Tag: pacing

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!

When something has to go…

I’ve been very quiet this last month and a bit and I have a very good reason for this. I’ve been super busy doing written assignments and fixing up the garden (pacing myself in 15 minute blocks) so I could do video assessments outside, learning how to edit videos and also going back to Tai Chi. So something had to go, so I haven’t been writing much here. But I’m back now!

If you’ve been following me for a while, you know that in my pre-FibroTroll days I was a Veterinarian. I’m still registered, so I’m technically still a Vet, but I haven’t worked since September 2012. I struggled a lot with the loss of my career. It was a very big part of my identity and I loved it. Sure, it has its bad bits, but on the whole, I actually liked going to work and doing my job.

I still haven’t fully accepted that I may not ever be a vet again, but I am slowly getting better at saying the words “I used to be a vet” and being somewhat okay with this. I have a whole post on this, that I’ve been working on for a while on and off, and I will post it one day.

But the reason for all that assessment work, is because I have been working on a Certificate IV in Celebrancy. I was really running out of time to finish before my enrolment expired. I already had to get an extension because of the damn FibroTroll, and I can’t get another one, so it just had to happen. Today, I submitted my last assignment – with a day and a half to spare! So fingers crossed I don’t have any re-submissions to do!

I decided to do this about 15 months ago -around the time of that ridiculous marriage equality debate and postal survey that should never have happened. The politicians should just have done their damn job and passed the Bill without wasting so much time and money and inflicting hate speech on vulnerable people. Imagine how much that $166M would have helped our hospitals and schools! I am not ashamed of being a supporter of Marriage Equality and I really wanted to do more to show my support.

I also needed to find a vocation that I am passionate about, that I will enjoy, and one that I can work around the FibroTroll. After doing the course, I am confident that this is something I am going to enjoy, and not wanting to blow my own horn too much, I think I will be good at it too.

Having a career path again, one where I can offer a valuable service to society (and maybe bring in a little extra cash into the household) is such a wonderful feeling. Hopefully, in a month or two I will have had my registration approved and be a fully fledged Marriage Celebrant!

The other thing that doing this course has reminded me of, is that I really do have some amazing friends and family. People have come to my house to do mock interviews, to perform a complete wedding ceremony from start to finish and a rehearsal beforehand (and coming to re-film a bit I wasn’t happy with!) and to perform a full naming ceremony complete with their gorgeous little bub! Some of them even came to more than one assessment! To all of them, I am profoundly grateful.

My Knight in Tarnished Armour was there every step of the way, helping prepare, arguing with my printer and scanner for me, helping feed people, being videographer, and cleaning up and taking care of me afterwards when we knew I would be paying the FibroTroll’s toll. I honestly do not know what I would do without him.

My mother has also been wonderful, she has come and helped cook for people, printed things when the Knight didn’t win the argument with the printer, hemmed tablecloths and helped out in so many ways. Then she happily played mother-of-the-bride to a person she had never meet, then grandmother to a baby she had never met!

Thank-you simply isn’t a strong enough phrase to cover the gratitude I have to all of these people.

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!