Category: Pacing

Getting back into the swing of things.

I feel like I haven’t written anything in ages! Partly that’s true. I haven’t posted for over 2 months. But I have been writing a little.

There’s a host of reasons for why not. Some of them good, some of them…. not so much.

I’m battling yet another new health issue. It never seems to end. I’ve written a lot about gut health and dietary things, and until recently I had my IBS under control. At first I thought it was because of a little too much sugar and grains sneaking into my diet over Christmas, but getting strict again didn’t resolve it this time. So I think something else is going on, and it’s causing me a massive amount of gut pain and digestive issues.

Of course, all of my initial test results have come back normal, so now I’m booked in for a colonoscopy – fun times ahead – not! I guess you can all look forward to a blog about that!

I’ve also been battling the demons in my head again. It’s not unusual when a new health issue arises (or an old one just gets too much) for mental health to take a bit of a dive again.

I’m going to take a little detour around that and come back to it in a moment.

The ever tolerant Knight in Tarnished Armour and I have been renovating for what seems like forever. Some of the things we wanted to do got put on hold when I got sick. It simply didn’t make financial sense to borrow money for mostly aesthetics when we really didn’t know if I was ever going back to work.

We’ve diligently saved up and worked out cheaper ways to do things, and studiously ignored the unfinished and unpainted bits. But now we are getting some of the things done! Yay!

Part of the reason for this is that I got myself registered as a Marriage Celebrant and have been setting up my home office sorted and doing all the things associated with setting up a new small business. I’ve got a couple of weddings booked and I’m super excited about this new adventure.

Now I’m never going to make a massive amount of money doing this. But it’s a job I’m already loving – possibly as much as I loved being a vet! And it’s much more manageable energy wise.

But the renovations has included getting some painters in to finish painting the places that we started. Now I actually don’t mind painting. It’s a task I used to help with when I was a kid. My tiny kid hips would fit between the handles of a ladder so I could happily sit at the top, and monkey up and down painting the cornices of a room, while my vertigo affected mother tried not to watch!

As an adult, I can remember painting half a wall before work, heading off to do a full shift as a vet, then painting the other half when I got home. So getting people in to paint walls really triggered the FibroTroll to bring over all the mental health friends (co-morbid conditions) and along came all those feelings of guilt, inadequacy and depression. Combined with the new health issues. I’ve really been struggling.

So I’ve been back to my psychologist, who again has proved her worth. I’m in a much better frame of mind – and that’s probably the reason I’m back here.

We talked about a lot of things. I was reminded to get back into my meditation, yoga, writing – all the things that I know help, but then start to forget when things take a turn for the worse.

But the big thing we talked about was priorities. Everything we do in life requires an allocation of resources. It might be time, it might be energy (physical, mental, emotional, spiritual) and it might be money. And how we choose to prioritise those resources is up to us.

Back when I was well, the limited resource was usually time. As a university student, it was usually money. Now, it’s energy. I’ve got loads of time. I don’t have loads of money, but I’m super lucky that the Knight earns enough that we are comfortable. But energy – oh that precious, precious resource!

So now I’m sitting at my dining table with my laptop, while a very nice man is sanding and filling gaps and cleaning and prepping my front room. He’s going to paint it later today and tomorrow and then my new office will be freshly painted and looking lovely.

This is something that I can do. I have the knowledge and skills to perform this task. (Probably not as good as the painter’s skills.) But it would literally take me weeks or months. He’ll be finished tomorrow – and do a better job. And that energy that I would use on that task will simply not be there for anything else.

I won’t be able to cook, do the washing, write blogs, meet clients for weddings, do gardening or any of the other things that compete for my energy resources. My energy is already lower due to the new health issues and needs to be saved for looking after me and the Knight.

The Knight hates painting, so he doesn’t want to allocate his time and energy to that task. He also doesn’t much enjoy cooking and cleaning (although he does do those anyway) and very much does not like watching me in pain.

So instead of feeling guilty about this, I have re-framed it as a choice. Instead of allocating the resources of my time and energy into the painting task, I have chosen to allocate the resource of money – to pay someone else to do it. The priority for both the Knight and me is that I keep my energy for the other tasks, so that I don’t collapse in a heap and he has to take time off work to care for me. And the big break-through that I have had this week? – I’m ok with that choice.

(Not so) fun times with Endometriosis. (Part Two- advice for pre-op.)

I started series of posts with Part One being a description of my experience with surgery. This part (and so far, I’m not sure how many parts it will be!) is going to be my tips for preparing yourself mentally and physically for surgery and for the post operative time. This is aimed towards surgery for endometriosis, but some of the tips will be useful for other surgeries too.

Obviously, not all of these tips are going to work for everyone. Some people have children, or work or have other health conditions that will change their needs. I really shouldn’t have to say this, but if any of your health care professionals tells you to do something different to this advice – FOLLOW THEIR ADVICE!! I don’t know your body or your other health conditions. I only know mine!

1. Pelvic floor exercises

You are about to undergo a surgery that is going to poke around in your pelvis. If you make that area as strong as you can, it will heal faster. There will be a healthier vascular system – this will both assist in controlling blood loss from incisions and improving blood flow to the area afterwards to assist healing and removal of toxins.

Don’t just do kegels though. Your pelvic floor is basically a big sling for your internal organs (a simplified explanation), and you need to work on all of it. Your body alignment, your pelvis, how you sit and stand all have an affect on your pelvic floor. I did the pelvic floor exercises from healthymoving.com, but I had already signed up for her coaching and challenge program so it didn’t cost me anything extra. Alternatively, an exercise physiologist or physiotherapist can give you specific exercises to help strengthen your pelvic floor.

The other great bonus to this, is that a strong pelvic floor can help with bladder or bowel incontinence, reduce the risk of prolapse and improve your sex life! There is basically no down side to improving your pelvic floor strength.

2. Good nutrition

Although today’s anaesthetic drugs are really quite safe in comparison to days gone by, they are still drugs that your body has to process and remove. For the most part, once you wake up and have breathed out the last of any gaseous anaesthetic you might have had, this will be done via your liver and kidneys and excreted via your bladder and bowel. (Don’t be surprised if your motions smell strange for a few days!)

Unless you have a liver or kidney dysfunction, removal of those drugs will happen no matter what you eat. However, your body is busy doing an awful lot post surgery. It has incisions to heal, hormones to regulate – especially if your ovaries were involved, pain to manage and pain relief medications to process.

If you give your body good nutrition in the weeks leading up to your surgery your organs will be in a better state to deal with this. You will use less ATP (the molecule that cells use for energy) and the process will be easier. Good nutrition is vital for managing the FibroTroll, and is especially important both pre- and post- surgery. I’ve written quite a lot about this, you can find some of those posts here, here, here and here.

If you can, make food for the freezer. If you have a couple of weeks, this can be done by doubling your normal recipes and then putting half in the freezer. If you don’t have that sort of time, see if you can get a friend or family member to help you and spend a day or afternoon making meals for the freezer.

Make sure you have high fibre appealing snacks available. It is not unusual for anaesthetic and pain relief drugs to make you nauseated and/or constipated. You might not feel like eating, so making sure there is something tasty to eat will help. The high fibre will help prevent constipation. Trust me on this, constipation following pelvic surgery is not something you want to try if you can avoid it.

3. Prepare post surgery entertainment.

If you are like me, you will get bored when you can’t get up and move around easily. I tend to think I’m better than I am, and do things too soon and delay my healing. To avoid this, it is good to find some things to do that you will enjoy and that will stop you doing other things.

Find some good books, re-read old favourites or try new titles from authors you already know you like.

If you like to knit or crochet, find a simple but appealing pattern to try. Get the yarn and needles or hooks together, put them in a bag or basket or box with some scissors, the pattern, stitch markers, darning needle and anything else you might need.

Indulge in a game on your phone or tablet if you enjoy that sort of thing. Remember that blue light will interfere with your sleep, and you need sleep to heal, so try to avoid doing that in the evenings.

Watch a new series, or re-watch an old favourite. This is a perfect excuse to binge on Buffy the Vampire Slayer or Dr Who or something similar. Again, remember not to do this in the evenings.

4. Do a spring clean.

I know it’s hard to keep on top of housework when you have a chronic illness. But it is going to be worse post surgery. So doing as much as you can now, will save on things to do afterwards.

Make sure you have plenty of clean pyjamas and loose fitting pants. If the weather is cold, make sure there’s plenty of clean warm clothing. If the weather is warm then loose fitting dresses can me your friend. Anything that avoids putting pressure across your abdomen is good.

Change the linen on the bed, so you have lovely clean sheets post surgery.

5. Pack an overnight bag.

My surgeries have always been day surgery. Meaning I have been discharged the same day and not had to stay overnight. But it pays to be prepared. If there is a complication or your surgery gets delayed due to someone else’s emergency, then there is a chance that the surgeon will want you to stay overnight.

I keep it simple. Clean underwear, change of clothes – I choose something that I am also comfortable sleeping in. Toothbrush and toothpaste, body wash and moisturiser. I find my skin gets very dry in air-conditioning, so I do like to pack a moisturiser. Sanitary pads. I don’t like the ones that hospitals supply, so I bring my own. A book or a crochet project.

Bring your own food if you have lots of dietary restrictions like I do. The last thing you want post surgery is an IBS attack to deal with as well!

6. Organise transport.

This is super important. It is simply not safe for you or the other drivers on the road to drive yourself home from hospital. If you live alone, try to organise someone to be with you for the first 24 hours at least. If this isn’t possible, discuss this with your doctor. They might be able to keep you overnight in hospital or put you on to a service provider that can help.

7. Make arrangements for important commitments.

A few days after I had booked my surgery, a federal election was called and the date scheduled for the day after my surgery. There was absolutely no way I was going to walk down and back up the stairs of my high-set house, let alone think about something like voting the day after surgery.

So, I organised a postal vote, which was great as I could sit in front of my laptop with the voting card and actually research the policies of every candidate in my electorate.

8. Mindfulness

Meditation and mindfulness can go a long way in helping your healing. If you are at all anxious about surgery, I strongly suggest talking to a psychologist if possible and practising mindfulness. Anxiety increases cortisol which can reduce or delay healing. It can also interfere with anaesthetic drugs, meaning you need more drugs to achieve the same result.

Deep breathing techniques where your exhalation (out breath) is longer than you inhalation (in breath) helps to calm the nervous system and activate the parasympathetic nervous system (the calming side of your nervous system). If you can, practice this when you are in the pre-op room. It gives you something to do when no-one is poking at you, and will make the anaesthetic smoother and easier on you (and your anaesthetist!)

But don’t just start in the hospital. Start now. Really. Even just taking a couple of moments to focus on your breathing will make a difference in the long run. I challenge you when you finish reading this, don’t just go on to the next thing you were going to do. Take a deep breath, count slowly to 5 while you do, then slowly let it out again, try and make the exhale twice as long – i. e. count to 10. You might need to purse your lips or do something else to slow your exhale down.

Then do it again. Do it 10 times. Then do it again tomorrow. You don’t have to sit for 20 minutes and meditate (although it’s awesome if you can), start with the breathing and go from there.

Good luck!

Go back to Part 1 or forward to Part 3 or skip to Part 4 and the addendum.

Seven tips for holidaying with Fibromyalgia

At the start of this month, the Knight and I went away for a few days. We had tickets to see Tim Minchin – a hilariously funny, intelligent, gifted musician, who plays piano, does a lot of political and religious satire, and swears a lot. The Knight and I are both big fans.

We missed out on tickets for his Brisbane show, so when Gold Coast tickets were released, I jumped straight at them, and decided I would figure out the logistics of travelling and hour and a half later. It worked out well, because it’s the Knight’s birthday this month, and he was very happy to have a weekend away and tickets to one of his favourite comedians as an early birthday present!

Functions and events are hard when you have Fibromyalgia. There’s the noise and lights and seats and lots of people and massive amounts of sensory input that drains your energy very quickly. Add to that, evenings are my worst time of day, and I have to make sure I plan to do nothing the next day, to try and avoid a flare.

But you cannot live your life in a bubble. It’s boring and makes your depression worse. So here are my tips for weekend getaways or travelling for functions:

1. Book a self contained apartment

I found a lovely little one-bedroom apartment, with a small but fully equipped kitchen, some comfy couches, a dining table and 2 small balconies over looking the water.
There was a place to play board games, and separate places to eat, so we didn’t have to pack up mid-game. It also meant I could go and nap, and the knight had some comfy couches to relax on without having to sneak around to avoid waking me.

2. Bring your own food

Catering for yourself, not only saves money, but keeps the IBS under control. If you do go out to eat, do your research in advance. If you have dietary intolerances, it is unfair to expect a restaurant to cater for you without any advance warning.

3. Take some extra days

We headed down on the Thursday afternoon before the show on Saturday. This gave me a full day to recover from travelling and to relax and enjoy the time away. We stayed until Monday, so that Sunday could be spent doing as little as possible to hopefully avoid the dreaded DOPEM (Delayed-Onset Post-Exertional Malaise).

4. Bring low energy entertainment

We brought a few board and card games with us, our favourite at the moment is Hero Realms. We also brought Carcassonne and Ticket To Ride (India/Switzerland) as they are both good with only 2 players. This allows us to do something we both enjoy together, and interact. So much better for our relationship than just watching hours of movies sitting on separate couches! (No judgement for those who do this, we do it too sometimes, it’s just not our favourite thing to do together.)

5. Bring your Yoga mat

View of the ocean and surf and a park with green grass and pine trees. Blue sky and fluffy white clouds.
View from one of the balconies.

Unfortunately the FibroTroll doesn’t take holidays. I find yoga and stretching to be very helpful for reducing the overall pain I have each day. The exercises might hurt a bit sometimes, but generally not as much as I hurt when I haven’t done any of them for a few days.

On the plus side, this is the view I had each day as I was doing my exercises.

I also meditated on the balcony each morning. Having the sun come up over the water and shine straight in your face is a wonderful way to wake up!

6. Pace Yourself!

As much as I get frustrated with pacing, it really is extra important to do it when you are on holidays too. Taking the time to relax and not push yourself to do “All The Things!” means that you will enjoy your break and not come home more exhausted than before you left.

7. Do a load of washing

I know this sounds boring and not at all like it belongs in a what to do on holidays list. However, if you are going away for more than just a weekend, there is going to be a lot of washing to do when you get home. If you can, do a small load of washing on your second last day. This means when you get home, you can just put all the clothes back in the cupboard. It will save a surprising amount of energy when you get home.

So those are my tips. They worked fairly well and I didn’t have too much of a flare afterwards. Unfortunately, other health issues have flared up instead, (the FibroTroll has many friends) but at least I managed to keep the FibroTroll mostly under his bridge.

Sunrise over the ocean, with pine trees in the foreground.
Sunrise from the other balcony.

The last morning, when I couldn’t sleep, the picture to the right was my view as I sipped my coffee and the Knight had a little bit of a sleep-in. Not too much of a hardship!

In the end, I can say for certain that it was worth all the effort. I laughed so hard I cried, and the Knight and I have been singing random bits of Tim’s songs to each other for a week!

Delayed Onset Post Exertional Malaise

The FibroTroll, as I’ve mentioned before, is a bit of an arsehole. He likes to beat you with his club at short notice and for minimal reason. The other thing he does, is hold a grudge. Like really, really, hold a grudge.

I’ve noticed a theme the last couple of weeks in a few of my Fibromyalgia and other chronic illness support groups that people will comment that they did something on Saturday, didn’t feel too terrible on Sunday and then on Monday feel like they’ve been run over by truck. Or work a few days, then have to sleep the entire weekend.

This happens to me too. The technical term for it is Delayed Onset Post Exertional Malaise. Basically what it means is that you’ve used up all your energy, but your body doesn’t realise it until 24-72 hours later. It is mostly described in relation to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), but it is common with FibroWarriors too.

It’s as if your car could run out of petrol but keep driving for another 10 km, but use up petrol that hasn’t been put in the tank yet. Then when the fuel light finally turns on, the car won’t run, and you have to replace that 10 km worth of fuel before the tank is even empty.

Possibly not the best analogy, but that’s the way I explain it best. (If it helps, pretend that car’s fuel tank is in some Dr Who’s parallel dimension!)

It makes it even more difficult to learn to pace yourself. For most people, (myself included before the FibroTroll came to stay) when you think about pacing, you think that all you need to do is stop when you get tired and rest. This doesn’t work. You have to work out how to stop BEFORE you are tired. Yep, you have to guess when that fuel warning light SHOULD go off, and ideally stop when there’s still fuel in the tank.

The other problem with Delayed Onset Post Exertional Malaise, is that if you do a thing (work, exercise, function, exam – basically anything that is physically, mentally or emotionally more draining than normal) and then might not feel too bad the next day. So you don’t rest as much as you should. Then the next day (or anywhere up to 72 hours post thing), that’s when it hits you. Except that because you didn’t rest the day after, it actually turns out that you went 20 kms into that negative fuel tank.

And this is where the FibroTroll’s grudge holding comes in. He’ll beat you with his pain club, his fatigue club and whatever other club he finds lying around, and often invite his friends over for a party.

My advise for this, is to ALWAYS schedule a rest day after a thing, if at all possible. I’ve done it for today, as I had a big physically challenging weekend. I gave myself permission to not get things done. No washing, no cleaning, absolutely nothing but the necessities. I kept my yoga routine down to the basics – pretty much just stretching. I have allowed myself to write this blog, as I am doing that in my HBO2 chamber and don’t have to move much to do it. But had the weekend been mentally challenging, then I would have curled up with a trashy novel or some simple crochet and tried not to even think. I’ve already given myself permission for tomorrow to be the same if I need it. Hopefully, that will be enough to avoid the crash.

If you want to read more on my thoughts about pacing, I’ve written quite a few posts about it. You can find them here, here, and here. I mention it a lot and I really do think it is one of the most important aspects of learning to manage the FibroTroll.

Do you get Delayed Onset Post Exertional Malaise? If so, I’d love to hear how you manage it – I can always use new tips!

Pacing – household chores

Housework – definitely gets onto the list of most people’s least favourite things to do. I can tell you it’s on mine. But I also like to have a clean house, so it needs to be done.

I’ve mentioned before that my Knight in Tarnished Armour is fantastic. He is my main support person and does so much around the house for the general running of the house and in taking care of me – especially when I’m flaring.

However, it simply isn’t possible for him to work full-time, take care of me, do all of the household chores and have time for his own leisure and self-care. I’m a big believer in self-care and if the Knight gets too run down and sick, then we are both screwed, so giving that up is not an option. So I do what I can.

When I was first diagnosed, I was told I had to learn to pace myself and “stop before I got tired”. Honestly, that was, at the same time, both the most helpful and unhelpful piece of advice I have received in regards to my Fibromyalgia.

It sounds simple right? Quit while you’re ahead, that sort of thing. Except that it’s not. When the FibroTroll can come out of no-where and smack you with his extreme exhaustion club in the space of two minutes from feeling relatively fine, it’s very difficult to know when to stop. Doing nothing at all is not helpful either, because the less you do, the more muscle tone and strength you lose and the more unfit you become, so you get tired faster.

We tried having a cleaner come once a week or a fortnight. That seemed like a great idea, except that they wanted everything to be “tidy” before they started. So I had to pick up the baskets of laundry off the floor, wash and put away all the dishes in the kitchen, put away the random things that accumulate on bathroom sinks, or table tops or – let’s be honest here – any horizontal surface, and generally have the place tidy so they could clean. If I was having a bad run the day/s before, then that would use up all of my energy and some of the next day’s. If the knight had to work late the day before, then he couldn’t do it either. Then I found that their cleaning products gave me headaches – so I had to make them use my own. I also couldn’t relax while they were here. They would have questions, or I would need to move when they were vacuuming or any number of things. Yes, I had a clean house, but I ended up using just as much energy in preparation and tension that it simply wasn’t worth it.

So instead I’ve learnt to pace myself. This was (and still is) difficult to do. I have learned to listen to my body. Little hints, that the FibroTroll is waking up. You would think that pain and exhaustion would be obvious. But when you live with pain and fatigue every single hour of every single day, it can be a bit harder to determine.

For me, dropping things is an early warning sign. If I drop more than one piece of food on the floor while making dinner, it’s a pretty good sign that I need to get the knight to take over. Noise sensitivity and difficultly staying focused are other early signs. Dizziness, difficulty finding words, muscle twitches and shakiness are even bigger indicators that I need to stop. And of course, increased pain and fatigue. It’s best if I stop before any of those later warning signs start to happen. The only way I have been able to do this, is to pace myself or use a timer.

Sometimes I’ll break the chore down into smaller pieces. For example the bathroom. I break it down into: toilet, toilet sink, big sink, bath/shower, mirrors and shelves, and the floor. As I generally do the toilet twice a week,  I can just do one section a day if I need to. The bathroom cleaning products all live in the bathroom, so I can just do a little bit when I need to. Sometimes I can get it all done in a day, broken up. Other times, it takes me all week. It can be frustrating to not have a bathroom that is completely clean in one go, but at least I know that every bit has been cleaned so it’s hygienic.

Not every chore can be broken down into small bits like that. So most of the time I use an actual timer – the oven clock, on my phone or any other timer that counts down. If it’s physical and a task that is likely to take more than 10 mins, then I set a timer. The biggest challenge to this, is to actually STOP when the timer goes off. This is hard to do. I usually don’t feel too bad while I’m doing the task and I just want to get it done. But I have learnt that if I do this, I actually get more done.

I’ll give you an example. We needed to oil our deck. This involved giving it a good scrub, letting it dry and then painting on the decking oil in two coats. Now we have a huge deck. It’s about 8 m x 6 m minus the stairs and a bit where the kitchen juts out. To help you imagine this, our 12 seater table takes up less than half of the space. It also has wooden rails and privacy screening on both the short sides. It was a big job. So the knight and I got to work. I set a timer for 10 minutes and when it went off I lay down for 20. Then I got up again and did 10 more minutes. I did this over the course of the project. When I did, I found that I could do an hour or two of work a day and not trigger a flare. If I tried to do an hour of physical work like that in one go, I would have managed one hour and triggered a flare and been in bed for three days afterwards. I would do a couple of bouts of 10 or 20 minutes each day when the knight was at work and on his days off, he would do a few hours in a row and I would do my 10 minutes on, 20 minutes off routine. We got it done. Could we have done it quicker? Probably. I could have pushed myself and worked through the pain and fatigue and halved the number of days it took us to do it. Then I would have spent a week or more in bed, the knight would have had to do everything else, including coming home at lunch time to make sure I got lunch. For me, this system works.

 

I use it when gardening, cleaning, bulk cooking, sorting paperwork, etc. Basically any chore where I there’s a chance I’ll start and try to just get it all done in one go, I try to remember to set a timer. Sometimes, that timer is super annoying and I want to ignore it and just finish the job I was doing. But at the very least it forces me to be aware. If it goes off and I don’t have much left, I might finish off the job. Or I’ll stand for a moment and really tune into my body. Sometimes, stopping even just for that 10 seconds is enough to realise that the warning signs are there and I was just not feeling them. I have to remember that the pot that needs scrubbing is not that big a deal. Maybe soaking it will mean that in 30 mins it will take half the energy to clean. But pushing might mean that I don’t have the energy to shower myself later. So, I’ve had to learn to stop.

I’ve found a system that mostly works for me, but I’d love to hear what your tips are. Please let me know!

 

Pacing – social life

You know you have a chronic illness when: You look back at your past month and realise that the only people you saw outside your family were your team of health professionals.

Now don’t get me wrong, I like my Doctor, Naturopath, Chiropractor and Physiotherapist. But a month where they are the only people I see apart from the Knight and maybe my parents is sad. It unfortunately happens far to often. But trying to have a social life when you have a chronic illness is hard.

Having a good chin wag and a laugh is so good for mental health. It is one of best therapies for depression and reducing stress. But going to a social function will have its toll. The FibroTroll will expect payment and I have had to learn how to reduce the damage.

Over time, I’ve worked out a few things. I can’t do an evening function unless I am in control of what I eat and drink, I don’t stay too long, I can sit down and I am able to do nothing for the next two or three days. This means I don’t do washing, I don’t have someone come for coffee, I don’t read anything that needs a lot of brain power. I need to be able to have a bath in Epsom salts, have a session in my HBO2 chamber, have easy to prepare or ready-made nutritious food that at the moment is GAPS approved. My priority has to be me. If it’s not, then I can be sure that the FibroTroll will invite the family over and I’ll end up with enforced rest for days or weeks because I can’t get out of bed.

When I have an invitation to anything, whether it’s a night function, or a birthday catch-up in the park, I have to pace myself. I decide if it is a priority. (I’ve got pretty awesome friends, so the vast majority of the time, then the invite is a priority.) This then means that nothing is scheduled for the day before or after. Depending on the time of day, I then schedule my bath and HBO2 time. I work out if I need to bring a meal, and what the other meals will be around the function. I work out what I will wear – checking if the venue will be air-conditioned or outside in the sun. I allow for travel time (even being a passenger is not rest – especially when your vestibular system is playing up). I decide which bag/s to bring based on how many layers of clothing I need and/or my own food. Finally, I battle with my ego about bringing my cane. Nowadays, I need it most of the time, especially when there’s a chance of stairs or uneven ground.

There is a common misconception that pacing yourself for a social function is just a matter of sitting down while you are there and having a nap when you get home. While those things certainly help, there is far more to it.

To help you out, I’ve made up an imaginary invitation to brunch at 10:30 am on a Sunday.

The week leading up to Sunday:

  • Call cafe/restaurant and see if they can cater for me
  • Cook extra meals during the week so there’s some food in the freezer
  • Order fruit and vegetable delivery or write shopping list for the Knight to do during the week or on Saturday
  • Sort out which loads of washing are the most important, and which can wait another week
  • Ensure any appointments are no later than Thursday (with the exception of my chiropractor, I find most appointments energy draining for a day or two afterwards)
  • Have at least 3 Epsom salt baths, and  5 HBO2 sessions
  • Ensure adequate sleep
  • Don’t introduce any new foods or re-try suspect foods
  • Choose outfit – check BOM (Bureau Of Meteorology) for weather predictions
  • Shave legs and underarms if outfit needs it

Saturday:

  • Let chickens out and feed them, watch their silly antics for a little while
  • Vegetable juice
  • Yoga/Tai Chi
  • Make and eat breakfast (Knight will probably make breakfast)
  • HBO2 session
  • Knight makes lunch
  • Keep energy usage low – both physical and mental
  • Make sure not to sit too long without stretching and change activities (TV, read, crochet etc.)
  • Have a soak in Epsom salt bath and wash hair
  • Knight makes dinner or use one of pre-made meals from freezer
  • Early night

Sunday:

  • Hope like hell that the FibroTroll is playing nice – despite all the prep, sometimes the Troll is just an arsehole.
  • Wake up the Knight in tarnished armour to let the chickens out and give them breakfast
  • Vegetable juice
  • Yoga/Tai Chi
  • Eat something light if the cafe can cater – because waiting until 10:30 or 11 am for food is not going to make the FibroTroll happy, a full meal if not. The fantastic Knight will make this while I’m doing my Yoga.
  • Wash and study face – good day and casual affair – no make-up because it uses energy.  Less good day – on goes the make-up so that people say “you’re looking well” instead of “are you sure you’re up for this?” Crap day – no point, because I’m not going to make it down the stairs let alone to brunch 🙁
  • Get dressed – now lets say its summer, so it’s hot outside and the sun is going to be coming through the window on the way there – too hot for jeans, but the cafe will be air-conditioned and due to my poor thermoregulation, within a few short minutes, I will start to freeze and then my pain levels will sky-rocket. So a long light dress and I pack 3/4 length leggings and a cardigan in my bag ( on the plus side – don’t have to shave my legs!). Enclosed flat shoes so my toes don’t get cold
  • Put band-aids on ankles and anywhere else the shoes might rub even if I’ve worn them in, in case the Troll decides to be the aforementioned arsehole and give me blisters anyway.
  • Pack something to eat if the cafe couldn’t cater (and make sure I have snacks anyway because sometimes they are wrong).
  • The Knight drives to venue.
  • Enjoy myself at function, hope that the noise isn’t too loud, that the temperature is ok and that they don’t feed me something that triggers my IBS.
  • Keep an eye on the time – super hard when I’m having fun.
  • Dance around the “How are you?” question.
  • TRY to leave before I hit the wall. – This is possibly THE hardest thing to learn to do as it’s really hard to predict. Loud noise and being too cold will significantly reduce the amount of time I can be anywhere.
  • Knight drives home.
  • Depending on what I could eat, I may need lunch.
  • Knight prepares the HBO2 chamber and I hop in for at least 90 mins. I do something that doesn’t require too much thinking and no noise (probably a game on my phone or crochet.)
  • Have a bath with Epsom salts.
  • Knight makes dinner or we have a pre-made meal from the freezer.
  • Maybe watch TV.
  • Early night.

Monday (and possibly Tuesday): 

  • Knight gets up to feed chickens, make juice, make breakfast and take something out of the freezer for lunch and dinner and prepare the HBO2 chamber.
  • Sit
  • Lie down
  • HBO2 session.
  • Hopefully make my own lunch and I won’t have to make the knight come home to prepare lunch.
  • Sit
  • Make sure not to sit too long without stretching and change activities often (TV, read, crochet etc.)
  • If not too bad have a bath – otherwise wait for knight to come home.
  • Put pre-made meal in the oven.
  • Lie down
  • Sit
  • Maybe feel up for watching TV with the knight.
  • Try very hard not to feel guilty (this is a work in progress.)

If I don’t do this, I’ll probably manage for a day or two. I’ll do some housework, I’ll hang out with the chickens, study, research etc. BUT I have learnt from experience that if I don’t take the day or two I need to recover then I’ll almost always have a flare.

And that will mean lying in bed most of the day, needing help to and from the bathroom, taking the maximum amount of medication that I can and taking several days to a week or more to recover.

If I am disciplined and do follow the plan, then by Wednesday I should be back to normal energy and pain levels. Having one or two days where I only take care of me, ultimately works out better than having a week where I can’t even do that.

For people who work or have children or have dogs that need walking or any other commitments recovery is even harder.

Planning rest time and meal planning is your friend. Try to have nutritious meals in the freezer and try to take it as easy as possible. Can a load of washing wait an extra day or two? Can a friend walk the dog? Can you take 20 mins to soak your feet in Epsom salts? Recovery from any extra stress – including fun stress – takes longer if you don’t take it easy.

Pacing – it should be a four letter word.

Hands up FibroWarriors! How many times have you been told that you just need to learn to pace yourself? How many times have you told yourself that? And how many times have you failed miserably only to trigger a flare?

If you are like me, the answer to all of those questions is LOTS of times! While I am getting much better at it, pacing is an art form I have yet to perfect.

Before my diagnosis, I was quite firmly in the “just push through and get it done” mentality. Which is fine when you are otherwise healthy and getting the washing/dishes/vacuuming/painting (insert chosen activity) is your priority. But it just doesn’t work for someone with Fibromyalgia. I hated doing the dishes and not washing everything. Vacuuming and mopping seemed pointless unless I did the whole house. Going out for lunch didn’t mean that the housework shouldn’t get done.

Now, I’ve had to learn a very different approach to everything I do.

Gone are the days when I do a load or two of washing on a Saturday morning, do some grocery shopping and then head off to dinner with a friend, knowing that I’ve got a Sunday lunch catch-up the next day. For a “normie” (person without a chronic illness) that doesn’t sound like a particularly busy weekend. When you have to deal with the FibroTroll – that is a massive weekend. Realistically, I would have to choose between the two engagements. And I certainly wouldn’t be doing any washing or grocery shopping.

Learning to pace oneself is not just about reducing a project down into manageable chunks, it’s about reducing your whole life into manageable chunks.

You have to work out your priorities for everything. Every. Single. Thing.

Because the FibroTroll affects EVERY aspect of life, this post has ended up a whole lot longer than I expected. So I’m going to break it up into several posts.

The things that I have had to give up or change the way I do fall into four basic categories:

Work: One of hardest things I had to do was give up my job as a vet. I realised that I wasn’t doing the right thing by myself, by colleagues or my patients. My health had to come first. It was hard, and this isn’t an option for a lot of people. I will write more on this topic soon. To be honest, I am still not okay with it and I’m planning on focusing on this with my psychologist at my next appointment.

Social life: I’ve written about this a few times because it’s one of the hardest things in life to completely give up. Even introverts (with exceptions) need some human contact that is enjoyable. It’s often one of the first things that FibroWarriors start saying no too, but one of the most important to maintain to some extent. Humans are, by and large, social creatures. Without human interaction the risks of depression increase and the sense of isolation that this disease already imposes becomes worse. But the FibroTroll will expect his toll to be paid, so I have had to learn how to pace things when it comes to my social life.

Housework: Most people’s least favourite thing to do. But as I like having a clean house, clean clothes and clean dishes to eat from, housework has to be done. The Knight is amazing, but he cannot physically or mentally handle doing everything that need to be done to run a household AND also work to get money so that we have a house that needs cleaning, clothes that need washing and food to make the dishes dirty.

Adult responsibilities: Sometimes this vies with housework for least favourite things to do. It includes paying bills, doing tax, organising household maintenance and other such fun things that we never had to think about as children. But again, as I like to have electricity and running water, these things have to be done.

I know I’ve barely touched the topic of pacing, but if you stay tuned to the following posts, I will go into a lot more detail of the things I’ve found that work for me.

I got a bit carried away and forgot to set a timer for myself when writing this, so I’m going to be a bit of a zombie later. So no more thinking or writing today. I’ll let the suspense build with dramatic music until my next post (but not too loud or with too much base!)

 

Walking on the handrail

Every now and then it feels like maybe I’m trying to cross the troll bridge by walking on the handrail. It’s harder, more exhilarating and there’s a fantastic view. But one step wrong and everything is going to come crashing down and then there’s going to be a troll stomping.
What I mean by this, is that I still need to cross that bridge everyday – I need to do all the things that sustain life and basic hygiene. I need to cook, eat, drink and wash myself. Ideally, I’ll do some cleaning as I don’t like to live in a pigsty. But sometimes, I just want to do fun things.
I want to bake six types of Christmas cookies. I want to sort my craft room and sort all my yarn and fabric into types and colours. I want to have a dinner party and feed people.
Especially that last one. I love to feed people; it gives me joy. Unfortunately, it uses up quite a lot of energy and usually means I don’t have enough left for the next day or two.
But here’s the thing; if I don’t do things I enjoy – if I don’t bring gluten-free Christmas cookies in to my old workmates, if I stop feeding my brother-in-law when he’s over helping the knight build chicken coops or other projects, if I don’t crochet the cutest little mermaid tail for my friend’s baby, if I never have another dinner party or any number of other things, then my happiness well will dry up.
So I do it anyway. I get up on that handrail and cross the bridge in the more fun way. I’m learning to pace myself, so that when I inevitably slip off the handrail, hopefully I’m still on the bridge the next day (rather than wallowing in the gully with a troll’s foot on my back).
It’s a work in progress, but I’m getting much better at it. I had some of the knight’s family over for dinner the other week as my brother-in-law is off overseas for six months. I kept it simple (for me), and allowed my knight’s aunt to bring a salad. I made mango & coconut pudding a few days before (find the recipe here) and put them in the freezer. I made quiche crusts the day before and blind baked them, and made an olive focaccia and baked it to just cooked so it could brown a little more when I warmed it up. Which meant that all I had to do on the day was throw a GAPS friendly salad together, make the quiche filling and bake them (and this was super easy because of my Tefal Cuisine Companion), warm up the focaccia, and take the puddings out of the freezer.
I then had a very enjoyable dinner with my knight’s family. They are wonderful people and I enjoy spending time with them. I had a tiny glass of wine and enjoyed myself.
Yes, that used up way more energy than normal. It meant that the next day was spent doing very, very little. I had a bath, got in my HBO2 chamber and basically used as little energy as I could.
But it was worth it. And I’ve learned that making a fuss about the people I love is part of who I am, and if I stopped, then I would stop being me. I just have to learn to do it in a way that works.

Surviving festivities

I love Christmas time. I mean when else can you paint your toenails alternating green and red and people smile about your Christmas spirit instead of trying to back away from the crazy lady??!

But surviving Christmas when you have a chronic illness is another challenge entirely. My knight in tarnished armour and I are lucky enough that most of both our families live in the same city as us. We also are lucky that my family comes from Viking stock. Which means that we have always celebrated Christmas on Christmas Eve (don’t ask me how that works with Santa, because I don’t know!) This means we have never had an argument about where to spend Christmas. We celebrate with my family Christmas Eve, and with the knight’s family Christmas Day.

But in that also lies a problem. If I do an evening function, even if it is a short one, it uses more energy than a longer one would during the day. So if I have an evening function, I absolutely have to allow for doing nothing the following day to avoid a flare. So that makes it very hard to do two functions, even over two days. This Christmas just past, I managed to make it work. I had my whole wonderful family at my house for Christmas Eve lunch. Then my knight’s wonderful family for Christmas Day lunch.

I didn’t have to go anywhere, no travel, no stressing about packing food, supplements, medications. I knew my own bed was just on the other side of a door. I had a lie down just before everyone turned up and again while everyone cleaned up. My in-laws stayed and we played games all afternoon – which is one of mine and my knight’s favourite things to do. And both nights I was in bed at my regular time.

So while I managed the FibroTroll very successfully for our Christmas celebrations. I didn’t go so well after that.

I decided to hit the post-Christmas sales. And while I got some great bargains, it used up more energy than I really had. Then it was my birthday, so I splurged a little and had a glass of wine and a creamy cheesy seafood marinara. I made it into a GAPS friendly version with zucchini spirals instead of pasta, but I may have gone a little overboard with the parmesan. Lastly, it was New Years Eve. The knight and I sat in the air-conditioning, eating peanut butter ice-cream (GAPS friendly again) and watching Dr Who(I know, awesome, right?!). But at 10:30pm the Troll decided there was no way I was seeing in the new year, so I went to bed.

All of that proved to be a bit too much and the FibroTroll invited his best mate the Migraine over. So I’ve been a bit flat for a few days, and only now am I on the upswing.

On the plus side, I found an app for my android phone called Migraine Buddy. It helps you to track your migraines and potential triggers.  I have only had it for 2 days, so I will have to let you know how it goes.

 

 

Social life and Fibromyalgia

The FibroTroll interferes with every aspect of your life. He robs you of sleep, takes away your health, independence, energy, job, balance, and your social life.

It’s hard to explain to someone who doesn’t have a chronic illness. It’s really difficult for most of your family and friends to really comprehend how hard it is to be sick 365 days a year. Good days mean I can go to a function, but some days walking from the bed to the toilet is about all I can handle.

Even on a good day, I always have to think about the FibroTroll.

  • What time of day is the event? Personally, I know that an evening event is going to be much more difficult for me to make, and if I do, it’s going to use up more energy than at other times of the day.
  • How long is it expected to go for? An all day event is generally not an option for me. But if I know I can go somewhere and lie down in a quiet dark room in the middle somewhere, then I might be able to manage.
  • How much prep do I have to do? Hair and make-up for a wedding is more involved than putting on some sunscreen and a hat for a BBQ.
  • How far to I have to travel? Some days the nausea is worse than others. Most days 10-20 mins in a car is ok, and it’s only longer trips that trigger the nausea. Sometimes, I’m nauseated from the moment I get into the car until 30-60 mins after I get out. Plus travelling uses up energy. Even when I’m just a passenger.
  • What sort of temperature is the venue likely to be? Many people with Fibromyalgia have issues with thermoregulation. In my case, I get cold very, very, easily. If it’s summer, then I have to consider if the venue is air-conditioned.  On the rare occasion that I go to see a movie, I wear jeans, enclosed shoes and bring a cardigan – even in the middle of summer. I always have to be careful not to get too cold, or I will trigger a flare.
  • How loud is it going to be? Is it in an enclosed space with loud music? Or outside where joyful squeals of children will be diffused? I take earplugs to the cinema with me to dampen the noise. Too much noise stimulation triggers a sensory overload and I will run out of energy much faster than when there is less or no noise. Also, when there’s loud background noise and I am trying to have a conversation, it takes more energy to project my own voice.
  • Will there be much walking or stairs? I have to allow extra time for even a short walk from a car park. And stairs – I absolutely have to bring my cane. This generally comes with me anyway, but stairs make it a must.
  • Will there be much standing up? If the entire function is going to be sitting down, and the car park is nice and close, then I might be able to wear some cute kitten heels. Otherwise, I have to wear flats. (Which is most of the time.) I haven’t worn heels in years.
  • Can they cater for my dietary requirements? The answer to this is usually no. I don’t expect most people to go to the level of effort required for my issues. If it’s at a restaurant, often if they have said yes they can, it turns out that the food is either bland and boring and I get to pay extra for something that I can make better myself, or they got something wrong and I end up with an IBS attack a few hours later. So most of the time, I bring my own. This again uses up more energy. I have to plan and pack my food. I have to keep it cold and/or work out how to heat it up and I have to make sure I bring enough so that I don’t go hungry. But it’s better than eating something that makes me worse.
  • Is it at a time of day when I have to take medications or supplements? If yes, can they wait until I get home,  can I take them early, or do I have to bring them?

And that’s all the things I have to think about if it’s a GOOD day. In some ways, there are less things to think about on a bad day.

  • Can I get down the stairs and back up again? No. Well I’m probably not going then.
  • Is it a wedding? Yes. Oh shit. Take the meds that will give you a short boost, but make you worse, have a cup of coffee and try really hard not to think about how much worse you’ll be tomorrow and for the next week.

It’s hardly any wonder that many people with fibromyalgia end up completely cut off from friends and family. Most of the time I’m pretty lucky with my family.

For example, for my Mother-in-law’s big decade birthday this year, we had a small but fancy dinner. We hired a private chef, who easily catered for my dietary requirements. He came and cooked and served a three course meal and cleaned up afterwards. I cannot recommend Pierre highly enough.

It was absolutely delightful. Everyone came to our house, and I hardly had to lift a finger to set up with all the willing hands to help. I could see what was going in my food – and apart from eating too much, there were no unwanted side effects! There was no travel, hardly any walking or standing, I could lie down when I needed and even though no-one rushed out at the end, I was still in bed by 10pm!

Other things add to the difficulty. Many of our friends are reproducing. They are creating their own gorgeous little armies of mini humans. Our house is not child proof and this makes it really hard. I struggle to get out to see them, and they struggle to get out of the house with young kids and then have to monitor them if they come here. So there are many of my friends who I just haven’t seen for years. I worry that their kids will be in high school before I get a chance to catch up with them! And this is extra sad as I can’t make a mini-me of my own.

The FibroTroll really doesn’t want me to have fun or to nurture relationships. The only way I’ve worked out how to pre-pay the toll even a little is to have people come to my house. This means no travel, no packing food, no walking or stairs unless I go down the stairs at my own house and I can rest right up until people turn up. But that doesn’t work for everyone.

I wish there was an easy answer to this dilemma. But there isn’t, so I have to keep paying the FibroTroll.