Being diagnosed with a chronic pain condition at the age of 19 sent me spiraling. Never in a million years would I have ever imagined that I would be knocked down flat, spending more time in bed than out with my friends during my last year as a teen and throughout my early twenties. Due to the days spent fighting debilitating fatigue and pain, it is easy to begin to feel lonely, to begin to feel that nobody understands. However, you are not alone. You might not know it right now but there are other people dealing with chronic conditions as well, they are fighting battles and struggling with loneliness just like you are. Because of the frequency of feeling as if nobody gets it; below is a list of things that I have learned over the years while fighting my invisible illness.
1. The spoon theory is pretty accurate.
For those of you that haven't ever read up on the spoon theory, you should check it out! It makes so much sense and can be used as a good example to explain your limited energy to family and friends.
2. Grace is needed.
Allow yourself to rest! Make goals but be flexible! If you have a long to-do list and you can't finish it all because you are starting to feel bad, keep in mind that the list will still be there tomorrow.
3. Don't allow someone to make you feel bad for missing an event or having to cancel last minute during an unexpected flare day.
Flares can be sudden, they can take over in a matter of hours. Do not let others guilt trip you or make you feel bad just because you cannot attend something. There will be other days. They don't have to deal with your pain, you do. Keep that in mind!
4. LISTEN TO YOUR BODY.
If your body is saying it's exhausted, take a break. If you are out walking with a friend and you need to sit for a minute, sit down. If you need a day off (and it's feasible) take that day off. Relax, take care of yourself and don't forget to breathe.
5. Try to stay active.
In my case, I have been told to only participate in low impact exercises. With that being said, I still remain active. I have low impact routines for the gym and have recently fallen in love with yoga!
6. Learning how to manage your stress is mandatory.
I get it, life gets hectic. Trying to juggle grad school, work, and extra curricular activities leaves me feeling like I am on a Merry-Go-Round that never stops. It is very important that you try to manage your stress as best you can. If you walk around constantly in a panic, you are going to induce a flare and flares suck.
7. Don't ever feel guilty for taking a nap.
Simple enough. If you're tired, take a nap.
8. Stretching helps sometimes, but don't get discouraged on the days that you can't touch your toes.
I have danced for a while and sometimes feel frustrated when I cannot touch my toes that day. This might not apply to all, but flexibility tends to come and go. Just keep gently stretching.
9. Pay attention to your triggers.
As mentioned above, stress can be a trigger. Sickness and lack of sleep are also common triggers. Triggers can very much be individualized as well, so pay attention to avoid what you can to prevent flares.
10. Don't give up on living your life, you are still in charge.
Keep going on adventures and doing what you love, just make sure to take care of yourself; don't push yourself too far.