I'd like to welcome Caz from InsvisiblyMe.com with a great post that gives you insight into what people with chronic illnesses struggle with. Make sure you check out her blog and Facebook page and give her some love!
What exhaustion and fatigue are not …
1.Laziness – it’s not simply not “wanting” to do something or not being bothered.
2.A temporary state that you can simply overcome with a little positive thinking or an energy drink.
3.Cured by sleep – being “sleep tired” and being exhausted are not mutually exclusive but they’re not the same thing. Getting some Zzzs does not equal a body that’s got energy.
4.An excuse – It’s a reason, not an excuse, for why we don’t do certain things, why we may bail on a social occasion, why we don’t have “plans” for the weekend or evening.
You can be so incredibly exhausted, yet feel restless. It can be incredibly frustrating, feeling too shattered and your brain too much like cotton candy, where you want to do something useful/fun/productive but simply don’t seem to be able to manage it.
You can spend a whole day not exactly feeling bored, but finding small things to do or just being totally zoned out, without being able to tell people what it is you’ve been up to all day. Your day has been spent doing something, but you can’t put your finger on what and the question of “what have you been up to?” starts to feel almost accusatory and impossible to answer.
What exhaustion and fatigue really are …
1.The opposite of glamorous – Sometimes getting out of bed, getting in the shower and taking care of yourself can be monumental mountains to climb. Some days will be greasy hair, pasty skin, negative moods, bad complexion, pajamas and bags under your eyes big enough to fit a baby panda.
2.A vicious cycle – When you push yourself and ‘work through it’, you often pay for it afterwards. Before I left on sick leave for surgery, I spend years working full time and giving it 110%. My evenings were shot, my weekends non-existent; my body was always on catch-up, forever burnt out from using up what little was there for work.
3.Frustrating – Wanting to do more, to be more, when sometimes it’s simply not manageable. Restless yet exhausted, motivated yet defeated.
4.Isolating – Whether this is from your family, friends, from work or a social life, exhaustion and fatigue can get in the way of plans and even your desire to do the things you would have otherwise wanted to do. If you find others don’t understand or appreciate your reasons for sometimes saying no to going out or to the times you are ‘unsociable’ or need time alone, it can be hurtful and leave you feeling lonely.
5.A spiral of feeling judged – Everyone gets tired, everyone gets exhausted from time to time. But to have it chronically, to deal on a daily basis with an invisible illness or fatigue, is something else, something you perhaps only really understand fully if you’ve experienced it. Suddenly, being unwell and utterly shattered is like a competition, and it can feel as though we are judged and looked upon with scepticism.
Those, like myself, who experience in-your-bones exhaustion, may be good at hiding it from the outside world. Putting on a brave face, saving up the energy they have to paint a picture of wellness when they’re outside their home or posting up statuses and photos on social media. What is portrayed is often not the reality. People create their own story to tell the world.
That said, there can be good times too, moments of enjoyment if we can seek them, minutes or hours or days of joy and appreciation when we are gentle with ourselves and are able to better manage the challenges we face. Choose your battles wisely and use the energy you do have on the meaningful things in life.
Caz - InvisiblyMe