When you have a chronic illness, you have to measure out every activity that you undertake in spoons. These activities are not really limited to actual work but it is every little thing you do, be it washing your dishes, putting clothes in a washing machine, dressing up or even doing something as basic such as just getting dressed and or going to the store.
When you are a spoonie, being homebound is not much of a choice. It is a lot of effort to just walk down a street or run to the store to get something. It is pretty difficult for others to understand but being a spoonie who actually cannot physically do a lot of things that every second person does with ease is no mean feat. Following is a list of things that every spoonie would like to tell other people.
1. THEY REST UP TO SEE YOU
When someone is a spoonie and they make plans with you, know that they probably spent the two days before the plans resting up and collecting spoons worth two days to keep up with you when they do meet you. This is something to keep in mind because you need to give them the time to gather up their spoons.
2. THEY NEED RECOVERY AFTER SEEING YOU
Just like they need to gather spoons before the meet you, they need to recharge them after they see you, too, as they spent all their spoons when meeting up with you. Not saying that they would regret socializing, but they need the time to recover. It is really hurtful when someone points out that they do not look really sick after they have actually probably spent their days in bed and have been sick for years.
3. DIAGNOSIS TAKES YEARS AND PEOPLE ASSUME THEY ARE JUST FAKING IT
Diagnosis, when it comes to chronic illnesses, takes years and those years are the toughest as their body is giving up on them constantly and they do not even know why or how to get better. When this happens, many people are often believed to be faking being sick and when you are fighting a seemingly losing battle, nothing feels worse. It might not look as hard, but it is quite the struggle that most of us cannot even begin to understand.
4. FINANCIAL ISSUES
It is not much of a shock that money troubles are a real thing when it is difficult for someone to leave their house. Chronically ill people are always looking for jobs that give them the freedom to either work from home or get things done at hours they are the most comfortable with. The issue lies in the fact that these jobs are, firstly, really rare and secondly, hard to lay one’s hands on, since everyone loves this kind of freedom.
5. THEY ASK FOR HELP ONLY WHEN THEY ARE DESPERATE
It is not like the whole world sucks and refuses to help. The problem lies in the fact that people often say yes to help or offer the same without fully assessing the situation and that leads to the unfortunate non delivery of the help. The point here to remember is that when a spoonie asks for help it is because they are desperate, so try to only offer help when you are certain that you will be able to follow through.
6. HELP IS TRULY AMAZING
When a spoonie does not actually have to go through the process of asking for help and is offered some just because, it is truly the best thing there is. It can the smallest thing ever, like picking up their dry cleaning, but these things make a huge difference!
7. SMALL THINGS EXCITE THEM
To put it mildly, they do not really have much of a life, so when they do manage to get out of bed and take a day to just look around the city, they get excited beyond measure.
8. SAFE SPACE
The world is bigger, worse and scarier for every spoonie out there, so once in a while, they need to let things out to someone who will just listen and reassure them that they are there for them. Being homebound and sick everyday is bound to take a toll on human being’s mental health, so it is truly helpful when someone just hears them out.
9. LONELINESS IS A THING
They get awfully lonely sometimes, because of how busy other people are. A text in return of a phone call does not really cut it sometimes but it is much better than no respond at all.
10. CHECKING UP
It means more than one can imagine to a spoonie when someone even shoots a text at them just asking how they are doing. It does not take a lot of effort to just check up on them once in a while.
11. THEY FEEL INVISIBLE
They often have to go long stretches all alone and on their own, and its pretty easy to feel like they are invisible. So on a concluding note, love the spoonies you know and make them feel the love. They have it harder than you can even imagine.