sometimes… #spooniethoughts

photo 3 (4)Approximately 23 out of the 24 hours in a day I attempt to act “normal”–not sick, not in constant pain, not bothered. But at least an hour (split up in minutes throughout the day) I tend to show my pain on my sleeve, mostly because of two reasons- 1) I can’t control it and 2) I don’t really care if outsiders can tell I don’t feel good and choose to judge me. I am still not bothered.

 

For that one hour of the day that I get to stop trying to be the world’s superhero for autoimmune diseases and vasculitis awareness, I get to let my hair down and express some of the spoonie troubles that might be hidden deep within me. Just to reiterate–a lot of these things are totally out of a sick person’s control. Especially whenever they have an invisible illness that nobody can see or feel but them.

 

Sometimes, I space out. A lot of times, actually.

Never fails. I can be in the middle of an important work meeting or telling a joke to a crowd of friends at a happy hour–it always happens, and it’s sooo hard to hide. Why, though? The spurts of pain my body feels is random and extremely unpredictable. I may feel some crazy tingling or ‘buzzing’ in my kneecaps down to my ankles for 5 minutes straight. Then, I’m fine. Then, 15 minutes after that my heart suddenly starts pounding out of my chest and my pulse shoots up, even though my body is at rest. My chest flares up and becomes bright red for a few minutes, and I have a quick hot flash (at the age of 24, yes). I sit there, in the middle of whatever sentence I was speaking or thought I was thinking…and wait. I wait until the pain subsides and I continue, putting aside whatever bodily dysfunction interrupted me.

 

Sometimes, I just need a few minutes to regather myself.

As you can image how emotionally draining dealing with an illness that affects you day in and day out that no one around you is even aware about, this is no exception for me. I try my best to go throughout the day without crying or dwelling, but I can’t help if my brain retracts to a horrible hospital memory for a sec. If I seem kind of out of it mentally, or I all of a sudden start tearing and choking up, give me a minute to recoop. I’ll be fine, I know there’s no use in crying over spilled milk…but every so often, there’s a perfectly fine excuse for crying over that spilled milk. But don’t let anyone make you feel weak or damaged for your emotions.

 

Sometimes, I’m my best friend. Other times, I’m my worst enemy.

Being sick or not, I’ll always be my toughest critic. Living life with something so detrimental as a chronic illness, you learn to rely on yourself in those times that nobody else will understand what you are feeling or thinking. I’ve become closer with myself in the last 2 years and I’m so thankful. I can be in touch with a side of me I never knew existed before hearing my diagnosis in 2011. But on those days when I’m just mad at the world and don’t really have a clear reason as to why…those moments I’m down and don’t what else to do than to feel sorry for myself… those are the times I can’t stand myself. It’s rare, but it happens. I put myself on such a high pedestal that others don’t expect me to live up to but I expect out of myself; if I don’t deliver on my own promises to me, then I’m unhappy. Spoonies battle themselves mentally, constantly. 

 

But ALL of the time, I am grateful. I am strong. I am a walking testimony. I am a survivor. I am beautiful. I am a warrior with a purpose much, much bigger than myself. I am ready for battle–and I will conquer, like I’ve done before.

 

6 Comments

  1. I like your perspectives here. I agree that most of the time I’m “faking it.” Which is a good thing, because sometimes it become believable, even to me. And I totally agree with your last point, we do battles ourselves mentally, constantly.

  2. Just wanted to let you know that I know exactly what you are going through 100% here. I am so, so critical of myself for having these moments of weakness sometimes but I’m trying to be much kinder to myself lately and remind myself that I didn’t choose takayasus, it’s out of my control and really, I’m pretty amazing for dealing with it and actually functioning 23 out of those 24 hours 🙂 and so are you! I can’t tell you how reassuring and wonderful it is to read a blog written by another young woman living with takayasus, I often feel so completely alone with this illness, and like I’m the only person in the world with it, because even most doctors I go to have never heard of it!! Haha

    You’re amazing, and thank you for writing this.

  3. Beautifully written…I love this. I have those days every so often too..some days u can’t be strong..it will inevitably get to you. I have fibromyalgia..being positive is a day 2 day struggle..but we triumph 🙂

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