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Another little bit gets lost…

~ somethinginthewayshemoves

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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I give up…

~ somethinginthewayshemoves ~ 8 Comments

The universe is determined to give me opportunities to discover social faux pas. The events of the last weeks have revealed to me a host of new things that lots of people say when one talks about miscarriage. The vast majority of these comments are very well meant, but nonetheless, have considerably missed the mark.

Being open about having had multiple miscarriages seems to unfurl two main threads of conversation. The most prolific being enquiries as to why it keeps happening and what I have done about it. I think I know why people ask these questions. Partly fear, no one wants this to happen to them. I suppose people think if they know the whys they can avoid it or fix the problem. The other side being an assumption that everything can be fixed. I understand that, we are so used to living in a world where things can be cured or treated. I know from having chronic conditions that people are often confused to learn that some things can not be corrected. In the case or recurrent miscarriage this enquiry is unhelpful for variety of reasons. Firstly miscarriage, recurrent miscarriage and infertility often fall into the category of ‘don’t know’. About half of those who suffer recurrent miscarriage are unable to find a reason after testing. I am one of those people. I have had all the standard tests and investigations to little avail. I did have some adhesions that were successfully removed and I have PCOS, but no Dr I have consulted believes that to be the cause. The short answer is, no one knows. Asking this question isn’t helpful. If a person doesn’t know, you’re just underling that difficult fact by making them explain it again. If they do, they may not want to discuss such private and sensitive information with you or anyone else.

Offshoots of this such as, Have you seen a Dr about this? You should get another opinion, My friend did such & such or surely there must be something they can do, are unwelcome. I have had four miscarriages. I have lost four children that I desperately wanted. Of course I have done everything within my power to find out why and prevent it from happening again. The suggestion that I haven’t offends me. It indicates that you think I am either stupid or careless. I understand that wasn’t the intention, but please, think before you speak. It’s also important to be aware that the NHS usually won’t begin these investigations until after a third miscarriage. Not everyone has the resources to seek private medical treatment. Anyone in that situation doesn’t need nosey salt in their wounds.

The other comments this loss has garnered are of the don’t give up variety. A lot of people have reached out to tell me there’s always hope. The have shared their own experiences of loss or struggles to conceive and assured me that miracles happens. That they eventually had their baby and it was all worth it. I know you think you are helping. I know you are trying to be kind. Let me just say this, not everyone gets a miracle. We are not all able to try again. There are limits to what the body can do, physically & emotionally. There are time constraints. Relationship constraints. Financial constraints. At this moment I don’t feel like I have another try in me. Losing another baby would destroy me. Maybe I will feel differently in the future (it would have to be the fairly near future), but I don’t think so. Facing the reality of my limitations is not weak. Recognising that I can not square this circle is not giving up.

I don’t intend this as an attack. I realise these aren’t purposeful attempts to hurt. I just want to have an open discourse. I think these confusions arise because we don’t talk about this topic enough. If you want to offer support to someone who has suffered this kind of loss it will be appreciated. Simply offering your condolences and assurances that you are available is enough. Respect that everyone grieves differently and your kindness will cherished.

 

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