Another little bit gets lost…

I am not ok. I’m never really ok, but right now, I am especially not. Long covid is ravaging my life. Six months since testing positive & no improvement in the ‘left over’ symptoms. I’m really scared that I am going to be stuck like this indefinitely.

The breathlessness & tachycardia are relentless. The slightest exertion leaves my heart racing. I can’t stand long enough to brush my teeth. Moving from room to room requires a sit down recovery period. My pain & gastric symptoms have all been intensified. They show no signs of easing. Fatigue is overwhelming. My brain often feels like mush. I lose track of what I am saying mid sentence, I need lists & alarms to remember anything. I cannot get anything done.

Pulse oximeter  with heart rate at 180 & oxygen 95

Keeping up with normal life admin is a constant struggle. Cooking, cleaning, laundry, washing my damn hair have gone from difficult to near impossible tasks. Getting dressed is a mission. Trying to work is a lottery. Maybe today will be the wonderful day my brain & body both allow productivity. More likely, I will spend a week doing ten minute spurts of writing. What used to take a morning now feels like completing my magnum opus. I rarely have the energy to leave the house. A trip to the drs or an afternoon in company takes days to get over. Everything hurts massively all the time. I’m exhausted all the time. My heart pounds & my breath escapes me. Eating more often than it results vomiting. My life is getting smaller & smaller. I’m frightened.

There are no good days. Never an opportunity to catch up. I’m in a continual state of anxiety over all the things that never get taken care of. I feel useless. Stuck. I wasn’t in great shape to begin with. There were always limitations, but now they are endless. I can’t see any solution; there is no one else to do what I can’t. Even if there were, it would decimate my mental health to be that reliant.

Doctors don’t have the answers. Nor do they have the resources for many of the treatments they’d like to offer. Every referral is waiting list. My existing conditions are running riot & symptom flares do not respond to previously effective interventions. It is exceptionally hard not to feel hopeless.

Ly is wearing sunglasses, face mask &  hospital gown and standing in front of x ray sign

I’ve been here before. Each time I’ve reached a new spoonie milestone it has been hard.Realising the pain would never entirely go away, each new diagnosis, having to use a walking stick. They all took time to accept. More time to learn how to manage. Every time I add something to the list of things I simply can’t do anymore it hurts. I’ve grieved so many versions of myself. I have long let go of the idea of a normal life. This feels different. It’s not an adjustment, it is shifting most of my life into the can’t do column. No one can tell me if this will ever get better. Or worse.

It’s testing me on every level. Keeping my mental health afloat is getting harder. I have no control over this. If I push myself I feel worse for longer. I am helpless and useless. My head has no off switch. I fret about the mounting piles of unattended business. My life feels simultaneously hectic and ground to an absolute stop. The stress is too much. The pain is too much. The fatigue is too much. Every inch of living feels too hard.

All the while, life goes on. Bills need to be paid, grass cut, deadlines met. I have responsibilities & commitments. Covid isn’t anyone’s fault. I am acutely aware of how many have lost more. As guilty as I feel, that doesn’t make this any easier. I think maybe I needed to say it out loud. I am no ok. Not even close.

The words I’m not ok on black background

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Wake me up inside…

Today I saw another one of those social media that purports to offer alternatives to self harm. This time the post also claimed that sharing this information would save lives.

I’m just going to be completely honest, this bull isn’t saving any lives. These are not credible alternatives to self harm. They will not stop an ill person from hurting themselves. They don’t solve the problem of why a person might feel the need to hurt themselves; they don’t even address it. In fact, in some cases they reaffirm the idea that hurting yourself is a good coping mechanism (just so long as you do it in a socially acceptable manner).

I’ve talked & written about why these suggestions are insulting until i’m blue in the face. I see others giving excellent arguments against such advice & yet this sort of thing is still the only information disseminated in the mainstream. So, I thought I’d try to talk about what actually can help one refrain from hurting oneself.

My suggestions are more complicated & time consuming & bloody hard. They don’t lend themselves to becoming a jaunty list to share in Twitter. The grim reality is that self harm is a grind and so is quitting.

Blood stained foot

For me the first step in getting anywhere close to stopping was understanding why I started in the first place. I truly believe understanding why a person self harms is crucial to recovery. Self harm isn’t the illness, it’s a symptom of it. From the outside identifying what is distressing you might seem simple, but trust me, it isn’t. There can be layers of trauma & hurt. A person may have a lifetime of issues woven into a complex fabric of pathologies. Picking that apart is intensely painful. Having pulled on that dangerous thread, you’re going to have to find ways address those underlying problems. They don’t simply disappear under a bright light. It takes time, professional guidance & huge bravery.

And that’s just the beginning. Next you have discern what you get from self harm; how is it helping you cope. What function is inflicting pain serving. Again, this is no simple puzzle to solve. My self harm had many roles. I was punishing myself, I hated the body that had failed me, I was avoiding emotions I couldn’t cope with, the blood was cathartic, I became addicted & a multitude of other reasons. Predictably totting up all the pay offs doesn’t negate them. There is more work to be done. One must weigh how healthy each function is and decide if it enhances ones life. For instance, probably not a great idea to be continually forcing myself to do penance, however it is a good idea to not be completely overwhelmed by sadness. You must find away to live without the unhealthy whilst also establishing new mechanisms to maintain essential uses. Of course all the time you are working away at your inner self you are dealing with addiction. Self harm is habit forming. So, your journey of self discovery/healing/madness has a background of overwhelming urges & powerful compulsions. To begin with you have to fight the full force of addiction every single moment of every single day. Plus, of course, everyone has their own additional problems to throw into the mix. Maybe you have co morbidities or financial problems or a family you’re trying not mess up with your illness. Life doesn’t stop when crazy calls.

None of this easy. It does not and cannot happen over night. It involves breaking down long held beliefs & opening yourself up to being scared and vulnerable. This post is just a simplified version of a process that takes years. It involves psychiatric professionals, medical intervention, medication, therapy, a support network, a&e visits & most of all trying to be honest. I understand why it’s easier to pretend you can draw on your skin or scream at a wall until you’re better. It is terrifying to a/ begin trying access the kind of intensive help needed & b/ expose yourself to pain you’ve been desperately trying to suppress. Believe me, selling yourself & others a lie is not the answer.

The truth is there are no tips & tricks for beating self harm. There is no magic fix or complete cure. I look at it like any other addiction. I will probably always want to cut, I have to do whatever I can not to. No amount of extremely cold water will ever change that harsh fact. When it comes right down to it, for me, the driving force in abstaining is knowing that I want other things more than I want to pick up that scalpel. Oh & sheer will power. I couldn’t have come to that realisation without more than a decade of therapy. I absolutely could never have exercised this level of control over the voice in my own head without putting in all that work.

I’m not going to say everyone’s story is the same as mine. I can’t guarantee that you can ever get completely better. I’m not. I can only offer you the hard truth of my experience & my certainty that there aren’t any shortcuts. Don’t share false hope. Let’s be honest with people who really need it. Trying to quit self harm is a nightmare, but there is hope that you’ll wake up.