. Last time I bought 3 pairs of the charcoal grey colour.

I want to keep some colour in my collection so I’m considering replacing the most uncomfortable ones I’ve got with more of the Maia Hipster Lunapanties but in other colours (one pair each of aquamarine, festival pink, and royal stripe).

The more uncomfortable ones are still ok at the moment, and the ones I want are reasonably expensive for underwear, so I’m going to hold off as long as I can (hopefully until the end of the challenge in 9 weeks).

I’m also going to need to replace my sandals at the end of summer. The inner lining tore the other week and although we have attempted to fix it the patch is already tearing as well so they’ll need to be replaced. I have worn them pretty much every hot day since October 2014 so I guess they’ve done their stint (probably equivalent to almost a year of daily wear).

I’m considering Birkenstock sandals like this or this because they’re meant to be long lasting, and sustainably and ethically made.

How do you decide when it’s time to let go of your favourite items?

*I have managed to do some work today which is great! I’ve been really stressed about how bad my ability to get things done has been, especially given I have commitments to meet.

Share Your World – Week 5

The questions this week have been very thought provoking and I’ve struggled with a few of them but here we go…

If you had a shelf for your three most special possessions (not including photos, electronic devices and things stored on them, people or animals), what would you put on it?

I don’t really focus much on ‘stuff’ and ‘possessions’ any more so I’ve struggled to think of 3 things that would go on the shelf.

I would definitely include my childhood teddy. He’s been through everything with me and he’s not going anywhere…

The second thing I’d put on it is the old cigar box that currently holds my yearly letters to E. Starting from our wedding day I’ve written a letter to him each year as part of his anniversary gift.

The third thing I’d add would be my special jewellery… My engagement ring (was my great grandmothers) and wedding ring, my heart necklace (6-month dating anniversary gift from E) and my crystal necklace (also a family heirloom).

If you had a box labelled ‘happiness’, what would you put in it?

NOTHING, or a note that just says ‘Be Present’. I would use it as a reminder that happiness comes from within, not from external sources.

What do you want more of in your life?

I’m very happy (or as happy as I can be) with my life at the moment but I’d be happy if I was able to have more family time and less pain/health issues.

Daily Life List: What do you do on an average day? Make a list of your usual activities you do each day.

An average day… I was planning to do a day in my life style post like my friend Joy and Toni Bernhard anyway so I guess I’ll describe it here.

Wake Up time… Generally between 8 and 9 am (although the last few days I’ve woken earlier then fallen back to sleep). At this time I take a moment to scan my body and see what parts are hurting the most and the least (there’s never no pain so it’s more an assessment of how well the day is going to start).

While still lying in bed I do at least a 5 minute meditation before stretching and slowly sitting up. Most days I’ll take a shower (sitting on the floor to avoid falling over or making pains worse) and get dressed.

Breakfast is the next task to address. I make a cup of tea and see how much energy I have. Most days I just have a piece of fruit or something premade that’s easy to eat. When I have the energy I’ll make a cooked breakfast with veggies and eggs.

While the kettles boiling (and breakfast is cooking) I’ll do a short sun salutation. Just 5 minutes is enough to stretch out my muscles but it also wears me out again.

After eating breakfast it’s time for another rest so I’ll sit on the couch drinking my tea. I may browse Facebook on my phone.

After 10-15 minutes rest, I’ll read through some blogs for up to 30 minutes (usually closer to 15 minutes) then push the button that sends the robot vacuum on a round of the kitchen/family room and laundry.

I’ll clean the litter trays and then assess how I’m feeling.

If it’s a good day I’ll do an hour or two of work (writing blogs, working on consulting jobs) or spend some time cleaning up around the house with regular short rest breaks in between. If it’s a bad day I’ll put the tv on or listen to an audio book.

At around 11:30 I’ll start thinking about lunch. Generally this will either be left overs or a sweet potato which I throw in the oven with salt, pepper and oil and leave to bake for an hour.

After lunch I have a nap before either doing a bit more work/housework or putting the tv/audiobook back on.

Around 5 I start considering dinner. I slowly make dinner taking lots of rests and by the time E is home (generally between 6 and 7pm) dinner is ready to eat.

We eat and watch tv until around 9-9:30 when I take my medicines, floss and brush my teeth, shower and bed.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful that I’m able to live a slow life. Over the weekend E and I were able to slow down and just relax. I spent a whole morning listening to audiobooks while E was on the computer and doing things around the house, we visited family and we went for a slow walk in the local national park.

This week I’m looking forward to continue living slowly. Taking the time to enjoy the simple things like the warmth of the sun and the sound of the rain. I’m also looking forward to afternoon tea with Rach as a special mid-challenge catch up as part of our 20 week no-buy challenge.

Share Your World: Week 4

I can’t believe it’s almost the end of January already and we’re up to week 4 of 2016!

So far this year I’ve been struggling to maintain my balance. If I look at it from a week or month point of view I’m doing ok but on a daily basis I’m still struggling. Some days are crashed on the couch and unable to do anything much other than listen to an audio book or the tv in the background. Other days I’m rushed off my feet trying to do appointments and out of the house activities… I haven’t worked out the balance there yet.

It’s difficult for me to work out how to do this properly because I see the benefit of not having to drive more than once or twice a week (it’s still an activity that wears me out a lot) but then it means those days I am out I don’t manage to pace my step count, I don’t get my usual rest breaks, and I just over do it in general.

I’m also struggling to get any sort of regular routine in place for work activities. I’d love to be doing at least a minimum amount of work each week but Foggy Frog seems to be my constant companion again and he’s making it very hard for me to do anything for more than 5-10 minutes at a time with any hope of having reasonable results.

How do you pace yourself with activities outside the house or with adding in any work?

Anyway, being Thursday today, it’s time for another round of Share Your World.

What one thing are you really glad you did yesterday?

Yesterday was one of those super full days where I over did it. That doesn’t mean there weren’t things I achieved that I’m really glad to have done though…

I managed to make it in to town to have lunch with E and one of his work colleagues before heading to the meeting I had in the afternoon. This is something that I really enjoy doing as it doesn’t happen very often these days unless I have a medical appointment in town.

Are you generally focused on today or tomorrow?

I do have a habit of focusing on things that I feel are important or scary that might be happening in the future but these days, thanks to the uncertainties related to my health, I’ve gotten a lot better at just focusing on one day at a time. Most weeks I don’t even look at my calendar in advance unless I’m booking something in. I might check it the night before when I’m getting ready for bed or when someone asks me what I’m doing.

Would you want a guardian angel/mentor? What would they tell you right now?

A mentor (or several mentors) provides inspiration, advice and guidance to help you succeed the best in life. Yes, I’d want that in my life and look up to several people in my life now as mentors.

Right now my mentor would be telling me to remember to be gentle with myself. As you might be able to tell from the last few posts I’m feeling very frustrated about my limitations at the moment. I’m wanting to do way more than my body will actually allow and I’m struggling to accept it. If my mentor was here right this minute they’d be reminding me that my health is the most important thing, without it I can’t do anything. They’d be telling me to continue to listen to my body and rest when I need to, to accept where I am at the moment, and to not set unrealistic expectations for myself.

Would you rather live in a cave house or a dome house made out of glass? (photos of the houses found on google search)

I love the idea of both but my dream house would be a dome house that’s built into the ground with lots of glass… something like this.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful for the understanding and support of the wonderful people in my life. I realised in the last few weeks that I’m not going to meet my deadline for one of my consulting jobs. When I contacted the client to let them know they’ve been very understanding and said there is no rush and to just work on it as quickly as I can.

Being able to spend time with my friends has also been very satisfying.

In the next week I’m looking forward to talking with my doctors about some test results I got in the last week and hopefully getting some guidance on how to approach the issues that have arisen (More to come in an upcoming post on this).

Share your World: Week 3

 

Today I’m seeing my doctor to follow up on the side effects and blood test results. I’m feeling very frustrated with myself lately. Thanks to the side effects I’ve been struggling to do any work, even writing these posts is taking me many times longer than normal.

What is your favorite piece of art? (it doesn’t have to be famous)

I don’t really have an answer for this one as I tend to favour art work that has special meaning to me or that evoke emotion in me and there are several that fit that category. Looking around our house at the moment there are two that stand out to me…

The first professional photo of me and E. This photo was taken almost 10 years ago. Every time I look at it, it makes me smile and feel good inside.

This painting was a birthday present to me and E on our 30th birthday last year. It was painted by one of our friends and I love how simple it is. It hangs in our toilet and adds a point of interest to an otherwise boring room.

What made you smile today?

Watching the cats chase each other around the house. Cats can be very entertaining and also great therapy. When I’m feeling my worse and spend my time curled on the couch I love having them come and curl up with me.

Which place do you recommend as a Must-See? Please state which country, state or providence.

Dangar Island, NSW, Australia.

My Aunty lives on this wonderful island in the middle of the Hawkesbury River. It’s home to a few hundred locals while others have holiday homes on the island. Apart from the communal vehicles for maintenance and emergency services there are no cars on the island and you can only access it by ferry.

I love how peaceful it is on the island and the fact that there is such a communal feel.

Complete this sentence: When I was younger I used to….

hide in cupboards with my sister.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I was grateful for the opportunity to float in the ocean and spend time with family and friends. I’m hoping to make more beach trips this summer, especially given the fact that I’m meant to be doing more water based exercises at the moment.

I’m also grateful for having rediscovered my meditation mantra from last year, it’s been very helpful to me while I’m dealing with the extra symptoms and side effects.

May I/you be peaceful and true

May I/you have an open heart and open mind

May I/you be free from all suffering

This week I’m looking forward to getting some answers from my GP and taking the time to focus on recovering from the last weekend.

Week 7 No Buy Challenge: Celebrations, side effects and PEM

 

Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

• I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
• High levels of pain down the inside of my limbs (especially my left leg).
• Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?

Week 1 No Buy Review… Hot and Foggy

It’s been a week since Rach and I started our 20 Week no buy challenge and I may have already gone against my lists….

Let’s have a quick overview of the last week.

The weather here has been very hot and variable. Because of these weather changes my health has also been all over the place with the brain fog, fatigue and pain all higher than my normal levels. I’ve also been feeling mentally vulnerable at the moment due to a whole range of things happening around us so I’ve been very emotional.

That doesn’t mean I haven’t had some good times over the last week. On Friday night our local Council hosted one of their Moonlight Markets in the local park. My husband and I went along. We had dinner together and I bought a pair of earrings…

Now I’m still tossing up whether these earrings will be for me or a gift for someone else, but I feel that I’ve broken one of my ‘will not buy’ items…

They came packed nicely (see below) so at the moment they’re sitting under our christmas tree. They’ll either be a present for someone else or I’ll open them for christmas.

There were several times when, thanks to my emotional vulnerability, I was tempted to buy junk food or have lunch out by myself during the week but I didn’t!

Most of the week was spent resting, although I did manage a bit of work and also had a few appointments and social activities.

On the weekend (when the weather was at it’s worst) my husband and I went to the local shops to buy a lego set that we’d been looking at for a while that was cheaper than we’d seen it before. While in the shops we found the last book in the Obernewtyn series, a series that I have been reading for many years. Because I already owned all the other books we bought this one as well and I’ve spent a lot of time since then reading (started the series from the beginning again because it’s been 4 years since the last book came out).

Other than those two purchases (the book and the earrings) I believe I’ve stuck to my guidelines pretty well…

• We went and watched a friend playing ice hockey on Sunday morning. A nice way to spend such a hot morning!
• We had takeaway for dinner last night after a workshop I was running. This fits with my guidelines as it was a shared meal with my husband.
• We’ve done grocery shopping and purchased fresh local cherries, apricots and handpicked beans.
• I’ve purchased a set of stainless steel straws that I’ve been looking at for a long time. I often need to use straws but feel guilty about the waste they cause. Having a stainless steel straw in my bag at all times will mean I can say no to the plastic ones.

My zero waste eating out kit that lives in my handbag consists of a spoon, chopsticks, straw and napkin.

So there have been both positives and negatives this week. Let’s see how I fair in the next few weeks leading up to Christmas!

Check out how Rach did in the first week in her post here.

Have you been joining us on this challenge? If so, how have you been going?

The Difficulty of Pacing: Work

I’ve been so excited to hear from you all about your thoughts on the most recent A-Z guide to a simple, sustainable and meaningful life. One of the questions I’ve been asked to share more about is how work fits in to pacing with a chronic illness.

One reader in particular approached me with her current situation and I could see a lot of similarities so I wanted to talk about the issue in more detail.

This lady has ME/CFS like me. I’ll let her share her experience in her own words (modified for privacy):

I’ve been working on trying to get my activity level up for a while now but have only been keeping track of my daily steps for about a month. At the moment I seem to be averaging about 4000-5000 steps a day which I’m really happy with. I think a couple of years ago I would’ve been lucky to average 1500-2000. My main problem at the moment is that my step count is very inconsistent. It can vary anywhere from 2000 steps a day to over 8000 a day depending on the activities I have on.

I’ve now been back at work for just over 3 months… I’ve only been doing short shifts (3 or 4 hours) but these shifts involve being on my feet and walking around for most of the time. This makes it hard for me to pace myself and on a work day I don’t think it would be possible for me to keep my step count below 8000. I then find that the day after I have worked I’m exhausted and my step count is very low.

The issue here is the inconsistency. It’s something I can relate to strongly, on the days I need to go out of the house I tend to find myself doing double or more steps than on the days I’m home and can pace myself. I’ve also found it harder to avoid crashes since I’ve started working regularly.

My exercise physio has made it clear to me that the most important thing in order to avoid crashes is to be consistent. As the reader above stated, this isn’t always possible. It’s difficult to maintain a consistent level of activity when you have to do more on certain days due to engagements you can’t (or don’t want to) avoid, things like doctor’s appointments, work, important social events.

One thing I’ve done to try and help with consistency, is to consider it more on a week or monthly basis (rather than a day by day basis). That is, like the reader above, some days I do a lot more but I balance that out by doing a less on the other days.

I’m not completely happy with that approach though because some days I’m doing less because (like today) I literally have no energy left. What I’d like to do is find a way to pace so that even though I do more some days and less on others, I’m not doing the less because of crashes. I want to be doing it because I want to.

Pacing is about setting base levels and sticking to them for as long as necessary before slowly increasing them.

Since I’ve started working again, I aim to do a minimum of 5-8 hours a week. I break this down into smaller time slots. Some days this may be an hour at a time, other times (like today) it’s in 5-10 minute blocks…

I’m lucky in that most the work I’m doing I’m able to do from home and sitting down, but I still need to pace myself. I need to find the right balance of mental and physical activity to maintain my health.

In an ideal world, we’d be able to only work what fits with our health but in some roles (as with our reader) there are minimum shifts that you can do so if you’re going to work at all it’s likely to be too much to start with.

In response to the reader’s concerns I’d like to offer some advice…

If it’s possible to take short breaks, or even just ask for a stool at the counter (if you’re in customer service), that would give you a chance to pace yourself even within your shifts. However, knowing the area you are working in I know that the workplace isn’t always willing to be that flexible.

From what you’ve said to me it does sound like you are doing the best you can in your situation. It’s great that you’re tracking your activity levels and maybe you could look at working out what your baseline is.

How do you pace?

If you work, how do you manage the difficulties this can raise?