Writing Through It

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

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

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

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