Taking Action

I have  discovered something wonderful. Not only is it NaBloPoMo (National Blog Posting Month), WEGO, is also running a NHBPM (National Health Blog Posting Month). Thanks to My Brain Leison and Me for posting about it! I’m very excited about this as they have provided some interesting and relevant daily prompts that I will be using every now and again throughout the month.

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Today’s prompt:

Training Wheels
Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).

When I first started feeling ill, way back in 2001 I was ushered from doctor to doctor, trying to get a diagnosis, and then trying to get a treatment. I saw specialists, I got on wait lists for more specialists, I got referrals to obscure practices. But after a year or so it became clear that there was not much help for me in the medical system. My mom joined some support groups, and every now and then new literature would come out about CFS management- which was all good and helpful, but I didn’t want to manage my CFS forever, I wanted it to go away.

I spent a lot of time trying to justify to teachers and friends that I was actually ill, and couldn’t participate in certain activities or finish all of my homework. I also spent a lot of time over the next 5 or 6 years living in a state of denial and distraction. I would live life as normally as I could, until I hit a rough spot. I would then lie in bed for several months, trying to get exceptions at uni and have a few friends visit me so I didn’t fall completely behind on life. I always felt better when the summer months came around, and stocked up on energy drinks to have a somewhat normal summer. I would feel better for 4-8 months and then crash again. Rinse and repeat.

I didn’t like my diagnosis of CFS. Nor did I understand it. But I was told nobody really understood it, and the best thing to do was go on with my normal daily life as best I could. I was told to drink caffeine, to not drink caffeine, to try this or that sleeping pill. A friend got injected with a variety of natural supplements that she could recommend. Pill boxes filled with vitamins and minerals and who knows what seemed to be the norm for CFS sufferers.

It all seemed really unfair. But I was fairly high functioning for someone with CFS, so it seemed easy to simply go alone with life. To allow others to think that there wasn’t really much wrong with me, to let their comments about me being fine slide off my back, to try whatever supplements my doctor or alternative health care provider suggested, and keep moving on. After all, isn’t that what everyone does? When they are stressed or tired or depressed, they keep trudging on.

It wasn’t until 2009 that I realized things needed to change. I was particularly bedridden that winter. It’s a miracle I was able to finish most of my university courses that semester. My social circle had been reduced to my roommates and my boyfriend who would come over to visit. I did not go out. I had lost count of the sleeping pills I had been on and off, but I was already becoming tolerant of whatever I was on at the time. I knew something needed to change. I couldn’t just push on anymore. I ditched the sleeping pills and started doing research. At the recommendation of a friend I did a month long cleanse where I only ate 1200 calories a day. I felt even worse. I found a great website (that sadly no longer exists) that taught me about the holistic approach to curing CFS. I was especially interested in the psychological factors as that is what I had studied, and those factors are usually the most subtle in CFS.

Around this time someone in my family found out about an environmental health clinic that treated patients of CFS and related illnesses near where I was living. I got a referral from my GP and started attending the clinic there. I learned a lot about health, and the way that each part of your body and mind interact with each other to create a full and healthy person. A healthy body and a healthy mind cannot exist if they are missing one part. But most of all, what I learned from the clinic, and my time researching on my own, is that you can’t always wait for someone else to do it for you. We have the best medical system the western world has ever seen. It is now rare for people to die from things like colds and flus. There are also various cancers and diseases that used to cause mysterious deaths that are now very treatable with early detection and the right treatment. Yet the system is still severely lacking. Especially when it comes to invisible illness.  There are perhaps better resources available in eastern medicine for invisible and chronic illnesses, and I really hope we can see more of a partnership between the two systems in the future. But what I think was the most important realization for me, is realizing that only I was in charge of my own health. From that, came the power to work with my body to reach an optimal health for me. Maybe it meant thinking about different career paths, or taking a reduced course load, or skipping out on some social events. Maybe it meant being more aware of what I was eating and putting into my body, and the way I was approaching different situations at work and in my family. Through my own choices, I was able to feel healthier, happier and more energetic than I can ever remember being, but also through my own choices I can go back to being bedridden, overweight, and avoidant.

My illness taught me about personal responsibility.  It taught me that you can only feel sick for so long before you need to take action rather than inaction.

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7 thoughts on “Taking Action

  1. Great description of the phases you go through after diagnosis. I’m still early on in my journey but already I’ve realised that western doctors can’t help me on their own. I’m now trying to combine it with acupuncture and other eastern medicine techniques. Time will tell what will help me but so far the eastern treatments seem to be making the best changes.

  2. That sounds so similar to my own journey – denial, pushing on, resignation. And finally accepting that if there is going to be change, then we need to fight for it and take charge.

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