Comfort is key

I didn’t get around to posting this yesterday, because I was busy finishing up the story I’m donating to Fandoms for Australian Fires, a charity compilation to raise money for relief funds following the devastating bushfires which ravaged Australia over the last months. The deadline is coming up and I was on a roll, so I really wanted to get my story finished in time. Anyway, that means you’ll get two post from me today! 

 

When dealing with chronic pain, it can sometimes feel like things are out of your control. There’s no telling when the pain will flare up, or bloating will make you look five months pregnant. In such situations, the only thing you’ll want to do is curl up in bed with a heating pad and sleep it off. Unfortunately, that’s not always possible. 

 

On days when my regular clothes feel tight and restrictive, or I want to hide my endo belly, I resort to comfortable clothes. Right now, recovering from surgery, is similar. For the last 2+ weeks I’ve been living in sweatpants, t-shirts and hoodies. A plus from the current situation is that, when I go back to work next week, I’ll be working from home, so I can stick to this very relaxed uniform a little bit longer. 

 

When I have to go into the office, I can’t show up in sweatpants, so I’ll opt for my loosest jeans and a loose sweater. If it’s not too cold, I can switch it up with some leggings and a flowy top, or in summer an A-line or skater dress, which flares out from the waist. I’ll still feel a bit self-conscious, but at least any bloating will be hidden. 

 

Do you have any go-to outfits to feel comfortable? 

On my own again

Today is my first day on my own after my surgery. My dad drove up yesterday to pick up my mom, and we enjoyed a nice dinner together before they made the drive home. I’m not back to full capacity, not by a long shot, but I should be able to manage on my own. 

 

Things I can do with little issue include: 

• Get in and out of bed; 
• Sleep on my side; 
• Shower and get dressed; 
• Prepare food; 
• Laundry; 
• Walk my dog; 
• Get groceries. 

 

Things that are still difficult/not possible: 

• Bend over; 
• Work out; 
• Sit up completely straight (i.e. in a chair). 

 

This may sound trivial, but not being able to sit up straight means I’m glad I’ve got another week of sick leave left before resuming work, whether that’ll be work from home or back at the office. Not being able to work out was something I had anticipated, but I find myself instinctively wanting to flex my abs, which is not really possible at the moment. I just hope I’ll be able to go to physical therapy in a few weeks to start strengthening my abs and pelvic muscles. 

 

Not being able to bend over has a greater impact. It basically means that I can’t reach anything below knee-level. Where I normally balance on one leg while getting dressed (putting on pants and socks), I now have to sit down. Putting his harness and leash on my pug usually takes place in my hallway, but now I have him get up on the couch so I can better reach him. When going outside, I opt for shoes I can easily slip on, so I don’t have to bend down to fasten laces or pull up zippers. When filling my dog’s food bowl, getting something from the bottom of the fridge or a lower cupboard, I have to get down on my knees. It’s a bit of an adjustment, but I’m glad at the independence it offers. 

 

I’ll give you an update on how things went next week. For now, I’m hoping for small daily improvements. And I sent my mother a colorful bouquet of flowers to thank her for taking care of me. 

Venturing outside

While this is Endometriosis Awareness Month, we are also dealing with a pandemic, as you have probably noticed. Since I’m already homebound during my recovery, it doesn’t affect me that much, but of course, I do pay attention to the news. Also, I do have to get groceries from time to time. 

 

So, today I decided to venture to the supermarket with my mother. It was also a good opportunity to see how I’d fare in my car. After gently lowering myself into the driver’s seat, I was able to make the short drive. Since I’m still unable to bend over, we got a cart instead of a wheeled basket, and carefully made our way through the aisles. 

 

The empty shelves were astonishing. Fruits and vegetables aplenty, but no toilet paper, hardly any laundry detergent, almost no cereals or eggs, no pasta, no potato chips. I was able to get most of what I needed, but I was lucky to find a bag of cereal I can eat (due to allergies, I can’t eat most of them, as they contain either nuts or apple), and my mom had to go into another store to buy yoghurt. Crazy. 

 

How are you guys coping? 

An off day

Yesterday I didn’t update this blog, because I really wasn’t feeling that well. My pug had vomited during the night, so I had to struggle out of bed to wake up my mom to help clean it up, since I cannot bend over yet. As a result, I was a more tired than usual. When I got up a few hours later, I decided to remove the bandages from my stitches, but the process left me nauseated, so I was glad to have a rest on the couch once I was dressed. 

 

This may be bordering on TMI, but in light of awareness, I am choosing to share this anyway… I suspect the off feeling I had yesterday was the result of not being able to have a bowel movement since surgery. Even laxatives didn’t help at first. But when they did kick in last night, it was an immense relief, and today I am feeling much better. 

 

My doctor didn’t prescribe pre- or post-op laxatives, but I can definitely recommend them to ease the process. What are your experiences in this regard? 

Slow and steady

Every day offers a little improvement. Today I was able to join my mother for a short walk up and down the block with my pug. It was slow-going, but I count it as a win. One of my pitfalls is wanting to push myself too far too quickly, so I do try to pace myself. After our little outing, I settled back onto the couch with a cup of tea and an episode of Say Yes to the Dress UK. 

 

What are your plans for this weekend? Are you on lockdown? 

Squeaky clean

Today I was finally able to shower again after my surgery. I had showered the morning of my surgery, but wasn’t allowed to shower for two days afterwards, to protect the stitches. To be honest, I was too tired and sore to even think of trying to get into the shower, anyway.  But by last night, I was feeling icky, so I was really looking forward to today. 

 

Because I have a bathtub, I needed some help getting in, so I’m glad my mom is here to help me. Let me tell you, that hot water felt glorious running down my skin. There were still some stains on my skin from the antiseptic used during surgery, which I was able to wash off, leaving me feeling squeaky clean. 

 

It’s the little things you don’t even realize you take for granted, until you need help doing them. 

Sleeping Beauty… not so much

One of the downsides of abdominal surgery – or basically any surgery – is that it’ll affect your sleep for at least the first few days. In my case, I’m unable to sleep in my preferred position. I tend to sleep on my side, so having to sleep on my back now is quite difficult. Every time I’d normally roll over to my other side, I wake up now, resulting in broken nights and a general feeling of exhaustion. This is normal, however, and will get better as my body heals and I can sleep on my side again. For now, I’ll just enjoy afternoon naps. 

Having fun is tricky with chronic illness

There is a handy way of explaining energy levels and how your energy is used in the chronic illness community. It’s called the spoon theory. This article offers a nice explanation of it. With endo, my body is constantly fighting off inflammatory reactions, which cost a lot of energy. As a result, I deal with near chronic fatigue. On a regular day, I am okay in my spoon supply, provided that I don’t have to run any unexpected errands. When faced with a busy social calendar, I have to plan accordingly, and may have to forfeit on an event or invitation, in order to preserve my energy.

 

A change in medication can have a large impact on this. About two years ago, my regular medication was unavailable (there was a country- if not worldwide shortage) so I was temporarily prescribed a different kind. Same active ingredient, same use and dosage, but different additives. I felt horrible. I’ll spare you some of the more intimate side effects I experienced, but what’s relevant to today’s post is that it affected my energy levels in a negative way. My fatigue worsened to the point where I barely made it through a workweek, and spent most of my weekends sleeping to try and replenish my spoons. I would count it a good week if I got a few household chores done, and meeting up with friends or taking my pug to an off-leash area was a challenge. Needless to say, I was relieved when my regular medication became available again and I could stop taking the substitute.

 

For me, and for many others with chronic illness, it’s not just a matter of depleted energy supplies, though. There is also the issue of symptoms flaring up, as well as ever present, if fluctuating, pain levels. When pain has kept me awake most of the night, I start the day with fewer spoons than usual. Tasks I can perform on a regular day would then result in a deficit, so I have to pick and choose what I can and cannot do.

 

It’s even more inconvenient when pain flares up while I’m already out (at work, at a party, with friends, anywhere that is not the comfort of my own apartment). Countless times I’ve had to cut a night out short, or switch to water and painkillers in order not to. My friends are very understanding when it happens, but I can’t help feeling guilty for going home early. Alcohol and fizzy drinks may play a part in this, so I’ve tried to limit my consumption. However, I do enjoy a drink when going out, so I’ve made it a point to try and discover which beverages cause issues and which don’t. For example, fizzy drinks are problematic due to the carbonation as well as the sugars in it, so I opt for Coke Zero and alternate with non-carbonated drinks. Cider poses less of an issue than beer, so when available, I’ll have some cider. I do enjoy a beer or two, though, but more on that in a later post.

 

In conclusion, when a person without health issues goes out to do something fun, they hardly have to think about it. As a woman with a chronic condition which includes pain and fatigue, I have to carefully plan my outings, have contingency plans in place, need to mind my food and drink intake, and have to keep in mind that I might have to cancel at the last minute or cut the outing short.

 

Chronic illness isn’t a walk in the park – even those can be tricky for us.

Grocery shopping before surgery week

These last few days before my surgery are all about preparations. I’m making sure most of my laundry is done, my house is cleaned, and I’ve stocked up on groceries. Originally, I had intended to get the grocery shopping done today, but my bed was much too comfortable, and I had a lie-in instead. I already compiled my grocery list, though, so there is a point to this post. 

 

For starters, I won’t be able to go shopping for a while after my surgery. I’m estimating at least a week before I can venture out, possibly longer to go on my own. So I need to stock up. Also, my mother will be staying with me for the week to help me out, and I need to get some items I normally don’t buy. For example, she likes to have bread for breakfast and lunch, whereas I try to avoid it as much as I can, because it can cause irritation to my bowels, which results in terrible cramps. 

 

After surgery, it may be a day or two before my bowels are back in business again. It’s wise to plan accordingly, and not eat any spicy foods until then, or foods that can sit heavily. Tomorrow or Monday I’ll cook a nice vegetarian tandoori, which I (read: my mother) can heat up, and add some rice. It’s easy and tasty, and can be frozen if need be. 

 

My parents enjoy quite traditional dinners of potatoes, veggies, and meat. Whenever I visit and join them for dinner, my mother will cook a vegetarian burger or similar for me to substitute the meat, but she is not used to cooking without meat. She is open to trying vegetarian foods, though, so I will make sure to stock up on different dishes to prepare. Aside from the aforementioned tandoori, I’ll get some salmon to grill (I don’t eat meat, but do enjoy fish) with steamed cut vegetables and rice. Recently, one of my best friends shared a delicious recipe for a curry with salmon and sweet potatoes. I may send my mother on a grocery run and share it with her. 

 

Do you have any other tips regarding post-op diet? 

Hanging up my heels

As some of you may know, perhaps from previous posts or following me on my other social media, I’ve been doing pole for around 7-8 years. It’s a full body workout which simultaneously builds strength, increases stamina, and improves flexibility. I love it.

 

I started out doing pole sport, which focuses on techniques and is what you’ll see at national and world championships. There’s a plethora of styles, though, and over the years I’ve taken workshops in several. About a year ago I made the switch to exotic, which focuses more on choreography and requires heels. I currently own two pairs of Pleasers; they’re fabulous and oh so comfy!

 

The thing with pole, though, is that it engages your core rigorously, and with endo, that can be an issue. When I’m flaring up or ovulating, I can’t pole. Aside from that, I’ve always had trouble with my abs, particularly my lower abs. My previous surgery wasn’t kind to them, nor my pelvic floor muscles. And thanks to extensive adhesions, my pelvic mobility and flexibility leave much to be desired. I continue to train those muscles and areas, and have workarounds for certain moves, but I’ve come to accept there are certain moves and tricks I’ll probably never be able to do.

With my surgery this coming Tuesday, tonight was my last night in heels and doing pole for a while. We started a new choreography and practiced some techniques which will be used in it. Sometimes it takes me a while to get the hang of them, because certain techniques tend to go against my body’s instincts. It was a very productive class and I enjoyed the choreography. Afterwards, my instructor took some pictures to mark the occasion; I posted a selection below. 

 

It’ll be a while before I’ll be back to pole. First, I have to go through my basic recovery, then I’ll start physical therapy (more on that later) to help my abs and pelvic muscles heal and strengthen. I hope to be able to start pole again in May, but it’ll depend on my body’s recovery. For now, memories will have to suffice.