Tag: Fibromyalgia

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 (addendum).

So I thought I was done with my series on endometriosis. But I was wrong! I decided to add this post tacked onto the end. If you want to read the whole series, I’ve linked them at the bottom of this post.

This entry is not specifically about my surgery, but it hopefully contains some helpful information regarding the ongoing management of endometriosis. Unfortunately, having the lesions removed, does not always lead to a permanent cure. So ongoing management is important to reduce symptoms, and hopefully avoid the need for more surgery in the future.

There currently is not nearly enough awareness and support available for people who suffer from these sorts of conditions. And many of us are simply unaware of the support that does exist.

One of those support groups is Qendo. Qendo is an organisation that provides information and support for people suffering from endometriosis and other chronic pelvic conditions. They have a 24 hour support line and a host of information on their website. It started off as the Endometriosis Association (Qld) Inc. and now supports women all over Australia and the rest of the world.

They run regular information nights, fundraising events and general meet-ups. I recently discovered Qendo when I went to one of their information nights discussing gut health and endometriosis.

Now, if you have been reading my blog a while, you know that I am a big believer that gut health and nutrition are incredibly important when it comes to healing. This was the focus of this information evening.

I do want to do a little happy dance here – I did a thing! at night! in winter! This is not something that I’ve been able to choose to do for years. The FibroTroll leered a bit, but my faithful tarnished Knight was my chauffeur, and I took it easy the following day and the toll wasn’t too high – hence the happy dance!

Dr Lara Briden was the speaker on this particular night, and she was interesting, entertaining and informative. I learned that endometriosis may actually be an autoimmune disease, which may explain why the severity of endometriosis lesions does not always correlate with the severity of symptoms.

She has written a book called “The Period Repair Manual”. It is a well set out, well written book that gives enough technical information for the nerds like me, but written in an easy to follow way. It’s full of things I wish I had known 20 years ago. I strongly recommend you read it if you have any period issues at all. If you wish to purchase a copy, it can be found in Qendo’s shop or you can access the first 2 chapters by signing up to Dr Briden’s newsletter here.

This book has a host of information regarding diet and supplements to help manage a huge range of period-related conditions. Many of the recommendations are things I am already doing, but I definitely learned a lot reading it.

***

To add to the already amazing work that Qendo already do, they are now in the process (in conjunction with Queensland Health) of developing a mobile app to help support people with endometriosis and other conditions.

I attended a workshop today to give input into that app. It’s still in the early stages of development but so far, it sounds amazing! It’s going to make tracking and managing symptoms so much easier. I believe it’s even going to be comprehensive enough with only small need for customisation for me to use it to manage the FibroTroll!

If this is something that interests or affects you, please take a few minutes out of your day and complete this survey –

https://www.surveymonkey.com/r/QENDOAPP

Anyone in the world can do the survey, so if you suffer from endometriosis or other pelvic pain conditions, please fill it in.

I am very excited about this app, and look forward to being involved in it’s development and testing. I will certainly be writing about it again in the future!

The first four parts of this series on endometriosis can be found here: Part One, Part Two, Part Three and Part Four.

(Not so) fun times with endometriosis. (Part Four)

I am finally writing my fourth (and I think last) instalment of posts about my surgery for endometriosis earlier this year. It’s been a long time coming, but that is in part because I have been incredibly productive in other areas of my life – yay! But that is a whole other post.

Previously, on Living With the Fibro Troll….

In part one of this series I talked about what endometriosis is, and how the hospital system works in Australia and what to expect prior to surgery.

In part two I gave some advice for practical and helpful (I hope) things to do in preparation for surgery.

In part three I talked about the initial post operative period both in the hospital and at home.

EDIT: I added an addendum recently to include a book and a support group recommendation.

***

This part is about the more extended post-op period. The first few days are not much fun, but if you keep on top of your pain relief, manage not to get constipated and make sure to rest, in some ways they are easier than the next couple of weeks.

Our society seems to have gotten into this “just power on” mentality. The idea that you should push through the pain and that taking time to rest is somehow “wasting time”. Everyone, especially FibroWarriors or anyone with chronic health conditions, needs to ditch this idea. Particularly post surgery.

Your surgeon might give you instructions to “go back to light duties” within a few days after surgery. This is fine advice, but doesn’t take into consideration that chronic illness suffers often have prolonged recovery times from ANYTHING and also often have less conditioning so will take longer to recover.

Do not expect to be able to go back to your regular routine straight away. It can be weeks or months before you are back to normal and it can take several cycles for your period to normalise.

GIVE YOURSELF PERMISSION TO REST!

The little incisions on your abdomen might not look like much, but they are just the access points. Your abdomen has been inflated and stretched and poked around in. Endometriosis lesions were removed, and they can be from anywhere and could be extensive. All of those excision sites need to heal.

If, like me, you have endometriomas removed from your ovary/s, then your hormones may be affected. In fact, you will have increased cortisol to deal with whether or not your ovaries were involved. You have to process the anaesthetic drugs and the pain relief drugs.

And then you still have to deal with the FibroTroll. The FibroTroll doesn’t take holidays, not even if you have surgery. So rest. Then rest some more. Even if you are bored witless. Rest.

***

Move your body.

This kind of sounds like that opposite to what I just wrote, but I am NOT saying to go for a run or to start lifting weights.

However, some movement is essential for healing. Your lymph system does not have a pump like your vascular system does (your heart). You need to move so that your lymph can move also. This is super important for your immune function.

Set a timer and every hour – stretch. Stretch your arms, point and flex your feet and make circles with them, roll your shoulders, turn your head gently from side to side. Give yourself a gentle massage, and if you have someone willing, get them to massage your lower legs with firm strokes up your legs. While they are down there, there’s a reflexology point between the ankle and the heel that when pressure is applied can help some people with uterine pain.

As you heal, SLOWLY increase your activity. Keep your timer for every hour, and every second time, get up and walk a short distance. By short, I mean wander slowly around the house, maybe go out to the letter box if you have a low-set house and you live in a regular sized suburban property. Then GO BACK TO RESTING. If you have to do household tasks like cooking and cleaning, do it in stages and rest in between. This counts as movement, and will use energy. Allow for that.

***

Dealing with referred pain.

Your body is an amazing, complicated, confusing thing. It will heal those incisions that were made in your skin. There will be a small scar, but it will heal. It does, however, sometimes do some strange things.

Remember how I mentioned that the surgeon will fill your abdomen with gas so they can see what they are doing and get to the bits that need removing? Well, they do the best they can to remove that gas at the end, but they generally won’t be able to get all of it out.

There’s no need to panic about this,that gas won’t get into your vascular system and kill you. It is outside your organs and has to slowly work it’s way out. In the meantime it feels very strange to roll over and have this gas bubble it’s way around your abdominal organs to rest at the highest point it can get to.

The really strange thing about this gas is, that when it lodges up under your diaphragm, (a big, flat muscle that separates your chest from your abdomen and helps you breathe), you get a referred pain in your shoulder. This is thought to be because of irritation to the phrenic nerve which innervates your diaphragm.

There’s a few things you can do to help your body get rid of this gas and relieve the pain caused by it.

  • Drink plenty of fluids
  • Avoid constipation (see part 3 for my “pooping porridge”recipe)
  • Gentle massage of your abdomen – always in a clockwise direction
  • Drawing your legs up to your chest when lying flat on your back, if this does not cause you excessive pain.
  • Heat packs
  • Gentle walking
  • Lying on your side when resting – the gas will move to the highest point, hopefully reducing the irritation of your diaphragm
  • A drug called simethicone  (marketed as De-Gas in Australia) – check with your Doctor first.
  • Getting off the opioids as quickly as you can – opioids slow your intestinal system and you want that moving to help gas movement.

***

Getting back to normal

Time. Really, this is my biggest advice post surgery. Give yourself time.

It’s really hard to do. And if I need to have surgery again in the future, I will need to write this down in big letters and put it somewhere I will see constantly.

Healing will happen. Your body is an amazing, self healing machine. You didn’t grow those endometriosis lesions in a couple of weeks. Give yourself longer than that to recovery from surgery. If you break a bone in your leg, you don’t expect to run a marathon 6 weeks later. The bone might be healed, but you would give yourself time to recondition that leg and allow it to build up strength.

Do the same for yourself post endometriosis surgery. That broken leg would have been in a cast or pinned, or otherwise kept immobile. Your incisions from surgery will probably heal in 6 weeks, but you can’t rest your entire abdomen for that time. Your intestinal system keeps working, your ovaries develop follicles and ovulate, your uterus will most likely shed it’s lining at least once, if not twice in that six weeks. Your bladder will fill and empty many times. Nothing will be immobile in there.

Practice compassion towards your own body. Give it kindness and good nutrition. And most of all give it TIME.

***

I hope this series has been of some help. If you are about to undergo surgery for endometriosis (or anything else) good luck and I hope you heal quickly and the surgery achieves the desired outcome.

I linked them at the start, but to save you scrolling back to the top you can go back to part one, part two, and part three, by clicking on those links.

(Not so) fun times with Endometriosis. (Part Three – the first few days post op.)

Here is the next instalment of my series on Endometriosis. In Part One, I discussed my recent surgery, and in Part Two, I wrote about some things I did pre-surgery that helped things go as well as they could. This one is about the initial post operative experience.

As I briefly mentioned in Part One, I woke up from my anaesthetic in a fair bit of pain. The staff were lovely, and were quite determined to get me down to no pain. Now this is something most FibroWarriors are unfamiliar with.

I am fairly lucky as far as my Fibromyalgia pain goes. If I’m good with my diet, supplements and self care, I generally function at a constant 2 or 3 out of 10. I know there are a lot of FibroWarriors that are having to deal with constant pain levels much higher than that. But the idea of getting my pain to zero, is kind of laughable. I am not good at lying to people at the best of times, but coming out of an anaesthetic meant that it was virtually impossible. So when they are asking me what level my pain was, I responded honestly. The difference is, that while I would have been happy for them to just get my pain down to a 2 or 3, they wanted it at one or zero.

I’ll be honest, they did not succeed, but the anaesthetic wore off enough for me to convince them that my pain was low enough to stop giving me drugs.

Tips for while you are still at the hospital

I don’t really have a lot of tips for post operative stuff while still at the hospital. Of course there are the things that should be common sense and basic human decency. Follow the nurses’ instructions, be polite even if you are in pain. Use your manners, and remember that ALL of the hospital staff are people doing their jobs. There is never an excuse to be rude or abusive, especially towards the very people who are trying to help you.

They will expect you to eat and drink (and keep it down), dress yourself (at least to the level that you normally can) and go to the toilet before they will discharge you. This isn’t them being difficult, it helps them to assess if you are okay to be discharged. If you can’t do any of those things, it might indicate that you need to be monitored for longer than normal. It might just mean you need a few more hours, or it could be an indicator of something more serious. Don’t kick up a stink if they want to keep you, they are recommending the best thing for your health.

Don’t be afraid to ask the nurses for help. If you need an ice-pack or a heat-pack , or your pain levels have gone up, or you feel nauseated, talk to them. They would much prefer to get you a vomit bag and you end up not needing it, versus you trying to fight through it and vomiting on the bed/chair/floor. Just be polite and make requests rather than demands.

Being discharged

Check that you understand the discharge instructions, ask questions if you need to.

Check if you need to collect any medications from the pharmacy. I was lucky that it was pretty quiet when I was being discharged, and one of the lovely nurses took my prescription down to the hospital pharmacy to be filled, so that it would be ready for the Knight to collect once he arrived.

If it is not already recorded on your discharge information, ask the nurses to write down what medication/s you have had and at what time/s. This will help you take your next dose at the appropriate time.

If you have a long drive home, use the bathroom – a full bladder is not a fun thing to have so soon after surgery.

Travelling home

I strongly recommend a cushion or a piece of foam for the car seat. Also a small soft pillow that you can place between the seat-belt and your abdomen. Make sure it is small enough to not interfere with safety, but enough to provide a bit of cushioning.

If you are prone to travel sickness, make sure you have a bucket or a bag just in case. If you do vomit – call the hospital for guidance.

At home

Check what time you are able to take the next pain relief medication. Write it down and set an alarm. Does it need to be with food? If so, have something ready like a piece of fruit or some yogurt or one of those tasty high fibre treats you made when following my pre-op advice!

For the next 48 hours (at the very least!) take your pain relief when the next scheduled dose is due. Don’t muck about with post surgical pain. There is a valid reason why your body is giving you pain signals, it’s to make you be still so you can heal. But we, as intelligent humans are able to make the decision to be still without having pain, so take the medication!

Post surgical pain is much easier to keep down if you take the doses as prescribed, rather than waiting for it to completely wear off then trying to get it back under control. If you wait until the pain is high again, you will often need to take more medications and at a higher dose than you would have otherwise.

Avoiding constipation

You will likely be prescribed some sort of opioid medication. One very common side-effect of opioids is constipation.

Trust me, constipation post pelvic surgery is something you want to avoid.

Here are some tips for helping reduce the chance of developing constipation:

  • Eat high fibre foods. Lots of vegetables, whole grains (if you tolerate them) and fruit.
  • Stay hydrated. Drink lots of water or herbal tea, and keep caffeine to a minimum.
  • Add supplements that draw water into your stools – things like chia seeds and psyillum husks. See below for a recipe for a chia seed pudding that the knight has nicknamed “Pooping porridge”. It’s really quite tasty despite it’s name!
  • Use a foot stool or “squatty potty” to place your feet on when you sit on the toilet – raising your knees above your pelvis helps to put everything in the right position so you can pass stool with minimal straining.
  • Gentle massage of your abdomen and pelvic area – do this very gently and always in a clockwise motion to encourage things to move in the right direction. Not only will this help the movement of your bowels, it will help your body to get rid of the excess gas from the surgery that will have been left behind.
  • If these things don’t work, talk to your pharmacist or doctor about stool softeners and laxatives or consider using a microlax enema. They aren’t much fun, but the longer the stool sits in your lower bowel, the more water will be drawn out of it, and the harder it will be to pass – so don’t leave it too long!
Pooping Porridge
  • 1 apple
  • 1/2 cup water
  • 1/2 cup coconut cream
  • 2 tbsp chia seeds (Australian metric tbsp = 20ml)
  • 1 tsp psyillum husks
  • spices to taste – I like cinnamon and cloves or vanilla
  1. Chop apple into small pieces and stew for 15 mins in a small saucepan in the water (you could also use pre-made stewed apple).
  2. Add coconut cream and gently warm
  3. Remove from heat and stir in remaining ingredients. Allow it to sit for a while for the chia seeds and psyillum husks to absorb the water. Adjust to your preference – add more water if it is too thick, more chia seeds if too thin.
  4. Serve with some nuts or extra fruit, or just eat it as is – enjoy!

Try it with different fruits such as mango, pear or berries.

In my next post, I’ll talk about movement, exercise, referred pains and trying to get back to normal.

Go back to Part 1, or Part 2, or forward to Part 4 and my recently added addendum.

(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.

Perfectionism and Procrastination

I started a series of posts about my endometriosis surgery. I had great intentions of posting 3 parts, 3 weeks in a row.

I got very excited about it. I wrote the first one in about a day and a half, then I started the second one. And it has mostly sat there untouched since. See, I wanted it to be perfect. I wanted it to be this wonderful guide for FibroWarriors (or other people about to undergo surgery.) And I ended up putting far too much pressure on myself.

The end result of this, was avoidance. It’s something I find myself doing from time to time. It used to be a very common occurrence and it’s something I work on with my psychologist. I was doing all the “other things” that were much more important that my blog.

The funny thing is, while one of my motivators for starting this blog in the first place was to help other people. The reason I write is to help myself. Depression, anxiety and chronic health conditions don’t just go away. The symptoms can be managed, and sometimes you can lead what looks like a normal life on the outside. But you really have to work at it. You need to do the dietary things, and the meditation and the exercises and yes, the writing if that is one of the things that work for you.

So by procrastinating from writing because I wanted perfection, I was really just sabotaging myself. And I found the other things were slipping too. I hadn’t been back to Tai Chi since surgery. I was only meditating intermittently, I haven’t been doing my yoga and sugar has been slipping it’s way back into my diet.

So I’m back to writing. I will finish my series on Endometriosis, but in the meantime, I’m giving myself the much smaller challenge of just writing something every week. I’ve meditated today, and done some of my exercises from my physio. So already this week is looking up!

So while this post is all about me, I do hope that someone out there needs to hear that sometimes that’s okay. If you need to do a thing just because it’s good for YOU, then do it. (Within reason of course!)

Self care comes in many forms, and it is not selfish, it’s essential.

(Not so) fun times with Endometriosis. (Part One).

As I’ve mentioned before, the FibroTroll has a lot of friends (co-morbid conditions). One of the many that I also have the “joy” of knowing, is endometriosis. I wrote a little about it on my post about dysmenorrhoea, and I’m going to write about it again today. In a lot more detail because I’ve just had my second surgery specifically for this condition.

What is Endometriosis?

Endometriosis is a condition where the endometrial cells (the cells that line the uterus) grow somewhere outside of the uterus. Most commonly, this is in the pelvis, around the reproductive organs. However, it can grow almost anywhere. It can affect the bladder, bowel, muscles, lungs, brain and other organs.

The symptoms most commonly are associated with menstruation and the reproductive organs, including long, heavy, painful periods, infertility, pain during sex, fatigue and diarrhoea and/or constipation. It can cause pelvic pain and increase ovulation pain. Symptoms can be associated with where the endometriosis is located, but there is no correlation between the amount of endometriosis and the severity of symptoms. For a more detailed explanation, I have found https://www.endometriosisaustralia.org/ to be particularly helpful.

What can be done?

Diagnosis and treatment generally involve surgery. Some treatment options include the oral contraceptive pill or the Mirena IUD. They are not right for me, but do work for others. I had surgery 5 years ago as it had been suspected for quite some time that I had endometriosis. It was confirmed and then removed. Unfortunately, having surgery to remove endometriosis, does not guarantee that it won’t grow back.

Why did I have another surgery?

Since November last year, I have been having some fairly regular bouts of super intense pelvic pain. I had them investigated and didn’t get a satisfactory answer or treatment plan with conservative management, so I headed back to the Gynaecologist at the start of April and got myself booked in for another exploratory laparoscopy. I had also managed to grow another polyp in my uterus and an endometrial cyst on my ovary, so we decided that he would remove them at the same time.

The surgery is why I’ve been a little quiet on here. On the plus side, I have been recovering much better this time around and I think I have some insight as to why. However, this is turning into a much longer post than I intended, so I’ll save that for part 2!

I know from my various support groups, that there are many people who have both Fibromyalgia and Endometriosis and it’s likely that some people have not yet been diagnosed with one or the other. So I am going to share my experience.

Public vs private hospital system

In Australia we have a public health system. This is wonderful and literally saves lives. However, the waiting lists can be long for non-emergency surgery, so we choose to have private health insurance. I am one of the lucky ones, in that my Knight in Tarnished Armour earns enough that we were able to keep this when I stopped working.

One frustrating thing with private health insurance in Australia, is that the insurance companies only pay a certain amount for any given procedure. Medicare pays for 75% of it and the insurance company pays the remainder. If your specialist charges more than the scheduled fee, then you will have to pay the difference. The good news is, that many specialists choose to not charge above the scheduled fee and your insurance company should be able to give you a list of specialists who are “no gap providers”. Please note: I don’t know how insurance works in other countries – feel free to comment if you like!

This is actually how I found my current gynaecologist when I had my first surgery 5 years ago. He turned out to be a kind, caring doctor who listens and genuinely wants to help.

Booking surgery

I saw my gynaecologist at the start of April and we booked the surgery for the 17th of May at the Greenslopes Private Hospital. It probably could have been a bit sooner, but I didn’t want to ruin our little break by having surgery just before it! That is probably the biggest benefit to private health insurance. Through the public system, the wait for this type of surgery is around 6-9 months. Then if your time comes up, if it doesn’t suit you might be waiting a few months more.

Anaesthetic Specialist

I was booked in and told who my anaesthetist would be and was very happy to discover it was the same awesome doctor I had last year for my polyp removal. I woke up very nicely from that anaesthetic, so I was happy it would be her again.

For those who aren’t aware, the anaesthetist is a specialist in their own right. They charge separately, and while no-gap anaesthetists probably exist, this one is not one. She does have an arrangement with my health insurer, where I pay a lot less, so if you are looking into health insurance it is worth keeping this in mind.

She rang me the night before surgery. I don’t know if this is standard practice, but it’s what she does. We discussed my Fibromyalgia and my need for pain relief, and that I woke up terribly from the anaesthetic 5 years ago, but beautifully from hers last year. We discussed my reactions to certain antibiotics and other intolerances. Again, another kind, caring doctor who genuinely wants to help her patients.

Checking in to hospital

I was sent an online check-in link from the hospital a week before the surgery, which is great, because then you can go to your cupboard and look at all your supplements without having to try and remember them at the hospital! My only tip in this regard is to not trust your FibroTroll brain to get the date right – if you get it wrong the poor admin staff have to fix your stuff up!

My admission time was 1:30 pm, so I could have breakfast which I was very happy about. I made sure to have a high fibre breakfast with a good amount of protein and healthy fats so I would feel full for as long as possible. Please be aware that if you are booked for surgery and your fasting guidelines are different, then follow what your hospital/doctor says!

We arrived a little early (a bit of a miracle for us!) so there was a short wait after the last of the paperwork was filled in. A nurse came and admitted me. she did a bunch of pre-op tests. This included height, weight, blood pressure, temperature and a urine test. Naturally, given that they will be poking around your reproductive organs, they do want to be sure you aren’t pregnant or have any other issues beforehand.

I was then given my identification bracelets, a hospital gown, disposable underwear, compression stockings, and a hair cap. Quite the fashion statement! They also brought me a couple of lovely warm blankets – they literally keep them in a warmer, so they are absolutely delightful when they go on!

The Knight hung out with me for a while and we played some games. We were interrupted every now and again by a nurse coming to ask me questions. It seems to be protocol that a number of different people ask the same questions. Presumably to avoid any mistakes, and I find it reassuring that they are not complacent. Once it was time for me to go to surgery, the Knight took the things I wouldn’t need post surgery home and headed back to work.

Pre-op stage

In the pre-op room I was asked the same questions again, then the anaesthetist placed a canula in my hand and the surgeon came and spoke to me. Then I was wheeled into surgery, the anaesthetist gave me something (I forgot to ask what- I know they joked it was champagne!) – and I remember very little beyond that point. I shifted myself onto the surgery table, I’m not even sure I got myself into the right place! Then everything is blank.

The operation

Obviously I was not awake during this part of the proceedings.

The polyp was removed first via a fancy instrument called a Myosure threaded up through my cervix. I had this procedure last year and when it is the only procedure, it is minimally invasive and not overly painful on recovery.

Then on to the endometriosis removal. Basically what they do, is cut a hole in your belly button and in other places around your abdomen – in my case it was 3 other incisions. They pump your abdomen full of gas so they can see, then insert cameras and lights and instruments. Then the surgeon does the tricky things that he (or she) has trained for many years to do. They have a look around (hence why they call it exploratory), and in my case remove a cyst off my ovary and a bunch of endometriosis.

They squeeze most of the air back out again, in a manner that I can only imagine as an amusing oversized whoopee cushion, but is probably not quite the case.

Then they close you up, and in my case apply a waterproof dressing/glue over the incisions and wake you up.

Post op stage

The next thing I remember is waking up in the post-op room with some nurses being lovely again and trying to get my pain levels down. I’m not going to lie, the pain was pretty high, but they were determined to help. Thankfully, they succeeded and it wasn’t long before I was moved again.

I brought my own food due to my food intolerances, but they brought me a plate of fruit and a green tea to go with it.

Once I had eaten, and dressed and urinated (they like to make sure everything is working properly), it was time to go home.

One of the helpful staff at Greenslopes took my pain medicine prescription down to the pharmacy so that the Knight could pick it up without having to wait. Then they wheeled me down to the car and I headed home.

The next few days weren’t much fun, but I will go into that in more detail in my next post. I’ll also share my tips for pre- and post- op things to do (or not to do!)

Go to Part 2 or Part 3 or Part 4 or 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!

Food for health

A common theme in many of my support groups, is people asking about diet. Which diet is best for Fibromyalgia? Has anyone tried keto, vegan, gluten and/or dairy free, this diet, that diet, the only breathe air diet? Okay, maybe not the last one, but it feels like it sometimes!

And the answers people give to those sort of questions is always varied. Some people swear by vegetarian/vegan diets, LCHF (Low Carb, Healthy Fat), low fat diets, carnivore diets, low salicylate diets, low FODMAPs, GAPs, Wahls – there are as many answers as there are questions.

I’ve tried a lot of them. Some made me worse, (like vegan and low salicylate diets), some made no appreciable difference (like FODMAPs and the blood type diet) and some helped me – Like GAPs, the Wahls protocol and metabolic balance.

I often write about diet, and I do this because I honestly feel it is a super important part of managing the FibroTroll. But I want to make one very important point:

There is no one-size-fits-all diet for Fibromyalgia.

What works for me, might be okay for someone else. But in all likelihood, they will need to tweak some foods to suit them.

It has been a long experiment, and it’s not over yet. I did many elimination diets, blood tests and stool tests. The GAPs diet made a huge difference to my IBS issues and helped resolve a few (unfortunately not all) of my food intolerances. The Wahls protocol helped a little with pain, but I gained weight, when I was already carrying a few extra kilos and that didn’t help the fatigue. Metabolic balance got me back to my ideal weight and helped me isolate some more foods that were causing issues.

Right now, I find I do best on a low carb, but not quite ketogenic diet. I don’t eat cow dairy (except for ghee) or grains. I avoid added sugar – I do have a little 85% chocolate as a treat from time to time, but as a general rule I avoid sugar. I have recently worked out that nightshades are not my friend, and I avoid the random foods that don’t fit into a category but that cause me problems – like pork and almonds and most, but not all legumes. I continue to mostly follow my metabolic balance plan, using principles from both Wahls and GAPs.

Most of my food is organic, with a few foods from the Environmental Working Group’s clean fifteen list included if the organic version is super expensive. The EWG is based in the USA, but its Clean 15 and dirty dozen lists are a good guide if you can’t afford all organic food. I also try as much as I can to stick to foods that are in season. I get most of my fruit and vegetables from Food Connect in Brisbane. Luckily, I can usually find a box that only has a couple of things that I can’t eat – which my wonderful Knight then consumes!

Due to this, I mostly bring my own food to functions. While I love to have people at my home and to feed them, bringing my own food to everything gets a little tiresome. While it is significantly better than having an IBS attack or migraine from the wrong food, it wears you down after a while.

I recently caught up with a friend for lunch for her birthday. I made an almost compliant (a bit higher in sugar than I would normally eat) chocolate tart in lieu of cake and she insisted on feeding me lunch. It was such a wonderful feeling, to leave the house not having to bring my own food. We had roast chicken and vegetables and it was delicious!

I had significantly underestimated the mental benefits of someone offering to feed me and taking my dietary needs seriously and making a meal that included me.

So to that end I have given myself a new challenge. Let people feed me. If they ask, give them a simpler version of what I can’t eat, let things be non-organic, and so long as it’s gluten free, don’t worry too much about contamination. I’ll always let them know that it’s okay to back out and say it’s too hard.

It’s a bit outside my comfort zone, but I think (and hope) it will be good for me. It touches a little on the mental health care that is the other thing I write a lot about.

Wish me luck!

Another post on the importance of mental health and chronic illness.

I just realised that I completely missed March. I did a lot of writing, just not here.

I’ve been dealing with some personal issues and because it affects way more than just me, I’m not going to go into detail on a public page. I also had to do a witness statement to police (I’m fine, just saw a thing and my statement will hopefully help lock up a person who very much deserves it.) And again I have extra health issues on top of my usual ones – once again gynaecological on top of my usual dysmenorrhoea, so I’ll be off for more surgery in May.

So this last month, my cortisol (stress hormone) levels have probably been through the roof.

I tried all the things my psychologist recommends, I tried to meditate, which didn’t go so well. I tried to exercise, but because cortisol elevates pain levels, that also didn’t go well. I wrote – A LOT about the issues. Mostly just to myself, but also to the other people involved. And none of it was helping.

I am very much a person who needs to close boxes. Closing some of the boxes helped a bit. Getting the witness statement done and signed, closed that box. Seeing my gynaecologist and booking surgery closed that box. It might seem strange that I consider that box closed, but having someone willing to investigate and having a plan in place is enough for me to close that box. Surgery itself will be a box I open in May and I’m okay with that.

Open boxes cause me distress. The personal issue was most definitely an open box and it didn’t seem like there was going to be a way to close it. Lack of response to an issue causes me more distress. Even someone being angry at me is better than the feeling that I am not even worth the time to respond. Which may not be what they were thinking, but logic doesn’t always get a look in when you are on a downward spiral. So I spiralled faster and further downhill. I ruminated and stewed and argued with myself and stressed myself into a flare.

Thankfully, not a full on “can’t get out of bed because I’m too wobbly and weak and sore” level flare, but a milder version, where I can basically take care of myself for most of the day, but anything more than that and the FibroTroll starts playing with his clubs.

Elevated cortisol levels also weaken your immune system, so I’ve been fighting a cold as well, which has meant I couldn’t get into my HBO2 chamber because my sinuses were blocked.

So I made an appointment with my psychologist. As I’ve mentioned before, mental health concerns like anxiety and depression are common co-morbid conditions with Fibromyalgia. Any flare ups with those conditions, and/or increased stress levels will make the FibroTroll come running to the party.

Yesterday, I spent a very productive session with my psychologist and now I have a new set of tools in my toolbox for dealing with this. While the issue is not yet resolved, and may not get resolved in a way that makes me happy, I am now much more ready to deal with it. We worked out a way for me to close a smaller box regarding the issue, and she gave me tools to help me be okay with the bigger box not being closed and possibly not ever getting to close it. I’m sorry for being so vague, but I hope that vagueness will actually help others to apply the idea to their own issues.

I guess the point of today’s post is that it is okay to get professional help. It’s okay to not be coping even if it seems like it should be a minor issue. Psychologists are highly trained, caring people and they have the tools to help you cope. While psychology has not cured my Fibromyalgia, it has absolutely improved my quality of life.

So if you are struggling – with anything at all, no matter how “minor” you might think it is, reach out for help. You do not have to do this on your own.