Flying with Endometriosis Part 4: Things to Consider

For many people, flying is already a nightmare.  For people with endometriosis, there’s an added layer of difficulty.  In this multi-part series, “Flying with Endometriosis”, I want to talk about some of things we can do to make travel a bit easier.

Sorry about my recent absence! My computer is utterly broken and I’m still adjusting to the app so there has been a bit of a break. I’ll try and return to more regular posting now, noting I’ll jet-setting off this very day, but expect posts to have a slightly funny format whilst I familiarise myself with the WordPress app.

Ok, we’ve gone through our pre-flight checklist, packed our carry-ons for maximum comfort, and dressed to impress our endo bellies. What else do we need to do?

This is less a post and more a list of things to consider for your trip that didn’t really fit into my previous three articles, but are still really important. I’ve divided them up into topics below.

Luggage

Is your carry-on manageable, or will it put pressure on sore joints if you have a flare-up? Think about the type of bag that is most comfortable for you. Although I’ve gone for a messenger bag for its capacity and great storage, it’s probably not the best choice if I start to end up in pain as the weight is not easily distributed across my body. A backpack or small wheeled case (although I often find I’m too tall to manage these comfortably) would be the more sensible option.

Is your main luggage easy to manoeuvre? I prefer a suitcase with four wheels to the traditional two. Firstly, it is easier for my tall self to handle without it running into my heels, and secondly, it trundles along happily next to me with minimal effort – great if my pain starts to flare. A large rucksack/hiking pack is not so great for me as it presses on my lower back and requires me to bear a fair amount of weight, which my battered bod doesn’t love.

Have you packed it for best weight distribution? Remember, heavy stuff near the wheels, light stuff at the other end. I find packing cubes invaluable for organising everything inside the suitcase.

Arrival

Is your hotel close by? After a long flight, it isn’t always a good idea to jump straight into sightseeing. You want to dump your luggage and explore in freedom, and possibly get a bath or shower to help relax your pelvis and work out any knots. Make sure that your hotel is either possible for you to walk to without inducing a flare-up, or that you can easily acquire transport there.

Have you scouted out local food options? If you are on the endo diet, low FODMAP diet or similar, you may want to know in advance where you can safely eat to prevent you having to go traipsing round the city in search of options when you are exhausted from your flight. A lot of travel bloggers and the like will turn up their nose at people who aren’t prepared to try all the wildest local cuisine, but it isn’t always practical when you have dietary restrictions. Don’t feel bad if you can’t or just don’t want to – food is not the only part of travel and you are not a “bad” tourist if you can’t handle the local food.

Are you near a doctor or chemist? Make a point of knowing the closest one to your hotel. Most chronically ill people are going to be pretty well-prepared to manage their conditions on the go, but things can go unexpectedly wrong, luggage can get lost or stolen, and medications can get confiscated by unsympathetic security staff. You never know when you will need a bit of medical assistance so better safe than sorry.

Tourism

Are you confident you can manage the activities you have scheduled? Make sure you know the refund policies of any booked activities just in case, and make sure you know your limits. I love guided tours as a good way to familiarise myself with a new city, but many involve a lot of walking. If you think it will be too much, consider a tour that involves transport such as a car, bus, bicycle, rickshaw, boat or tuk tuk.

Have you scoped out wheelchair hire? Many people with endo won’t need to fall back on a wheelchair, but I often do. Knowing where I can pick one up offers me far more flexibility than I would otherwise have.

If you do need a chair, are the places you want to see wheelchair-friendly, and will getting there in a chair be an option? You want to make sure that the chair helps you, not limits you. Using it as much as possible in accessible locations will ensure that you have the energy and spoons to get around less accessible locations on other days.

Do you have a couple of catch-phrases in the local language? Being able to say “help” and “I don’t speak X, do you speak English?” may just make the difference between being alone and in pain and being able to get the help you need. You don’t need to memorise the phrase book, but a couple of sentences can be so useful.

Do you have a map, either physical or on your phone? When I get a flare and have serious pain, my ability to think, plan and act is totally compromised. Being able to access the map function on my phone and have it tell me where to go is so useful. All I have to do is push through and follow instructions rather than try and navigate my way back to bed through an unfamiliar city.

What other steps would you take, endo-havers? Anything you always try to think about in your travels? Let me know in the comments!

Error: Blog Not Found

Hi all

I’m having some technical difficulties here at Bubbles central but I have some great posts coming. The travel series will continue and I’ll take you on another little trip with a Review of two of the ACT’s October festivals. New content coming…as soon as my computer remembers how to computer. 😩

Flying with Endometriosis Part 3: What to Wear

For many people, flying is already a nightmare.  For people with endometriosis, there’s an added layer of difficulty.  In this multi-part series, “Flying with Endometriosis”, I want to talk about some of things we can do to make travel a bit easier.

What is the first priority on a plane (except from arriving at your destination, of course)?  Comfort!  Planes are not the most comfortable, particularly if you are crammed into economy.  With endometriosis, it’s even less comfortable.  You’re stuck in pretty much one position for hours at a time and you have to line up for ages to use the toilet.  Then you have to walk around a heap in the airports.  Enduring all that, you can bet your [insert noun here] I want to be comfy.  Trouble is, I also want to look good, partly because I am vain and shallow and partly because it makes me feel more confident, alert and prepared.

I’ve already discussed how to dress an endo belly, but when you are travelling you really have to take comfort to the next level.  If you are more of a video person, I highly recommend checking out Miss Louie, who is one of my favourite youtubers.  She’s done this video and this one with a whole bunch of easy-to-wear travel outfits.  There’s something for everyone.

However, if you prefer a written list or simply can’t see Miss Louie’s options working for you, read on for a more general discussion.

In choosing an outfit, I think there are some questions you should ask yourself:-

  1. Does this press on my pelvis when sitting, standing or lying?
  2. Does it press on my pelvis if I swell up?
  3. Does this press on any other joints that tend to get sore or swollen?

These three are the most important, because that is ultimately what will dictate if an outfit is going to be comfy for a person with endo.  Anyone who suffers from flareups knows that something digging into your pelvis when it is sore and swollen if just horrific.  For some people, this may mean that any pants at all are off the table and you need to look at a dress instead.  For others, leggings or even super stretchy jeans or an elastic-waisted skirt will be fine.

The remaining questions are more general and probably less of a deal-breaker than the above three, but still worth thinking of:-

  1. Are there any buttons, zips, or other decorative things that will dig into you?
  2. Is it comfy enough to sleep in?
  3. Will it ride up and flash things it shouldn’t?
  4. Will it give you a wedgie?
  5. Will it wrinkle easily/does it look bad wrinkly?
  6. Can you take layers off if you get too hot or add layers if you get too cold?
  7. Do your shoes slip off easily for going through security?

If it will dig in, isn’t comfy, rides up, wrinkles, can’t layer and your shoes require a lot of lacing or other fiddling, don’t wear it.  It will be a hassle.  It will be uncomfortable, you will not sleep as well and you will get to the other end looking and feeling less than stellar.

My go-to for flights is this combination.

IMG_0158.PNG

All of these items are from Modcloth, except the boots which are from Betts.  (Yes, I used Stylebook to put this together).  They are a few years old so I doubt anyone dying of envy about my incredible stylishness will be able to get those exact items, however.  From the bottom up:

  1. Knee-high riding boots might not be as easy to slip in and out of as a pair of slip-on trainers, ballet flats, or ankle boots, but I know that I will wear them a lot in the UK so if I don’t wear them, I’d have to pack them anyway.  As they are my heaviest shoes, it makes sense to carry them on my feet rather than haul them all over the airport in my suitcase.  They do still come on and off easily, and look good with my leggings.
  2. Under my boots I’ll be wearing a pair of compression socks, to avoid DVT, or Deep Vein Thrombosis, which is a blood clot that forms in the leg.  You won’t necessarily get it if you don’t wear them, but if you do, it can be super dangerous.  It’s very easy for DVT to become life-threatening in a very short space of time.  I’ll also use the compression socks in hospital after my operation, so they are good investment, if not the comfiest.  As I wrote earlier, I’ll have cosy socks to wear over them on the flight, because I kick my boots off as soon as the seatbelt sign goes off.
  3. I love these leggings because they have actual function pockets that can hold a lip balm or spare change.  They are a little small for my phone, but having pockets at all is great.  They are thick and warm but not too hard on the old pelvis.
  4. Underneath the top I’ll be wearing this singlet from Boody.  Incredibly soft and comfy (with the added bonus of being ethically made and environmentally friendly), the singlet will just provide an extra layer of warmth, help preserve modesty if something happens with my top, and let me take a top layer off if somehow my flight gets stranded in Dubai with no air-conditioning again.  Seriously not fun.  I nearly passed out.
  5. The top itself is just loose, soft and very comfy, but a bit fun with the patterned sleeves.  It helps make it just a little less basic.
  6. The cardigan is loose and voluminous so I can wrap it around me.  It has a deep hood so I can cover my face in case I loose my eye mask for the flight, and hide the fact that I’ve got a sheet mask on or suchlike.  It looks a little more dressy than, say, my Batman hoodie, but it is still comfy and casual.

I’ve flown with this outfit before and it was comfortable and practical.  Post-surgery the leggings might be a little tight or irritate the incision sites – if that happens, I’ll switch to a long-sleeved maxi dress from Divinity collection.  It’s not quite as ideal as they are incredibly long so they do drag on the floor and do wrinkle a bit.  However, it is very comfy, will keep my covered when I lie down, and is an easy canvas to accessorise.  My pelvis will be totally free to do its thing and I will be warm, my modesty will be protected, and I should still look pretty acceptable when I stumble into my husband’s arms when I arrive back in Australia.  I’ll be taking both my black and my burgundy ones in my suitcase in any event.

Do you have a go-to travel outfit?  What do you look for in travelling clothes, either generally or to protect yourself from endo pain?  Let me know in the comments!

Flying with Endometriosis Part 2: Carry-On

For many people, flying is already a nightmare.  For people with endometriosis, there’s an added layer of difficulty.  In this multi-part series, “Flying with Endometriosis”, I want to talk about some of things we can do to make travel a bit easier.

In my last post I talked about some of the things people with endometriosis can do before they travel to make the journey a little easier. But what should you take on the flight with you to help once you are in the air?

I’m going to list all the things I’ll be packing in my carry-on and why. It won’t all be endo-stuff, so hopefully this will be useful to everyone, but there will be plenty of endo-specific items on there.

Although I do want to try travelling with only a carry-on in future, that’s not feasible this time round as I’ll be having surgery and will need more items than I can fit in a carry-on. This post is therefore going to assume people are travelling with both a carry-on and checked luggage.

My carry-on bag is the Deluxe Handbag of Holding from ThinkGeek (unfortunately discontinued). It has lots of pockets, is comfy to carry and holds heaps of stuff. It also slides neatly into the overhead lockers, or, better yet, under the seat in front. For that reason I prefer it to a backpack, which can be more three-dimensionally bulky than a messenger bag.

Deluxe Handbag of Holding
Deluxe Handbag of Holding.  Note the many handy pockets.  

I’ll divide the contents up into “themes” within the back, using the different pockets and some clear makeup bags to corral all the different bits and make them easy to find.

Now, onto my list.  Buckle up, because it’s a long one!

ENTERTAINMENT

– A book. Kindles and e-readers are great, but we have a family tradition of treating ourselves to a new book when we go on a long-haul flight. It is nice to read something new and to give my eyes a break from the screen.

– A kindle, because I read quickly and there is no way one book will be enough, particularly whilst I’m recovering from surgery. It is easier on the eyeballs than a backlit screen and holds a charge for a million years.

– My phone. Music, books, movies, my blog, the internet, app games, and a useful tool all in one. To maximise its use I will also be taking my earbuds and a portable recharger pack, because iphones are battery-guzzlers and I use mine a lot.

– A puzzle book. I love sudoku, killer sudoku, kakuro and grid-based logic puzzles. These booklets are usually thin and light, but doing something on a hard copy is a nice change from electronic entertainment and helps stimulate my brain by giving it something different and a little challenging to work on.

– My journal and pencil case.  I’ll be able to write, doodle, plan, play noughts and crosses or hangman, and pass immature notes to my sister.

COMFORT

– Cosy socks. I’ll be wearing compression socks to reduce the chance of DVT (more on that later), but they aren’t very warm, planes are chilly and I have poor circulation. A pair of warm socks makes for a happy me.

– A blindfold and earplugs. Most airlines will provide these and they are really helpful in getting some shut-eye on the plane, especially if you, like me, sleep with a blindfold anyway.

– A travel pillow. For economy/premium economy, a neck/shoulder pillow that makes it possible to sleep in an upright position, as it will support your head from lolling uncomfortably to the side. There’s bucketloads of different styles out there, but I’ve chosen this one as I like how high it keeps my head and the fact that it doesn’t go behind the neck or across the throat. Although I may not need it on the flight it will be very useful on the trip to hospital. For people in business or first, you may not need a pillow at all, but I have used this one before and really liked it. It can also help bolster the slightly sad pillows they give you to sleep on.

– A blanket or shawl. I opt for the blanket in the above pillow/blanket combination. It’s thin and light but very warm. I get cold absurdly easily and get too cold on flights even with the blankets they provide, so an extra blanket is a must for me. I choose a blanket rather than a shawl as it covers all of me, but a shawl is more versatile as you can wear it and not look like a ninny.

Berocca. I love this stuff. For those not familiar with it, it is a multivitamin that dissolves fizzily in water. It comes in a few flavours (only berry and orange are readily available in Australia) and it is very refreshing. It perks me up far more easily than caffeine without the crash when it wears off. It’s healthier than coffee and has the added bonus of helping prop up your immune system with easily-absorbed vitamins.

– Painkillers of varying strengths. I will be taking everything from panadol and De-Gas to endone, just in case. If you are planning on taking the strong stuff, it is a good idea to have a letter from your doctor explaining that you have a legitimate reason to be carrying a small pharmacy of opioids.

– Heat patches. You can’t really take a microwaveable heat pack on a plane, but stick-on heat patches can give the same relief for a fraction of the room and don’t require external heating. Carry plenty. I’ll be wearing one on my lower back as a matter of course and carrying spares for my pelvis.

– Nasal drops and nasal spray. I get a very dry nose on flights because they are so dehydrating and I live in dread of that turning into (yet another) sinus infection. Nasal drops help get rid of congestion and the spray helps rehydrate those sore passages.

– Lozenges. Again, dry air, insufficient water – a sore throat is a strong possibility.

– A water bottle. You do get water on planes, but it comes in very small disposables cups or bottles. It simply isn’t enough to keep you hydrated. Taking a water bottle lets you have more water at a time without bothering the cabin crew every thirty seconds.

– Knee pillow. This isn’t something everyone will need, but I’m a side-sleeper and I need something between my knees to alleviate pressure on my back. I have a very old, very floppy pillow I use for this and I’m going to be terribly extravagant and take it with me. I can also use it as lumbar support, cushioning between my pelvis and a seatbelt, or just for clutching to my stomach as a comforting thing during a flare. It’s not for everyone, but for me it’s a must.

– A hair tie and hair brush.  I’ll be braiding my hair out of the way anyway, but hairties snap and get lost exactly when you need them not to, and it is always nice to have brushed hair.  Makes you feel a little more human when you stagger off the plane.

SKIN

– Face and body wipes. Air travel is exhausting and it is easy to end up clammy and gross-feeling. Being able to clean up either at a stopover or in the airport loo can make you feel so refreshed and more awake.

– Mist toner. Whenever I wash my face I always follow up with a toner. I’ll be taking my Skinstitut mist, which is not only a toner but can also be used as a refreshing spray under or over makeup and smells divine. A little spritz can help wake you up and help you stay feeling fresh in between washes or stops.

– Night cream.  Because it is heavier than a day moisturiser it is better at standing up to the beating your skin takes on a long flight.  I’ll be taking this one from ELF as my normal Sukin one, whilst amazing, is in a big heavy tub.

– Lip balm.  Again, airline = dehydration = chapped lips.  I’ll be using a tinted one from Hurraw to add a little colour to otherwise uniform pasty white of my face.

– Sheet masks.  Yes, it’s a bit extra, but I’m going to be on those planes for a long time and a little extra moisture and luxury never goes astray.  I am determined not to look the way I normally do when I stumble off a long flight – like an ashen, pasty-faced zombie.  I will have glowing skin, darn it!

– Eye roller.  I just use this little doodad from ELF, which instantly refreshes and cools my puffy eye bags.  It’s just really nice and takes up basically no room, so for me it is totally worth it.

– Concealer and brow powder.  The only makeup I’m taking.  I just want to be able to cover the inevitable enormous pimple that will arise during the flight and fill my brows in, because that makes me feel a little more put together and with it when I land, which in turn makes me feel more awake, confident and ready to deal with the jetlag.

– Hand sanitiser.  Planes are filthy and you don’t necesarily want to wait in a queue to wash your hands before your food comes, especially if you get trapped by the food trolley and have to wait ten million years to get back to your seat.

– Hand cream.  Dehydration, etc etc.

– Deodorant.  For the sake of your fellow passengers, please.

– Toothbrush and toothpaste.  Some airlines give it out, some don’t.  I want to take my own toothpaste in any case, so I know that it is vegan, cruelty-free, low-abrasion and contains fluoride.

MISCELLANEOUS

– Spare undies, because when you have endo you never know what your body will surprise you with.  Also, luggage can get lost.

– A spare top and leggings.  I’ll be taking these leggings and this long-sleeved top from Boody.  These items are incredibly thin and lightweight and take up very little room, but they are warm, soft and incredibly comfortable.  The leggings I won’t wear without something covering my bottom as they are a touch see-through, but these will double as a change of clothes in an emergency, and will function as pjs if my luggage goes AWOL for a while.  They are also great for an extra layer of warmth if I get even colder than anticipated on the plane or when we land.  I plan to buy several more of those tops.

– Sanitary pads.  See above re underpants.  Also, it’s nice to be able to have one to hand if another person finds themselves in period-related difficulties without adequate supplies.  Tampon or cup users will want to bring those instead.

– Passport, tickets and wallet (duh).

I think that more or less covers it!  I will no doubt think of extra things I want to take, forget to pack something, or change my mind at the last minute, but this is my list as it currently stands.  Anything you would add to it?  Anything that you have found really helps your endometriosis travel a little easier?  Anywhere you think I’m being totally OTT?  Let me know!

 

 

Flying with Endometriosis Part 1: Pre-Flight Checklist

For many people, flying is already a nightmare.  For people with endometriosis, there’s an added layer of difficulty.  In this multi-part series, “Flying with Endometriosis”, I want to talk about some of things we can do to make travel a bit easier.

Happy October!  As I mentioned a few posts back, I’m travelling to the UK this month, so travel is very much on my brain, hence the new series.  I want to do some tips and tricks on making travelling with endometriosis just that little bit easier.

Ensuring that you have the smoothest flight possible starts long before you get on the plane.  Below are some of the things I would recommend doing before you travel.

1) Book the best seat you can afford.  It’s hard to pass up on some of the great deals you can get on an economy flight, but let’s face it – economy seats on a long-haul flight are just horrible.  This is particularly so if sitting is a difficult position for you.  When I’m in a flare-up, it’s the worst possible, as it puts pressure on my back and makes my ovaries very unhappy.  The seats are also very small and there isn’t much room in the footwell, so you can’t wriggle around to get a better position unless you’re very tiny.  At 5’10” (178cm) it’s definitely not an option for me.  If you can afford it, consider an upgrade to premium.  You don’t get a lot of extra room or recline, but it might just make a difference.  If you can’t afford it, do your research on how to nab the best seat in economy.  Seat Guru can help you find the one for your plane.  I’d always say an exit seat is best for the extra legroom, but ensure that you are physically able to assist with the doors in an emergency in you go for that one.  Also utilise your charm and your poor swollen belly to try and get a free upgrade, noting that it is getting much harder.

2) Get travel insurance. Be careful, though – many will not cover pre-existing conditions, so search around for one that does. It is pricey, but it is probably cheaper than the cost of rescheduling your flight and paying for extra accomodation if you can’t fly due to a flareup. That being said, the cost for many people may be prohibitive so some people may find that risking it is more financially sound, particularly if they aren’t prone to flare-ups or are practised at travelling through them.

3) Rest. In the days leading up to the flight, rest as much as you can so that you have a good healthy baseline to start from. I know I don’t get much sleep in economy, and whilst lots of sleep prior isn’t going to magically prevent you from being exhausted when you hit the tarmac on the other side, it will help you feel better for longer and strengthen your immune system (planes are germ factories).  If you can, pack the majority of your stuff at least a day ahead of time so that you can use your last day to relax and only worry about the last-minute things like your toothbrush.

4) Get hydrated.  Like this resting tip, this is to help buffer your immune system against the hit it is about to take on the plane.  In addition to being super germy, planes are incredibly dry and it is really hard to take in enough liquid.  Make sure that you are at least starting your journey on the right foot by being as hydrated as possible for at least a few days before you get on the plane.  This will also help you avoid UTIs.  Trust me, you do not want a UTI whilst flying, especially whilst flying long-haul economy.  0/10 would not do again.

5) Avoid triggers.  If you know you are reactive to certain foods or activities, do not eat those foods or engage in those activities prior to flying.  The last thing you want to do is set off a flare-up before you even get on the plane.  I’ll be completely nixing onions, garlic, beans, cabbage, alcohol and carbonated drinks from my diet for a week prior to flying, and cutting way down on the sugar and gluten.  I’d also suggest not smashing out a mad core workout prior to your flight – for a few days beforehand you might want to limit yourself to yoga, walking and maybe some gentle weights.

6) Take your medications and vitamins religiously.  Again, it is all about getting your immune system to the best place it can be before you put it on that plane and destroy it. Even if you aren’t normally a supplement taker, consider a multivitamin and maybe a cranberry pill (I refer to my earlier point re UTIs) as a pre-flight booster.

7) Plan an itinerary (if you can).  If you are on holiday you want to see and do as much as possible.  If you have at least the broad outline of a plan you can build in rest days.  Last time I was in Europe I was totally healthy, and tried to do heaps every day.  I was utterly exhausted after a few weeks.  I will never do that again, especially now I’m a sicky!  It also allows for a little more flexibility, and, of course, helps you pack sensibly for the activities you are doing.  Speaking of which…

8) Plan a capsule wardrobe.  This is a wardrobe where everything goes with everything else to make multiple outfits out of fewer pieces, so you can reduce the weight of your suitcase (a very good thing when you have endo!).  It also forces you to really think about what you are bringing, which will hopefully encourage you to choose only comfy, multi-functional pieces that will see you both through whatever your holiday activity is as well as a flareup or rest day.

9) Treat yo’self.  The day before you travel (or the day of, if you are flying later in the day) have a nice bath, if you have a bathtub.  Do all the luxurious skin things like a face mask, shaving, washing your hair etc.  It will not only help you feel super nice on the plane and help you look spiffy when you reach your destination, it will also allow your muscles, and that pesky pelvis, to relax.  Your poor body is about to crammed into a pressurised metal tube on a small seat next to a bunch of randoms.  It deserves a little love.

Image result for treat yo self gif

So, those are my pre-flight must-dos.  Any I’ve missed?  Do you have a pre-flight ritual that helps your body deal with the stresses of long flights?  Share in the comments!

The Selfishness of the Sick

There’s a weird thing that you experience when you’re chronically ill that you just don’t feel when you are healthy.  That’s the sensation of feeling selfish for wanting to be healthy.

I’ll try and explain.

When you have a cold that won’t go away and its really bad, you go and see the doctor, because you expect, quite rightly, that a cold should clear up.  After all, healthy is your normal state and it is to that state that you would like to return.  You don’t feel selfish for wanting to be healthy again, and that is absolutely as it should be.  The doctor doesn’t imply that you should just learn to deal with being sick better, or suggest that maybe you should just settle for a less bad cold than what you have because after all, it could be worse.  They listen, they give you your antibiotics, and you generally don’t leave feeling that you are being silently judged for wanting to be rid of your cold.

However, when you are chronically ill, it’s a bit different.  First of all there is the adjustment stage, where you have to learn to accept the fact that you will never be healthy in its true sense again.  That’s a topic for another post, because it really deserves a proper article.  Even when you’ve adjusted your own expectations, though, you have to deal with the expectations of the medical profession.

When it comes to endometriosis, a lot of doctors (not all, but too many) leave you feeling like you are asking for too much.  Hospitals are the worst at this – they just want to get you to a point where they can turf you back out with a pocket full of endone and not be their problem anymore.  Contrary to what you see on House or Scrubs, there is rarely any follow-up, insistence on solving the problem or finding a miracle cure.  Hospitals won’t keep you til the pain has reduced enough for you to walk easily or return to work.  They just wait for you to say that the pain seems to be reducing slightly, and you’re gone.  I know that hospitals are underfunded and understaffed, but it really makes you feel like a massive burden rather than someone with a right to health, or even a life without constant pain.

Private gynaecologists don’t have that excuse, but they do it too.  I’ve been told that I should expect to live the rest of my life with a base level of pain at 4/10 every single day.  At my last gynaecologist, I raised an ongoing issue that was causing me pain and inconvenience and he just seemed utterly uninterested.  After all, I could walk, couldn’t I?  What is worst for me is the silent undercurrent that seems to say “Why can’t you settle for what you have?  Why isn’t this good enough for you?”  It makes you feel naive and worst of all, selfish.

It isn’t enough for me, though.  I’ve had a great experience lately with Zoladex, a subcutaneous implant that dissolves over time and puts you into artificial menopause.  It has effectively ended a three-month flareup during which I could barely work.  At my last consult with him, Dr Edi-Osagie asked me if simply staying on the implant and avoiding surgery was an option for me.

I did seriously consider it, but in the end, I decided to pursue surgery anyway.  This is for a few reasons:-

  1. Zoladex has been a big improvement on where I was, but my quality of life is still nowhere near what it was prior to my first surgery;
  2. As long as I’m on it, I can’t conceive, and whilst I’m not in any rush to have a baby I do want the option;
  3. If the surgery is successful, I can come off all of the artificial hormones I’m on and let my body go back to normal, which is something I haven’t had in ten years;
  4. Zoladex and the accompanying hormone replacement therapy is expensive (about $160 a month for both);
  5. Being in menopause does have some not-so-great side effects, such as hot flushes, an increase in peach fuzz all over my face, and messed up sleep patterns;
  6. If I don’t take the opportunity to have this surgery, I may never have the chance again, and I will regret that forever.

I felt rude, assertive, guilty and incredibly selfish saying to Dr Edi-Osagie that near enough just wasn’t good enough for me.  However, he acknowledged my concerns and was so supportive of my decision, just as he was in my first consult.  I cannot recommend him highly enough.

It is really hard, asking for more.  Previously being beaten down by the health profession and being socialised as a woman against being assertive, which society reads as bad and bossy, as well as against being selfish, makes it really hard.  Women are taught to be passive and self-sacrificing, and sick people are told to be patient and grateful for what we have.  However, the risk has totally paid off for me.  Even if this surgery achieves nothing, I can fall back on the Zoladex, something I wouldn’t have if I had settled for my previous gynae’s advice, just like I wouldn’t have had the improvements in my health that he gave me if I had stuck with the advice of the two before him.  I now have a specialist who is supportive, validating and proactive.

So, if I can give one piece of advice, it is this: be selfish.  Ask for more.  You should not have to settle for “good enough” when it comes to your health.  In the end, you may have to, but don’t stop trying as long as you have the resources to do so.  It is your health.  It is your quality of life.  You are allowed to be “selfish”.

The Problem with “Curing” Us

Today I had a really annoying and unsettling experience.  Like most such experiences, it happened on the internet.  I’m not going to post screenshots but I will talk about what happened, because people stepping over boundaries is a huge thing that most chronically ill/disabled people experience often.  I’ve touched on this before, but today I want to go into a bit more detail about why it is a real problem.

So, my friend posted a critique of Big Pharma, which simplistically stated that they create customers, not cures.  I agree that pharmaceutical companies, like every other organisation in a capitalist scheme, exist to make money, and that their pricing of necessary medication is totally unethical.  However, to suggest that they can’t provide cures at all is just misleading, as is the suggestion that the very act of creating customers by providing necessary drugs is bad.  It’s the way they do it that is the problem.  Anyway, that’s largely beside the point, although one gentleman did very kindly explain my own position to me.  How I could have understood what I thought without his assistance, I’ll never know.

What annoyed me equally as much as the above mansplainer, though, was the elderly fellow who decided to tell me – not ask, tell – to try natural hygiene.  Despite several rebuttals from me and him being shut down by our mutual friend when he implored her to tell me to contact him, he decided he was going to send me a PM about natural hygiene and offer his services again.

From my understanding of it, natural hygiene is a health movement that promotes eating clean, fasting sometimes, exercising, getting plenty of sunshine and sleeping well.  It’s based on the idea that we can help the body to heal itself.  That’s all fine and dandy and I totally support taking those steps for good mental and physical health, as I’ve outlined previously.

However, various proponents of natural hygiene also encourage rejecting all supplements and all but life-saving medical treatment or medication.  Quite frankly, I think that is incredibly dangerous and irresponsible, particularly as it is a “treatment” being marketed to desperately ill people who are often at the point of trying literally anything.  There are some diseases that the body simply cannot overcome alone, and endometriosis is one of them.

Now, giving this fellow the benefit of the doubt, let’s say he utterly believes in this system and truly believes that he can radically improve my quality of life.  Why is it still so problematic for him to contact me?

1)  It is really directive.  If someone is sick, don’t tell them what to do.  You are not a person with the authority to tell them what to do.  A far less irritating way to phrase this, rather than as a command, would be “have you tried X?” Even that is still problematic, though, because…

2) we probably have tried it, or at least looked into it.  If we haven’t, there is probably a good reason for it.  We don’t actually want to be sick.  There is nothing about endometriosis that makes it worth having, I promise you.  If it is something as basic as trying to eat healthy, sleep well, etc etc etc, we have definitely tried it, and it is very condescending to assume we aren’t already taking those basic steps.

3) It assumes that we are just half-arsing our treatment.  Every person I know with endo is seeking proper medical care for it.  I’ve gone through four gynaecologists because it is super important to me to ensure that I am getting the best medical care I can (weird, huh?).  Whatever we are doing, there’s a really good chance we are doing under proper medical advice and supervision, and that we are doing it thoroughly, because, as I said, we don’t actually want to be sick.

4) It is incredibly presumptive to assume that you hold the magic cure for endometriosis when literally legions of highly qualified doctors, surgeons and medical researchers do not.

5) It suggests that you know the disease better than we do.  Like most people with endo, I’ve spent the years since my diagnosis researching, learning, seeking treatment and reading every article about it I could get my hands on.  The fact that someone insists that they have a cure implies that they (in this case, an elderly man who is neither a gynaecologist or the possessor of a uterus, that I know of), know more about endo than I do after living with it for a decade and being diagnosed for two years.

6) It fails to notice the inherent barriers to such treatments.  Yes, I advocate eating well and living as healthily as possible.  That’s just good common sense that helps support the immune system and can (but doesn’t always) increase the body’s capacity to deal with flareups.  However, it is flipping hard.  If I can’t stand, I can’t buy healthy ingredients or prepare a meal.  If I can’t work, I can’t afford a varied diet.  If I am in horrible pain, I want – and need – quick, easy and convenient.  I certainly can’t exercise, I will probably suffer disrupted sleep, and I’m not going to put my tortured body through the rigours of a fast.

7) It crosses a line.  I told this man to stop.  I told him very clearly I wasn’t interested.  However, he not only PMed me, he also told his friend, on the main thread, to tell me to contact him.  He refused to take no for an answer.  It is incredibly disrespectful to do this, regardless of his motives.  My healthcare is my choice and when someone says “no thank you”, you need to leave them be.  There is already enough paternalism in medicine without it coming at us from randoms on the internet too.

There are ways to suggest alternative treatments to people, but generally speaking, unless you are either a doctor or actually have the disease, it’s not a good idea, because you are probably talking down to someone who a) hears this sort of thing all the time, and b) knows a lot more about it than you do.  If you absolutely cannot help yourself (please do, though), stop when you are asked to.  Respect our boundaries.  Respect that we know what we are saying when we say “no”.  Respect us.

 

The Stages of Endometriosis

If you’ve just been diagnosed with endometriosis, you may have been given a number along with it.  That’s because, broadly speaking, endometriosis can be categorised into four different stages, conveniently if unimaginatively labelled Stages 1 – 4.  It’s a system first used in America that is now recognised internationally.

I’ll explain what these stages are in just a sec, but first I want to highlight the most important thing about these stages –  THEY ARE NOT AN INDICATOR OF HOW BAD YOUR SYMPTOMS ARE.  I’m normally the first to complain about doctors dismissing you, but if a doctor says that you only have Stage One endometriosis don’t see that as them saying your endometriosis isn’t bad.  I only have Stage 2 confirmed and Stage 3 suspected, but my pain can be absolutely crippling.  Others may have Stage 4 and have practically no symptoms.  Someone with only Stage One may be in far worse pain than me.  Endometriosis is a truly wacky disease that makes no sense whatsoever, but it is really important to remember that you should not measure your pain by what stage you are diagnosed as having.

What stage your endometriosis is at refers to two things:- the spread of the lesions over your organs, and the depth those lesions are embedded to.  It can also include the severity of any scarring or adhesion, both of which can cause additional pain without actually being endometriosis in the strictest sense.

A quick word on the lingo I’m going to use below:-

  • Adhesions – where two organs become stuck together.  This usually happens because there are rough patches on the organs so they can’t slide against each other like they should.  This is common after surgery or where something (like endo) changes the texture of the organs).
  • Scars – when bits of endometriosis are removed or die back, they can leave behind scarring.  This is another thing that can lead to adhesions because scars roughen the surfaces of the organs.
  • Lesions – the little lumps of endo.  I think of them almost like pimples, with a visible head and a body that may be either shallowly or deeply embedded into the lining of whatever they are on.

Stage One (aka minimal) endometriosis is characterised by little bits of endometriosis here and there with no or very few scars and adhesions.  Generally endometriosis at this stage is confined to only a few areas, usually only in the pelvic cavity rather than on other organs.  The endometriosis lesions are generally only shallowly embedded at this stage.

Stage Two (aka mild) endometriosis starts to get a little more dramatic, with endometriosis lesions spread over a wider area, including the ovaries and the back of the uterus rather than just the upper portion.  The lesions are still generally only shallowly embedded.  There may be some adhesions but generally all the organs will be moving relatively freely.

Stage Three (aka moderate) endometriosis takes a turn for the worse, with multiple bits of endometriosis spread over a wide variety of organs.  The lesions can be deeply embedded in the lining of the pelvic cavity and the organs, and there may be significant adhesions and scarring.

At Stage Four (aka severe), the organs may be warped and distended by the endometriosis and the fallopian tubes may be severely impacted.  Organs may be stuck together at multiple points or twisted.  The lesions are deeply embedded and running amok over whatever they can latch their evil little hands onto.  Organs may be seriously scarred.

Knowing what stage you are at can be handy purely to know where the endometriosis might be and what your organs might be looking like.  Mine are largely where they should be, moving against each other smoothly, and the right shape.  My last surgeon showed me some comparative pictures of some endometriosis at Stage 4 where the ovary was totally adhered the bowel and twisted around on itself.  It was messy.  There were really visible lesions everywhere and the whole thing just looked awful.  My insides looked quite neat and tidy by comparison.

However, it is important that you don’t define your endometriosis purely by its stage.  As I said above, the stage you are at is absolutely no indicator of the symptoms you may have or the level of pain you will endure.  Further, you may have endometriosis that doesn’t fit neatly into any category.  For example, mine is probably on my bowel as well as my uterus and my lesions are apparently relatively deep, both of which would indicate that I have Stage Four endometriosis.  However, I have no adhesions, the lesions are tiny and barely visible, and the stuff on my uterus is confined to a relatively small area, all of which are Stage Two characteristics.  These stages are not the be all and end all of endometriosis description.

Hopefully that goes some way to demystifying what these stages are (if, indeed, you were mystified by it).  What stage do you have?  Did your doctor explain to you what that meant?  Did they explain to you that it had no bearing on your symptoms and pain?  Let me know in the comments.

Spoon Theory

Have you heard people say, “I just don’t have the spoons for this?” and wondered what it means?  Well, let me explain.

Spoon Theory is a way of explaining the effort of living with a chronic illness.  Created by Christine Miserandino during a meal in a restaurant, it goes like this:

Imagine that you start a day with a bunch of spoons.  These represent your total energy for the day.  Now, if you are a healthy person, that bunch is probably quite large.  If you have a chronic illness, it’s not going to be as big.

Now, take yourself through your day.  If you are healthy, getting up, getting dressed and getting to work might just take one spoon away from you.  Let’s say you started with 24.  Now you have 23.  If you have a chronic illness, each of these tasks might take one or two spoons.  Let’s say four total, because getting ready requires a number of smaller tasks.  If you started with just 12, now you’re down to 8, and you haven’t even started work yet.

Now let’s go through what would be a typical day for me.  Let’s say I’m at the court in the morning giving duty advice.  I have a three hour shift there.  That shift by itself costs me one spoon.  Add in an exceptionally difficult customer and that’s another spoon gone.  Let’s say it’s a particularly mad week and I’ve got to go into court for someone – another spoon.

So if that three-hour shift took 2 or 3 spoons, I’m down to just 5 or 6 left for the rest of the day.

I have my lunch break.  A healthy person might gain a spoon from some food and a break.  I don’t.  I need it just to maintain my spoons at their current level.

In the afternoon I see a client (another spoon), do some follow-up work from the morning (another spoon), deal with the inevitable crisis, because there is always one (another spoon), and review my files (another spoon).  That’s four spoons.  I’ve just got one or two left, and I still need to get home, eat, shower, feed the cat and go to bed.  If my husband is away, I’ve also got to walk the dog and cook myself dinner (he is my wonderful chef most nights).  As you can see, there aren’t enough spoons in the drawer for that.  That’s how I can end a day without having done much at all and still be totally and utterly wiped out.  I certainly can’t do what other people can do after work – go to a class or the gym, or spend time with friends.  If I do that I won’t have enough spoons left to do what needs to be done.

Now, some days I might have more spoons than others, and sometimes I’ll gain a spoon during the day if my pain suddenly vanishes or my meds kick in and give me a burst of energy.  On the other hand, if I forget my vitamins or suffer a flare-up, or even just have a cold, I’ll have even fewer spoons.  Right now I have the flu, a sinus infection and gastro (thank you, depressed immune system), so my spoon count is pretty low.

Some spoon-raising factors include good self care, such as getting a good night’s sleep, eating three good meals, staying hydrated, sitting in the sun for a few minutes and just enjoying life, taking all my vitamins, and waking up pain free.

Spoon-reducing factors include flare-ups, sickness, waking up in pain even if it later goes away, failure to look after myself, a late night or early morning, a bad dream, difficult people or conversations, and stress.  The longer a flare-up goes on, the fewer spoons I will have each day as exhaustion, prolonged pain and depression eat away at them.

One consequence of this is that chronically ill people have to be super aware of our spoons.  I am not always very good at this and frequently overestimate my own abilities, leaving me without the physical resources to be useful in the latter part of the day.  Generally speaking, though, I am aware that I live life in a series of trade-offs – if I do X, I can’t do Y.

Up until this little flue debacle, things were going relatively well – last week I had sufficient spoons to do something after work every night of the week, whether it be walking the dog, writing a blog post or driving thirty minutes to see my parents.  Sure, some nights I was cutting it extremely close to the wire and had to massively overcompensate with caffeine on Friday which led to terrible pain on Saturday (see?  Trade-offs) but overall I was pretty well supplied with spoons compared to how I had been just two weeks earlier.  This week, not so much.

Have you heard of spoon theory before?  Do you ever use it when explaining your illness to others, or do you have other methods you prefer?  Share in the comments below.