Surviving a Chronic Illness Life requires a lot of time and energy - it's a full time job.
I'm in my 40's, married to my bestie and soulmate for 25 years. We have 4 amazing kids who are now young adults. I'm an RN but no longer able to practice due to my health. Everyday I battle Chronic Migraine, Rheumatoid Arthritis, Sacroiliac/lower back issues, Depression & Anxiety.
For so long I felt so alone, and it nearly killed me. Connecting to the Chronically fabulous community saved my life and I would only hope no one else go through that loneliness and anguish.
This is not the life I expected, but it is My Beautiful Migraine... and everyday I strive to learn and love. Making art through graphics, words and photographs is something creative I can do in my suffering time in bed. It's therapeutic and gives My Beautiful Migraine "voice."
Thanks for reading! :D
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.
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.
Idk. 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.
You keep using that word. I do not think it means what you think it means.
He was my best friend, my soul mate, myconfident. 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?
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.
Most birthdays just melt right into the next… but I was hoping 50 would stand out. Lol. That’s for sure! Here’s the story:
We’ve been a little sick for a week: runny nose, cough, scratchy throat. Covid home test neg! Fever started yesterday. I thought Marc was silly for testing AGAIN this evening.
So we decided to head to the ER for some treatment… both of us in our 50’s and me with my chronic conditions and compromised immunity…
No wait at the ER and nice staff. They swabbed us again, took brief histories and agreed to prescribe Tessalon Perles and Paxlovid! Hooray! Now to find a 24 hour pharma WITH some Paxlovid stock! (Joe only purchased 20 million doses for the country!)
The ER staff informed us that the Walgreens at William Cannon had stock yesterday… so we called to check while driving there and – YES! They had stock!
Script filled in 30 min and we were on our way home to start our antiviral!
Our symptoms are pretty mild, compared to some influenzas I’ve had in the past. Sense of smell and taste intact. Guess it was only a matter of time before we got the Rona. Maybe our vaccines and booster is helping but I can’t WAIT for the next Gen of vaccines, personally. Although we’ll have Natch Immunities now which will be awesome! We’re taking zinc, vit D and baby Aspirin, besides Loratidine, NSAIDS, and nose sprays.
Most birthdays just melt into the next! This one will be memorable!
Addiction is real. A real mental disorder that deserves care and understanding and action. But thus present US govt stance on Opiates (and growing number of other drug classss), there is a terrible disservice done to Addiction, Tools of dealing with Pain, Chronic Pain – EVERYONE.
Opiates and other medications are simply tools. They are not killers, they are not evil, and everyone reacts very differently to medications. Allowing our US legislators free reign to make laws regarding these tools, we invite individuals who know NOTHING about Healthcare our OUR individual health care into our chart, our PRIVATE lives. No no no no no!
I am not unsympathetic to human beings who have lost their lives to opiates – in whatever their capacity – illegal fentanyl, overdosing on prescriptions, etc. Every loss of life is tragic. There is a process where our country could be more careful with opiates. But it’s a no-go inserting government into a patient-doctor relationship. My doctor and I know the tools to care for my health. The US legislator does NOT.
To me, there is only a Libertarian POV for medical care. Not everyone is an Addict. The population should not be scared to death about treating temporary or chronic pain. Doctors’ licensing shouldn’t be threatened for good and appropriate healthcare. The government does not belong in between me and my physician.
I cannot wait for the pendulum to sway back to Sanity. Get the government OUT of my healthcare!
Addiction is real. It is NOT the same thing as Dependence. Not everyone is even on the spectrum of Addiction potential! Treating a medication as an evil thing is just dumb; medication is a tool. And mistreating temporary and chronic pain inadequately because of a creation of an Opiate War is criminal. Advocate for genuine, positive, individual, wellness-oriented, collaborative patient healthcare.
Haven’t really blogged in awhile. I have so many ideas for pointless storeytelling posts. And maybe someday I’ll get them to print. Once… not too long ago, I fancied myself an #AuthortAt49. As my present age of forty-nine is nearly sunsetted, it’s a fact that I’ve done the leanest writing in my life.
The amount of #sucking I exude… emanate… radiate… is dangerously toxic. Run away. RUN. AWAY. Far away. Run fast. If you come into contact with me for more than 15 min, take a hot shower and scrub with lye.
There’s a song for that:
With a taste of your lips, I’m on a ride
You’re toxic, I’m slippin’ under
With a taste of a poison paradise
I’m addicted to you
Don’t you know that you’re toxic?
And I love what you do
Don’t you know that you’re toxic?
It’s Brittany, britch..
So why the Diva Donna Sound of Silence? Too much to write about… ✔ plenty of time to write….✔complete lack of motivation… ✔ unsual, nonstop, under-controlled PAIN and symptoms… ✔
I spend normal waking hours professional TV watching. And literally writhing in pain in bed, doing the RA Weird Bed Stretch, sleeping ungodly amounts of time. Tears… and more tears. Drip💧 drip💧 drip💧
I’m just BARELY existing. Have been coughing from allergies since November (inhaler, nose sprays for treatment). Bizarre sky high BP for a couple months (~150/95)
It’s pretty obvious I will have to go on a cardiac BP migraine prevention med again – I was on Nadolol for years for migraine prevention. It never did shit for migraine but I wasn’t hypertensive then. And now my migraine clusters feel very related to my high BP. And I cough with allergies… and crap, my head explodes with pain with each cough💥 cough💥 cough💥
Please no more. The tears start and they don’t stop. I’m crying and crying.
Marc and I quibble and argue about stupid stuff. It’s the same circular train. 1) “Money is tight,” states Marc. Translation: Donna, you literally contribute NOTHING to the marriage & our children’s lives. You’re worth more dead than alive. Strangely and for no reason that I can connect, this conversation and translation leads me to become silent and distant. Kind of like I want to walk off the nearest 55 foot cliff to my death. The next part of the part of Marc’s conversation is, 2) “Can we never TALK about this without you getting upset?” Marc bewildering asks. Not a prob; let’s just get passed the next sentences of me being a big fat burden so we can talk more about not spending money. Which I think we already discussed? Because this is a conversation we’ve had for the last 22 years. And, frankly, it’s BORING. It’s tiresome. And the same exact conversation. And round and round the train goes…
Don’t mind me… I’m just existing in bed 23 hours a day. Vegetation grows inside me, replacing my vital organs… vegetation alongside me, roots form and burrow underneath me, replacing my veins and growing into the mattress, my wings are broken, they are ripped out of their sockets and hacked to bloody stumps. I am a plant stuck. Joy is waning, Joy is untouchable.
As I’m existing here… I lay on my right side… head propped on soft pillows, slice of pain starts at the top of my right head and travels down to my ear. There is a flowering of some beautiful pain in my right temple. My hands hurt… it’s like on a cellular level… the cells of my hands and fingers hurt. How dumb is that? The same cellular pain is in my feet… their joints, and muscle tissue. If I keep them still, maybe I’ll notice it less. The pain up my right thigh and lower back is different and more intense. But overall, there is this covering… like a web or large linen cloth – it envelopes my entire non-ethereal person. It is so present… it reminds me I cannot move… I cannot breathe… there is no me, only a linen sack of body. The tears drip out of my non-ethereal eyes. Drip💧 drip💧 drip💧 Flow. They’ll never stop. All Joy is gone. I’m alone in The Dark Hole. People I loved have left me, turned their backs on me. I can scroll my contact list and it is full of strangers and people I only used to know.
At present, Ukraine is being bombed to rubble. One day Ukraine is wining the war, the next day Russia is. My fav journalist Ben Hall has lost limbs but is alive. Biden says you can’t buy a cannon. Kamala is under the spell of the Significance of the Passage of Time. Boris Johnson (PM UK) toured Kiev with Volodymyr Zelenskyy (Pres Ukraine). Optically, it looked majestic. My dearest niece in law (42) just lost her little bean baby… an IVF baby 11 weeks and the heart stopped beating. Her D&E was Sunday. Courtney rolled her ankle and is in a boot for weeks. I don’t know if Corey is ok. I don’t know if Nick is ok. Robyn seems ok. She broke up with her new boyfriend a couple days ago and is sad. Courtney’s bestie broke with her BF after 7.5 years and she is hurting. Sue sends Dave letters showing she is still firmly chaining herself to her personal constructed Hell Loop and I can’t even imagine the PAIN she is creating for herself. She holds the key to her release but won’t release herself. Eric Adams (mayor NYC) has pulled down the mask mandates EXCEPT for children 2-4 years old. Those babies may not even be potty trained (and certainly they are NOT spreading covid) but they must wear a face mask. I can get another covid vax booster, but I don’t WANT the SAME vax – I want one with updated strains, for crissake. In Florida, insane people don’t want a law passed that doesn’t allow sexual/gender discussion in K-3rd grade. Disney is at war with Ron DeSantis. There’s been a terrible shooting in NYC subway – shooter is not caught yet. China is shutting down for a new strain of covid… yet there has been one death. The world is in ruins. Like the rubble and ruins of Ukraine. There is no Joy. There is only great Sadness. I’m losing friends… I have nothing to give…. my circle of Life closes in and I’m fashioning myself a Recluse. I used to always be sure in the bond with my husband. Just a few days ago, we were holding each other. And now…
There’s a little black spot on the sun today (That’s my soul up there) It’s the same old thing as yesterday … I have stood here before inside the pouring rain, With the world turning circles running ’round my brain, I guess I’m always hoping that you’ll end this reign, But it’s my destiny to be the king of pain.
My son is going through a terrible mental trial right now. It has affected his health and he’s gained weight. He started slipping away and into a mask when he was 15/16. He is 22 now. I became quite alarmed during covid lockdown as he seemed to be getting worse – more distantand disengaged. We made him connect with a counselor in January 2020 and he admits she saved his life when we could not.
He has bottomed out as far as self worth. And it affected his college grades very negatively. He lost his major, he lost his job. But he is still facing each day and the demons of depression and anxiety. Friends and family have sent him encouraging letters, we’ve worked with him daily, weekly, with his self worth, screaming the message that he is worthy and things will get better.
He says he’s doing well with grades this semester and he continues working with his counselor. He is no longer self harming but has a lot of weight to lose – for his health and for his self esteem.
Tonight my mom asked how he was doing. I told her he wears his unhappiness on the outside. She said: “He really is such a good looking guy – under that blubber.”
Wow. Lady. I sometimes think my kids would be better off with no grandparents at all. Jesus, do people even hear themselves?
I’ve spent a lifetime trying to protect them, love them, learn about their unique souls, their dreams, their passions. I’ve tried to keep them alive and grow into good humans. All the while… I need to protect them from hearing horrible insults from people who are supposed to love them.
And my mother had WONDERFUL grandparents! They adored her and spoiled her. They were very special people in her life! How does that even make any sense?
Sometimes I lament aloud with my peers about how difficult life has been with my mother. I can always count on someone in the room countering my lament with something like: “Oh you are so lucky to have a mother! I would give anything just to have 5 more minutes with my mother.” (Because their wonderful mother died from a horrible illness when they were like 10, or something. *Roll eyes*) Gah, take MY mother! Please!