I haven’t been able to focus much as of late, p repping our home for guests for this weekend’s celebration of my little one’s fifth birthday. I’ve been cleaning little by little, as much as my body will allow, for nearly two weeks. And yes I am paying for it.
The worth in expending myself for a silly party is that it all needs to get done anyways. I have been trying to get all of this done for nearly two years – since both my grandmother and my mother passed wthin four days of eachother. I’ve been trying to do this since the last few pieces of my energy were taken away and replaced with fibromyalgia’s finishing touches. I’ve been trying to do this since pride had it’s long nails deep in my skin, uphill and against the grain for so long…
And then one day, a friend barged in and made me let her help me. And when she was done, I was thankful. I cried. It was the kindest thing ever, but I dared not ask for the help ever again. Pride would not let me go.
And then yet another friend barged in, but she needed the little I was able to offer as much as I needed all that she could offer. We bartered and traded until I not only found my house chores and projects becoming lighter, but I found that pride had finally let me go. I was finally able to ask for help.
So here I am, in a house that is finally resembling a home. These last few things wouldn’t break anyone else, but they are so hard on me, on my body. I’m in the home stretch. I’ve overdone it several times, but I’m almost there…
And that is the story of fibromyalgia. We are always “almost there” and so we keep going even when it hurts, even when we know we will pay later. We are almost there – but where? We are almost to normal. We are almost to doing it ourselves. So see, even when I think that pride has let me go, I realize that I have not let go of pride.
So I wll call in the last few favors that will fit in before the party, and when I look at this house it wil not only be filled with the memories of my grandmother, the love of my mother, and the bond between my son and I, but it will be filled with the people who love me. All those empty, clean corners will be space holders for the help and love that was always waiting for me to simply let it in.
In the meantime, I’m going to finish my last two chores before finally tending to my aches – unless fibro disagrees. (:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Fibromyalgia
2. I was diagnosed with it in the year: 2004
3. But I had symptoms since: I was 12 years old.
4. The biggest adjustment I’ve had to make is: simply admtting that I can no longer do it all nor do anything how I used to; asking for help.
5. Most people assume: that I am perfectly healthy and capable.
6. The hardest part about mornings are: my neck, feet, and hips. The stiffness and burning is awful – so bad that I sometimes cannot walk correctly. Also simply waking up is often a challenge.
7. My favorite medical TV show is: I could live without them all.
8. A gadget I couldn’t live without is: I have about 5 different back massagers in this house and I am still in pain. I can clearly live without any gadget except my coffee maker and my smart phone.
9. The hardest part about nights are: trying to finish all the things I couldn’t get done that day due to pain or exhaustion, and looking at what I have to accomplish the next day. The physical buzzing of my nerves that I can feel from head to toe – the culmination of all the input throughought my day.
10. Each day I take 4 pills, down from 9.
11. Regarding alternative treatments I: would try more if I could afford them. Massage helps so much but is very, very painful. Also myofascial release is very help yet very painful.
12. If I had to choose between an invisible illness or visible I would choose: a visible one, but I’m sure I’m very ignorant on what it’s like to walk into a room and everyone to know your body is sick.
13. Regarding working and career: Impossible. Or maybe damn near impossible. And I so love my career. I hope I can find a way – is there a way?
14. People would be surprised to know: that I often get lost in very familiar places (my smart phone gps is my savior). I also tend to not remember the events of an entire day or year, and, most embarassingly, I sometimes do not remember people’s names or faces, or ever meeting them at all, even if we have met several times (it is not personal). I often do not know how old I am, what month or year it is, or where I parked my car (I’m not dumb). I used to practically live in the emergency room because of escrutiaing pain and constant infections (I’m not crazy). I often temporarily lose my hearing, am frequently unable to turn doorknobs and therefore open doors, experience tingling or numbness over vast parts of my body, sometimes pass out, my balance comes and goes, and there are multiple places on my body that, if touched with only your index finger, would bring me to my knees. My body is usually silently burning with pain and my muscles are completely stiff. My medications have some pretty serious side effects, but I do not take any narcotics at all because I am allergic to them (I’m not a med-seeker). And… that I can have days where I have nearly no symptoms at all and feel almost normal because that is how fibro is (I’m not a faker). And that I’ve been dealing with all of this since I was 12.
15. The hardest thing to accept about my new reality has been: filing for disability – the act of actually filing, the title of “disabled”, and the fact that everything needs to change. The fact that I must very carefully choose what I put my energy into, since it is so scarce. I need to save most of it for my son and myself, so there isn’t much left for, well, anything. Saying goodbye to my career. Reevaluating my worth.
16. Something I never thought I could do with my illness that I did was: Ha! Everything! I’ve done it all – with consequence, of course. Now let’s see if I can live a simple, calm, and effective life – with help – that makes the most of what I have to offer rather than constantly fighting against it and supplements and assists me where I need it, making an even more amazing life for me and my son. I think I’m on my way!
17. The commercials about my illness: dont really get the point across. They miss how debilitating it is.
18. Something I really miss doing since I was diagnosed is: I have no clue – I’ve been like this since I was 12. My new back issues have caused me to stop doing nearly everything, but with fibro I had finally learned to let go of the stuff I didn’t want in order to make energry available for little bursts of the things I love. If anything, I simply mourn the death of my dream. I want to be that person who wakes up refreshed at 6am and makes crepes for her kid before school and cleans the entire house effortlessly. I really wanted to be her!
19. It was really hard to have to give up: my career. I was horribly depressed because of it. Also, continuing a task until it is done or doing things perfectly, and drawing and writing by hand. Mostly my career, though I do believe everything happens for a reason.
20. A new hobby I have taken up since my diagnosis is: creating digital art on my smartphone that illustrates my fibromyalgia pain.
21. If I could have one day of feeling normal again I would: scoop up my son and run and run and run and roll and let him climb all over my body with his knees and elbows.
22. My illness has taught me: to lean, to ask for help, to bend and not break, patience for myself, how to put myself first so that I can better serve the ones I love the most – my son!
23. Want to know a secret? One thing people say that gets under my skin is: “Oh, I hurt, too!” Or people who tell me that I just need to get out more. Or “Have you tried this supplement?” Or when they see a friend kindly giving me a massage and they jump up and say “Me next!” like it’s fun. It’s not. It hurts, and I need the help. But the number one thing that pisses me off are doctors/people/websites/blogs saying all you need is exercise and a positive attitude. IF EXERCISE AND POSITIVE THINKING CURED FIBROMYALGIA, THERE WOULD BE NO FIBROMYALGIA!!
24. But I love it when people: tell me that they read my blog post or saw my pain art drawings or fibro photography and it made them think. When they tell me that they never knew how much pain I was in and begin to ask me questions or tell me what they learned about fibro! And I love when people send me “gentle hugs” via the internet. 25. My favorite motto, scripture, quote that gets me through tough times is: I honestly don’t have one. I just refocus on caring for myself, remind myself to be kinder to myself, and reflect on whether or not there is a lesson I am supposed to be learning. Simply knowing I have good family and friends who love to help me and that it is ok for me to help myself is really all I need. I tell myself that I’m not like everyone else, so I can’t do what everyone else does. I also remind myself that fibro is a cycle, and if I’m in a lot ofpain right now that means I will be feeling pretty good in the near future.
26. When someone is diagnosed I’d like to tell them: to become their own best advocate. Get educated, get support, do not do it on your own, do not close yourself off, do not feelbad for making the necessary changes and accommodations. Change doctors a million times until you find one who listens. Ask for help often and find other ways to give back to replenish your soul. Find your worth and remind yourself of it often. Don’t worry about what others think of you. Learn to say “no”.
27. Something that has surprised me about living with an illness is: truly how much it has taught me about life and myself. Fibro actually makes me even better at my job working with children who have autism – I understand their sensory issues more than most people and tend to pick up on things others don’t because my nerves are so oversensitive. It has made me more aware of and sensitive to other people’s pain, and it has taught me humility and patience for myself.
28. The nicest thing someone did for me when I wasn’t feeling well was: wash my mountain of disgusting dishes. I told her no, that it was gross and I didn’t want her to do them. She told me that she was doing them, end of story, and that she wanted to help me. I cried. I will never forget that day. She opened the door for me to learn to ask for and accept help. I have another friend who helps me shop and haul things out of the house for me. I cry every time!
29. I’m involved with Invisible Illness Week because: I want to spread awareness.
30. The fact that you read this list makes me feel: wonderful. Thank you for reading!
I knew school was on the horizon; I had been researching schools in our area and making plans with my boss a full year in advance. I knew it was coming, and I was actively helping it to arrive. I was prepared. I really was.
:::rocks in corner repeating “but I was prepared… I really was… I was prepared”:::
Two months before school, no paperwork in the mail. One month before school, no paperwork in the mail. Two weeks bfore school, still no muthafugging paperwork in the mail so i freaked out and called central office.
One address correction later (they were off by ONE digit) and a stop by the actual school’s now open office, because it was now ONE WEEK before school, and all I got were two pieces of paper with very little information.
“I’ve been planning for A YEAR, and I’m just supposed to hand my baby over to these ill-prepared freaks???”
Yep, my mind went there. Having worked in several schools in the past I was absolutely appalled. But mostly, really, I was scared. What if I missed something? What if I didn’t know what to do or where to go? I was suddenly feeling not-so-prepared, and it was all their fault.
In the mean time, excitement for school waxed and waned in the head and heart of my little one. It was a rough summer with many changes that were out of my control, and starting scool was one more thing on his little plate. He decided it had to go.
School orientation night was a disaster – he locked himself in my car. Once in the classroom, everyone fawned over him as his natural outgoing personality hid behind defiance and a bit of sadness.
“Oh, is he shy?” they cooed.
“No, he’s the world’s first K4 drop out.”
My plans had been ruined. But then we worked through it and managed to leave on a happy note…
Over the next few days, my little guy’s anxiety and sadness about school rose and fell like tidal waves. One minute he was excited, the next he was willing to sacrifice his 5th birthday in order to not go to school. I just wanted off this boat we somehow got on. We started on a cruise ship, and somehow we ended up in a ratty life boat with both of us fighting for the only paddle.
The first day of school wasn’t waiting for either boat, though, and we had to just get in there and get it done. My son’s grandparents and auntie showed up on the playground with a brand new build-a-bear, cameras and photo ops galore, and a delicious fruit roll-up for him to devour while waiting for the bell. The pictures are so deceiving!! It looks like everything is going so well!! Ha!
The bell finally rang and, strangely, all the parents lined up with their kids. What. The. Fugg? There I was trying to leave my little guy in line, but all he could see were the backs of the adults in front of him. The backs of the adults who had received that same one of two pieces of paper that I had received that specifically stated you were not supposed to follow your child into school.
This was not in the plan.
So there my child stood… until he no longer was. Suddenly, as his class was walking into the building, he was attached to my leg, crying and pleading “I WANT TO GO HOME WITH YOU!!!!!!!!”
My heart just broke! This wasn’t how it was supposed to be!!! I didn’t sign up for the terror and trauma plan!! I WAS PREPARED!!!!!!!!!
So, I did what any other loving, devoted, and concerned parent would do – I pushed him through the school doors and ran like hell.
All day long I worried he would totally hate my guts, but in the back of my mind I knew that I had dutifully peeked into the hallway about 15 seconds after I shoved him in and there were absolutely NO screaming, crying, and spasming children on the floor. None. He had made it!
The child I picked up that afternoon was initially very happy to see me and proud of his day, but he quickly, before we got out of the school doors, turned into a blubbering puddle.
“THEY BROKE MY BABY!!” I screamed inside… but… upon further investigation… I discovered he was just thirsty, hungry, and very tired.
Each following day the tidal waves got smaller and smaller, and each day I got smarter and smarter. I learned to bring a drink and a snack to pick-up, and that seemed to solve the after school puddle. We did the whole Kissing Hand thing before he got in line. We were on a roll, slowly figuring things out! Hooray! I could see the cruise ship returning in the now not-so-foggy distance.
And then this morning, the Monday of the second week of school, someone crept into my bed 15 minutes before we were to wake up and asked “Am I going to school today?”
I panicked as I slowly answered “Yes…”
“Hooray! I am so excited!!”
Wait, what?? OMG, yes! Score! Score! Wooooooo hooooo we are back baby!!!!!!!!!!!
Everything went so well. We got to the playground and he spent some time playing but then wanted to get in line well before the bell rang. Once the bell rang, he stood up so straight, so proud. My heart swelled and I thought, “This is it!” And then he caught my eye and mouthed four little words with a matching hand gesture:
“You. Can. Leave. Now.”
Seriously?? I just… but… WHAT??!!!!!!!
Yep. He kicked me out. He was so ready and things were going so well that he just didn’t need me anymore.
“He doesn’t need me anymore!!”
Now I know that this isn’t entirely true, and I also specifically remember my mother lamenting about my first day of school and how I just ran off and threw her the dueces, but still. I thought it would be different. I thought… wait… what the hell did I think?
Cruise ship has sunk. Life boat is in the garage. I think we are now on a pontoon, and I think I’m ok with that. I mean I knew he would be in someone else’s care for 7 hours a day, and I was ok with that, and I wanted him to be ok with that… but maybe I wasn’t ready for him to be SO ok with that, nor for me to be so uncertain or unprepared regardless of how much I tried to prepare.
I had always known that some things just aren’t in our control, but I always thought kid stuff was the exception. Everything around him, on him, in him, and about him has been in my control for over 4 years and now I am handing him off to other people and experiences.
So I’m learning to let go of way more than I had prepared to let go of. In return I’m seeing him use all the tools I have knowingly and unknowingly given him over the years, and I can honestly say it feels great to know he really is prepared for anything, even if I feel like I’m not.
Maybe the best plan is to just prepare for what we can and deal with what needs to be dealt with as it comes? Ha! For me, that is an ok motto. For my child? Not so much.
I will work on it, though. I really will.
At least no one can ever change the fact that he is mine…