Do your best to not decondition. I heard this concept as I became more and more unwell, but as my normal level of activity slipped away, and the fatigue, dizziness and pain dominated all situations, I could not see a way of incorporating this. On one hand, I have felt so unwell, that the thought of doing anything physical was out of the question. On the other hand, after many attempts of pushing my way through the pain with the resulting days of severe fatigue, the fear of the wipe out overrode the fear of deconditioning. However, it is so important to consider.
It has been two years since I became reliant on regular resting. In that time, I have lost all fitness, and problems have developed because of the bed rest. For example, I developed Snapping Hip Syndrome and bursitis (ironically, usually a runner's condition) and back pain, due to sitting and lying for such long periods. This then presents more pain that I have to deal with on top of my conditions. Another example is the general problem of being unfit. Even healthy people feel the effects of being unfit. You feel sluggish, tired, simple tasks are more difficult, your poor muscle tone increases the risk of injury and fatigue; the list goes on. Throw that on top of chronic illness, and you have a chaotic blend.
Find something which gives you a sense of contributing or self empowerment.
I currently can not work or study, live independently, drive, socialise when I want to; be a normal adult! This leads to feelings of inadequacy, frustration, dependency and an overall sense of being a burden, unable to help self or others. It is so important to find something which gives you something to wake up for; whether it is a hobby which gives you enjoyment, a new skill to master, a pet to look after, or a blog to write. It may seem impossible, and utterly difficult to maintain, but in the interest of self preservation and self esteem, do it.
Acknowledge your limits and accept the change in your path.
Ask for and accept help.
This can be truly difficult for most people, but your road to recovery and healing hinges on other people helping you. Asking for and letting them help does not make you weak; quite the opposite, really.
Keep going/fighting but don't push yourself to breaking point.
There is a fine line between pushing so hard that you never recover or are constantly making yourself more unwell, and being fearful of the negative results and not trying at all. You must live this life as much as you can, so keep trying everything you want to; keep fighting and working hard. However, know when your body has reached its point, and be proud of your ability to stop.
Be around people who are worth your precious energy.
Being so unwell that your normal life unravels, you definitely get an insight into the people around you. Those who will stick by you through anything, those who will pop into your life when it is convenient, those who were only around because they could benefit from you, and now that they don't, you no longer see them. It is tough, but I am thankful for seeing this. I know who I can rely on. It is easier said than done, but do not let those people who will bring you down with them zap your small amount of energy. Keep the positive people in your life, and do not be too sad when the negatives ones move out of it.
Allow all emotions.
These illnesses are horrible and they take so much away from your life. You are allowed to feel lousy about that. Accept these feelings. Also find the good in the situation too; see the positives and keep smiling. You must keep smiling.
Eat healing foods.
Make educated decisions about what goes into your mouth. Is it helping or hindering your healing process? Is it the best possible choice you can make to feed your body, taking into account pre existing health conditions, budget, availability and access, and what makes you feel good, physically and emotionally?
Taking supplements can be important when you suffer from long term illnesses and food intolerances. Research any recommendations and make your own informed choice. Consult nutritionists and naturopaths, pharmacists and doctors, make sure you (and your wallet) are not being taken for a ride, and use supplements and vitamins in collaboration with a healthy diet.
Try out natural therapies such as acupuncture, massage, naturopathy.
A few years ago, I did not give much thought to acupuncture or naturopathy as treatments for illness, and I saw massage as a treat you indulged in once in a blue moon on holidays. However, I am now a regular client of these therapies, and definitely see the benefits. Explore the options which may work for you, be open minded, and reap the benefits.
Sleep is important.
This is of course imperative to everyone, healthy or otherwise. You would assume that having chronic fatigue issues would mean sleep comes easily and frequently. However, a lot of people with chronic fatigue also have problems with insomnia. Even if you get a decent length of sleep during the night, you will likely find yourself waking feeling unrefreshed. I also find that because I spend the day resting, I sometimes feel resentful when it comes to bedtime that I have to end my unproductive day and sleep. This may sound silly (though I often do feel a little more able to function at night time) but if I feel cheated out of my day because I could not do what I want, I want to stretch it out to its fullest! This then begins a tricky cycle of late nights, so I know I must be careful with this. Ultimately, getting at least eight hours sleep, beginning not too late in the evening, is what you want to aim for. I have written a post previously which looks at sleep and the best way to get it. Read it here.
I hope these points help you a little. I would love to hear your thoughts and experiences, and what you have learned along the way. Feel free to contact me if you have any questions and I will try my best to answer them.