When you have chronic illness, it often results in extra tasks.
Appointments, recording symptoms, collecting prescriptions, dropping off samples, printing headache diaries, making/answering medical or benefits-related phone calls, requesting repeat prescriptions, doing physio, filling out various forms.
On top of all these extra tasks, we have limited energy and fewer usable hours in a day compared to healthy people.
Yesterday, just getting a blood test and printing out my headache diaries took all my energy for the day. After getting dressed and ready to go to an appointment, and going to said appointment, then going to the library to do some printing ready for an appointment next week my pain was excruciating and I was exhausted. I got home and napped for 6 hours and still felt awful if I dared to be upright.
It’s so hard to fit in everything that needs to be done.
Well actually for my current level of health, it is impossible for me to eat healthily, dress, shower, keep my environment clean and tidy, and manage appointments/physio.
It’s like constantly walking on a tightrope. Making constant sacrifices to manage the most important things. Finding shortcuts for various tasks. Trying to carefully balance, making sure you don’t fall. Planning carefully, hoping nothing extra comes up because if something extra comes up, you will fall.
In 2023 I had 80 medical appointments. Yes, that works out at more than 1 a week and some weeks I would have 3 or 4 appointments. Just the time and energy taken to physically get to appointments, or wait for phone calls and then process the appointments is a lot.
It’s time consuming and exhausting.
I am constantly wondering why I have so many things I want and need to do but can never fit them in energy wise and the amount of medical-related things I need to do definitely doesn’t help with that.
A healthy individual isn’t going to have medical appointments almost every week, or multiple appointments in a week. They don’t have to do physio, collect prescriptions every other week, or print headache diaries on the library computers. They don’t end up wasting an hour on hold to the DWP, or have to go through a 2-hour PIP assessment.
To put it simply, not only do healthy people have more energy. They have more free time to be productive and enjoy life.
The sheer time consumption of chronic illness is something I don’t think healthy people realise. They don’t understand the extra demands or the toll these can take on our body.
Spoonielivingfree 