Chronic Fatigue Syndrome is a very difficult illness to manage, with no cure currently available. It’s an illness revolving around a lack of energy whilst having to also deal with various debilitating symptoms. This article is just a short overview of the areas you need to focus on to manage this illness.
Pacing
By far the most important thing to learn for this illness. It’s becoming more common knowledge, but it’s always worth emphasizing this massively important factor. You have to learn to pace. You have to learn to say no, to do less, to know your limits and to avoid those limits at all costs. You have to do things efficiently and in a way take shortcuts. It’s better to break up your responsibilities into bite sized chunks, rather than tackling them all at once.
Support
People with this illness often think that they don’t need and deserve support, many people with this illness diminish their experience and worry that it won’t be taken seriously, so they don’t ask for anything. Yes this illness isn’t taken seriously, but it doesn’t mean that you shouldn’t fight for support from the medical community, government, charities and friends/family. You need a strategy as with everything, who are you going to ask for support? Who gives you support currently? What support is out there? If it’s a significant other giving you the majority of your support, are you unfairly burdening them to the point where they will eventually struggle? You need to learn to manage your support and tackle it logically. Think of your illness as a war, and support being your supply lines, wars are often won on the supply lines not on how you fight. These are energy intensive tasks and it’s important you can also delegate to other people around you to help with. If you have no one around you willing to help, asking strangers is also possible on forums and asking charities is an option that might yield good results.
Medication
Medication often seems like a double edge sword, you solve one symptom, and get given another. That said, it’s always possible there’s some very beneficial medication you could be using. It’s often difficult depending on the country you live in, because the medical community isn’t a monolith and there’s different opinions and laws across the world in terms of medication availability.
Supplements
Supplements can help or they can be a waste of money. Many supplements can take months of use to take effect, other supplements require complimentary supplements to work or specific situations. It’s a very confusing and difficult to navigate area. To make it worse, sometimes they might help, sometimes they might not, it leaves you confused and unsure. Journaling your trial and error approach is the best bet. You need to create categories to place supplements into, whether they are supposed to work alone is important to acknowledge, whether they cause you severe side effects. Sometimes it might be worth researching why you are getting side effects, and other people don’t, is there something else you could change? Dismissing and trusting are both behaviours you should avoid, “don’t trust, verify”, is a common phrase these days and to add on to that, different brands of supplements have different qualities. There’s also different versions of various supplements that suit different people, for example; different versions of magnesium.
Mental Strength
It’s common to fall into the pit of depression and self loathing when you suffer from this illness. Life only gives back what you yourself give, and having no energy every day means you have little to give, and feel a burden to society. Guilt and self hate are feelings that then arise. Sadness at losing your old life is also a component. Ultimately it’s a form of suffering that can be hard to “battle” through, simply because your energy to battle is taken away from you. The aim is to be smart, to know how much energy have and to never spend that much. You need to know what makes you worse and what makes you better. Your life requires much more discipline and focus than a normal persons and that’s also a massive struggle because discipline also requires energy. This isn’t something you can solve over night, it’s a long term strategy for survival. Unfortunately you can’t think in terms of a cure but in terms of remission and improvement.
Movement
Change your expectation of exercise, before your illness, exercise is something you do to push your self, to improve yourself. Post illness you need to think of exercise as solely for movement and maintenance. You want to avoid stiffness and tension, so you still need to try to move, avoiding movement all together will probably cause you more tiredness in some situations. The most important thing is to know your limits and go nowhere near those limits.
