Category: Mental Health

Self-Care Challenge

I mentioned in my last post (which I just noticed was over 3 weeks ago – gulp!) that I was about to start a “no-time self-care challenge”.

I am pleased to say that I have started it. I’ve mentioned Healthy Moving a few times and I’m pretty sure today won’t be the last time either. I should say – I don’t have an affiliation with Jen or Healthy Moving, I just really love her approach.

So the week didn’t start so well for me. On Monday morning, I watched the first video which starts with a mindset practice for the week. I found that this particular one both resonated and confronted me at the same time. This probably means that it is particularly relevant to me!

Then on Monday night I had an episode of extremely intense pelvic pain. The Knight in Tarnished Armour was threatening to carry me downstairs and take me to hospital, but thankfully the pain relief kicked in and I managed to avoid another sleepless night at the ER. Now I should point out, that our nearest Emergency Hospital is about 3km from our house, so in most cases, it would not only be quicker just to drive to the hospital, it would be a waste of the very valuable time of an ambulance service to come to us.

After a visit to my GP on Wednesday and an ultrasound on Thursday I now know my pain episode was likely an endometrioma on my ovary rupturing. Yay! Another co-morbid condition to add to my list. I really wish the FibroTroll would stop inviting friends over to my body. There really isn’t room for more! I’m on the upswing now, but I was pretty flat for a few days after this.

Which leads me back to the self-care challenge. Given that most of my week has involved me being horizontal, except for appointments, I didn’t think I would get much of the challenge done. But, I am super proud of myself. I watched the first exercise video and initially thought “Ha! I can barely stand up today and you want me to put one foot on a chair?! No chance!” But then I thought about the mindset for the week. Then I had a scroll through the Health Moving Website, and found an exercise that focused on the same muscle group, but was lying down. So I did it instead. I found the next day’s exercise easy, but the day after that was a difficult one again. So I gave myself permission to just do the really simplified version of it.

I am proud to say that I have done a variation of all 5 of this week’s exercises/stretches. This has been incredibly good for my mental health. Depression is another of the FibroTroll’s friends, and it is very much a double-edged sword. It makes it super difficult to do, well, basically everything. But conversely if you do nothing, the depression gets worse. Exercise has been proven to help, but when you have depression in combination with physical pain it is even harder to actually do any.  I have my depression mostly under control, but it does rear its ugly head from time to time, particularly when I have extra pain.

These little 2-5 min exercise/stretch videos are just the right amount for me to get the ball rolling. Some of the actual exercises take hardly anytime at all and are easy to weave in to your day – provided you can remember to do them! But the result is that I move my body more than I would have, and it gives me a sense that I have achieved something.

I am about to go and tackle the 15 min class for the week. I have to be mindful of the week I have had, and be extra careful with pacing. To that end, I have given myself permission, in advance, to just do 5 mins if it is too much. Wish me luck!

 

My future self

I was completely without inspiration this week.

I’ve been struggling with an almost constant headache, which only resolved after 2 visits to the chiropractor. After that I was just exhausted.

Now I am always fatigued, but this is the level of fatigue where you struggle to even lift a glass of water to your mouth. So I haven’t been writing. I’ve been hiding in online game world and fantasy novel world. And while that helps distract from the pain and fatigue, it doesn’t actually help much in the long run.

I’ve been following Jen from Healthy Moving for a while. I found her once after I signed up for one of those internet bundles and she had a class in it. Now I only get those bundles because of her contributions!

I recently signed up to her “No-time self-care 6 week challenge” which starts soon. I figure I have plenty of time, but not much energy, so small short exercises I can weave into my day are probably exactly what I need. Signing up also gave me temporary access to a lot of other stuff. One of which is the current “ritual challenge”. One of the things I love about Jen is that she isn’t just about exercise, she is all about your mindset too. The first mindset in her ritual challenge is to think about my future self.

This is the thing that managed to pull me out of my funk today. I found myself flicking from online game, to social media, to different game and then wondering what book to pull off my bookshelf when I decided to think about my future self.

That future self is probably not going to thank me for spending 6 hours on the couch mindlessly playing games. While I did spend 20 mins outside meditating this morning, that is not going to undo the damage I am doing to myself.

So I went and found my laptop and got into my whale (HBO2 chamber) and started to write. I didn’t actually know what I was going to write, just that Julie (my psychologist) encourages me to do so. It doesn’t use a lot of physical energy and it usually has a positive effect on my mood and general well-being.

And you know what?! It has done it again. While I’m still exhausted and not looking forward to working out how exactly I’m getting back out of my whale in about 15 minutes, I’m much happier. And I also feel like I’ve actually achieved something today. My future self will thank me for it I’m sure.

Metabolic Balance – Phase two (Plus bonus recipe!)

A couple of weeks ago I started my latest dietary program called Metabolic Balance. I was a little apprehensive about it as I mentioned in my first post about it here.

I successfully navigated Phase One without dying. Although by the third morning I did think that was a possibility. If anyone doesn’t believe that food can affect mood, then I challenge you to just eat vegetables and ZERO fat or protein (yes I know that many vegetables contain protein, but I mean eggs, dairy, meat, legumes, nuts, seeds, etc.) See how you feel by day 3. Then have some protein.

For me, it was like night and day. Within 30 mins I was feeling brighter, my headache had receded to a manageable level and I no longer felt nauseated. By the end of that day, I was even feeling happy.

The next two weeks I settled into Phase Two – the strict conversion phase. Phase Two is where the Metabolic Balance Rules come in. There’s eight of them but they aren’t too difficult to follow most of the time.

I also had my personalised meal plan. My plan includes a lot of things I very much like, and a few that I don’t. There’s a fair amount of variety, which allows me to be creative.

One of the things I am grateful for – something I became more conscious of after starting my gratitude practice – is my ability to cook. My parents encouraged me when I was young to bake and cook. By the time I was 7, I could make a chocolate cake from my kids cookbook (Mum or Dad would put it in the oven and take it out) and by the time I was 11 or 12, I could do simple dinners. I made a god awful mess when I did it, but it’s a skill I am grateful to have. (I do make less mess now, not that the Knight thinks so!)

That skill has allowed me to be quite confident in coming up with creative ways to prepare the ingredients in my plan.

One of the meals I am particularly proud of (and have made more than once!) is a butternut pumpkin (squash if you’re American) and blackberry tart. Sounds a bit weird – but it’s super tasty! You could add a bit of maple syrup or honey if you wanted it sweeter, but I’m not allowed them, and I found it sweet enough as is. I’m sure you could substitute other berries, but I would go for sweet ones like blueberries or strawberries.

I hadn’t actually planned on this becoming  a recipe post, but sometimes you get unexpected bonuses in life!

Butternut Pumpkin and Blackberry Tart

Ingredients:

  • 40g nuts and/or seeds
  • 2 tsp coconut oil (I omitted this in the first 2 weeks, but it’s better with it)
  • cinnamon to taste
  • 80g butternut pumpkin
  • 100g frozen blackberries (can use fresh, but reduce cooking time)
  • 1/2 tsp spice mix (I recommend my turmeric drink mix)

Method:

  1. Pre-heat the oven to 180°C.
  2. Grind the nuts and seeds in a coffee/spice grinder. You could also use commercial nut meal if you don’t have a way to grind nuts.
  3. Add 1 tsp of the  coconut oil and cinnamon and enough water to make a soft sticky dough.
  4. Line a small flan or pie dish with baking paper and press the dough into the bottom and up the sides. This is not a dough that will roll out – you’ll have to get your hands dirty.
  5. Bake in the oven for 8 mins. I didn’t bother with weights as the ‘pastry’ won’t rise.
  6. While the base is in the oven, boil the pumpkin until it can be easily mashed with a fork (if you cut it very small, this will take less time). Drain the water, but reserve some in case your pumpkin mash is too thick.
  7. Mash the pumpkin with the spice mix and the rest of the coconut oil, add some of the reserved liquid if required to make the mash quite runny. You don’t want soup, but it needs to be sloppy.
  8. Place blackberries in the tart base, spoon pumpkin mash over the top and give it a gentle squashing. Sprinkle with a little more cinnamon.
  9. Bake for another 10 mins.

Tip: You can pre-boil the pumpkin use it cold, just add a few minutes to the cooking time.

Serve on its own, or with a blob of cream or yogurt.

Enjoy!

Practicing gratitude

Folk rocker Stephen Stills sang, “If you can’t be with the one you love, love the one you’re with.” Now hold onto that ear-worm while I ramble a bit before I get to my point.

As I’m lucky enough to have found and married my soul mate (AKA the Knight in Tarnished Armour), I get to be with the one I love. But the song has a different meaning for me now.

So many of us FibroWarriors mourn the loss of our old lives. I know I still do at times. I miss being a vet – a job I loved and spent most of my life working towards. I miss having pain free days. I miss that when I got a cold or flu or injury that there was going to be an end to the discomfort.  I miss my independence. Most of all I miss my energy. I still hate having to ration my “spoons”. (If you aren’t familiar with “The Spoon Theory” by Christine Miserandio, then go here to have a read.)

But my psychologist has given me a challenge – to practice gratitude. To this end she recommended that I write a gratitude journal. But she gave me some extra guidelines. I have to write three things every day that are specific to that day and not worded in the negative.

So I can’t just say I’m grateful for a roof over my head, electricity and running water – unless there’s something specific to that day, like a hail storm. And I can’t say that I’m grateful I’m not as bad as such and such.

Some days it’s easy. If I’m having a good day, then it’s much easier to see the bright side of things. But when I woke up yesterday in a mild flare, it was much more of a challenge. I sat down and did it anyway. I think I stared at that blank page for a good 10 minutes before the first thing came. It took less time for the second and by the third I found that there was actually a lot of little things that I was grateful for, despite the FibroTroll beating me with his club.

And what came out of it?

Well….

My pain stayed exactly the same. But I smiled. Just a little smile, but it was real and it made it that bit easier to cope. And I felt more motivated, I got in the bath and had a good soak in Epsom salts. I didn’t cancel my hairdresser (the lovely Anita from Ex-hair-lent comes to my house so I don’t have to go anywhere). After that, I went downstairs to cuddle my broody chicken Magrat. I’m not sure that she was grateful for that, but she probably forgave me when I dug some bugs out of the compost bin for her.

So what does all this have to do with that song?

It comes down to this. I can’t be in my old life, but I can do my best to love the life I have right now. I don’t have to love all of it. I can’t and won’t love all of it. But I can and will love some of it.

Why I don’t hate my body – even though I’m chronically ill.

Being chronically ill is hard. It’s hard to be in pain all day, every day – never having a single pain-free day or even an hour. It’s hard to have symptoms like fatigue, nausea, tender lymph nodes, IBS and thermoregulation issues without knowing if there is ever going to be an end to them. It’s hard not knowing how bad it will be when you wake up, or if anything is going to happen to make your symptoms worse.

It’s frustrating and annoying to not be able to be sure if you can make it to a function or appointment or even the shower on any given day. It’s embarrassing to lose your balance in public, forget your words, or completely forget what someone just told you 30 seconds ago.

It’s heartbreaking to do all the right things, eat right, take your supplements and/or medications, meditate, do yoga, do all the things that are supposed to help and then find that your symptoms are flaring up anyway. Or you do just one thing that a “normal person” could do and suddenly the FibroTroll is having a party and has invited all his friends.

When this happens, it’s easy to hate your body. You feel like it’s somehow letting you down. You compare yourself to all the other people in their late 30’s having kids and working and still managing a household and social life and you feel betrayed by your own body.

But I don’t hate my body. At least not anymore.

My body is amazing. Sure, it’s gotten a bit squishy since I haven’t been able to exercise as much, and I’ve lost a lost of muscle strength, and I could stand to lose a couple of kilos, but it’s still pretty amazing. If I cut myself, within seconds my body has started the process it needs to heal that cut. If I bruise myself, it will breakdown all of those escaped red blood cells and process them so that the bruise heals and fades with time. If I were to break a bone – the doctors and surgeons would set it and/or do surgery on it which would put the bone in the position where MY BODY would repair that bone back to (in most cases) full function.

So I choose to trust that my body is doing the best it can right now. No-one knows for certain what causes Fibromyalgia. There are lots of theories – autoimmune disorders, neurological disorders, peripheral  nerve disorders to name a few. There may even be an as yet undiscovered virus, bacteria, parasite, fungus, prion or other type of organism that is causing it. Whatever the cause, my body is trying.  It has a dysfunction of some form and it’s doing the best it can to function with the crap hand it got dealt.

I do what I can to help it along. I feed it good food (right now that means strictly following my Metabolic Balance plan), I meditate, I do yoga, I have regular Epsom salt baths, I get in my HBO2 chamber most days and I have recently started both a gratitude journal and positive affirmations. (I’ll write more about them later.) And when my body flares up in pain or any other symptoms, I try to give myself the compassion I would give to someone else.

I won’t lie. It’s a work in progress. It’s frustrating and difficult when I suddenly need to lie down on the floor because otherwise I’ll either vomit or fall down (or both), or suddenly being ridiculously cold to the point where I am shivering under an electric blanket, or my personal favourite – be achingly cold in the legs and nauseatingly hot in the upper body AT THE SAME TIME! At those times its very hard to stop the negative self-talk.

I am working on acceptance with my psychologist. I’m still struggling with separating acceptance and surrender. I refuse to give up trying to get well, but over time I am reaching the point where I can acknowledge that my body is fighting an invader that I can’t identify and that it needs my help – not my hate – to get through whatever symptom my body is throwing out. So instead of allowing that internal voice that says I hate my body when it’s flaring, I’m thanking it for trying and assessing what I need to do to help it right now.

And on this cold, rainy day, it’s telling me I need to go have a bath. So that’s what I’ll do!

 

 

 

I’m still around!

I haven’t posted anything for a while. It’s taken some time to work out why. Then once I did, it took a bit longer to start the steps needed to resolve the issue.

I was a member of a Facebook support group. I still am a member of other support groups, but I say was a member as I finally followed through on my decision to leave this one particular group. I won’t name it, because it’s a great group and some truly wonderful people are members of it.

Some months ago, I had an interaction which triggered an anxiety attack. All because I linked this blog in response to someone’s question. Now the situation was resolved and the response that triggered my anxiety was removed and I did get an apology. But anxiety is an arsehole and its good friend depression likes to follow it around like the Big Black Dog metaphor it is known as. I tried snoozing the group for 30 days.

At the end of that 30 days, I’m pretty sure no-one had noticed I had been gone. Within a couple of days a post appeared where someone linked a blog and nothing was said. I felt hurt, as though I had been singled out and made an example of. I’m pretty sure that wasn’t the case, but that’s how it felt. So I snoozed the group again.

The next time the 30 days were up, the first several posts were people venting. I’m ok with people venting and a support group is EXACTLY the place to be doing it. But some of the stories made me cry. I really feel for people who have no support at home or who have a dangerous home-life in one way or another. While it made me even more grateful for my Knight – I realised I wasn’t strong enough emotionally to handle their pain right then.

I can’t specifically remember what happened to make me snooze the group for the third and fourth times. But when that last 30 days was up a few days ago, I didn’t snooze it again. I read some posts, participated in a couple of fun things, but just didn’t feel like I was in a safe place to actually help anyone or express myself. So this morning, I left. If anyone reading is a member of that group, please understand that this is within myself and I don’t blame anyone there.

Around the same time as that initial interaction, I had to have a growth surgically removed. It turned out to be benign and I recovered relatively well from the surgery, but extra stress never helps anyone, and especially not when you have a FibroTroll hanging around.

AND then, I had a stall at a market (my mother helps me run a little hand-crafting business) and didn’t sell a damn thing. It was incredibly disheartening to spend a large amount of time and energy to hold a market stall and end up with negative money.

So the Black Dog made himself comfortable. And I stopped doing the things that help. I stopped mediating, I hardly did any yoga, I stopped writing. I can’t even tell you what I did for most of May or June, I can’t remember achieving a single thing.

But my psychologist Julie (http://psychologyconsultants.com.au/) helped me get back on track. And slowly but surely, I’m getting back on top of things.

But the big catalyst for starting to write here again was a letter from my cousin. This particular cousin lives in Denmark and he is one of the handful of cousins that I’ve met more than once! I first met him when I was 15, and again in my mid-20’s in Australia, then once in Denmark when the Knight and I were on our honeymoon, and then again 2 years ago in Oz again. It’s funny to find that even though you’ve grown up almost literally on opposite sides of the globe (New Zealand is the antipodal point of Denmark – so pretty damn close!), that you can just simply get along with, and have the same humour and interests as a cousin you’ve hardly met. I know he’s reading this, because he said so in his letter. So Hi! And thank-you for your kind words. they mean more than you could possibly have imagined.

I realised that if my cousin on the opposite side of the world was reading my blog and found it interesting and inspiring, then probably someone else out there might also find it of benefit. So I sat down and started to write. And I was reminded of something that Jen from Healthy Moving said once:

“Failure is not falling down, but staying down.” 

So I haven’t failed at writing my blog. I simply had an unscheduled break, and I’m back at it now.

 

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.

I had an epiphany!

I was at my Psychology appointment today and I had a sudden moment of complete clarity.

My physical symptoms do not define my self-worth.

I wrote that in nice big red letters because I don’t want anyone to miss it. Logically, I already knew this. If you had asked me six months ago, (and I have a feeling that maybe my Psychologist did) if I believed that a person’s physical health or ability defined their self-worth, I would have said; “Of course not.”

But logically knowing something is true, and applying that belief to oneself is not the same thing.

Today as I chatted about surviving Christmas, my writing – in particular about my post on anxiety and depression and my various new undertakings, it suddenly dawned on me.

I am not defined by my physical symptoms. Yes, I have pain and fatigue, but they are a part of my life, not who I am. I am so much more.

Yes, having to share my life with the FibroTroll sucks. It’s an uninvited houseguest that steals my energy and never picks up wet towels from the bathroom floor. It insists on being involved in every single thing I do. Going to brunch? Think about the Troll. Shower vs bath? Will the Troll let me stand up or will I need to soak? Hang a load of washing? What is the Troll doing to my shoulders today? What to have for lunch – yep, you guessed it, think about the FibroTroll.

But that’s just it. It’s the FibroTroll that is the problem. Not me. I didn’t invite it, and so far my track record of surviving what the Troll throws at me is 100% success. I’m still here and I’m going to keep fighting. I am lucky enough to have my knight in tarnished armour (shiny armour is totally over-rated) fighting right next to me. The FibroTroll might win the battles, but it will never, ever win the war.

So my fellow FibroWarriors, I want you to take this message. Write it down on a post-it note and stick it somewhere that you will see every day.

I AM NOT MY ILLNESS AND MY PHYSICAL SYMPTOMS DO NOT DEFINE MY SELF WORTH.

We are all so much more than an illness. We have value simply because we exist.

Keep fighting fellow warriors. The FibroTroll is an arsehole. That doesn’t mean you are less of a person.