Advocate, blogger, poet, artist, mom of 4 and Grammy of 4 awesome grandspawns and 2 generations of grandkittens, Crazy Cat Lady, Master of Selfie Taking, and Chronic Daily Migraineur with Depression, Anxiety, and Tardive Dyskenesia.
I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?
The disability process itself mirrors these same sentiments – the 3-5 years (average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.
You usually have to be literally dying to be automatically granted disability in the USA.
This book is awesome. It’s like a chicken soup for the mind, interspersed with colorable doodles by the author and quotes.
(I normally don’t have the money to spend on new books–insert sad face–nor do I recommend them in my blog, but this was a gift from a friend and I love it!)
Last night my Tardive Dyskenisia was acting up something awful. I moved from bed to the couch so my leg twitches wouldn’t keep my guy awake, but I couldn’t sleep. My breathing felt…tight. I was restless.
Usually when that feeling takes root enough, I start feeling anxious, and last night was no exception…sitting down to color was an act of will, but I hoped it would help head off the panic attack that restless, trapped, anxious feeling sometimes brings on.
Within a half hour, I was engrossed and my annoying twitches were mostly ignorable as I concentrated on coloring and breathing slowly instead of panicky hyperventilating. I never got to sleep–after trying 3 times and starting to get worked up again, I gave up on the thought of it and went back to my coloring. I remembered I had some kids’ glitter paint from the days my grandspawn Keaton was a frequent visitor, and decided to add it as an accent…and voila! Perfection (almost–I did tweak the quote to something I felt was more fitting for me).
It’s totally going on my wall, to remind me that I have a decent tool to help calm myself and that it’s okay to be uniquely broken…or perfectly the same; whichever fits my day.
It may not help head off every attack (what does?) but each tool in my arsenal is one worth a shot. 💓
Be well, friends–or as well as you can. – Selena
#thatspoonielife #thatmigrainelife #thatchronicillnesslife #mylife #pain #depression #anxiety #chronicillnesssucks #chronicillness #chronicmigraine #migrainethuglife #invisibleillness #geneticdisorder #mentalillness #abusesurvivor #suicideattemptsurvivor #artist #poet #advocate #blogger #spoonie #DownTheRabbitHole #panicattacks #TardiveDyskenisia #trying #coloring #distraction
I published this over a year ago on The Mighty, but I’m feeling it today.
It’s funny how when you go back and read something, you either feel like you’ve grown or realize some things are an ongoing struggle…I noticed how one of the last paragraphs is very much what the beginning of a panic attack feels like.
Today is hard, but I’m trying.
Today, the physical pain of my illness is keeping me from moving much, and the depression I feel over that is a constant thorn in my side.
But I’m trying.
Some days are good, some are bad, and some are worse. Logically, I know this. I know this from experience. But somehow it doesn’t always make it easier.
It’s not the physical pain that’s the worst. It’s the mental and emotional pain that goes with it.
It’s not trying to get through the things that need doing; it’s trying not to do them that is the struggle. There is a counter piled with dirty dishes and we have no clean spoons. The cat litter needs changed. I have an appointment that needs to be rescheduled, but the thought of talking on the phone when my migraine is screaming means it won’t be done today.
I have limits that my body and my illness has set for a reason, I remind myself. Pushing past them is a very bad idea.
I know this… but I still feel the weight of the things that need doing like a physical pull. And fighting the guilt for not doing them exhausting.
But I’m trying.
I’m trying to smile at the people and things I love.
I’d rather be crying, or raging at my limits, or both. I’d rather be curled up under my blanket avoiding them, but I’ve learned that this isn’t good for me, either, because the depression that is sinking its greedy claws into me is just waiting to isolate me and make me feel alone and hopeless.
It’s hard to fight its whispers, but I’m trying.
Today it is hard to exist.
You’d think that it would be easy to just breathe, wouldn’t you? To just let it all go when the pain digs into my brain and even thinking is hard…but it isn’t. Just breathing feels like the hardest thing I’ve ever done, and thoughts are running through my brain like manic mice.
Existing is hard, but I’m trying.
I’m holding on to the world by the skin of my teeth today. I’m remembering that there are good days, even if I can’t see them. I’m reminding myself that I still do good things, even if today I don’t feel good enough.
So…finding out that TardiveDyskenisia isn’t all twitches and grimaces and restlessness…oh, my!
All the things MHMR ( mental health and mental retardation, a government low income service ) doesn’t tell you, which is a lot. If you’re low income, never kid yourself about how much these people can or will help you. It is not remotely on par with a psychiatrist or therapy (which they don’t offer). They’re short staffed always and consist of nurses and caseworkers. They don’t give comprehensive information or ask comprehensive questions.
I just found out that other unexplained symptoms (and the ones most likely to trigger my panic attacks, of all things ), could be TD. NEVER BROUGHT UP BY MHMR, NEVER CONNECTED TO TD BY THEM.
What do people who don’t research obsessively do? Just trust that the people taking care of them know things or care enough to connect dots?
This is impacting my ability to post…my hands don’t work right all the time.
I’ve had breathing issues lately…it usually gets me into a panic attaack that I can’t control.
It affects being able to OPEN MY MEDS…even with easy open tops.
It’s scary as hell.
(Update to Attention Seeking? If That’s What It Takes)
Panic Attacks…those ARE hell, right? Like a very special worse than Hell kind of hell?
I honestly can’t imagine anything more hellish than panic attacks at this very moment, although I’m sure something else will manage to bump them down my list at some point today–I’m nothing if not a plethora of health problems, kind of like those bags of assorted candies, only the ones no one likes; chronic daily migraine, depression, anxiety, this Not-Such-Fun new one called Tardive Dyskenesia…and those damned spawns of hell, panic attacks.
In my last post, our intrepid heroine (me) was definitely feeling far, far less than intrepid; she was wrung out and desperate, recuperating from a brutal beat-down by one of the most diabolical adversaries she’d ever faced…Panic Attack.
Panic Attack was a sneaky foe–striking when least expected and at random, sometimes using tactics of other foes to camouflage his approach; a feeling of general unease (borrowed from Anxiety), despondency that a specific situation or life in general would never improve (Depression’s usual expertise), the nagging, irritable, on-edge feeling and vague confusion often felt before a particularly nasty spike in Migraine pain…a few days of these always niggling at the mind was a fine way to remain unseen but to pave the way for Panic Attack’s sudden strike with the coup de grâce of his arsenal–MIND-NUMBING, RELENTLESS FEAR/TERROR (we’ll just refer to that as FEAR for short in the rest of the post…always in caps).
Sometimes, P.A. (Panic Attack) preferred to just drop the FEAR bomb right off the bat (why be predictable, after all? That’s just sloppy villainy) in a sudden and overwhelming attack designed to keep his victim reeling and off-balance.
No matter when or how P.A. attacked, the FEAR strike often had the effect of Increased heart rate, Chest pain, Inability to catch your breath, Dizziness, Tingling feelings, Intense feelings of anxiety. As an added bonus, the victim of a P.A. FEAR strike knows (either during or after the attack, or both) that this FEAR is not rational and they are not in real danger…which can weaken their mental state and make them fear they are going crazy.
Although our heroine was equipped with an Anxiety Shield,
anti-anxiety medication, information on methods to ground herself, and determination to best her foe, she had not yet been successful, and the onslaught of repeated attacks was creating a near-constant state of dread of when the next FEAR strike would come.
And for our heroine and many others who battle this enemy, the FEAR strikes brought yet another effect–a feeling of utter hopelessness while in the midst of a strike that it would never end, that they would never be able to best it, and that the only way to be free would be to give up…permanently.
Yes. Suicidal thoughts.
Perhaps the hardest effect to face, and to admit to others, as often those unable to control thoughts of suicide are treated as if they are thoughtless, selfish people who care nothing for their loved ones to even consider such a thing…sometimes unintentionally by people who mean well, who attempt to point out all they have to live for…and sometimes purposely by those who believe shaming a person will stop them from ‘acting selfishly’ and ‘only thinking of themselves.’
The fear of being berated, shamed, or having their pain invalidated as unimportant or unfounded sadly prevents many people who struggle deeply with these unwanted and intrusive suicidal thoughts from ever reaching out and seeking help, and can reinforce feelings that they are terrible people whose loved ones would be better off without them–tragically, some of those people may go on to attempt or complete suicide.
Our heroine has long maintained that those who reach out for help despite fears that the stigma and misunderstanding surrounding suicide and suicidal thoughts will cause them to be rejected and shamed are the bravest people there are.
And she believes this because she is a suicide attempt survivor…who did not ask for help, either before or after her attempt 20+ years ago, because her fears of being judged were too great.
She believes this because she knows exactly how hard and scary that is, and how long it took her to finally overcome it. “Sometimes one of the hardest things to do is to admit you need help and reach out for it. To do so anyway is courageous,” she often tells others.
And she has an idea…she thinks it might just be a good one; it may not completely defeat Panic Attack, or even halt his FEAR strikes, but maybe…just maybe…it could help keep him from defeating her.
But she’s going to need some assistance, and the nerve to ask for it.
And this time, she’s going to take that step–that scary, hard step that she didn’t take before. Because if ever there was a time to have the strength of her convictions, this is it.
And she did.
Before she could second guess herself, before she could let her fear stop her, she reached out to her friends, and hit the ‘post’ button…
Was there a possibility that this post would be interpreted as attention seeking? As being overly dramatic? As being selfish and self-centered?
Of course there was. She knew that because she would have thought it herself in the past, had she been the one reading it (which she isn’t proud to confess).
But she decided she could live with that judgment if it came…because this was her life.
Her life that she’d fought for alone too many times, in battles she’d never told and would always carry scars from; some on her body and some in her mind and heart. Because she was one of the lucky ones who had the chance to see all the things that could get better, and even if some didn’t, to know the things and hold the people that made the fight worth every minute to her.
Surprisingly, what came was an outpouring of support, love, and encouragement. Not everyone could sign on to help her test out her Panic Plan, but every single person who responded still helped. They may not have thought they were doing much, but it meant the world.
And for the moment, we’re going to leave our heroine and go back to the less heroic alter ego, me. But the moral of the lesson is this:
No matter how strong a hero/heroine is…sometimes they can’t fight every battle alone. Look at Thor–he’s a freaking god, but can’t get his brother under control without the Avengers. Iron Man is a tech genius, but his own creation, Ultron, went off the rails and without his team, could have caused even more devastation.
Sometimes in life’s battles, you just gotta have a little help from your friends. And there’s not anything wrong with that or with you for leaning on them.
It all evens out–because won’t you be there when they need you, too?
I’m so, so grateful for mine.
Now comes the fun of putting this plan it into effect. Really, I’m blessed I actually had enough friends step up that the burden will be lighter for everyone, as opposed to having a few taking the brunt of calls…no matter how much you care about someone, it can wear on you to be THE go-to. It’s hard to “see” (in quotation marks because they’re all over the US and we’ve never seen each other in person) someone you care about struggling; it’s painful and there’s no way to avoid that–lessons learned raising two kids with mental health disorders. You want to make it better, and sometimes you can’t.
As it stands, I have enough volunteers that if I had weekly attacks, most of them would get a turn once every 2 months. Not everyone is available 24/7, but when you have more than one to rely on chances are that SOMEONE will be reachable when you need help. A few are last resort volunteers–if no one else is available, they’ve pledged to take up the slack no matter when. Maybe half are estimating they can be there any time, day or night, others are better reachable at specific times of day.
As things get hammered out and tweaked, I’ll update on how it’s working out and what about it works or doesn’t.
Right now, it’s a huge weight lifted just to know I’m working on it…with an awesome support system by my side.
Some days I feel my life in a series screenshots…today is one.
Panic attack that I couldn’t get under control, fighting with myself until I crashed in exhaustion. I’ve never felt anything quite so terrible as they are (except maybe what spawned them?)…and I AM a control freak, especially when it comes to my body. I have to be able to be in control of it.
Life with chronic illness is an education in exactly the opposite of being in control of my body. It does things without my approval all the damn time. Do I really need my brain hijacking things, too?
Nope, but it doesn’t care.
Currently, my ability to deal with these sucks.
I finally put out an open call among my FB friends for any help dealing with these I can get. Being talked down in an earlier stage the best success I’ve found so far–my own grounding attempts are so hit and miss.
My idea is to have a list of people who are able and willing to help talk me down, and I’m open to suggestions on grounding myself, too. (I currently get mental health meds through MHMR–a program for the low income–but ours doesn’t do any sort of counseling. So asking for help there goes nowhere. I need coping skills, not just pharmaceuticals.)
Some folks will see it as attention seeking…and if wanting to not give up is attention seeking, I’ll wear that label. But mostly…I want people to know how real the struggle is.
It’s the height of irony to me that in the year of being completely untreated for my chronic daily migraine, I’ve had pieces about medication get published.
Why am I untreated? Well, it isn’t by choice. I found out during a renewal interview for medicaid benefits that I actually should never have been qualified for them to begin with…but had been receiving them for two years due to an agency error.
Yes, you read that correctly. Two years of treatment that I could never have afforded, including a specialist and botox–which happens to be the only treatment thus far that made a marginal difference–now gone. I was reassured by the supervisor I spoke to that since it wasn’t my fault, at least I wouldn’t be prosecuted for defrauding the government.
Well, thanks. What a relief.
But surprisingly, that was not and still is not my major concern. Not that not being prosecuted or responsible for paying back thousands in assistance isn’t a good thing, mind you…but the treatment that was giving me enough improvement to be functional a few days a month was and is gone.
Just like that. Gone.
It’s possibly the worst thing I’ve been through in the past few years, and if you’re wondering how terrible that could really be, I invite you to take on my chronic daily misery for a week. Really, I’ll gladly share.
Because when you’re not functional more days than you are even minimally functional, a few days makes a huge difference.
And money…well, in my experience that sometimes (often) makes ALL the difference often in whether one is functional, in what treatments we can try, and even in how we are judged for our illness and what we do for it.
Judgment of the chronically sick and disabled is alive and well, in case you thought it wasn’t in this more PC era.
We’re given the side-eye for what we may have done to “cause” our health issues (um…be born? Mine is ’caused’ by genetics, thanks) and what we’ve done/are doing/aren’t doing to treat our condition; from “OMG, you’re putting those prescribed toxins into your body? How can you do that?” to “Well, if you’re not going to try ____, you must want to stay sick,” as if a few minutes of Google confers a specialty doctorate in our disease.
Unfortunately, all those treatments and medications and doctor appointments take….*drum roll*….money. Doctors aren’t exactly lining up to take patients pro-bono, despite the number of non sick people who are certain I can find someone to “work with me” on cost or payments (see, the problem there is that assumes an income at all to “work with”).
And Medicaid, disability, and insurance through the ACA are not the catch all safety nets people assume they are.
Plenty of people who qualify for medicaid in one state would not in another, because adult Medicaid is not federally mandated. It’s up to the individual states what the cutoffs for qualifications are and which benefits are granted. Also, it’s very hard to qualify if you don’t have a minor child in your home and aren’t working at least 20 hours a week, unless you are disabled.
Disability…I don’t have much good to say there. Plenty of legitimately disabled folks can’t qualify for disability. For one thing, doctor records are one the main things needed to make a decision, and since I haven’t been to a doctor due to lack of money in a year, my appeals have denied on that basis DESPITE having a Game of Thrones series sized stack of paperwork from doctor visits alone on my initial application. Also, my illness isn’t considered disabling by and large. (Although I don’t know many people who can drive to work, much less work, with frequent vertigo, or aura, or crippling pain. Go figure.)
Insurance through the ACA…first, will there be an ACA if Republicans in Congress have their way? Second, you still have to pay for insurance through the marketplace.
Sigh. So that’s why I’m untreated. Fun times. (Not really. Why is that the expression for un-fun times, anyway?)
Having to explain this is pretty exhaustive, which is why I usually don’t–people who want to judge are going to regardless.
And why it’s kind of hilarious to me in a weird way that I have an article ABOUT MY LOVE/HATE RELATIONSHIP WITH MEDS published in Teen Vogue this month, via The Mighty, who originally published it…titled Please Stop Judging Me For Taking Pain Medication.
Does anyone not see the weird funny in that?
There’s also the fact I’m almost 50 and being published in a teen magazine, but I figure my coolness quotient has that covered. 😉
I’m still pretty thrilled about it (despite the disagreement over the title you can see in my screenshot which was resolved pretty quickly- thanks to The Mighty and Teen Vogue for being cool about that) , because I think it’s an important article. Hit up the link and check it out, and let me know what you think!
Speaking as someone on the up end of a spiral, this is bang on for me. I highly recommend reading it, as this is a little discussed area. It can throw you as off kilter as being in the grip of depression.
One thing I’d like to add, though: You may also find yourself surprised or appalled by thoughts you had or something you did while in the Rabbit Hole…this recent spiral marks the first (and hopefully only) time I’ve ever let my meds run out.
I know, not very bright. And while I know the feelings that led to it, “more okay” me can’t quite wrap my head around how I could do something that for 4 years of treatment I’ve been careful to not do.
I know the dangers of going off psychiatric meds suddenly. I know them intimately through raising two kids with mental health disorders. I know for myself what a bad place I was in before medication.
I know that my anxiety was still in the uncontrolled area–we were still tweaking meds and dosages. And that they were starting to help. Finally.
I know that by the time of my next appointment (3 days!), I’ll have been off my meds almost a month and will have to start over as far as waiting for the benefits of them.
My meds actually haven’t had any unpleasant side effects, which I know can be a common reason for wanting to stop them. And the kicker is, I DIDN’T want to stop them. I wanted them. I missed them.
But caught in the depths of the Rabbit Hole, I couldn’t bring myself to keep or schedule my appointments…couldn’t bring myself to make those calls or leave the house.
Couldn’t bring myself to care.
Even as I got worse…I couldn’t care.
And that’s the hardest part to get…that sick me, who I’ve tried so hard to keep at bay, just didn’t…care.
But I’m learning that sick me isn’t a lot like “more okay” me. I’m not sure I like sick me much; she’s a real mess. And the things that deeply matter to me are ones sick me blows off because she can’t muster the energy to do, or care about.
And hopefully, I’m learning things to keep sick me from making decisions for me.
My perfect patient record has taken a dent…but thankfully it didn’t break me.
This position requires an open mind, willingness to learn, loyalty, the ability to be flexible with plans and to not take changes personally, and a caring nature.
Sympathy and pity not required, but attempting to understand that you may never understand what we live with is essential.
References and experience not necessary. We are willing to work with you on anything you need to know.
Please apply with any person you know living with an invisible and/or chronic illness.