An open letter for spoonies and the people who love them:
I feel like I’m going insane.
There are electrical impulses I feel all through my head and scalp, in my hands, in my feet, in my pelvis and lower back, and popping up in random places as I move.
Sometimes it’s just a pain, and sometimes I can see past the pain and I know something is coming into contact with my nerves.
It feels like someone is trying to speak to me from beyond a vast void and it turns into voices, and the voices turn into echos until it finally hits me with an electrical impulse that shocks me all at once and then recedes again.
That entire sentence is how I feel about 30 times in a second, but at the moment – at many moments in a day – I can calm down my mind and kind of listen to it while I rest.
It talks to me, although I’m not sure what it’s saying.
It’s comforting, but it’s also the most intense pain my body tells me it can possibly stand.
It freezes me and I find it hard not to lose control of myself.
But I’ve learned how to calm it for now just by listening to it and letting it speak – my most trusted form of medication, no side-effects.
When you have been in constant pain like this for so long, you feel parts of you begin to die off while the rest of you bears the brunt of all existence.
I often wake up in the morning feeling like I got hit by a bus.
And then on the rare mornings I actually feel okay, I want to get so much done that I push myself to the limits and end up collapsing and unable to move by midday.
On the days after my overexertion, I tend to feel worse than ever.
So I started counting my spoons – something I never thought I’d really have to do until maybe when I’m past age 50 and going through menopause.
It’s so important to count spoons.
(Actually, I had never heard of counting spoons or #spoonielife until I came across it on Instagram – I’m not sure yet who to give credit to but I’ll get there somehow through all this brain fog.)
I’m basically processing my morning pain and trying to determine how much I can do in that day – how many spoons I have to spend.
A normal young person will have what feels like countless spoons.
I get between 1 to 10 spoons any given day, and when they get low I start counting micro spoons.
For example, if I wake up with a particular headache, I know I only have about 3-4 spoons that day.
If I have to go to the doctor – between driving there and back, and waiting room time, and whatever they need me to do – I might spend all 4 of those spoons in one morning and need to take a break for the rest of the day.
If I don’t take a break and use more spoons than I really have available, the next day I will have a retrogression – and basically can’t move, speak, or get out of bed without excruciating pain.
I just can’t….. I know you want positive vibes and I totally get that. Today….I just can’t. I was up all night with a migraine from narcotic withdrawal after my period, until I finally just passed out, only to be woken up from leg and foot pain a few hours later and the strong desire to take my prescription again. It hurts to walk, but it hurts to be still, and I can’t sleep though I desperately want to.
So, I count spoons.
And while I’m counting spoons, I’m having to figure out so many things:
- How to resolve my job that I can’t do and apply for a leave.
- How to make money in the meantime.
- How to pay rent.
- How to buy food.
- How to buy cat food.
- How to keep paying my health insurance deductibles.
- How to get my disability insurance to pay out.
- How to steal from my 401K for this hardship.
- How to continue to feed and care for my family when there is nothing left.
- How to ask for help when I am broke, have no food, can’t move, and can’t communicate properly.
- How to accept help.
- How to give thanks, when there are no words.
Becoming disabled is like a full-time job.
And as hard as it is to watch someone seemingly give up on a life, I assure you it’s much harder for me to keep moving forward – but I do it anyway.
The Opposite of Help
Throughout all of this I hear things from spouse, family, friends and doctors that sound (or feel) a lot like this:
- You’re crazy
- You’re faking it
- It’s psychedelic or drug induced
- It’s your diet
- It’s your lack of exercize
- It’s too much social media
- It’s lack of calcium, or magnesium, or D, or all the Bs and a million other minerals
- It’s your thyroid
- It’s too much sugar
- It’s too much soy, grains, gluten, dairy, nuts, nightshades, starch, processed foods, GMOs, meat, animal byproducts, tap water, f*cking air
I had to cancel my good grocery delivery because I was so overdrawn I couldn’t pay for the $14 service.
I’ve already canceled all the extras: Hulu, Netflix, Cable…
The only reason I haven’t canceled Amazon Prime is because it’s my back-up delivery service for when I can’t go out and get food, and we started a business with it that I’m not yet ready to close shop on.
So when you tell me that you’d like me to try your amazing supplement because it cured you of what you have and you think that’s what I have, you’re really ruining my day by reminding me of what I cannot afford to try, and of all the things I’ve wasted money on so far trying to cure this thing – or even find out what it is.
Try deciding between $95 copay for your next exam and a decent meal when you feel like you’re dying – and I have the “good insurance.”
Please stop telling me, “You can do it,” or “Just push through this.”
I’d rather just know you understand and support that I CAN’T always do it, but I’m trying – whether you believe I’m trying hard enough or not.
At the same time, I do not resent you and I want to show you love and compassion because it’s my interactions with you that make the future seem possible for me.
I do a lot of pretending, I know.
I smile as I use an entire spoon talking to you about it.
I think the best help a family member or friend can offer me right now is just support and understanding – even if you don’t support or understand.
I have empathy for your helplessness.
I’ve felt it before.
But there’s nothing more you can do for me right now than just be there while I finish my medical exams and get my insurance claim to do what it’s supposed to do.
I appreciate you more than you know for trying.
I may act like a child now, because I can’t handle the load of an adult thought process, but I’m not a child.
And I don’t want to be treated like one by anyone no matter how helpless I seem.
I just want to feel loved and normal.
Naming the Demons
I think it’s been helpful to have a few names for my “demons” – so far:
- Lupron Side Effects
- Hyperthyroid (possibly Hashimoto’s but the numbers are screwy)
The Fibromyalgia is what seems to really be killing me, but that endometriosis certainly doesn’t want to give up and has been a life-long struggle.
Some days I wish they’d just say I have cancer.
I realize how awful that sounds to people who have cancer or have had loved ones die from cancer. I’m sorry.
But I sit here slowly dying and trying hard not to give up, and it never feels acknowledged because it’s just these big words with nothing to show for it but pain.
At least if it was something terminal I could accept that I’m dying and that there might be peace on the other side of this Hellish nightmare.
I at least wish it was something that would show on CT Scans, MRIs, Ultra Sounds, Biopsies, and Blood Tests – some things show, but nothing that makes sense or that can be treated.
I wish it was at least something 100% curable, or something that people can understand and relate to.
Also, people are a lot more sympathetic if they know you’re dying or have the potential to die, whether you’re feeling pain or not.
If they think you just are in bad pain, they want you to do what they’ve always done and what you used to do all the time: just push through it.
Or they thing you’re exaggerating to get a few extra days (months, years) off.
I promise you it’s not for a lack of effort or desire to stop feeling this way.
(Also, no one would go through what I’ve gone through if they had another option.)
The more I try to push through, the more I die a slow and painful death that never comes.
I don’t think anyone can possibly understand what it’s like to feel a pain so severe, like something in contact with your nerves for months on end, until they’ve been through it.
I’ve been through it before when I had a disc in my back explode and it came into permanent contact with my spinal cord.
I spent a year literally shitting myself, and having to hide it through college classes and internships, because I was partially disconnected from the lower half of my body and didn’t want anyone to think less of me.
I took narcotic pain killers and anti-seizure medications so I could walk on my half-dead legs, and so I didn’t have to have a walker or a wheel chair (vanity).
I was told my condition would be permanent and I was considering getting the latest spoonie accessory (colostomy bag), but I never gave up and eventually didn’t need it.
A year later I got a proper diagnosis and a surgery that fixed that issue, and suddenly life felt so grand.
That was over a decade ago, so I was much younger and stronger then.
This is different. This is worse.
Why You Think I Am Not Working to Find a Solution
I got this rough, attempted wake-up-call from one of my closest family members – one of two people in my support system – who I thought was at least trying to understand what I was going through and help me get through it.
They said they were sick of my doing smiling pictures, trying to show bravery (spending too much time on social media), and wished I would spend my time on finding a cure and stop eating things that aren’t good for me.
I’m fairly certain it was just frustration venting, but it hurt and it took up the rest of any spoons I had left that day – emotion is the hardest to cope with right now.
No, I’m not pregnant. It’s just an Endo flare up. Oh, so many times before I was fooled into hoping, before I found out it wasn’t meant to be for me right now. I got this pic by accident and just thought it’s the closest I’m going to come to one of those fancy baby belly pics. I’m not cheerful about this, but I can’t hate myself over it so please leave your #fatshaming at the door. I’m going to get this monster out of me for good, and I will try to enjoy the journey. #endosisters please share the word that repeated #ablation and #hysterectomy are not the cure. Look for long-term answers in excision surgery. We need to get more doctors and surgeons interested in specializing in it. I can’t wait for mine, but in the meantime I’m just going to be happy looking at me and #mycurves. #size12 #effyourbeautystandards #pajamasaremyuniform #endosister #endometriosis #notpregnant #notfatjustfluffy #mybump #excisionawareness
I go to a doctor or specialist, or for some sort of physical exam, usually about 1-2 times a week.
Every day that I have to do something like that, I can’t really do anything else.
I go to the doctor, I come home, I collapse.
And often the next day I can do nothing because I’ve over exerted myself waiting in waiting rooms for hours the day before.
When I’m not at the doctor, I am gathering medical evidence, talking to insurance companies, HR, lawyers, the bank, creditors, landlords, and anyone else who might call me to remind me I’m not living up to my obligations.
It’s like a full-time job before I even get to sit down and do some research and figure out how I’m going to fix this.
When I finally am able to do some research, I can barely read or see the screen, and every second sentence makes me cry and want to give up.
And when I work too long on “adulting” (trying to navigate through the frustrating brain fog that permanently exists in my world) my mind eventually gives up – my migraines and nerve pain become worse, and I stop being able to speak.
So I spend a lot of time in bed, and I spend a lot of time “socializing” virtually and sharing with my spoonie community online.
This bothers the people who don’t understand that this is all I am capable of and if it weren’t for my sharing on social media I’d be alone and long-since dead.
I can’t navigate this alone and only people who have experienced it can give me the understanding I need to feel capable enough to battle it.
It’s impossible to explain if you haven’t been there.
Please just don’t take that away from me or make me choose between that or you.
As far as food and my health goes…
I pretty much can’t eat unless I’m high as a kite, and even then the food comes right back out.
I’ve lost 25 pounds in a few months without trying, and every day I can’t eat I lose a bit more.
I don’t eat as much junk food as one might think, but I do glorify it with disgusting pictures on Instagram because I want to remember the last time I was able to enjoy that thing – knowing I may not have a chance to ever enjoy it again.
So sue me.
How I Cope
I have learned to do three things every day:
1. Forgive myself
2. Forgive everyone else
3. Find support with people who are going through the same type of thing
There is nothing that I’ve done that dwelling on is going to change what happens going forward.
And there is nothing you can do that will lose my love for you.
Resenting each other is just more pain.
So I work hard to get over the things I shoulda, woulda, coulda, and I try to make the best of it with what I’ve got, while I slowly hold on to the sliver of hope that there is a recovery for things that “they say” have no cure.
And meanwhile, I give you time for yourself and your life needs – please, by all means, enjoy it – and I take solace on social media (my choice is Instagram when I can’t blog) sharing and learning from people who are on or have been on a similar journey.
I will not give up or stop trying.
I’m sharing this for my #spooniegirls, and anyone else who might feel like me. And also for those who have to deal with a spoonie.
I know it’s not easy for everyone, but we will endure and persist to find answers and love life again.
I have so many stories to share from today, but I’m out of spoons. I went “ all out” on me-time this morning (basically just played bingo) and completely forgot my afternoon doctor appointment. By the time I got home after I had a full-on migraine and everywhere hurt. But this morning was so nice my #smileanyway feels pretty easy tonight. I hope everyone had a good day, and if not you still have good days to look forward to, I’m sure of it. #staystrong #makeitcount ❤🌈🌺 #goodnight #cantsleeptho