Your Spoonie Guide to Surviving Fatigue

Your Spoonie Guide to Surviving Fatigue

Living with a chronic illness comes with lots of new lessons and unpleasant surprises. One of the aspects of living with an illness that I truly didn’t understand until my illness got severe, was the debilitating fatigue. I used to think that tiredness and fatigue were simply synonyms but that just isn’t the case.

We all deal with tiredness, but fatigue is a whole different monster. When you’re tired, you can rest and wake up feeling refreshed and more awake; unfortunately fatigue doesn’t work that way. Fatigue gets bone deep and holds on for dear life. With debilitating fatigue you could sleep for 14 hours and wake up still feeling like you haven’t slept for a week. Fatigue doesn’t simply lessen with rest. Fatigue affects all of you (body, mind, and soul) and truth be told, it’s one of the hardest challenges that’s come up with my illness when it got really bad.

Over time though, I’ve learned a few simple tips that can be helpful in dealing with your fatigue. These tips won’t make it disappear but they’ll help you cope with it the best you can, and really that’s all we can ask for. Here’s my top five tips for living the best life you can while living with that oh so rude fatigue.

1. Don’t hate yourself for needing so much sleep: This one is important. We are always hardest on ourselves. When you can’t do things you want to, feel like you need to rest, or have to say ‘no’ to things, we so often feel bad or guilty. No more. Your body is working constantly against itself and for itself, that’s exhausting even just thinking about. When you’re living with a chronic illness your body is working double and triple time; it’s working to keep your body functioning regularly but also on top of that it’s working against your illness. The energy it takes to live with a chronic illness is immensely high, I never knew how much until even the smallest things would leave me exhausted. You are not lazy, you are fighting a battle. You are not lazy for needing rest, you are taking care of yourself and that’s nothing to feel bad about.

2. On the days you need to rest. Do it. Unapologetically: When I need to rest I always feel the need to apologize. I feel guilty and like I’m not doing enough. That has to stop. When you need rest, rest. Don’t feel bad or feel the need to apologize for what your body needs. When you live with a chronic illness you know that needing this rest isn’t fun. This rest isn’t like so many people think. So often I have people telling me “it must be awesome to be able to rest so much and have so much time to just relax and watch tv”. THIS IS NOT THE CASE. The rest required while living with a chronic illness isn’t fun. The rest I need isn’t a fun relaxing day off. It’s not like we just sit and lounge and watch movies all day. With this rest comes incredibly severe pain, debilitating fatigue to the point of not being able to even have the energy to make food to eat, it comes with nausea and dizziness, and a slew of other symptoms that make this rest anything but fun. When you need your rest, rest, unapologetically.

3. On the days you feel well, don’t overdo it: Soooooo often, on the days my symptoms aren’t in crazy overdrive, I feel the need to do everything on my “to-do list”. I always feel like I need to get as much done as I can because truth be told I don’t know when I’ll be able to be productive again. But this is never a good idea. On the days you feel ok, don’t do everything on your to do list because the recovery from overdoing it (you know you will) will take even longer. With a chronic illness, you know there are always cycles. You cycle from the good to the bad and back again. So as hard as it is to remember, don’t overdo it because you feel like you can do everything. Pace yourself even on the days you feel great, because the need for a recovery period will come; and it’s a lot easier to recover from moderate or mild activity than it is from going all out and overdoing it.

4. Stay hydrated and eat well: I know this seems super simple and it is, but if you’re like me, you always forget about it. Face it, on the days you feel like crap and have that insane fatigue and nausea, the last thing you want to do is remember to drink lots of water and eat a healthy meal or snack. But give it a try; even a little healthy snack and remembering to drink even a little water can help. I know this may not save you energy but it does help to give your body the healthy stuff it needs to keep you going. Like I said, your body is basically working double time so it makes sense that it would need that healthy energy with the nutrients your body needs to help your body as much as possible. And besides, when you remember to stay hydrated your skin will thank you for it and it’ll look fabulous.

5. Ask for help when you need it: We’re always our worst enemies, and that includes always being in our own way. So often we feel the need to do everything ourselves and take care of ourselves, and frankly it’s crap. Nobody can do everything alone so don’t ever feel like you should have to. As humans we need connection. We are a community species. We ask for help when we’re little so why in the world is it a sign of weakness as we grow older. ASKING FOR HELP IS NOT A WEAKNESS. Rather, it takes strength to know your limits and know when you need to ask for help. Another really important thing to remember is that you are not being a burden asking for help. You are not a burden when you ask for help; you are human.

When dealing with fatigue it’s so important to remember one main thing, this is not your fault. When living with an illness your body is doing its best to help you function the best you can while still fighting a battle so often other people know nothing about. Know that regardless of how much you can get done in a day, your worth does not change. Your value is not tied up in how much you can get done. Fatigue is an annoying sidekick but it doesn’t make you any less awesome. You’re doing the best you can, and that’s enough. Take care of yourself. Cheers!