So it’s been over a month since my last post and I am sorry about the blog static. It feels like my life got so busy and crazy that I just couldn’t keep up. I took my honeymoon and everything else went on the back burner. Vacations are fun but tiring The trip to Las Vegas was awesome and maybe I’ll write about traveling with a SD sometime. Today’s not that day, but I will share some fun photos :).
Honestly I have tried writing a new blog a number of times. I started with an educational one about tasks and then lost interest. Then there was one about trying to handle the photo stuff but I lost interest Then I started one about our vacation but just couldn’t do it and last, I started writing a very angry blog the other night at about 1 am over people using fake sites to register dogs online but nothing stuck. Finally today I realized why. The reason? I am so tired and living with a chronic illness is kicking my butt.
Before I get started I want to say a few things. First, welcome to all my new readers its good to have you hear. Second, I don’t want the new readership to change how my blog goes, so there will still be a lot of me in what is written. This means I might not always come across as happy or patient, sometimes these topics get me fired up and I just can’t stay rational. I also don’t want to lose the personal side of things which I guess means I am about to have a lot of strangers no very personal stories. But I believe in honesty and sometimes people need to hear the truth no mater how ugly and invisible illnesses are not pretty by any means. With that said, let’s get on to the nitty-gritty of chronic illness.
I think most people have had the flu or a cold so I want you guys to think about that time. Remember the body aches and the exhaustion? Feel that nausea in your stomach and that pounding in your head? Think about the hours you lay on the floor in your bathroom or the couch in the living room or even in bed just because that’s about as much as you can do. There is the clammy feeling and the hot and cold flashes. Can you guys really feel what I am talking about? Good, Remember that.
With that feeling in mind, I want to introduce the Spoon Theory. Many of my friends have heard me mention this before, whether it is on my blog or personal Facebook page. The spoon theory was invented to show people what it is like to live with low energy. I already have explained what it feels like but now you get to learn how one has to live with that. The basic idea of the spoon theory is that each spoon symbolizes energy. Now the average healthy person has an unlimited supply of “spoons” some days they have a little less and need a “recharge” day but for the most part it is unlimited. Now for those that live with chronic illness, there is a limited number of “spoons”. A task as simple as getting out of bed may take you 3 spoons. Because of the limited number of spoons, you can’t always do everything you want to. You may, like me, have to “wash your spoons” aka take a nap, in order to do everything you need to in the day. I say things like “my spoons are in the dishwasher” or “I need to barrow Spoons” to say I just can’t do that right now. Here are some Diagrams that might help you understand a little bit.
Now, think about that sick feeling I brought up in the beginning and combine it with your spoons so you know how much energy it really takes to do things. When you are sick, it’s like you have 15 spoons give or take instead of unlimited. Also, some days an activity like brushing your teeth might take 1 spoon but the next day it might take 3 because of your pain level.
Here is the harsh reality, for many with chronic illness, that’s our everyday life. I am not joking; most (like me) feel some variation of that every day for weeks on end with the occasional good day. These last few weeks that has been double for me. I think during the photo spotlight, I somehow stole spoons from the future and now I am feeling the lacking of spoons. It also seems to do that if I go on vacation or other things. Sometimes I force myself to act like I have more spoons than I really do sometimes and then I pay for it later. The best thing about Bella is that having her helps me spread out my spoons more or when I am out, she helps me recharge.
I recently have gotten worse (I think) and it makes it so hard to do anything. I have a huge hodge-podge of illnesses and then the depression just drags your mind down. It has made it so hard to write because I just can’t focus. I was talking to a friend about this, and it is such a struggle because how do you explain pain or fatigue when the only reason sometimes is that your body is just tired of fighting its self? It’s hard to keep jobs and social activities because it’s so common to have to call in sick or cancel plans. I pretty much never leave my house except for work and maybe the occasional (once a week) social event. I am lucky I have the support system I do because not everyone has people who understand.
Something I struggle with is how people expect you to just do everything. When someone says I don’t feel well 4 days in a row it gets tiring to hear, so the ones that are sick tend to put on these masks to hide the pain and sorrow and fatigue. We try to act happy for others and all that ends up doing is making things worse in the end. It’s nice to be able to look at my very patient husband, at 11 in the morning (after getting up at 9) and say I need a nap and he says okay but then we can do something after. I am so, so lucky he is who he is.
But for all the rest of you, Be it family, friends or strangers I have never met, I beg you to be patient with us. When we do get something done, we give it our all. If you have that friend who is always tired or needs a nap or has to have a break or even cancel plans, don’t give up on them. Spoonies are special people and can make the most loyal friends.
I am not writing this to be sad, or want sympathy or attention, I am writing this in hopes that people will understand better and continue to show compassion to those in need. Good luck spoonies and take a nap cause it makes everything better.