#ChronicLife as a #ChronicMom

Last week Britt Johnson (@HurtBlogger) decided to go live with chronic disease.  She described her experiment in a blog post and then live tweeted her life for 48 hours with #ChronicLife.

Others joined her and found solidarity among the masses and freedom in the ability to “say it like it is.”

Some started to honestly chronicle what it’s like to parent with chronic disease under #ChronicMom.

I was inspired by their efforts and decided to do some semi-live journaling along the same lines (you’ll see why I chose this approach as opposed to the “live-tweet” approach if you read it!).

I began Friday afternoon and wrapped it up this morning – I feel like I’ve been pretty “open” in my blog and book but I tried to take it to another level in this effort – to really explain what it was like without worrying about what others would think of me or if I was whining, or wanting to seem like I have it “together” when I so clearly don’t! 🙂

This weekend was my daughter’s competition dance showcase for the dance studio.  They are about to go to their first competition of the season in a few weeks so they have a show as a practice run before they’re ready for the judges.  Saturday was competition pictures at the dance studio (I am the photographer) and Sunday was blocking/dress rehearsal all day and the show in the evening at the theater.

3:27pm  Friday, Feb 6:

Starting #chroniclife #chronicmom “live tweet”. Except I’m not doing it “live tweet” for two reasons –
1. I have issues with keeping things to 160 characters 😉
2. I have huge fear of people thinking I’m whining or obnoxious for tweeting so often. I’ve read those that participated in #chroniclife made headway in getting over that fear and I want to try.

Sitting at work – have 30 more minutes until I can leave. I know that I have an insanely demanding weekend ahead of me and know that I will feel significant backlash from it all next week.

A very strong mixture of emotions – so excited to experience the weekend with my daughter (her competition dance showcase weekend) – I love to watch her dance more than just about anything. Yet dreading all that the weekend will entail physically for me.

Status:

Pain – hips aching, behind right knee sharp and radiating pain – sometimes when I move, sometimes when I’m still, knees aching – cannot find a comfortable way to sit for more than a few seconds, hands aren’t bad actually and no headache

I have a cold on top of my chronic issues – stuffy nose and cough. I sound worse than yesterday but actually feel a little better today, as far as that’s concerned.

Brain fog – can’t concentrate for more than a few minutes. Can’t focus on what to do next.

Fatigue – want to lay head down and sleep – sooooo badly.

4:11pm Friday, Feb 6:

Left worked and walked the 2 blocks to my car. The 60 degrees feels glorious after 8 yesterday!

My knees are killing me. Quads ache from the half flight of stairs I climb in the parking garage before getting the elevator. I could walk the ramp to avoid the stairs but with the layout that requires at least 3 times as many steps – I’d rather just do the few stairs.

I always feel weird when people walk past me while I wait for the elevator and they head up the stairs and arrive at the same time (literally just happened while I was typing this). I always feel like I want to explain “I know that I appear to be a healthy young woman that could stand to take the stairs and lose those 15-30 pounds I’d like to lose but what you can’t see is how bad my body aches inside right now and the thought of 4 flights is overwhelming.”

At my car now – painful to get in and out – legs, knees and hips hurt each time.
And speaking of, my right wrist is hurting and my left fingers are aching as I type this on my phone

4:31pm Friday, Feb 6:

During the 10 min drive home the sun was so bright on my dry eyes (Sjogrens!) even with my rx sunglasses that I developed a headache.

My right hip got a cramp and I couldn’t really stretch it while driving.

Walked into the house and was once more depressed at what a mess it is. It hasn’t been clean in weeks – I keep meaning to do it on the weekends when my kids are at their dad’s but then I get to those weekends and I’m so wiped out I just can’t. Kids are busy with dance and baseball and scouts and going to their dads that they don’t really have the time to really help. My husband already does far more than his fair share around the house so I can’t ask him. It won’t happen this weekend with the dance show activities – so that means at least another week of a messy/cluttered/not clean house that’s stressing me out.

I come in and have to change my clothes because my shirt is all sweaty. I basically wear summer shirts all winter because despite the fact that my hands and feet are always cold, I often run low-grade fevers and sweat and can’t stand to have anything more than summer wear on most days. Then I have to change when I get home because the armpits are completely soaked with sweat.

I come downstairs to the living room and realize I’d forgotten to rhinestone the back of one of Shana’s costumes – it only took about 2 minutes to do – it was just one spot – but it will take hours to dry so we can’t pack that part up when we pack her stuff in a few min for the weekend. I meant to do it the last few night but fatigue and this cold meant I did literally nothing…so here I am at the last minute feeling like I’m ALWAYS last minute/late/playing catch up these days.

And now my right hand hurts after rhinestoning.

Laying on the couch “resting” for a few min before beginning to pack up Shana’s stuff and run our errands. Decide to watch master chef junior because all 4 of us are in the room and it’s a show we all enjoy.

4:56pm Friday, Feb 6:

I have to sit up because coughing from the cold seems worse when I lay down.

I’m realizing I’m not going to want to leave the house when I have to do so soon.

Shana came over to snuggle by me on the couch. I change the position of how I’m sitting and get a sharp pain in the front of my right knee. And the cramp in my right hip hurts again.

I just took a deep breath and got light headed.

Eyes are so dry that the outer corner of my left eye – where the upper and lower lids meet – feels so dry and chapped.

5:42pm Friday, Feb 6:

Show over. Got up and went upstairs to put jeans on. We are going to grab a burger because my husband doesn’t feel like cooking.  I can’t cook right now.  He does so much to make up for what I can’t do when I can’t do it that I can’t really argue with him not wanting to even though I so badly don’t want to go anywhere right now.

Kids have so much energy and are running around. Instead of enjoying their energy it makes me cranky because I feel so opposite from that and can’t join in

6:24pm  Friday, Feb 6:

Hamburger joint was packed so we ate at the nearby Mexican restaurant instead. Felt so fatigued couldn’t enjoy the time with the four of us.

Stood up to leave and had such pain under and around my right knee I had trouble walking to the door and to the truck – leg felt like it wasn’t “working right” along with the pain.

Riding back to the house to get stuff to head out for errands and to set up at the dance studio.

6:32pm  Friday, Feb 6:

Stairs into house were excruciating. This is going to be a very long night of setting up photo equip for tomorrow.

6:39pm  Friday, Feb 6:

Carried photo lights to truck. Feel like a limp noodle. Knee is killing me. Arms feel like I just finished a workout. Hard to climb into truck because of leg pain. Knee is hurting while driving!

6:49pm Friday, Feb 6:

Just realized another reason why I’m doing this in this format instead of live tweeting – because I think what is going to be significant is not only how I am during these two days but the aftermath that will last far into next week – I think this format is a better way to get it all down and in one spot rather than live tweeting for that many days.

I really am dreading what I know is coming. Which makes me question why I do thinks like take pics at the dance studio – well because I love it, it’s a way to connect with my daughter and because this disease has taken so many things from me that I at least want this last thing to do. But the pain, fatigue and dread of the aftermath make it so that it’s harder and harder to enjoy this weekend with my daughter!

6:57pm  Friday, Feb 6:

Walking into the store is so painful with my right knee and leg. So glad that at least my goofy daughter can get a smile out of me as she hops through the parking lot – even with how bad I’m feeling right now 🙂

7:18pm  Friday, Feb 6:

Leaving one store headed to another – turning steering wheel – inner right elbow painful.

7:45pm  Friday, Feb 6:

Was surprised with making it through the store and down the center to another and back to the truck fairly well. But as soon I stop moving when back in the truck I want to collapse.

8:25pm  Friday, Feb 6:

Set up photo shoot for tomorrow. Same as before – bad but tolerable while doing it but now arms feel horrible noodle-y, legs feel rubbery and want to close eyes so badly!

9:50pm  Friday, Feb 6:

Got home. Started to gather Shana’s dance stuff to pack while kids got ready to go to my mom and dad’s to spend the night.

It’s all I can do to get done the tasks that I have to do – when Shana asks questions I can’t focus on what’s she’s saying (does she need a heavy coat, can she put shoes on now after her spray tan – is it dry enough?) – I explain that I’m tired, and have a lot to do and need her to just make decisions.

I get them to mom’s, come back, pack the dance stuff, clean Shana’s bunny’s cage, get a bowl of ice cream and sit on my bed watching a show at 9:30.

Sitting here with my feet straight in front of me that I feel like I can’t tighten my quads completely. My legs and arms feel so tired and worn out – like I’ve been doing a heavy workout – when I haven’t done anything more than walk around two stores and around my house for 45 min.

So tired but want to take a min to watch a show – just me and something I want to do – so I stay up an extra 25 min knowing I’ll be just that much more tired tomorrow.

8:22pm Saturday, Feb 7:

Here’s what happened today:

7:09 – wake up to alarm (after 1 snooze) after waking several times during the night due to pain.

7:25 – left to drive Buggy to the vet to drop her off for her teeth cleaning.

7:35 – left to drive to my mom and dad’s to do Shana’s hair for dance pics and then take her there.

7:50 – braided and put her hair into a bun “her dance studios competition style”. Grabbed a glazed donut my dad had picked up at the grocery store that morning.

8:25 – left for the dance studio.

8:40 – unloaded Shana’s dance bag and my camera bag. Went in to have Shana be my model for adjusting the lights for the day.

9:00 – began taking dance pics!

Spent 9 – 5:30 taking pics of the dancers in their costumes.

Sat 90% of the day siting on the ground or on top of a folded tumbling mat- often with elbows on knees as “tripod” for taking the pics.

By about 2 pm my thighs right above my knees were hot and swollen – almost like a bad bug bite reaction. It was in the same place I’d been resting my elbows.

Absolutely exhausted by the end of the day. Broke down lights and backdrop.

Left 6pm and headed to pick up Buggy from the vet.

6:30 – arrived home. Already getting stiff. Loss of mobility in wrists.

Sat with Shana on the couch and flipped through the pics from the day on the laptop.

Got up at 7:30 to fix us grilled cheese. By that point my wrist and ankles have less than 50% mobility. My arms ache so badly that I can’t straighten my arms. Legs hurt so bad I have to go up and down steps one at a time. Back is so stiff I can’t bend at the waist more than about 30 degrees.

In so much pain that I can’t even focus to answer my daughter’s question about something.

My husband told me something and I began to cry and said I hurt so bad right now that I can’t think about anybody else – I can’t spend emotion or concern or worry about anybody right now – it’s an all over body pain that is sucking all my energy and emotions.

I sit down to eat my sandwich and look at the coffee table and see the costume top I have to alter for one of the dancers before the show tomorrow.

I sigh and pick it up. I can barely move my arms. I have to move my arm rather than just bending wrist to work. I make it through it only because I know a young lady is counting on me for her costume tomorrow.

My legs still have hot, swollen knots where is been resting my elbows while taking pics.

It’s now 8:30 and I’m dreading going up the half-flight of stairs. Holding my phone and typing this with my thumbs is very painful in my wrists and even up through my upper arm. I have to get into bed and try to fall asleep with this pain and aching. I know I won’t be able to get comfortable. And the longer it takes me to fall asleep the more I’m going to feel even worse tomorrow – which will be an even longer day than today was.

And then there’s Monday when I have to go to work…holy crap, not sure I’m going to make it

8:52pm Saturday, Feb 7:

8:45 – I ask my daughter to carry my plate to the kitchen. I climb one step at a time up the half flight of stairs.

It is so painful to walk to the bathroom. Lifting my arm to drink the water to swallow my pills brings tears to my eyes.

I have to pull myself up from going to the bathroom with help from the counter.

Brushing my teeth causes pain in my arms so I cut it shorter than usual.

My daughter comes in and says she’s ready to be tucked in at the same time my husband asks me to help him draft an email. I cover my face with my hands and begin to cry tell him I can’t – I just can’t go back out to the kitchen and step over the dog gate and then reverse it to come back to my room. It makes me cry that I can’t do this simple thing. Except I don’t really cry with Sjogrens. I have some tears but then my eyes just burn because they’re trying to make more tears. I can’t even have the release of a good cry without pain and reminder that this disease affects everything.

I slowly follow my daughter to her room across the hall and as she climbs up in her bed I’m fighting back tears.  As I pull her blankets over her – my nose is starting to run and as I sniffle she says “I love you mommy”. I barely get out an “I’m so proud of you and love you so much” before I get too choked up. I kiss her and tell her I can’t wait to watch her dance tomorrow and slowly go back to my room. I pick up my phone and type this – feeling the pain in my hands, wrists, forearms and shoulders.

I just hope I can fall asleep soon.

7:48am Monday, Feb 9:

So what started as an effort to “live journal” my days to show a real glimpse of what’s it’s like for me turned into “not so live”. But I’m still trying to be much more real and honest about it without worrying about the fear of sounding like I’m “whining”.

I thought about journaling several times yesterday when I had a few minutes between taking action shots of the dances during the rehearsal. But I decided I wanted yesterday to be as much about my daughter and the dancers as possible and to focus as less as possible on what was going on with me.

I also thought about journaling when there were moments that were glaring “this is because I have chronic invisible illness that is causing chronic pain and fatigue” moments.  For example, one of the “prop dads” was talking about washing all the cars this weekend (apparently it was gorgeous 60’s and 70’s – a rarity in February in Kansas – but I spent the whole time inside with the beautiful dancers so I guess that’s as good a reason as any to miss the amazing weather!) – I laughed and said I don’t think I’d washed mine since my dad washed it in his driveway about a year ago when I pulled up and he was in the middle of doing their two cars.  The prop dad said “you need to get some free time – there’s probably some blue under that dirt somewhere.”  I know he was joking and I laughed with him – but there’s truth to it.  If I physically wash it that will pain inducing and fatigue worsening.  If I go to the automated car wash it would be when I’m getting gas – which is either first thing in the morning and I’m running late because I slept until the last possible moment and dragged myself out of bed because I’m so un-refreshed from the sleep or it’s when I’m headed home and all I want to do is to get to the couch or bed because I’m at the end of my capability to fight the pain and fatigue.  Either way those extra few minutes of time to get the car washed is weighed against the extra few minutes to rest – and rest wins every time.  But that’s something I would NEVER have understood before I was chronically ill – I would have looked at it as just being lazy…but it’s not.

So on Saturday we got up at 7:30, took showers and headed to the theater. We decided it would take less effort to just go there and braid/bun her hair there than it would to get all the stuff out of the car (we’d left it there after pictures the night before because I was too tired and in pain to unpack it all).

I felt better than the night before for sure. I was still aching and slower than normal and definitely tired – but no where near the nightmare pain I was in the night before.

I’d slept moderately ok. I woke a few times because of the pain, but I think the shear exhaustion mostly took over. However, as with probably 90% of the time, I wake feeling fatigued still rather than refreshed and ready to go.

So we head there, carry the dream duffel (a large suitcase designed for dancers with multiple costumes) up the narrow long staircase to her dressing room and begin to do her hair.

I get the front braid part done and begin to pull the rest back to form the bun. I look at her in the mirror and say “the donut.” The night before we’d taken the “donut” (the part that makes all the girls’ buns the same shape) out at home and tossed it at my husband as he always thinks it’s funny to squeeze my daughter’s bun. After that I don’t remember at all what happened to it. But I know it didn’t make it to the theater with us.

I told her I’d be back – we only live 10 min from the theater – and left her playing on her iPad in the dressing room with the other dancers and moms.

I drive home, leave the car running in the drive and head in thinking it’ll be a quick grab.

Except I can’t find it. I look everywhere and can’t see it. My brain was in such a pain and exhaustion fog the night before that other than remembering tossing it at my husband I don’t remember anything. All I remember is the pain.

I think about texting my husband but then remember that my phone is in the car out front and I don’t feel like making another round trip up the stairs. I figure I’ll just stop by the dollar general a mile away and grab another one.

I pull into the parking lot and go to reach for my purse and realize it’s back at the theater in the dressing room.

I said a few expletives and thought with dread that I was going to have go back to the theater and then leave again.  My brain doesn’t work right with this stupid disease.  I’ve posted about my brain fog before – I constantly feel like I can’t get my life together – I can’t remember things, I do really stupid things like leaving the car on while filling up with gas, I’m just a total mess.  I never used to be this way.

Then I remembered I did have my phone and Walgreens takes Apple Pay – my phone just saved the day. I drive the mile to Walgreens, get the bun enhancer, pay with my phone and get back to the theater.  I finish her hair before the first rehearsal runs through with music (that’s when I take the action pics because I videotape the actual show at night).

All day I sit with aches and soreness and fatigue in the dark theater seats taking pics of the girls. I can rest my elbow on the arm rest rather than my knees like the day before and I’m so grateful to not be further aggregating that sore spot.

We all gather down in the basement for lunch – everyone with their sandwiches from a variety of places around town. There’s so much excitement in the air – everyone is ready to get to show time – they’ve been working hard for months for this. I can pick up on their energy for a brief time and smile and laugh – but when I’m back to my photo-taking spot after I’m back to tired and noticing how bad I ache when I walk and sit and stand and hold the camera.

My fingers ache from holding the camera and taking pics – over 4000 shots taking of the 40+ dances. Just thinking about culling and editing the pics makes me tired – I’ll need to find time which means taking out what little relaxation time I have during the week to work on them and the photo shoot shots from the day before.

So, again, you’re probably wondering why I do this if it causes this much pain and fatigue – because I love it. I love the girls. I love photographing dance. It’s my way to connect and contribute with my daughter and her dance studio. And because this disease has taken away my ability to do so many of the things that I love and want to do, that I want to keep doing this – for myself, my daughter, and all the other dancers and moms.

After rehearsals I head up to do Shana’s make-up for the show and help her get into her first outfit. She’s getting rather self-sufficient at changing between dances now, and the other mom’s are wonderful at helping her pin things she can’t reach and put her headpieces in while I’m out photographing or video taping – so grateful for their help!

I wait for my family to arrive to take their seats and then head up to the balcony to get ready to video tape the show.

I love watching her dance. She loves it. My husband says her face lights up – you just know she’s doing exactly what she wants to do most!

The show is wonderful – we pack it all up – throw it all in the dream duffel and I know that I’ll have to find time to get it out of the trunk and clean it out – take out the snacks and arrange all her things in an organized way for her first competition in three weeks. The thought of the energy that takes is daunting at this point in the night after the last two days.

We head out to meet all our family – my parents, my husband, his mom and her husband, Shana’s dad, his girlfriend and her daughter, my son, my sister-in-law and her family (her daughter also dances at the studio). The all are so proud of our girl and how beautiful she is on stage – everyone talking about which of her four dances was their favorite and taking turns taking pictures with her.

Finally it’s time to head home – 9pm on a Sunday.

She’ll need a shower.

She announces to me in the car that she has 4 chapters of her book for guided reading as homework – why could the child have not mentioned that earlier in the weekend? Lord knows she’s had downtime in the last two days between her own dances that she could have read it.

By 10:30 I go in to see if she’s almost done and realize I should clean her bunny’s cage for her since it’s already an hour past bedtime and she’s tired from her long weekend. Yet another time of getting up and down off the floor. Every muscle aches. Everything is sore and tight and painful.

We finally get her tucked in with many “I’m so proud of you”, kisses and hugs and I lay down myself.

The aches and pains kept me awake. I couldn’t fall asleep and then I kept waking up throughout the night.  This is called “painsomnia” and when coupled with pervasive fatigue it’s just plain cruel.  It was a miserable night of sleep. I think Saturday night I’d been in so much pain that my brain shut my body down – I slept as a coping mechanism. Sunday night I was pain for sure, but not nearly as bad as Saturday – my brain didn’t shut everything down and instead I just got to be there in pain, awake, knowing the alarm would go off in the morning for work.

I do get up for work this morning – legs so stiff it’s difficult to sit to go to the bathroom. Back so stiff it’s hard to turn and wipe. So tired that I just pull my hair back in a ponytail, put on my most casual “work” clothes (the ones I can get away with tennis shoes with it) and head in (after getting my son up for intramural basketball games before school and dropping him off on my way to work).

I got to work and the network is down – no internet, email, voicemail, network drives, nothing. So I typed this on my phone – good use of my “down time”.

This weekend has shown me how much I can’t deal with when in pain – I couldn’t answer questions, I couldn’t remember to do things or remember what I’d done (couldn’t find the donut), can’t think about anything but the immediate – what I’m doing right that second – and the necessary.

It was the first time that I really broke down in front of my daughter. My husband has seen it a couple of times, but this was the first time that I was in so much pain in front of her that she saw exactly what I looked like when I could barely do the stairs, when tucking her in caused me to to be choked up and cry while kissing her goodnight.

I hide so much if it from so many people – I put on the happy face and pretend to be normal – after all, I look normal. But I’m not – I’m in pain and it’s awful.

I have a full day of work today, work in the morning tomorrow and my neuropsych eval in the afternoon to attempt to objectively determine the effect of my “brain fog” followed by an evening at the dance studio. Work Wednesday, work and dance studio Thursday and work Friday. The kids are with their dad this evening, Wednesday evening and Friday afternoon – Sunday evening this week. Usually I’d love that – as it would give me some time to do absolutely nothing and recoup after this weekend – except I have all those pictures to edit and get up in an online gallery and the video to edit and get ready for the dancers to watch to critique themselves before their first competition.

And, my house is still the same disaster it was on Friday when I talked about the stress I feel every time I walk into it because I absolutely hate it looking like that but I do not have the time, energy, or low enough pain level to do anything about it.