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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Talk is cheap…

It’s Mental Health Awareness Week, which is, in theory, a good thing. Since all it seems to involve is people on social media saying ‘talk about it’ it is not actually all that helpful.

We absolutely should talk about mental illness more. We should educate our kids about symptoms & how normal it is to experience them. We should put better training in place for teachers, emergency services & NHS staff. We should all try harder not to judge or shirk away from people who are struggling. Employers should be flexible with staff dealing with mental illness. There should be more information, more understanding, more honesty. Yes, we should talk about it. Asking for help it definitely a good idea. All of these things are important & valid, but there’s still something missing from the conversation.

What happens when you do speak openly & no one listens (or seems to care). Can we talk about all the people who gathered all their courage &!swallowed their pride to ask for help and didn’t get any? Can we address the fact that as hard as is it to say ‘I’m not ok’, it’s a million times harder to hear ‘tough luck’ in response.

We do need to talk about mental illness, but we also need to listen and act. Funding is of course part of the problem. The NHS is chronically underfunded & mental health is the poor cousin. For all the political talk of parity between physical & mental illness, there has been little change to waiting times or scarcity of vital mental health services. Very often waiting to even be assessed by a mental health team is a long process. In my area the wait for psychologist input is 4months (that’s relatively short), in practise you’ll be waiting longer because you will first have to be referred & assessed before anyone even adds you to that list. During all this waiting time people can have no professional support.

Then there are the multitude who are deemed ‘not sick enough’. To be fair this has always been an issue due to stigma & ignorance. Lack of funding exacerbates the problem. When services are so stretched, access to those resources become limited. Lots of people who seek help for mental health problems are basically told to manage it themselves. Get some exercise, reduce your stress, get out more. When you summon your strength to talk about things that frighten you and are told it’s no big deal, it’s hard not to feel even more pathetic. It is difficult not to feel shutdown. Repeat that scenario more than once & people give up. Likewise for those who are informed that they’re not quite ill enough to warrant intervention. All that talk of early warning signs & speaking up doesn’t translate into much action. Having a professional ask you to wait & see if your health declines before they will help you is a kick in the gut. When you know that getting worse means your entire life falling apart, it’s not unreasonable to prefer to be proactive. When you don’t know what’s happening to you all, it is terrifying. So, yes, we do need to talk about it. I will always encourage people to ask for help. I will always strive to remove the shame of admitting you need assistance. I’ll also continue to demand that we talk about what happens after you take that step. We cannot ignore the fact that asking for help does not guarantee receiving it. We must acknowledge all the people for whom no treatment has been forthcoming & stop pretending that the problem isn’t much, much bigger.

People die because they did talk about it & nothing changed. Can we start talking about that?