There is no cure for Chronic Fatigue. Research is being done, but they don’t know exactly what it is, let alone how to cure it. I am hoping not for a “cure”, but to build up my strength and resilience to the point where I have enough energy to live a full life. I want to be able to work for at least three days a week. I want to be able to run around the tan (3.8ks). I want to be able to go food shopping by myself and carry the bags of shopping into the apartment. I want to be able to see my friends in the afternoon, and not leave early (or ask them to leave!).
My plan to build up my health is a mix of nurturing, healthy living, common sense and self-discovery. I have seven areas that I want to develop (with some overlap).
Resting seems obvious, but the practice is not as intuitive as most people would assume. Activities such as watching movies/playing computer games/chatting with friends are not at all restful. They still engage the brain and raise the heart-rate. I will be using meditation and naps to rest during the day and although I sleep well generally, I will improve this with basic sleep hygiene techniques. I hope that by improving my rest I will ‘recharge’ faster and will develop a larger pool of energy that I can draw from.
Despite having had Chronic Fatigue Syndrome for ten years, I have not done much more than a cursory investigation; as soon as I found out that there was no ‘cure’ I became incredibly disheartened, went into denial and stayed there for a good five years. I don’t hope to find a cure or even a reason for CFS, but I do hope that by researching it I will understand more about how this is affecting me, and how to live with it and build my body up to become strong to hopefully encounter some of the effects of CFS. I will read and review books about CFS, I will join online communities to find out what others are doing in my situation, I will subscribe to medical journals to find out what is happening to my physically, I will liaise with my doctor to sort out my physical symptoms and start a program to counter the effects.
3; Graded Rest
I have read a lot about the graded exercise programs that are available and I can see that they have helped many people, but statistically it seems that graded exercise programs only help a small minority of people (although it depends on where you are getting your information). I am going to investigate graded exercise further, but in the meantime I am taking the parts of graded exercise that feel right for me, and I’m calling it graded rest. Basically I am going to document and plan my physical activity and resting periods, only increasing the activity once my energy levels have stabilised over a week.
4; Healthy Body
Generally I eat quite well, but I am going to investigate alternative diets and possible food intolerances. As I get stronger and have more energy I will add exercise to this.
5; Mental/social wellness
Isolation and depression are common with any chronic illness and I have struggled with both of these in the past. I would like to become more social, and need to plan for this so that I can meet friends and stay within my energy limits. Part of looking after my mental health will be meditation and speaking to a councillor/psychiatrist that specialises in chronic illness.
Routine is important for most people, and I think ultimately important for any one with chronic fatigue. Routine will be a huge part of my resting process, my ‘graded resting’ program and my documentation process. Slowly I will find routines that work for me, and discard the habits that are not facilitating my recovery. However, there will always be exceptions to routine; friends and family are too important and cannot always fit in with a regimented bedtime and napping schedule. As long as exceptions are planned for and routine is the rule, I hope to achieve a balance between social engagements and a restful routine.
I have been blessed by such wonderful people around me; my friends, family and partner are incredibly understanding and helpful. In addition to these lovely people, I am going to look in a few other areas; online support groups and communities have so much knowledge and help to offer, a chronic illness councillor will assist me with some of the anxiety and denial that I cycle through, and a rehabilitation center or program will give me some guidelines and new ideas to tackle the difficulties of having limited time and resources. Financial support is also important now that I am not working, so I will look into government programs that are available to me.