I’m writing this post today to support any of you who have had a recent diagnosis of an chronic illness, or have been living with one for some time. I hope it’s useful and supportive.
I have had an auto-immune type of arthritis for almost 20 years now, and I have to say, it has not been easy. The symptoms have ranged from chronic pain to fatigue, but most of the time it felt like I was coming down with the ‘flu.
Among many other challenges like being diagnosed and treated in the first place, was the fact that (fortunately) other people could not tell that I was unwell. This although a blessing in many ways, made it difficult to ask other people from help when I was very run-down or simply did not have the strength to do what others would regard as easy.
During the time when the illness was at its worst, I was working full-time as a teacher. Although I had loved my job, I came to loathe it, as it was just exhausting all of the time. I slept for most of the weekends and basically had no life. When I tried to do anything other than my day job, I got sick. At one point I was chomping 14 tablets a day (and still in pain).
One day I had just had enough and told the head teacher that I was going to end the school year and resign. She arranged for me to have a job out of the classroom and also gave me flexible working hours which meant I could work from home from time to time.
This was the first time I had ever asked for help and I realised that my employers liked me and had a legal obligation to make it possible for me to do my job as well as I could. This new role gave me the mental flexibility and confidence to imagine doing something new.
Years later here I am, self-employed and running my hypnotherapy business. I take on lots of free lance work now, which gives me the flexibility in both my working hours and in what else I do. Planning is of critical importance because living with an illness means I need to plan in rest days. If I have worked 3 days at a stretch, I have a (planned) afternoon off. If I go out in the evening I plan to start my morning later the next day.
One of the hardest things for me is accepting that I need more rest than other people, so I write my days off into my diary weeks in advance. That way I ensure that I have time to be at home. I may well be working, but at least I can take it at my own pace.
My new working arrangements have lots of positives, but obviously there are downsides too. I earn a fraction of what I used to, I don’t have the same benefits that I did before, like sick pay and the same level of pensions contributions. What I do have though, far out weighs these factors – the sense of being free and being able to choose to look after my own health and well-being; being creative with my ideas and time; enjoying my work time, business time and leisure time, means I am actually living life much more to the full.
My Ten Top Tips
1. Work out when your energy is the highest and do things you need to do then. You’ll get more done that way.
2. Plan time for rest. This does not necessarily mean bed-rest, although if that’s what you need, take it.
3. Learn to listen to your body. Pain and fatigue are indicators. Your body is trying to tell you something. Listen and acknowledge this communication.
4. Find some form of exercise that you enjoy. It does not have to be the gym! Walk in the park or dance in your living room- whatever makes you feel good.
5. Talk to other people who have the same issues or look online for support groups. It makes it much easier when you realise you’re not alone.
6. This one is hard: Accept the limitations of your illness. It is an illness, but it does not define you. If you accept it and make peace with it, you will be more able to get over it.
7. Get over it. It’s not the worst thing in the world, you are not the only one and there are many others out there suffering more than you. It took me ages to stop feeling sorry for myself, but when I did, I felt much better.
8. Make goals for yourself – e.g. today I will walk further than yesterday. Even a few extra minutes will build your strength and stamina.
9. Get out and about. Use your leisure time to discover new things- your brain loves stimulation and helps place your attention elsewhere.
10. Get sociable. Hang out with positive fun people and you will feel better about yourself. Laughter is the best medicine.
Get in touch if you are affected by these issues and would like support dealing with them.