“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible?
The sky is the limit then isn’t it, if money and my health were not limitations
1) Charities: If I had a boatload of money then there are some very worthy charities I would be donating to in the migraine and fibromyalgia field for research and support. If I had time and money I would start my own for fibromyalgia so I could direct where the funds go.
2) There is a Fibromyalgia Society in the city near where I live, not the city I live in, but the large city close to me… and if I were not inflicted by so many migraines and had ‘issues with vertigo’ such that most people think it is a rather bad idea I drive anywhere let alone into a big city I would most definitely be more involved with them. They have lectures, support groups and Awareness Day is coming up. I would greatly enjoy being involved in Awareness Day in ‘reality’ as well as online. Now if I had more time, money and energy I would definitely work with them to see if I could arrange for something like that here. Mind you if I was rich I would just get my chauffeur to drive me there… lol
3) If I were just insanely rich I would design a chronic pain treatment center that is multidisciplinary to compliment the medical field. Since I know with chronic migraines when you get to the point where neurologists ‘run out of ideas’ and best case scenarios still leave you with chronic migraines and pain killers are ‘frowned upon’ what you have are people living with a lot of pain that doctors cannot do anything about. Likewise with fibromyalgia the few medications used statistically have little result. So how do we Live with pain or really how do we Live with suffering? The answer is different for every one of us and involves a great deal of work on our part to figure out because no one really gives us that pamphlet. So in my mind’s eye I see a place with all the alternative treatments, physiotherapists, homeopaths, psychologists. As well as someone to help with career management or job placement; someone who can help us adjust our job goals and find new ones when it is needed. As well as ‘hobby therapy’ as in an classes in painting, or music or whatever for those of us that need to relax and get away from the pain. And of course exercise classes designed for all levels… yoga for people with limitations, just groups where people take walks together, water aerobics and more routine exercise. The size of such a place would be immense… but I would likely utilize the local area for some things and then build a building nearby for the others. And you would need someone, a coordinator of some sorts with a medical background who would be available or more than one to help people design a structure of things that would be most beneficial for them to begin with based on their current level of health. It would be the best known treatments to help with chronic pain and the people most qualified to help you with information and your goals all in one place. What a dream. The problem would be cost of course… not to me because I’m rich so I designed it and Bam it exists, but to the person because even if you have drug coverage most people (in Canada) have limited coverage for alternative treatments so you can have the best designed treatment for alternative treatments but it is only going to be minimally covered, if you are working. And that is a huge issue. Many of the treatments I have read about that have been known to help with fibromyalgia… cost money and personally I would only be able to do them for a few months. I have done physiotherapy for example for migraines and it is a great help for when the neck pain is severe and travels to the shoulders… but I can only do it for a short time and then it is out of pocket. A psychologist likewise a very good idea but again mostly out of pocket.
4) I suppose with unlimited time and with no physical limitations I would have this strong desire to promote awareness. I already do but I am really restricted right now. Quite the hermit really. I had this fantasy when I was at work to promote awareness and thought if only I could travel and speak to the high ups and discus invisible disabilities. I thought then they could couch their managers on how to approach someone with a disability. What to say and what not to say. How to motivate. Never to make them feel guilty for being ill. To never say ‘if only you did this you would feel better’ To present them with accommodations and to always contact HR when things become complicated instead of giving them ultimatums. And when I was working with all that frustration over the lack of compromise I thought of starting youtube videos or a podcast about fibromyagia and migraines talking about all the good, the bad and the ugly of living with an invisible disability. A part of me has this desire to go out there and proclaim ‘this is my reality’ to make it less invisible. I stick to writing because pain seems to mess with plan of action or a plan or time.
What’s your one, three, or five year plan for your Health Activism?
I try to avoid things like ‘plans’. My health activism has always been primarily focused on writing. My blog, tumblr, my Facebook page. Once I had that established I moved onto writing articles for Examiner. I would like to begin to write more articles… get a consistent flow of information going and use my platforms to share that information. I would like to broaden my scope and write for other venues as I have in the past. I have also been trying to become more active in various support groups… offering whatever I can. Health permitting I would like to take this further and get more deeply involved with other health activists and other groups for more joint efforts. This sort of plan is what I want to do in my immediate future but it depends on my immediate migraines which are currently quite unmanaged… so just trying to learn how to function during the parts of the day I have. I take great joy in researching, writing and sharing what I learn. I take great joy in interacting with other people who support others and show such compassion.