Writing Through It

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Every Day is Winter: Living the Groundhog Life

Apologies for the lack of posts lately. Among the things that no one ever prepares you for, I have found, through the better part of the last decade, that to get ahead in life, I’ve had to learn to become my own doctor, come to terms with my childhood trauma, PTSD, and dysfunctional family, AND realise that I probably should have followed through on my childhood ambition to become a lawyer.

It’s all knowledge that I’ve acquired through the baptism of fire. All these great obstacles are daunting, in addition to my efforts to become a published author. It’s a tall order for anyone, let alone for us souls who have to trudge on in spite of our limiting chronic illness.

Spoonies often refer to the “sloth life”, but I feel like I’m living the “groundhog life”.

Every day for the past few years, my declining health has forced me toward being almost completely homebound, and increasingly bed bound. It feels like I stumbled into a version of the Bill Murray movie “Groundhog Day.” It’s like waking up to the same Sonny and Cher song, “I Got You Babe”, every day, and no matter how hard I try to push against the tide, the song just keeps blaring day after day with little hope of an end in sight.

Phil tries every trick in the book to escape his personal purgatory—from learning piano, to kidnapping the groundhog, to attempting to off himself. I don’t particularly recommend any of these besides learning piano, but I do endorse finding your personal escape strategy.

For me as far back as I can remember, books have always been a constant source of escape. I have never been the gardening type, but I have found that I make a decent indoor mother of plants. And I have acquired a newfound sense of joy in cultivating plants on my window ledge that I’ve nursed into prosperity and the harvesting of baby plants. So much so, that our house may soon resemble something of an indoor jungle.

And, by happenstance and the recent heat we’ve had here in England, I accidentally stumbled into the world of naturally fermented ginger beer. It makes sense when you think of it and after doing a little research, I found ginger is rich in natural yeasts and probiotics so that when naturally fermented the health benefits are similar to that of kombucha.

While I can never bring myself to watch overly cheesy daytime television, I must confess that I’m probably on my third rewatch of the shows I enjoy most. But, I feel there’s only so many times I can rewatch beloved movies and series before I start feel a little brain dead.

Enter the realm of documentaries. Historical, political, musical—it’s all there for the taking and I’m totally on board. Although I must confess that I am growing weary of the unending supply of documentaries that contribute to the depersonalisation of women, that is the world of murder mystery documentaries.

Amidst all this, I’m soldiering on with attempts at better health by doing weekly oxygen chamber sessions. I’m working slowly and systematically, to get my GP on board by updating her about my health to try and erode the “me versus them” vibe they created when they declared me to be mentally ill, rather than physically ill. And I’m slowly toiling away at polishing the first draft of the novella I’ve written, inspired by my experience with chronic health.

I remain hopeful that I will soon summit the Mount Doom that has been my legal drama of the past seven years, to hold the executor of my late father’s estate accountable for their failures and the tangible harm and distress this has caused. The greatest of which has undoubtedly been being robbed of the opportunity to fully reconcile with my late father’s death. Because I had to put my grief aside in order to battle the dragons that are lawyers, who by nature and profession, cannot admit to failure even in the face of overwhelming evidence to the contrary.

After all that has happened over the past few years, it is never far from my mind, how much life with a chronic illness is like living in a great organ grinding machine, where our societal value is that much more diminished by our inabilities. The demons and monsters that we are forced to fight against every day, make Phil’s struggle to become a better person and get the girl to escape Groundhog Day, look tame and mild by comparison.

But, and it’s a big BUT, I have also learned to find joy in repetition, positivity in discarding rather than consuming, strength in the struggle, a new understanding of how much I took for granted in the past—so that I have an increased sense of gratitude in the good that I have in my life.

As Phil says after his transformation “When Chekhov saw the long winter, he saw a winter bleak and dark and bereft of hope. Yet we know that winter is just another step in the cycle of life. But standing here among the people of Punxsutawney and basking in the warmth of their hearths and hearts, I couldn’t imagine a better fate than a long and lustrous winter."

It is unjust that many of us are forced to live in a sort of permafrost, without acknowledgment or adequate support. However, we do have control over how we experience the bleak and dark winter, by choosing to foster and create our own light.

And it is out of this light, no matter how small, that propitious hope will always find a way to bloom and prosper.

#MyCondition #Fibromyalgia #ChronicFatigue #Thoughts #WritingThroughIt #TheLittleThings #DistractMe #MyalgicEncephalomyelitis #ChronicPain

10 reactions 1 comment

I’m actually panicking really hard about food insecurity

Please don’t give advice. I need to be heard.

I have serious #Agoraphobia and #PanicAttacks

I have not been physically, psychologically, emotionally safe in years

I completely shut down attempting to go anywhere because I am managing so much on my own (although people are listening more)

I have no place to store food nor do I have regular access to a place to cook food because the place I’m in is hostile to say the least

I am impending street homeless

I do not have enough money to buy food

My diet is incredibly restrictive when I am this hyper vigilant

I am not from this area and I have no control over when I can/cannot leave because I’m constantly navigating triggers and other people’s comings and goings.

I cannot stock up.

I also am running very low on the basics like toiletries

When I have attempted to get items- it has caused me significant distress to see that my life is only worth things that are expired

I cannot force myself to eat these things no matter what I do.

The agency where I used to access *some* things is over 30 minutes away. I don’t have enough gas to drive there when I need things to only get a couple of boxes of noodles, shampoo, conditioner, and soap.

Not only that- they are severely restricting my ability to access supports so I no longer even feel safe going there until someone has a conversation with me about their new expectations on me.

They are not considering all of this when they send me long emails I cannot read because I am so sick and nutrient deprived and resource deprived. They don’t consider that I am now without any certainty about how I will access any resources.

After this week, my case manager will be out for a week or two and I didn’t think to ask her to help me get food items. She is new to me and hasn’t been through the whole food ordeal, although she knows I struggle. It’s Memorial Day weekend so I don’t have any idea when I’ll be able to secure items I need. I am too scared to go to that agency right now.

The place I am staying is a very middle class household, with my former bff, her husband and their kids. Their daughter asks me for any food she sees me eating. The family orders pizza and Mexican and uses hello fresh and have celebrations. I’m eating tortillas and avocados on repeat.

I don’t want pity. I just want support. I cannot explain all of the factors that make this feel unsurvivable. It’s hard to constantly explain why what people see on the news isn’t the reality of what this stuff looks like.

I have never in my life been so scared.

#ComplexPosttraumaticStressDisorder #CPTSD #GeneralizedAnxietyDisorder #Anxiety #Agoraphobia #PanicAttacks #PTSD #Trauma #CheckInWithMe #ADHD #WritingThroughIt #ChronicIllness #Disability #ChronicMigraines #ChronicVestibularMigraine

43 reactions 25 comments

“We work with survivors not for survivors.” Experiences after surviving dv: Homelessness, food insecurity, disability, betrayal trauma, med trauma

Okay. I hope this goes better this time

Now I am homeless but sheltered
Impending street homelessness
I am disabled

I haven’t been on my medication for one of my disabling conditions #ChronicMigraines #ChronicVestibularMigraine #Migraine

I am staying with my former best friend. My matron of honor, grad school classmate, colleague, and the first woman I made friends with in my new “home” in 2009.
We cohosted parties at my place because no one else had a place of their own. I cooked meals for my friend, I hosted game night every weekend.
Now that I’m at her place (at her insistence ), I am excluded from celebrations.
Imagine walking in to cake and ice cream and pizza, and not being talked to, not being acknowledged, not being allowed to have any of it even though you don’t really have enough money to eat.

I cannot access resources such as food because my conditions have gone without appropriate treatment in years. I have such severe #Agoraphobia #PanicAttacks that I will have them in stores in front of everyone while trying to internalize most symptoms. I cannot make decisions because I don’t have the money to get all the things I need and it’s becoming increasingly more difficult for me to prioritize when I have gone without for so long. I cannot access my storage unit because I have been displaced so many times across this city- I’m almost an hour away from it now. Not to mention, the #Trauma and triggers with my #ComplexPosttraumaticStressDisorder #CPTSD
It is also almost pointless to

I don’t draw attention to any of it. I just go without. Except I tell my providers as much as I remember.

I don’t know how I’m going to survive living in my car in about a month (if I’m lucky to have a month). Especially with chronic pain. I need my ice packs. I will be off another medication because I won’t have access to a fridge. I have already missed so many of these doses because of being displaced or not having an address.

Every agency I work with knows this is my only option at this time. Yet they are treating me like I’m asking for the moon when I just ask them to keep looking with me.

My safe agency said “we work with survivors not for survivors.”

I cannot believe the director said that to me. She knows, she has personally worked with me. People who have truly seen what I have been through- my good nature despite it all, my tireless work, all of the knowledge I work to obtain, the resources, the phone calls and appointments and meds:
How dare they say they are working for me when I am the only one living this every single day. When I have been so patient. When they over promised. You cannot blame me for your over promise and my completely understandable devastation when my safety is at risk.

It feels like they are being given a line to say no matter what I say, no matter what point I make. It sounds like they are just repeating it without listening to what i am saying- even though I know what I am talking about, am very insightful, and patient. The thing is- the director who over promised, she won’t talk to me on the phone and is only getting pieces of emails when I’m triggered. She isn’t getting my side of the story. THIS IS NOT TRAUMA INFORMED. This is not how a domestic violence agency should operate. My life hasn’t existed within the realm of should in a decade but everyone else seems to still use that word.

My education is being used as weapon to other me from other survivors.

Oh- tomorrow marks three weeks off my #ADHD meds for the second time this year 🫠🙃

There is so much more.

#DomesticAbuseSurvivors #WritingThroughIt #Anxiety #GeneralizedAnxietyDisorder

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Truths Are Blurted Out Which Health Conceals

I think there are few writers who have tackled chronic illness with the finesse equal to Virginia Woolf’s “On Being Ill” essay, and our community is so much better for it 🤍

Somehow she manages to say so much in the few lines within this quote. Illness is indeed a part of every person’s human experience. Yet sadly very few able bodied souls seem capable of remembering their worst moments of having to soldier on whilst sick, and allowing this to inform their sense of empathy when it comes to those of us who have been soldiering on for years, if not decades.

Our battle with chronic illness, fatigue, and pain, acutely enhances our perceptions. You cannot be unchanged by long term illness. We alter the courses of our lives, we alter how we face the day, and inevitably many of us—willingly or not—alter our relationships. Many things simply become unsustainable, and these alterations irrecoverably change us.

And, whether it is topics of conversation that previously you would have considered taboo, or our falling standards of vanity, self consciousness too is inevitably eroded and reduced. Such that support group chats about strange bowel movements become not only common, but at times become quite detailed. And nobody minds, because we’re all stuck in the same metaphorical boat of having to self advocate, and self research.

Loss of vanity creeps in slowly. One of the first things I remember doing was growing my hair out so I could braid it and not have to style it anymore. Those of us with #MultipleChemicalSensitivity find that hair dyes and nail polishes become too irritating. I switched to natural versions, but as my health worsened, eventually I lost the will to engage in these little vanities altogether.

At some point your hygiene standards become less of a priority, and skipping baths or showers seems a prudent way of saving spoons. Wet wipes become good substitutes and in winter, you’re just about prepared to be sewn into your clothing for the season as they used to do in the Middle Ages. And with the worst of health things like makeup, regular haircuts, high heels, jewellery and such, become but a distant memory.

Reduced capacity to thrive brings out all sorts of confessions. Which to their credit, our partners most often find themselves unofficially ordained, and on the other side of the curtain. Regrets, memories, anger, and hurt. When you have nothing but time, and lack the energy to participate in life, it all comes tumbling out in the wash.

Most recently I found myself confessing to my husband that occasionally I can’t help but wonder if hubris is keeping me alive, and whether he might be better off without me. Not to say that I have any intention to laden my pockets, and wade into the River Virginia. My mind however does spend an awful amount of time dwelling next to it’s riverbanks. My mind’s eye fixed on the current, trying to decode what it all means, and where exactly I stand in the great equation called life.

Fully cognisant that there are millions of years behind our evolution, many more millennia yet to come, and in a cosmos made up of infinite planets and possibilities. Such that one day none of it will matter at all. All evidence of my existence will eventually disappear. And it is this knowledge that forces me back to the one truth that I have come to know; all that really matters is the here, and the now.

As Virginia Woolf so aptly concludes, “truths are blurted out which health conceals”.

#MyCondition #ChronicIllness #MightyBookClub #Spoonie #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #ChronicPain #WritingThroughIt

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The Bare Necessities, Mother Nature’s Recipe

Lately, I manage about a once or twice week evening stroll with the better half and the dogs. We are lucky to have a woodland walk nearby our house, where we can let the dogs out the car to roam and not worry about walking too far—the scamps are mainly there for the smells.

Tonight we came across a deer on the road and waited patiently for it to cross the path. Of course, the Duke and Little Spare immediately went into tracker mode while I picked some fresh nettle tops to make into pink tea. As I was walking this little blossom tumbled into my hand making me felt like spring was shaking my hand.

I know it doesn’t sound all that special, but after I was hospitalised amd became partially bedbound, the mundane has became exciting again. And for me it truly is a whole lot of small things that when strung together, become the bare necessities that help me to forget about my worries and my strife ☺️

#Thoughts #WritingThroughIt #DidAThing #ChronicIllness #MyCondition #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue #TheLittleThings #DistractMe

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Support group

I have been attending a support group for #DomesticAbuseSurvivors at an agency for seven years. I always felt supported by them until I became homeless.
When we knew I was at risk (and highly likely) to not have a home, I was promised support.
When I became homeless, those promises stopped. Most of that support fell away. My immediate crisis is no longer being problem solved by those professionals who promised me they would help me.
There was another thing that happened where the group facilitators basically talked about my situation with a group member when I wasn’t in group. She was another person who said she would help me and then didn’t. When I found out they talked about my situation when I wasn’t there, I was really hurt and stopped attending group.
I ended up in another abusive relationship. Pretty clearly because I am homeless and despite having three agencies involved in my case.
I am now in a new support group at the same agency. One of the facilitators from that previous group is now in a director role. She knows my situation very well but it doesn’t seem to matter because despite her promises two years ago, she stopped actively working on my case. I really loved this facilitator until all of this happened. It’s super disappointing.

Okay- so the new group
I am just starting to open up. I said I wanted to share a therapy box i received from an organization. They told me no because they didn’t want me to share a clinical tool. I told them it isn’t clinical (a lot of typical and necessary grounding tools, some journals, and a couple of workbooks available at any major bookstore) and that I have the background to explain why these things work for me (I hold a specialist degree in school psychology). They still told me no.
I became triggered because, quite honestly, I didn’t expect that. I ended up telling them I had to go shortly after my check in when they started talking about music therapy (sooooo I can’t talk about fidgets and candy and journals because it is too clinical but you all can talk about music therapy???).
I have never left group in the middle of it before. I have never been told not to share my knowledge. I have never been told I am too clinical. I have always had the opposite response where people appreciate the knowledge. I don’t present myself as “superior,” nor do people see me that way when I do share info.
I’m really hurt by this because it feels like when I finally had something positive to share, I was shut down.
I tried explaining it a couple of times to the staff there but I don’t feel like they actually got it.
At this point, there isn’t a way I can access another group or agency until I am safely housed because it just isn’t going to be able to happen. I’m navigating major crises several times a week. Trying to put forth the effort to switch when my body isn’t even safe isn’t going to happen. Especially knowing how little help is actually available. I just mostly wanted to vent here.

Thank you to anyone who reads any of this and responds because I am really really really struggling with so much.

#ComplexPosttraumaticStressDisorder #CPTSD #Agoraphobia #Anxiety #PanicAttacks #WritingThroughIt #CheckInWithMe

25 reactions 10 comments

Loss of Assistance/High Anxiety/Burnout #AnxietyAttack #AnxietyTriggers

This morning I found out suddenly that I lost my medical assistance because of my higher income. I am shopping around for medical insurance but I’m too anxious to focus. This was the last thing I needed to hear today. I have to testify in court on Tuesday and that has me worked up enough. I feel so mentally and emotionally exhausted. I’ll cry for no reason sometimes. I’m so tired and not just physically. I can’t describe it. I don’t know what I’ll do until I find a new psychiatrist and new therapist. I kind of figured this would happen but I wasn’t expecting it today. I set up a therapy appointment for Wednesday which I might still be able to do I hope. If not, I’m afraid of what will happen. Therapy gave me a space to process my trauma. I don’t want to go back to life without medication. It was really bad. The medication is what helps me to manage most of my symptoms especially the Bipolar Disorder. I was in DBT therapy and that taught me a lot. I feel without these things that everything will fall apart again. I just need help and encouragement right now. I don’t mean to vent but this has been consuming me and I feel if I don’t talk about it I will start having self destructive thoughts again. I know there are crisis numbers I can call but I’m trying hard to avoid that. I’m trying to stick to a routine and stay positive about things but right now that seems nearly impossible. I appreciate any comments. I just feel so burnt out right now. Well that’s all for now. If you made it this far, thanks.

#PTSD #BipolarDisorder #BorderlinePersonalityDisorder #SexualAbuse #SexualAssault #EmotionalAbuse #Anxiety #MentalHealth #needhelp #WritingThroughIt #CheckInWithMe #ChildhoodAbuse #Vent

17 reactions 4 comments

Crisis Survival

What I’m most afraid of is going into a crisis after this event that I have to attend. I’ve worked so hard to stay out of the hospital. I’m afraid that all of my progress will be pushed backwards because my PTSD will be acting up. I know it’s normal to feel triggered when facing the person that hurt you but I also don’t want to go into a crisis. The event is less than 2 weeks away. What can I do?

#PTSD #AnxietyAttack #CheerMeOn #CheckInWithMe #WritingThroughIt #Trauma

11 reactions 6 comments

I need help- ten hours later

I tried posting last night
I am still having a hard time understanding what happened but I am not doing well. I don’t feel real. There has been so much that has happened the last couple of years that people truly don’t believe me when I try to get help. I have had to refer them to my therapist to give them the “she isn’t making this up” affirmation in order to establish the belief in my story.
She can’t be my therapist anymore. She switched jobs recently and she doesn’t take the insurance I just switched to so I could finally get my migraine medication covered after over a year of not having it
It’s been years. No one has believed me.
Now people see all of the problems and obstacles and deny me help and blame it on me. I just started feeling safe advocating for myself again but I keep experiencing more trauma.
It hasn’t stopped
It sounds like an exaggeration. It’s not.
I don’t want to be told I will find someone else who believes me. I know that is the case. But what am I going to have to go through to get that person? My rights have already been very boldly disregarded by another agency and I am currently trying to get help/awareness for that. I already have tried to ask for help/access services for seven years. It has caused me unbelievable trauma to just try to access help. I haven’t been able to make progress because I have spent years trying to get people to just let me talk without interrupting me to redefine my reality. Or to tell me how to solve a problem they haven’t fully heard.
I have never felt so incredibly alone. I have never truly been this alone
It doesn’t feel like it can be real
#WritingThroughIt #CheckInWithMe #ADHD #ChronicMigraines #ComplexPosttraumaticStressDisorder #CPTSD #Agoraphobia #PanicAttacks #Anxiety

51 reactions 14 comments

Client rights and self advocacy

Hi friends
Things have been weird. I’m getting a little more support outside of the help I gratefully receive here. But I’m feeling really detached and alone.

I’m still finding it hard to be believed. It’s getting a little easier but it’s tiny steps and when something like this happens, I feel discouraged.

I had one of the worst attempts at advocating for myself because the person just constantly told me I was wrong about what I said I was experiencing. She did not let me complete my sentences. The condensation was so clear in her voice. She could hear how much I was struggling to talk and think. I had to stop her and say “ you hear how upset I’m getting, why are you continuing to argue with me?” I had to point out so many obvious things like “as the client advocate of this agency, you are not listening to what I’m saying.” Or “you continue to interrupt me and ask me questions which is why you are not understanding. Let me finish.” (She couldn’t understand why I was bring up something from five years ago… ummmmm if you let me finish you would hear because it’s still not resolved. So trust me- I know it was a long time ago.)
She even found a way to tell me it was my fault that the agency hasn’t been helping me because i only just recently I told the case manager that I’m trying to figure this out. That was last week. I’ve been without services for over a year. Before that, I was getting not even the minimum of what is on my plan. So me saying something this one time doesn’t let them “off the hook.”
She repeatedly said “I just can’t keep this straight.” with the implication it was my fault. I said “as I said before I have ptsd and struggle to communicate, remember, and think clearly.” When I would tell her about things she said “I find that hard to believe,” and “I’ve never heard of that.”
She cut me off at one point and said “are we talking about housing or medicine because you keep switching back and forth” yes- when one doesn’t have access to their basic needs for years, that happens. And since both are equally important for survival it’s hard to not intertwine them. I wish I would have said “I am talking about my basic needs.” Period.
Also- she kept switching back and forth and so I said it back to her.
I’m dissociating more. My flashbacks have been intense. I was having them over the phone while talk to her. I said “I am having flashbacks I am trying to remember.” And she didn’t even acknowledge it or alter her approach. It was like I never said it.

There is so so so much left. It’s weighing so heavy. I have a plan moving forward to… well I guess just get louder. It’s concerning that these individuals are the client advocates for my state’s department of mental health services.

#ComplexPosttraumaticStressDisorder #CPTSD #ChronicMigraines #Migraine #Agoraphobia #PanicAttacks #ADHD #WritingThroughIt #CheckInWithMe #DisabilityAdvocacy #DisabilityRights

21 reactions 9 comments