Another favorite thing poisoned by chronic illness
I used to love going to bed at night.
Now… I’m realizing – for quite a while – I dread it; it makes me anxious. Because I’m so terrified of waking up feeling like crap the next day. It just hurts my soul and destroys my joy.
I look back on my day in which I’ve accomplished nothing – often not even getting out of PJs.
To manage sleep, I must always address the pain I’m in at present: heating pad in the right spot, pillows propping the best ways, and ice in place on my head.
I dread the pain and exhaustion I will wake up with. The uncertainty – will tomorrow be like today – pain, disappointment, dragging my butt around trying to get SOMETHING done – maybe put away some clothes or straightening a room, run an errand to UPS, work my biz … in between flopping around like a dead fish in my bed for essential rest and recovery.
My RA has been flaring – a couple of days ago, I tried to pick up my mug of coffee, and my hand failed… coffee flooded everywhere. And it made me so sad. This was a new and awful experience for me. And I was mentally broken cleaning up the disaster of a “hand fail.” And, of course, since my new Neuro switch, I’m 2 weeks late on my #BotoxforChronicMigraine so – yeah, my migraine has been a bastard.
I work hard on granting myself and my body GRACE as I lie here, trying to fall asleep: my hands and feet ache, my head hurts, and my lower back pain and sciatica are screaming. Every muscle and joint is impaired.
I know oblivion will eventually come. And I’ll sleep. And I’ll dream. But then I’ll open my eyes up in the late morning to another day of chronic illness and pain. And I’m anxious about how hard it will be.
Another joy chronic illness has poisoned.
A small prayer: may we all have a good day tomorrow. 🙏🏼
Good night and happy dreams. Sleep tight.
A story that moves you
2 years ago Mike Dalhauser started a Facebook Group for our community. It’s called 12:31. It is purely for the purpose of neighbor helping neighbor and it has thrived!
Today, his birthday, he penned a post that stopped me in my tracks. I don’t know Mike personally, but I always assumed he mist be well-off to provide, tithe and give so much… but reality is far from my impression. How can someone in such need, give everything?
“Today I find myself thinking again about a 7th grade girl I met last week. And in thinking of her, I find myself again thinking about a post that I’ve been struggling with for some time. It’s a story I’ve been unable/ unsure how to tell, but ultimately, it’s a story of hope.
“I feel like my entire life has been a struggle.
“I’ve struggled to find my way. Always hopping from one thing to another be it interests or work. Content yet never satisfied. Always seeking more without ever knowing what I’m seeking (does that makes sense?). Never really sure what my place was in this world.
“I’ve struggled with severe depression, anxiety, self-image and self-worth since I was young. Never feeling good enough… always just kind of meh. I can’t count how many times I’ve wanted to end my life. To the point that I feel like it is the one constant I have carried with me through my life. Always unsure what my purpose was or if I even had one.
“We’ve struggled financially for more years than I can count. Honestly…I think probably since the day we were married. Very early in our marriage, we suffered through a debilitating back injury that almost cost us our business, our home, and our marriage. And it’s been a struggle to just make ends meet ever since, let alone to try to get ahead.
“How many of you watch The Chosen? Ang and I went to the theater to watch Episodes 1 & 2 of Season 3. There was a scene with Little James in Episode 2 that really spoke to me. So much so, I think I’ve watched it about 30 times since. In The Chosen, Little James is portrayed as having a condition that causes him to walk with a limp (much like the actors own real life struggle with scoliosis). Jesus had just met with his Apostles and told them he was sending them out, two by two, to heal the sick and lame. And Little James, who has suffered from this his entire life, now has the ability to heal others, even though he has not been healed himself; and he asks Jesus why he has not healed him yet. And even though he has been entrusted with this amazing gift, he still struggles with his own demons of self-worth and self-doubt. I’ve attached the video below.
“The truth is, there have been so many days/weeks I’ve felt like Little James. Most recently when we were struggling to find a new place to live. When I started 12:31, I was in a pretty bad place. Probably one of the worst times of my life.
“Personally, my depression was at an all-time high and my self-worth was at an all-time low. There were weeks (not days…weeks) that I couldn’t even get out of bed. My marriage was holding on by thread, I couldn’t keep a schedule or honor my commitments at work, and on top of that, my dad had just passed a few months earlier. I was spiraling downhill at a high rate of speed.
“Financially, it was also one of the worst periods of time we had seen. And that’s saying a lot as I feel like our season of struggle lasted about 13 years. That year we couldn’t afford to have our boys play sports, we couldn’t afford back-to-school clothes or school supplies that year, we couldn’t afford Christmas presents, and we were months behind on our rent and utilities. We were in a bad place.
“I was reading something recently from Jill Briscoe (Founder of Just Between Us Magazine and Ministry) and she said “You are where you are by no instance of chance. Because my friends, it is written. Every hardship, every victory, every shortcoming and every setup are all with purpose. He placed you exactly where you are; at this exact time in history, in this exact location, with these exact beliefs, around these exact people, with that exact urge in your heart for His purpose. Let that comfort you today when all hell is breaking loose, when you don’t feel equipped, when everything seems lost. He did this. Not you, He brought you to this point for His plan not your own. And he has absolutely NO intention of leaving you. There is a point to everything you’re feeling, to every experience, to every growing pain.”
“Sitting at the bottom of the lowest point in my life, alone, and in the midst of my own struggles, I felt the urge to start 12:31. 1 Peter 5:10 says “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.”
“I remember telling Ang one night, “Don’t be mad but, I feel like I need to start this FB group”. You see, she hated (still does) FB and I thought for sure she would be pissed at the thought of me spending even more time on it. Much to my surprise, she liked the idea! All was good.
“But that first year was anything but good.
“Ang (as I think most wives would) grew increasingly frustrated, angry, and resentful. You see, while we were paying for sports registrations for other kids, we couldn’t afford to have our own play. We had an apartment and garage full of Christmas presents for other families and we were unsure if we would be able to get our own kids anything. We were paying for other people’s rent and utility bills while there were many times that our own power would get shut off. For her, it was a question of how I could so easily provide for other families while failing to provide for my own. For me it was a question of “how could I not?” Even though I couldn’t afford to do those things, or pay for those things for my own family, I had the means, and the ability, to be able to make sure that other families and other kids, didn’t have to experience or go through the same things that we were. And because we were going through it ourselves, and had gone through it for so long, I knew what it was like. I knew what it felt like to see the disappointment on my kids’ faces, on my wife’s face. I knew what it was like to feel like you were failing as a father and as a husband. But I was gifted this incredible opportunity to able to turn my own weaknesses and my own struggles into strengths and victories for others. For me it was a question of “how could I not?”
“A year later, I had a similar conversation with Ang. And I was more nervous this time. In fact, I put off having the conversation with her for weeks. This time I said “I just feel like this is what I am called to do. What would you think if I did this full time”. Much to my surprise, there was no hesitation. “Absolutely” she said.
“Over the course of that year, I saw 12:31 change her heart and her mind. About me, about God, and about our circumstances. And over the course of that year, I saw 12:31 change my heart and my mind about myself, about God, and about our circumstances.
“I heard someone say once that “God doesn’t call the equipped, but He equips the called.” Though our season of struggle was a lot longer than we hoped it would be, I believe now that it gave me the experiences, understanding, compassion, and empathy needed to help others who are going through the same things. “From the ashes, beauty will rise.” -Steven Curtis Chapman
“After hearing about my own story, and all the struggles we have been through, that 7th grade girl raised her hand, in a room full of her peers, and thanked me for sharing my own story because her and her single mom had been through much of the same. How there were many weeks they didn’t know what they would eat, and many times that their power or heat got shut off because they couldn’t pay the bill. I told them that day that regardless of their circumstances, every single one of them in that room has something to offer the world. It just took me 42 years to realize it myself.
“Romans 5: 3-5 “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”
Emily, I adore you!
Your story is our story!
#EmilysMigraineMinutes #ChronicMigraine #Migraine #MigraineAwareness
Moms of Littles
Moms of Littles, you’re so busy right now: cheer practice, birthdays, sports, school projects, kinder orientation, holidays, playdates, bus schedules, quick dinners… to say nothing of your jobs and careers outside the home.
You look at older moms with wrinkles and kids in college, and you think: ‘that is soooo far off!’ I’ll think about that another day. As I did once… a decade ago. I remember vaguely… something about older children: “bigger kids, bigger problems,” sadness about kids going off to college, and more.
But at that time, I was closer to college myself than having a college-aged child! And I was so busy! My mother tells the story over and again: “I was so busy with children that the end of the day would come and I realized I hadn’t eaten anything!” Omg, I’ve heard that tired and dumb story SO many times.🙄 Well I had lots of children myself, and somehow whether it was the leftovers off their plates or granola bars in my purse, I never forgot to eat!🙄 But maybe mommy-ing in the 1970s was different than the 2000s?
The years have flown. I have more grays in my head and annoying, determined creases all around and under my eyes. Weight seems permanently affixed to my abdomen and I’ve removed my uterus as it was falling out of my body after many pregnancies and 40+ years.
The days are long, but the years are short.Gretchen Rubin
My babies are all adults. They barely need us. They are studying for careers or working and married, starting families of their own. I post simple Facebook posts about their comings and goings and how much it means to this old mum.
And I pray they are okay. My prayers are general: for their safety, happiness, self esteem, good life choices. That they find life connections of love and support. That they know their parents and family is always a harbor of safety in a tumultuous sea of Life. Here is safety, and unconditional Love. They do not have to be anyone but themselves in this Home.
Moms of Littles, you will find yourself in this older mom role someday… will you remember someone, somewhere mentioning what it was like. 🥰
#happynewyear #momsofmany #mommytales
Today I cried…
… because of pain.
Chronic illness and pain is stupid horrible. I don’t know why my RA is flaring… is it the change of weather? The tiny joints all through my hands and feet are screaming. My head has a frightful constant ache.
Today is a day to rip off the calendar, crumbled up and throw away. Ice on my head and heat on the back. I don’t have enough pain medications. Maybe I could take an epsom bath and just go to sleep…
This is what I normally look like…
I don’t want to do anything exciting like walk, shop or take a trip. With chronic illness, I just want to be able to clean my house, make a meal, feed my dogs and make my bed.
But I can’t get out of bed to make it. Bonnie licks the salty tears off my face.
Blame. Broken. Burden. Blight.
We’ve had 2 marriage counseling visits and what’s weird? The counselor actually acknowledged my words. It was a bit of a shock (and not real obvious or anything but she asked if he could hear how his comment sounded like an attack on me). This history with my Narc Mama really does make me assume everything IS my fault, I’m to blame, always. It’s my function.
It’s like… I’ve got to have that reality check in order to perceive truth.
He will just NOT stop with the money thing. The truth is this situation WILL only be a COUPLE OF YEARS! I mean, isn’t EVERYONE carrying CC debt right now?? Christ. The inflation is a wreck and we have THREE in college. But one will graduate 5/2023 or 12/2023. That WILL make a difference! And if it doesn’t? I’ll get a job! We can make it work. How do I know? Because we always have! We have over 30 years of trials and tribulations, heartbreak and joy, and TOUGH TOUGH times. Times MUCH darker than this! And we have never not persevered. But this is a time like we’ve never experienced; it doesn’t matter. It doesn’t matter. Have a shred of FAITH and LIVE and LOVE in this sacred MOMENT we are gifted. God is so good; God is so good. And he always provides. Always. And that stress? That fear? That internal turmoil aging him – making the bags under his eyes black, and giving him a haunted, ill-favored, ghastly countenance? That fear eats him alive while God holds out his hand for him, to comfort him, to trust him. But Marc won’t take it; he’ll feast on the empty shadows created on the wall of the cave, (as in the Allegory of Plato’s Cave) he won’t turn around to see the truth in the Sun.
He is determined to drive me to kill myself. Because let’s face it, I am absolutely worth more dead than alive. And won’t that be great? He’ll have his True Freedom: no debt. The lack of wife and life partner is easily filled with a more productive female – there are hundreds, who are healthy and capable of income and productivity. I get excited just thinking of his prospects! He will do just great! And I will watch my children’s lives from behind the Veil – actually, that’s not all that different from my ability and involvement at present! I will visit them in their dreams. I will whisper to them my love. I will be a tiny part of their children’s silliness, a giggle, a facial expression. Nothing will keep me from them. Marc, as it turns out … he will move on and be a-ok. My children will be where my heart lingers. We had such a Great Love Story. I truly believed it. He probably did too. But he cannot get out of his way to enjoy the MOMENT that will never come again. I pray he finds the help I am unable to provide. Because MONEY? Lol, that is NOT the problem. He is having a crisis of Faith. He is having a crisis of situational anxiety. He has forgotten how to Laugh, how to Love. And it splinters my heart seeing him so MISERABLE and emotionally impotent, so faithless. And yet, so determined to place my heart beneath his boot heel and crush and shatter, flatten and obliterate the remnants of Me. What is left of Me that Chronic Illness hasn’t yet erased.
Many times, I try to bring him back to Reality: Dude, my parents are actually going to DIE at some point. And this was how my large family afforded college! My grandfather (RIP) died and left my father the money.
Sure, my husband’s parents haven’t been so helpful. Their deaths have left us nothing but bills and some leftover baby aspirin, but shit, mine have a nest egg.
I remind him, we just do NOT know what the future holds and fighting now and subtly encouraging me to OD on street fentanyl does not personify living and loving in the MOMENT. Being smart about spending is wise. And I remind him of the truth: we don’t take vacations. None. We do not go anywhere: the movies, museums, clubs, events. We do no home improvements (even though they are desperately needed) – we “make do!” We have no new appliances, or cars. We don’t buy plastic surgeries, or gamble, or even go out to dinner or concerts. We have given our children nothing of significant money value – only straightened teeth and college (and they pay for a part!). No cars, no trips, no lavish gifts of any kind. Nothing.
Our counseling homework last week was to make (yet another!) budget for our next session. His requirement is to curtail SPENDING, rather than INCREASE INCOME. Got it! (And this budget stuff is a laugh. I’ve been budgeting for decades. DECADES. The only problem is we just do not make enough to cover expenses. Sadly, when I budgeted years ago, I assumed his income would grow faster than it has in reality. And of course I anticipated being able to bring in a better income. I also, planned for his single income while I was a SAHM and raising babies. He never made enough. So when we would take that obligatory biyearly trip to visit family (not even close to a “vacation”😒), there was NOTHING – $0 – in our budget for 6 plane tickets and no family that welcomed us to stay. I tried to explain this but he didn’t want to hear. I tried also to explain the importance of a handful of frugal family vacations and their importance. He agreed and loved them, but I don’t think he understood. Again. The budget did not stretch for these things. Ever. Unless I worked. And my silly salary (as I called it) did not cover childcare. Ever. That’s when health troubles started for me too. I am sure the unsafe decision to have my 12 year old watch his 3 siblings and me “parent via cellphone” took ages off my life and was the catalyst for the more serious health issues to come. As a mother, you cannot leave your children in unsafe situations for hours of the day and not have it take it’s toll. There is always a price. Both our parents could have helped, both had better things to do than grandchild care. Marc was okay with the situation but I became desperate and despairing. And no one cared. No one. I was completely alone and desperate. And what does this have to do with our present situation? Absolutely nothing. And everything too.
And back to the present day, I have been feeling a little better, a little sunnier, a little more optimistic – even happy – of late. With this energy, I’ve been working on listing ebay because I have a ton to sell and it is SO HARD for me with my health, so I was all PROUD of a sale😁! I came to him 2 days ago and said: I sold something on ebay so please transfer the $ to the CC… As he pulled up the account, he FLIPPED OUT. My sunshine was ended, just as quick as it had shown. He literally CRUSHED ME with his reaction. Crushed me. From my small space as the gray rock, I wept. I wept and could not stop. I wept for him, and for me. And for the whole world of pain.
Since he really wants to focus on LESS spending, not more income, I had told him just THAT DAY that I had found 4 expenses that I would forego, most of them were necessities for my chronic health, but he wants to cut costs, so. Let’s roll.
1) cancel my medical massage membership, which I rely on for mobility and health once a month.
2) cancel my audible membership. I can no longer read real books due to migraine, so audible has been a lifeline.
3) I would only buy hair 2x year, instead of 4. I have horrible alopecia from chronic conditions and medications.
4) I will also only indulge in the nail spa 4x year, rather than the 6-8 at present.
After another night alone and much much much weeping, I told him to cancel the housecleaner. This is the 5th spending cut. It’s another “sacrifice” for my health, but hey!, that’s what sacrifice means.
It took me awhile to arrive at this decision because I need Silvia SO much. I am in such bad physical shape; she is my lifesaver. She is oxygen. And I can no longer have her. Because Marc believes we cannot survive without cutting costs. More tears, more weeping. More realization of incredible LOSS.
He argued that we shouldn’t make that decision yet. And I do not understand. Are we cutting spending or what? And that’s why I’ve been SOBBING!!! Dude🤦🏻♀️ I’m ALONE AGAIN and going through the shit here with terrible LOSS and LOSS related to my HEALTH. These changes will change our lives significantly: no people over our home at all because I cant clean, less activity overall because I won’t have HAIR or a medical massage! He cannot even SEE the consequences.
The life I had clawed to establish from rubble is over. Again. And I am ALONE. Again. Desperately alone. Always alone.
I scroll through my contacts on my phone… A’s… D’s… H’s… R’s… there is NO ONE name. Not one. My heart is hollowed out, there are the prickles behind my eyes, my brain is cement… through it all I can feel one thing… pain. Wouldn’t a little slice make me feel a little alive right about now?
And I just wonder (it’s a nagging question) …. what will HE be giving up?🤔 Buuuut I don’t think he has ANYTHING to give up since I’m the ONE at fault here. The burden. The blight. Worth more dead than alive. After all my weeping and checklist of savings, he has the gaul to say: “Well, we don’t have to make that call yet, we should make up the budget first.”
Put a tourniquet around my heart. Pull it tight, use a windlass or twist stick to tighten the constriction. Tighter. Tighter.
All this because I SOLD SOMETHING and the money goes towards the CC. And then, as luck would have it, I sold 2 more things today. With these new life altering changes, I’m also closing my makeup biz. I’m ending the flipping and sales I was doing on ebay. The piles will sit or be dumped. It’s over. I’m over. Tighter.
Is his goal that that I be MORE MISERABLE than him? Does he want me to off myself? Does he want to divorce me? Tighter.
He says: “Nooooo I love you, honey.”
Love? Love? Love. Love. Love. Tighter. Alone. Desperate. Always… Alone. LOVE.
You keep using that word. I do not think it means what you think it means.
He was my best friend, my soul mate, my confident. He’d seen my dark side and loved me. He reminded me: “Remember when I used to get those little gifts for you?” Yes, I remember. Was that when you loved me? He points out something he used to do to show love and he can’t even see that he doesn’t do it anymore. He hasn’t for decades. Can he hear himself?
I thought Love would last forever. I was wrong.
Tighter. Broken. Burden. Blight. Love.
Life with RA
#RA #RheumatoidArthritis #Chronicillness #LifewithPain
Chronic Illness is everything
Truth is humbling and embarrassing. You get it when you *get it.*
I remember in my later 30’s when I felt my normal life slipping away, a Saturday where I suddenly could not complete my weekend to do list – collapsing in bed face first I wailed dramatically to my Marc: “What is happening to me!?”
Piercings with my girls today! I love a piercing to represent each year I have been chronic… my little way of making an Invisible Illness, visible.
#ChronicMigraine #ChronicIllness #InvisibleIllness #CMAware #ChronicMigraineAwareness #RA #ChronicPain
She made broken look Beautiful
She made broken look Beautiful,
And strong look Invincible.
She walked with the Universe
On her shoulders and
Made it look like Wings.
– Ariana Dancu