Tag: Fibro

(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.

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!