Apart from obviously having to deal with increased pain from working long hours despite being chronically ill, there are a number of things that eat away at time, much more than with healthy people.

I’m thankful that the times seem to have changed, and this question is asked more from curiosity rather than openly accusing me of being lazy (yes, this has happened in the past).

How much do you sleep?

Most full-time workers sleep around 5-8 hours, right? I sleep 10-13 hours. That’s already 5 hours gone from my day. Why do I sleep so much? There are many reasons:

How many appointments do you have?

I’m not talking about meetings at work (I have those too), but medical appointments. With three physiotherapy appointments each week, a minimum of one specialist/GP appointment each week, and some kind of medical test at least once a month, an awful lot of time is spent in the waiting rooms (and in transit). It’s rare that doctors actually run on time.

I’d estimate I lose at 10 hours in the week with the lowest appointment load and least waiting time. This doesn’t take into account the hospital stays or operation recovery periods (a relatively recent occurrence - but it meant I lost 5-6 weeks in 2015 and 2016).

All of these appointments are during normal working hours, of course.

Diagnostic cycles, when something new has appeared, or something has changed, take a lot more time than just my normal ‘therapy’ appointments. Or trying to set up a new medical network after having moved towns. The combination of both? I’m averaging 2-3 specialist/GP appointments per week plus tests, on top of physio. I hate waiting rooms!

When a day just doesn't work

A perfect storm of flaring symptoms can render me useless. I can’t think straight, or even see straight - double/blurred vision is sadly becoming more common. So, I have to take a day off. I’m extremely lucky, in that I can shift my workload over to other days, or build up some overtime that I can use.

It would be exactly as if you took a day off sick. Except this happens regularly. That’s why flexibility is so important to me.

Everything takes time

Think of when you last had the flu, food poisoning, sprained your ankle, or broke a bone. Everything took longer - showering, dressing, standing up, sitting down, moving around, cooking, eating. Even thinking.

At the moment, all of the tendon sheaths in my hands are inflamed and causing Raynaud’s from the swelling, synovitis is affecting many joints, my bowel is bleeding from endometriosis cells (which are also bleeding into my pelvis), and lymph blockages have swollen my legs so that my knees don’t bend properly blocking blood flow to my feet and toes (more Raynaud’s).

Of course, brushing my teeth, washing my hair, even getting and drinking a cup of tea takes more time than a healthy person. Try getting through one tiny portion of your day without using your hands, elbows, knees and feet - even turning over in bed takes longer.

Exercise has more importance

I know, I know. Everyone is under pressure - they should exercise more, go to the gym or a yoga class and get fit. Note the “should”. It turns into an every-day must when you have an immune disorder that’s affecting your joints, tendons and muscles. That means stretching, strength and cardio, with supporting equipment of course, as full-on weight-bearing will cause more damage. A little at a time, spaced out, every day. This takes time, and is not easily done at the office.

When you can't sit for long

The best position for my lymph system is with legs up. To combat Raynaud’s, I need to be covered in blankets and surrounded by heat packs. My sofa is my office. I have a good lap-desk, and a pillow to support my mouse hand.

If I sit in a normal chair without compression, my hands go white (no blankets or heat packs), my ankles grow to the size of my calves, and my feet turn white and blue. Cyanosis isn’t fun.

Long car or train trips? Dreadful. I jumped in a warm shower after returning from Wiesbaden, and my hands and feet went black before the blood finally and painfully returned.

In summer the swelling is worse, and there’s no air conditioning here in Germany (although, air conditioning is bad for sinusitis).

Work-life balance

You can see this being eroded in healthy people’s lives - 50-60 working hour weeks are quite common. That also means that ‘part time’ is under pressure to shift upwards. 20 hours becomes 30 hours.  Sure, there are people who thrive on lots of work and long hours.  Most don’t have complex and chronic illnesses, and are still in the process of trying to find a diagnosis.

Sick people deserve work-life balance too.

Life shouldn’t just be about work, there should be other activities to give your body and brain a break. Time spent sleeping, waiting, in appointments, and doing mandatory exercises doesn’t count.

Chronically ill people deserve to have fun and take their mind of work. It’s even more important to be able to take their minds off their illness!

If you work part time - why do you do it?

Have other people criticized your choice (or lack of choice)?

Let me know in the comments below!

A quick check-in for healthy habits

I’ve been doing well on the meditation front, although it’s mostly been an evening, bed-time meditation that helps me get to sleep (Pavlov!)

I’ve failed at the daily 2L of water - I’m just not thirsty, and when I force myself to drink more, I feel nauseous. This is not good, because more water means less bowel pain and fewer headaches. Perhaps it will get easier as the weather warms up.