Manage your chronic illness like an expert.

I’ve been talking a lot about personal care in my past few blogs. By now it’s very obvious that I’m a strong advocate for caring for your own needs first so that you can give of your self to others, whether through work, family, friends or community support. If you burn out or become ill you can’t contribute to the support of anyone else. My journey to this understanding came from my management of Fibromyalgia and a tick disorder, both I’ve had since childhood. I believe Fibromyalgia and ticks to be challenges, that looking back now, I wouldn’t change if a magic pill was offered to me. You see, these challenges are small potatoes as far as chronic and even non chronic illness is concerned. They have forced me to become aware of my health in a way that the majority of Canadians and certainly Americans are not. I haven’t always loved exercise and although I enjoy it now there are days when I have a serious hate on for my run or workout. I know however, from experience and experimentation that the more inactive I am, the more my fibro symptoms flare up. Fifteen years ago I was having difficulty with the physical act of getting out of bed and walking. I also have come to a relationship with food that many people don’t have. It is so easy to fall into a typical North American diet of nutrient pour and neurotoxin (over excites the nervous system) rich food because it’s convenient and designed to build up an addiction. My need to clean up my diet and eat whole natural foods in order to manage my symptoms has put my at low risk for fatal diseases like heart disease, high blood pressure and diabetes. Fibromyalgia has required that I be hyper aware of my stress and energy levels, forcing me to become good at saying no to the very many challenges that my type A personality wants to take on. This in turn has prevented any number of stress related diseased as well. Would I give it up if that were possible? Absolutely not!
Here is the thing. There are so many people with health issues that can be completely controlled through life style changes. I don’t want to come across as preachy here, but it is true! Not all of it is our fault either. The diet industry has been lying to us for years and confusing us with all of the latest fad diets guaranteed to fix what ever ails us. We are being conditioned to believe that health is out of our reach because we need so much help to attain it. Why not just get back to basics and eat real food, move our bodies, rest and play. Yes, it really can be that simple. However, this is not a post about diet and exercise, it’s about health specifically if your have a chronic illness.
When you have a chronic illness the easy trap is to let medication “fix” everything. I want to be clear here, there is a benefit to western medication, it can be absolutely necessary in many, but not all situations. What I am saying is that your responsibility does not end at taking pills. Research and life style changes will go a long way to decreasing the need for a lot of medications which can be toxic to the body. Where illnesses can be fatal, always work with your doctor to do everything you need to do to deal with it, medicine, diet, lifestyle change and activity. Managing illness often requires a more complex plan than simply changing your diet and exercising. Do your research and take responsibility for your health too. This is how I manage my symptoms when my Fibro is flaring more frequently or my normal fibre symptoms are worsening.
Build your team;
You will need to have professionals on your side who will work toward optimal health. Specialists such as pharmacist, neurologists, rheumatologists and cardiologists will give good specialized advice. Nutritionists are absolutely valuable as they provide you with dietary options and personal trainers will help with physical activity. You need a cheerleader, someone to boost your spirits when you get down, hold your hand when you can’t do it alone, celebrate with you when you kick your illnesses ass! Finally, every team needs a leader to ensure every one is working toward a common goal, and that leader has to be you. Your role is to co-ordinate support and ensure full communication. It is absolutely essential that every member of your team is aware of the dietary supplements, medications, what you eat, and other treatments you are using. Many medications don’t play well with certain foods and supplements. Write everything down in a single document that you share with your team.
You need to become the expert in your own health. This is essential as you are the key player in your illness management. If you are not fully educated and invested in your health no amount or doctor intervention will make any difference. If your illness is new this will give you a knowledge base of it so that you can have more control over your wellness and care. Pay attention to natural ways that you can enhance your treatment, complimentary treatment options and the benefits of diet and exercise. For many illnesses, simple lifestyle changes will go a long way to control your symptoms. There is benefit to researching even if you have been managing your chronic illness for years. There is always the possibility of new research and techniques to try, additionally it will refocus your mind set to one of wellness and health. Get the ball rolling, so to speak.
Cross reference advice and ask questions;
As you meet with your team of professionals, start with your family doctor. They are your partner in health. Ask questions, request tests and referrals, bring latest research backing up lifestyle changes you want to make.
Gather all of the info and advice that you receive and look at it with a critical eye. Research medication before taking it, Doctors tend to favour newer medication or medication that they have experience prescribing may be influenced with connections to pharmaceutical companies. However the side effects may not be ones you are willing to put up with. There are usually other options available, so it pays to ask questions and do your own research. I have an amazing doctor, she has the philosophy that the patient, especially one active in maintaining their own health, is the leader in their health care. For years I’ve been bringing her research, making lifestyle changes, requesting specialists and any number of requests where my journey to health is concerned. She has always been open and either supported me in what I was asking or gave me something to think about and more research to do. She suggested medication when I was first diagnosed and supported my refusal. Fibromyalgia while painful and difficult, is not life threatening. So she supported all my efforts to manage it through life changes, and answered my endless stream of questions. Be open with your specialists about what all your doctors have told you and cross reference that knowledge. Sometimes doctors disagree with the best course of treatment, but you need to recognize that they all have a different basis of experience and information. Its up to you to glean out what makes sent for you and your life.
Put it together
Create a treatment plan of your own. I have a plan for maintaining wellness when my symptoms are mild, and a plan for when I am flaring and something needs to change. My plan has served me incredibly well and has given me focus when the pain made focus hard to come by. On a daily basis my plan includes regular exercise, nutritionally dense food, stress management and good sleep. When I flare up I reassess my lifestyle first and foremost. It puts me immediately back in control of a situation that has gotten out of control. For me that feeling of control is vital during a flare up . I modify my exercise regime but I do not skip my workouts. The movement and routine of activity both keep me functional and the endorphins I get from workouts are natural pain relievers. Better than any pill even. I research more, again it gives me a feeling of being in control.
If you’d like to take a look at my Fibro plan Click Here. It will give you an idea of what a plan can look like.
Sometimes a plan works so well that it is easy to be complacent and let key components slide. Set a schedule to assess your plan on a regular basis. You may need to reassess frequently when you are newly diagnosed and less frequently when you have your symptoms under control. Every flare up I have I use as a trigger to reassess and thereby regain control. Look at your diet, activity level, stress levels, latest research or management techniques you haven’t tried yet. I can’t stress enough how important it is for you to become the expert in your own health management.
The reality is when you have a chronic illness you need to be absolutely and unapologetically vigilant about your health. You need to make that vigilance the norm in your family and among your friends and co-workers. You may find yourself at a point where the illness is managed so well that you, yourself will have a hard time believing it exists. The problem is that you can relapse back into the illness so very quickly if you let your lifestyle and illness maintenance slide, often the relapse can be worse than your original symptoms. Maintain these steps even when you are feeling great.
Your health is ultimately your responsibility, It sucks, I know, but we live in a world that does not promote wellness and illness prevention. No one will do more to maintain and promote your wellness than you will, it’s just a fact. Really though, would you want it any other way? So take that initiative and take care of yourself first and foremost. Only then truly live and incredible life enchanted.

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