Over the faultline…

In a previous post I discussed some developments with my long covid debacle. I had to wait a while to see a specialist and have some tests done, but I am now closer to a diagnosis. I will speak on that later as I have two more tests to under go before that is finalised.

I am feeling deflated. My appointment this week didn’t hold any surprises, but there weren’t answers either. The consultant couldn’t give me any opinion on whether my current symptoms would improve or resolve. She also didn’t have any suggestions to improve symptoms that I am not already doing. Drs still have a lot of ‘don’t knows’ when it comes to long covid. That’s not anyone’s fault, but it is incredibly difficult to deal with. As I have said before, the thought of being stuck in my current condition is terrifying.

Large modern glass and steel hospital building

I am trapped within by body’s limitations. I feel useless and unreliable. In the last two weeks I have had to miss a funeral, reschedule medical appointments & cancel just hanging out at my friend’s house because I was too ill to get out of the house. I can’t keep up with housework or actual work. I am almost always saying no. When I see my niblings I can’t play the way I want to. I can’t help out my Mum friends/family the way I want to and used to. I can’t visit friends I haven’t seen since pre pandemic because the night before I am due to go I end up in hospital. Any outing I can make I constantly interrupt with my need to rest. People always have to ask if I am ok, if I can manage and so on. I hate it. I don’t want the people I love to be worried about me all the time. I make everything harder for everyone.

Women’s legs on a bench with handbag and walking stick

For me this is failing on all fronts. I’m not doing anything well. Doing everything that has been suggested to help and having no improvement is so dispiriting. Gentle exercise might help, but too much will exacerbate symptoms. I struggle to do 5 mins of gentle yoga stretches without getting so dizzy I pass out. Swimming is great, but I’ve been advised not to go alone. I’ve doubled my fluid intake. I’m resting and doing all the recommended exercises when I am sat down. I stand up slowly, clench muscles and don’t stay in the same position too long. I’ve gone for every test and treatment. I’m utilising every trick in my pain relief deck. I’ve cut back, more rest days, meditate, take deep breaths. Nothing works. My pain levels have not reduced. Dizziness & fainting will not abate. My heart continues to race and I can never get a breath. The brain fog is the worst I have ever experienced. No one has any other help to offer me.

California fault line

I don’t know how to adapt to this. It is very hard to see how I live a fulfilling life in this state. I know I have felt this way before and found a way, but my horizons keep shrinking. Hopefully it will get better or I will rise to the challenge. Right at this moment I don’t know how to do that. I am more stuck than I have ever been.

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Don’t forget to shout…

Today is World Suicide Prevention Day. It’s a wet, grey day & my mood is bleak, so it seems like an apt day to talk about suicide. Although, to be honest I want you to do more than talk about it.

Suicidal ideation impacts the lives of more people than you would imagine (1 in 5). It’s not rare for a person to reach a point where they are so desperate that they just don’t want to continue. In my experience those thoughts are insidious. Once you have seriously considered ending your life, it enters the sphere of available options. So, whilst I absolutely do not want to die; I can’t deny that occasionally at really bad times ‘kill myself’ would be the last entry on my list of possibilities. What makes it a remote last resort rather than an actual risk is a combination of factors. People love me, I love them, there is joy & purpose in my life. The only reason I can recognise & enjoy those factors is years of intensive support from mental health professionals. I am grateful for the people who stood by & helped me access the treatment I needed because without that professional intervention, I would certainly be dead.

World suicide prevention day

So, yes, I do want to us all to talk about this. I want to break the taboo. I want people suffering to not be silenced by shame. It is important that you listen to loved ones in trouble. It matters that you care, but what is even more important is that there are effective mental health services to seek help from. Talking & listening isn’t going to save anyone unless it’s backed up by solid treatment. In short, we need better mental health services.

There is no point in asking people to reach out for help when none is available. A cup of tea & chat with a friend is nice, but it will not solve the underlying issues that lead to suicide. We need to be able to offer people more than a 6 month waiting list for a hand full of CBT sessions. When your loved ones tells you they want to die, you should be able to take them to a dr & get them immediate help. Instead the current response is often no beds & here’s a crisis team number.

I want you talk about suicide. I want you talk about mental illness. I also want you to do more. Don’t vote for people who will continue to decimate the NHS. Find out how the mental health services are performing in your area. Write to your Mp/Msp about provision of those mental health services. Sign petitions. Write to newspapers. Share your experiences. Do everything within your power to raise the profile of mental health services. We are failing really vulnerable people everyday. We beg them to ask for help & then tell them none is available. If you really want to help those struggling with suicidal thoughts, you have to do more than talk. We have to fight to give them another credible way to end their pain.

Actions speak louder than words

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