Why am I like this?

If you are a regular reader you will know that I have been going through a process of diagnosis related to Long Covid complications. I had hoped that I would have definitive answers by now, but alas, my body is being a dick.

When last we spoke I was awaiting tests to confirm or rule out POTS. Well, after it seemed unsafe to continue with the first part of that test, the second was scrapped. Now I have more waiting to do. The consultant will decide our next move. I’m really disappointed as I had thought we were close to diagnosis. I know the idea of hoping for positive tests might sound strange to most, but the sooner my condition is labelled, the sooner it can be treated. Being chronically involves so much limbo. Waiting to see drs, waiting for tests, waiting for treatment, waiting to see if you respond. Having someone say this is definitely the problem and here is the plan, is a huge relief.

White women wearing large glasses and a mask is looking at camera
Worn out after test fails.

In the meantime my spoonie adventures continue. Lots of pain, fatigue and dizziness are the norm. Fainting at the drop of a hat and constantly fighting to catch my breath have further restricted my activities. I spend way too much time at hospital appointments, and too little doing what I love. I’m struggling, but trying to remain even a little upbeat. On we go.

Long hospital corridor

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I give up…

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.

 

You should see my scars… 

Today is self injury awareness day. I’ll be honest I’m fairly jaded about awareness days. Especially those of the mental health variety. Too often they seem to me to be highlighting the wrong things. Today hasn’t broken the mold. Almost everything I have read in relation to self injury awareness day (SIAD) has focused on the usual stereotypes. Some have just missed the point entirely. So, I have decided to share a little of what goes on in the head of a person who is hurting themselves Specifically, this person. 

I don’t fit the stereotypes. I didn’t hurt myself as a teen. I wasn’t bullied & had a picture perfect childhood. I was never desirous of attention or seeking care in the form of dressings & kind medical professionals (ha!). I’m not stupid or dangerous or crazy. I have fought this battle as an articulate, independent adult. I’ve hidden wounds & scars through university & work alike. I kept a secret shrouded in stigma. Constantly confronted with the idea that my problem was one that should only face little girls. Shamed by the opinion that I am an incompetent drama queen. 
I am none of the above. Rather, I am woman who suffered trauma that altered my life. In the depths of anguish I stumbled upon a solution; a maladaptive survival technique. An act sought out to gain control when I felt powerless. Lamentably, my source of control rapidly overtook me & established dominion. Self harm is so complicated. It’s scope is different for each individual. For me, it become all encompassing. My daily thoughts circled around if/when I would cut. Being proficient was paramount. Every cut had to be ‘better’ than the last; I sought deeper wounds, more blood, more damage, more more. Self harm entangled itself into my identity. 

Admitting that & asking for help felt like relinquishing part of my self. Not only was I facing the loss of self harm, but also the strong, capable parts of myself that made me feel worthy. Admitting that I could no longer cope was the most vulnerable I have ever been. Believe me when I say that to face stigma & prejudice in that state is crushing. To gather all your courage to tell a therapist the ugly truth & be faced with a ‘just stop’ attitude is soul destroying. Equally dragging your blood soaked self to a&e only to be treated with disgust can break a person. That the is the problem I & many others most need addressed. 

I believe SIAD should be about acknowledging the complexity of the issue. We should be focusing on changing the attitudes within the medical profession. Yes, let’s educate our communities about mental illness, but let’s also change the entrenched attitudes within the institutions that have the power to destroy lives. The worst stigma I have faced has been from dr’s & nurses who ought to have known better. Stigma is never positive, but I’ll take a hundred ignorant strangers over one cruel dr. Being unable to safely access treatment can kill. We need to take the fight to that front line.