When working with a chronic illness, one of the most important things that you can do is gain a great understanding of your health. It’s not just a one-off exercise, it is something that you should keep studying as your health conditions and the way you cope with them develop and change.
Understanding your health and exactly how it affects you, needs, to be your top priority. If you fully understand why you are feeling the way you do and can begin to see patterns in your good days and bad days, it will enable you to adapt your work better.
The biggest two challenges felt by members of the Entrepreneurs against the Odds Facebook page were the unpredictability of their illness and the lack of energy. They felt that didn’t know from one day to the next how their health was going to affect them. As a result, they found it almost impossible to plan their week. It also meant that they found it hard to know how much work to accept from clients, because they didn’t want to take on work and then have a couple of bad health days and be unable to complete it, resulting in an unhappy customer. This meant that they often accepted less work than they could have done. When you’re in the middle of a chronic illness, it often feels as though there is no rhyme or reason to how you feel. You can have a few good days and start feeling more confident and then for absolutely no reason at all, you can wake up the next day in pain or with complete exhaustion. Conversely, you can have a flare that lasts for a while making you fearful that that it will never end, so much that you start planning for the fact that you will always feel that way. Then one day, you suddenly feel a bit more like your old self again. For a lot of people with chronic illnesses, while it is not possible to fully understand what is going on and how you are going to feel on particular days, it is possible to get a better understanding of your health so that you can start planning work better and feel a bit more confident when you are accepting client work.
The first thing you can do is become an expert in your conditions. Read everything you can on the subject, talk to your doctors, ask questions, join forums that are dedicated to your illness and speak to people that have experienced what you are experiencing. Knowledge is power and by learning everything there is to know you will be in a much better place. When learning about your conditions in depth, it is easy to get overwhelmed and start seeing all the negative aspects. However, try and keep your objective clear in your mind and your emotions at bay, if at all possible and focus on becoming that expert.
When I was diagnosed with ME, I was pretty much left to get on with it, with very little guidance. I joined the ME society, read articles and spoke to people to try and understand how I could find a way to improve my symptoms. In the end I worked out that the Spoons theory worked for me. This theory explains that when you have a condition like ME you have a certain amount of energy per day, which in this theory is measured in spoons. You can then spend these spoons in whichever way you want. However, once they’re gone there is no energy left and you are unable to do anything else. My doctor explained that you always wanted to leave a little spoon of energy as using all your spoons could have an effect the next day. So, for example, say you have 10 spoons per energy a day. It takes 2 spoons to have a shower and another two spoons to get dressed. 3 spoons to cook and eat dinner and 3 spoons to go for a short walk around the block. That didn’t leave enough spoons to speak to a friend or doing the washing up. If, one day, I wanted to speak to a friend, I would have to forego the walk around the block, to ensure I had enough energy. This method helped me to understand my energy levels and I slowly built up my energy so that I was able to gradually do more.
My ME is much more in control these days. However, I still think about my energy in the same way, so that I am aware of how much I am using and how much I have left. This allows me to plan more. So, for example, I know that if I am going to be going somewhere such as a craft fair or a networking event it is going to use up most of my energy. As a result, the day before and the day after I need to plan to do activities that use as little energy as possible. I also know that if I am busy making orders, say at Christmas, I need to take exceptionally good care of myself. I have to ensure that I get enough sleep, eat nutritious food and drink lots of water. I also need to get plenty of rest and not do any other work during this time. By understanding my energy levels in this way. I can generally avoid crash which could wipe me out for days and can instead keep myself well.
A good way to work out what affects your energy levels is to keep a journal and keep track of what you are doing and how you are feeling. Once you’ve been tracking that for a while, you can look at your journal and spot if there are any patterns. Often patterns arise, it could be a daily pattern where you have low energy in the morning and it increases during the day. Or it could be a weekly pattern where you start the week feeling good and then slowly get worse as the week progresses. Or it might be that you find certain activities cause changes in how you’re feeling. I know that first thing in the morning isn’t good for me, but that by late morning I start to feel a bit better. I also know that my best day for more detailed work is Mondays.
Once you understand how you are feeling in more detail, you can then start planning what work you are doing when depending on how much concentration and focus it needs or whether you need to be particularly creative.
This technique works incredibly week and can increase your productively immensely as you will be adapting the work to suit you. It will also reduce procrastination and make you feel much more in control of your life and work.