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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Just give me a reason…

I’m lost. I’ve spent this year trying to reposition my future & navigate the present. I have tried new things, met new people, considered a million & one possible permutations of the next 30 years. I remain astray.

I’ve always had an ultimate goal to strive for. I had one non negotiable role. Motherhood was at the centre of all my plans. It was a reason to do better and the motivation to persevere. I worked so hard on building a safe, comfortable nest. I fixed all the parts of me that could be corrected. Found a way to accept the parts that couldn’t. I believed I had a purpose. I wanted children powerfully enough to force myself into viability.

When it became clear that it wasn’t going to happen I was destroyed. I knew I’d have to fight hard to create some other life. I was aware it would be painful, but I really did believe I could lay a new path. Life’s been a fucking journey so far, but I somehow eventually arrive at ok. I thought I could do it again. I told myself I needed time to grieve, to heal, to process. Then I decided I must push a little. Or a lot. Get to the next step professionally. Say yes to things that scare me. Date fun people, keep an open mind, pay attention to what makes me feel good. If I keep moving I’ll stumble upon my new direction, right? Wrong.

Happiness ahead in lights

11 months of forcing myself to breath. Smiling, rascalling, writing, resting, networking, researching, grabbing hold of anything that sparks any kind of anything. Honestly, it is getting harder. There is no deeper meaning to my efforts. I’m proud of work success. I am grateful for all my gorgeous people. I have love and opportunity. My life is mostly in colour. It’s just very hard to keep the grey from seeping in. Even harder to convince myself it adds up to a reason for being.

I’m hollow with zero ideas of what I should be full of. I’m still at the reminding myself of reality stage. Checking myself daily. I don’t need to remember that gorgeous Swedish name because I won’t be naming anyone. Reading that piece on delayed cord cutting is futile. I should get rid of the paint for the spare room. Forget all my child rearing dreams & schemes. Thinking of this stuff only causes pain, but I have nothing to replace it with.

Search lights fanning out of darkness

I don’t know what to do. I’m not entirely sure I even know who I am anymore. One day at a time is good and well temporarily. It does not hold up as a long term protocol. When everyone else takes their children home there has to be something that makes my life feel significant. I need a reason. I need more.

All by myself…

I’m an ‘independent woman’. I’ve lived alone for basically my whole adult life. I take care of myself (I pay folk to do the manual labour, but still). I enjoy my own company. I can usually get by without too much hand holding.

I have, however, recently become aware of an infuriating blip in my self sufficiency. Since becoming single again I have noticed that I can’t go to the cinema alone. It wouldn’t be a big deal, except for the fact that I love seeing films on the big screen. I used to go weekly with my sister, but the advent of her baba has ruled that out. Almost all of my friends also have little ones. The few that don’t, live in different cities. Obviously, I no longer have a boyfriend to view blockbusters with & the cinema isn’t really a good date place. Which leaves me with, go alone (until I line up a cinema buddy) or don’t go at all. Neither of which felt appealing.

With each passing film that I had really wanted to see I have grown more frustrated with myself. Why can’t I go to cinema alone? I can’t think of much else that I wouldn’t do alone. I’ve travelled solo and eating out by myself doesn’t bother me. I have no problem sitting in bar or cafe, whiling a away an hour or two in my own company. I love living alone, to be honest I think it’s my preference. I attend scary medical appointments and pursue a variety of opportunities alone. Sitting in a darkened room staring at a screen unaccompanied shouldn’t be an issue. I can handle big grown up things without a partner. Why can’t I tackle something so trivial?

The only thing I could come up with is some weird insecurity about being judged. Would people think I don’t have any friends? Are strangers going to think I’m a loser? The obvious answer to these questions is who cares! I’ve never given much credence to the opinions of randoms. I’m not sure why I would start now. Yet, the anxiety persisted. There are of course lots of things that I felt worried about doing alone. Loads of occasions when I required back up or missed an event because I couldn’t face a crowd without a buffer. Whilst, not ideal, I can accept that as part of life with mental health difficulties. I couldn’t, though, make myself ok with just giving up a thing I regularly enjoy.

So, to utilise a cliche, I faced my fears. Full disclosure, I made it really easy. I picked a 10.30am screening when the cinema is practically empty. I also booked my ticket online. Thus minimising the amount of actual person to person contact I had to engage in. I did have all those negative thoughts running through my head. I did it anyway.

I can’t say that I was aware of anyone paying attention to my solo status. Note to everyone, hardly anyone cares about what the people around them look like, wear, are doing & so on. For the most part we’re all too busy dealing with the nonsense that’s going on in our own lives/days/heads. In short, if at all possible, do the thing. Don’t give yourself a hard time if you can’t manage every thing, but at least attempt anything close to manageable. It feels really bloody good to meet even little challenges.

My first me, myself & I movie was Long Shot. It’s not a classic rom com, but it is cute. I find Rogen’s charming outcast bit pretty attractive & there were enough feels to keep me interested. Definitely not a bad way to spend a Monday morning. Oh & I won’t have to see a superhero movie next time. Single life is actually pretty good.

Look back in anger…

I’m angry. So angry that it’s hard to contain. The problem is there’s no specific target for my rage. It’s a generalised, tear everything down kind of fury. There’s no release. I can’t spew my anger over unsuspecting bystanders. Keeping it in doesn’t feel like a viable solution either. Where does one put all the free floating resentment that no one is actually to blame for?

Life isn’t fair. I came to terms with that fact a long time ago. I’ve accepted a lot of bullshit. Fought crazy & illness & disability & mistreatment & loss to build some sort of something. I’ve struggled, but I’ve rolled with the punches as best I could. There’s only ever been one thing that I’ve felt I couldn’t do without. One single imperative. When you’re willing to get by without so many things, it feels so desperately unfair to be denied the thing that would make it all ok.

I watch everyone around me do the thing I cannot. Some with such ease it leaves me breathless. For others it’s a harder journey, but they reach their destination. I love those people and I love their babies, but it’s so hard to be the only one stranded.

I’m angry that I have to do this again. I’ve been tricked into hoping. Now I have to deal with the fall out. I am mad at myself for being stupid enough to believe. I resent having to submit to medical interventions. I didn’t ever want to hear someone say they can’t find a heartbeat again or look at another bloody speculum. I’m furious that I’m still bleeding and that I have to cope with all that triggers. It’s agony to be constantly reminded that my body has failed again. It’s exhausting to face the nightmares and flashbacks of all other blood. I don’t want to relive each of the worst moments of my life whilst trying to get through this one. I’m sick of blood tests and transfusions and putting on a brave face. I hate that I don’t get to opt out. I’m not strong, I just don’t have option of walking away because it’s too hard.

I don’t understand why it has to be me. Why my babies keep dying when I want them so much. Why does the universe give life to those who can’t or won’t love their children? Every time I read a horror story of abuse it feels like a personal attack. I think of all those terrified pregnant teens, the adult women who can’t feed another mouth or just never wanted to parent and I wonder why it couldn’t be me instead. I’m not angry at the individuals; everyone should have the right to choose. I’m furious at whoever or whatever makes decisions. What could I possibly have done that disqualifies me?

I see people smoking as they hold their child and I have to restrain my scream. Each impatient, inappropriate or lazy exchange between a parent & child kills me. Even the standard complaints about bring tired and tantrums make me feel like punching someone. I know I’m not being fair, but it’s like bitching about your diet to the starving. Don’t they know what a miracle they’ve created? How can they forget how much that little person needs them to do the right thing. I know it isn’t easy. Kids are exhausting and all consuming, but they’re worth it. The joy outweighs the sacrifice.

I’ve had enough therapy to know that burying your feelings is never helpful. I know I can’t dig a deep enough hole for this much emotion, but I have no idea where else to put it. I can’t lose it with every person who is rude or mildly inconveniences me. I have no desire or intention of venting on the people I love. I used to work this shit out with a scalpel. That’s no longer an option. What do I do?