What/who is a Spoonie?

 

Ok, so you may have clicked on this tab wondering “What on earth is a spoonie?” “Is this girl crazy?” Well … I am, – as my close friends would agree – to some extent lol Life would be boring otherwise! DUH!! We all gotta have a little crazy in us to get through this life.

Anyhow, on a serious note now, a “Spoonie” is a very special word. It may sound like some cutesy word but sadly it isn’t really a “cute” thing when you get to know what it is about. Sure it is a cute sounding word but really it is a way of referring to something that actually, is not so cute at all. A spoonie is someone who is sick… in my case with Fibromyalgia. It refers to anyone who suffers from any sort of disability or illness; whether it be fibro, down-syndrome, lupus or any physical alignment.

You see, the spoon theory was coined by this amazing lady Christine Miserandino. I will give you an overall gist of the spoon theory but it is best to read it from the original author so please check out her blog: But you don’t look sick

So I started typing out the spoon theory attempting to explain it step by step but realised it is much better understood by ready the original post about. However, I will try to summarise it as best as I can.

Christine and her friend were at a restaurant one day when her friend asked her what it was like to have lupus. She knew that this was the moment that she had to explain it otherwise it would be lost on her forever.  She quickly grabbed all of the spoons on the table and even on the other tables as well in the restaurant and handed her friend a bouquet of spoons. Whether it was a bouquet of spoons, forks, knives etc is irrelevant as it just so happened to be the choice for the explanation.

First, she asked her friend to count her spoons as they represented the things she would need to do. She counted 12 spoons at the time and was saddened as she wanted more but quickly realised she wasn’t allowed more. You see, what ever number of “spoons” (also can be thought of as energy) we are given we have to always be aware of them and remember to NEVER drop them as we “spoonies” can never forget our illnesses. We live our lives constantly reminded of it and have to use our spoons (aka energy) as wisely as possible.

Ok, so think about your typical day for a moment. What are some of the things you do from the moment you wake up? You are probably thinking about getting up, getting dressed, eating breakfast and then you are off to work and arrive to the office round about on time… proceed through some meetings have lunch, run a couple of errands, get home, make dinner for you and the husband and/or kids, eat and then it’s off to bed. Close right?

Well you forgot about the small things. The things that, no offence, healthy people take for granted. For 1 thing, you can’t just jump out of bed like that. In my case, most mornings as soon as my eyes open I am instantly reminded of my pain. MORNIN’! WHAM! Sigh.. so now I have to slowly get out of bed, first sitting up and then placing one leg on the ground at a time so that I don’t jolt my body and cause another area to start hurting – particularly my neck. Then, I walk to the bathroom where I would go to wake up properly. This might be TMI but if you are to really understand what I go through at times I have to tell you. Sometimes the motion of going to sit on the toilet is painful in the sense where my muscles haven’t woken up yet so bending can be painful. Then to hunch over the bathroom sink to wash my face I have to watch my posture because any wrong movement so early can throw my neck out and I will be in sever pain for the rest of the day and even a couple of days. Next, is brushing my teeth… The mere motion of holding my hand up for the length of the birthday song to brush my teeth takes – at times – so much energy out of me and I have to pause. Yea, I’ve already lost about 2 spoons. Next is to head down stairs to feed my doggie and let him out to go to the bathroom. But first I need to put on a pair of house clothes if, I didn’t already sleep in them. Sometimes I do as I get cold very easily. If I didn’t that night, then I will have to give up another spoon if I am to bend and step into a pair of pants and pull a shirt over my head… so maybe the robe would be easier, but then there is too much of a possibility of people seeing me through the windows and then I will have to climb the 15 steps again back upstairs… Yea… all that I have to think about and I haven’t even gone down stairs yet to make breakfast and coffee for my husband.

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Ok, so I’ve chosen to put on some proper clothes (4 spoons down) to head down stairs…. Each step is slow and I reach out to the wall  and the railing for balance because my muscles are extremely stiff and I could easily lose my balance and fall; so every step is carefully thought about… I’m going to stop there because I’ve probably started depressing and scaring you and we haven’t even gotten out the door yet much less started breakfast. But you get the gist right? Our “spoons” are vital and can be lost by doing the simplest of things. If I take a shower and wash my hair I sometimes have to pause in the shower and rest my arms and it doesn’t help that – for those of you who do know me – I have really thick hair. Also, think about the fact that I can’t sit at my desk typing for too long, (it has taken me 3 sessions to completely this post) I can’t just whip up dinner for the husband and/or kids, I have to think about what I’m going to do, which is easiest so that I will have enough spoons left over for clean up.

I haven’t even gotten to the types of food I have to think about. That s a whole other post but in a gist there are a lot of different foods that affect someone who has fibromyalgia; to the point where there is even a special diet for fibro. You see, with fibro comes IBS which means during a good day you can still be suffering from serious stomach pains and gripes and having to rush to the bathroom at any moment. This means that I even have to think about the places I go with friends depending on what is going on with me that day… Are their bathrooms there? Are they clean? Do I have wipes/ sanitiser in case there isn’t any TP or soap? If I am to carry those things I would need to carry a bigger bag which would mean an increase in my shoulder pains. So you see, it’s a constant battle. Imagine having to run to a bathroom while out with friends and have to deal with a disgusting germ infested bathroom which you run the risk of getting sick and God help us if and when we get sick! You might as well throw away all the spoons for the week!

For me, the IBS, centralised shoulder and neck pain coupled with anxiety are the worst. There was a period of 4 days where I purposely chose NOT TO eat because dealing with hunger pains was better than having to deal with IBS symptoms. Yea.. it’s THAT bad at times. My anxiety is the worst at night and my mind runs wild which can mean a sleepless night and a pain filled day the next. I am also very sensitive to touch and holding or touching me a certain way can be excruciating painful… oh, I forgot to mention that I was also diagnosed with Mayo-facial pain disorder which relates to what I just said about touch. Sometimes, believe it or not, shaving my legs hurts… 😦 sucks I know.

I will never forget that I have fibro but that doesn’t mean I have given up. Ironically what helps to fight fibro pain is keeping active which of course we all know is the key to life. So I get up every morning and do the best I can and if I have extra spoons that day I make a effort to push harder. Thankfully I have been put on meds that gives me a ton more spoons  each day so I’m able to do a lot more things easily and with less pain than I was able to do without it. I’m able to sleep better at nights which means I have a much more productive day. But that does’t mean I forget about my fibro. The moment I forget to take my nightly meds… my mind races at night and I can’t sleep. If I don’t take them at a certain time then it’s too late because if I take them past 7pm I will wake up groggy and my day is ruined. If I forget to take my probiotics daily and eat the wrong foods I’m down for the count. Also, speaking of foods, being in Jamaica makes it harder to manage my diet because Lordy the cultural food is so damn good!! And yea, like the rest of the world eating healthy is no way cheap which is utter BS. Anyhow.

Thankfully, I have learned that for me I have a little bit of a float where if I skip one day of my meds (maaaybe 2) I’m still ok for the next day but 2 days or more… Oh boy, I’m out and experiencing withdrawal symptoms which are a whole other ball game.

I will always have fibro but my fibro WILL NEVER have me because everyday is a new day and I aim to try my best most days and push a little harder. Sure I get knocked down some days but I rule this body of mine and I would let it take over. Yea, I’m up and down with my routine but I’m coping fine so far and sure… to most I “don’t look sick” and thats ok. This may come as a surprise to you, but I would actually like to keep it that way. I don’t want pity. In fact I hate it; but when I’m down don’t knock me for it. Don’t complain that I’m not going out or ignore me when I’m in pain. Just simply being there chilling at my home is good enough at times. My body needs more rest than the average person… something I’m still struggling to accept funny enough. Chilling at home means that I don’t have to worry about needing extra spoons to drive back safely, late at night when I’m vulnerable. Sometimes driving is excruciatingly painful too but I just gotta deal and I do. I don’t want sympathy… what I want/need is understanding and support on the days where I am knocked down because that goes a long, long way.

So, to those who read this and think “Oh you just need to get off your ass and stop being lazy… you feel all that pain because you are not in shape”. Part of you is right, but don’t be mean about it. Like I said before staying active is key to being pain free with fibro but it’s not as easy for us as it would be for others.

To those who think that I’m “faking it for attention”… that’s just utterly ridiculous and how dare you… but you know what… it’s ok. Life will teach you a lesson so kindly bugger off lol. Lots of love to ya!

To my friends who I don’t see that often anymore because I don’t go out… I hope this post offered some insight as to why sometimes I’d just rather stay home and may not “have a good enough reason”… I understand your frustration and believe me I have mine too because I miss the days where I could just get up and go go go and not think 2x about it.

To my fellow Spoonies, I love you and support you and we will always stick together!

So thats me, Crazy A… a spoonie

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