Tag Archives: Psychosis

Chaotic Cancer: A Family Member’s View: First Chemo

Please be aware that some of the content may be triggering. Please take care 💚

This is my view of living with someone who has cancer as someone who has a mental illness. It is my personal experience of the chaotic cancer ride.

A milestone is the first chemotherapy session. It was something we had waited for, for quite a while after diagnosis, or so it seemed. We had a lot of cancellations and changes before the first session took place. Because if the chaotic nature of everything this has taken me some time to write.

Mum had to go to a specialist hospital in London for the first session. This was about an hour’s drive from where we live. It was tricky logistically with having to go up in the days before for blood tests and covid swabs. It was also tiring for my mum.

The stress of the first chemo was immense. It was all so sudden that it came together after all the cancellations and changes. The panic kicked in the night before mum had to go. I couldn’t sleep. I was scared. But I didn’t feel I could show it. I decided I needed to just push it all down. I couldn’t deal with the overwhelming feelings. I needed to just be practical. It was probably not the best idea but how I could cope.

Chemo for mum took a long time. They had trouble with her veins and other things. Plus having three different drugs meant it took all day. She was exhausted by the time she was done and home.

At first, after the chemo, mum didn’t feel too awful and then it hit. She wasn’t sick but felt it. She was very tired and this made her frustrated. Her mind often went blank. It was a difficult time to be at home. Life was just very stressful. I was struggling. I didn’t know how to describe my feelings or what was going on in my head. It was all extremely overwhelming. I didn’t talk to anyone really about how I felt as I didn’t have the words. I just said I was tired, which was true as well.

After the first chemo you think you understand what could happen from what you’ve been told but living it is so different. And if one more person tells us to think positive I think we’ll all scream.

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“I’m Just Tired”: The Truth

Please be aware that some of the content may be triggering. Please take care 💚

I say to you I’m tired. And I am. I’m tired of life. I’m tired of my head. I’m tired of everything I cannot change. I’m tired of fighting.

I say I’m tired. And I am. But I’m hiding behind it. I’m not sure what I feel. I don’t have the capacity to know or understand my feelings so I’m tired will have to do as I’m too tired to work it out.

I’m tired. I’m exhausted. My body and mind don’t want to work. My head is thumping. My limbs are aching. Sleep doesn’t help. I want to be in bed. I want to give up. I want to hide away.

I’m tired. Of being a burden. Of being a failure. Of being a no good human being. Of being the worst of everything. Of always being the one who doesn’t know how to be OK.

I’m tired and I want to go to bed. But I don’t want to ever wake up. I don’t want to face the world anymore. I don’t want to feel anymore. I don’t want to exist anymore.

So yes I’m tired but it’s so much more.

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Chaotic Cancer: A Family Member’s View: Diagnosis

Please be aware that some of the content may be triggering. Please take care 💚

I introduced this series of posts in this blog post ➡️ Chaotic Cancer: A Family Member’s View: Intro. This post is about my mum’s diagnosis of cancer and some information and thoughts surrounding that.

My mum’s cancer was an incidental finding. We had no suspicions that she may have cancer. There were no obvious signs (though looking back we have picked some out). It was far off the radar. I don’t know if this made it easier or harder to deal with. I have no prior experience of anyone I know getting cancer. But it was tough.

Mum went into hospital before Christmas with an inflamed gallbladder. She had antibiotics and came home. About six weeks later at the beginning of February 2021 she had a reoccurrence of the inflamed gallbladder and so they decided to remove it in an emergency surgery. It was then that they found something. On her liver were lesions. Tumours. They took biopsies. Then we had to wait for the confirmation of cancer. They knew it was. It couldn’t be anything else. But we didn’t. So I grasped that tiny bit of hope. Hung on to it tight.

Within a week she was back for the results. It was, surprise, surprise, cancer. A rare one. Slow growing. Treatable. Neuroendocrine cancer. That’s what they told us then. There was still hope. But I dissolved. That day I sobbed for an hour. Mum was meant to be isolating after exposure to covid while on the ward but screw that, I hugged her. Then the guilt set in.

To understand this guilt means explaining that in my therapy I’d been working to stop self harming. I had been using as an OCD type compulsion to stop people getting ill. I’d been told it had no effect on them not getting ill. Then this happened. I’d made my mum get cancer. I even told my dad it was my fault. The guilt overtook me. I had ended the therapy by then ahead of a new group but all I wanted was to email the psychologist and tell her she’d made me give my mum cancer. Yup, totally irrational. Or that’s what I’m told. I bounce back and forwards still.

With the diagnosis came a lot of emotions. Emotions I didn’t understand. Emotions that were set to overwhelm me along with other people’s. So I pushed mine down. From the day after the diagnosis I didn’t cry for a long while. I threw myself into the practical. I didn’t feel anything. I totally blotted out my feelings. I had enough to overwhelm me with other people’s emotions. Those had a name though as people could tell me them. My own I can’t name.

So diagnosis was stage one of the whole cancer chaos. The start of the chaotic world it brings. And beginning it all in the midst of a pandemic has brought challenges as well. Mum was on her own for the diagnosis as at our hospital appointments have to be attended alone. I think that has hurt her a lot. I don’t know though.

So from diagnosis comes many more tests and appointments. These I will discuss in another blog post. I think I thought diagnosis would be the hardest part. How wrong I’ve been.

If you want to share any experiences, thoughts or resources feel free to use the comments or my Twitter, Facebook or Instagram accounts linked to this blog.

When Emotions Overwhelm

Please be aware that some of the content may be triggering. Please take care 💚

Last week after a while of not feeling anything or pushing emotions down I was suddenly overwhelmed with them. It is an experience I know many people with a mental illness feel at times, especially those who have a diagnosis of Borderline Personality Disorder (BPD).

I don’t understand my emotions most of the time. Identifying them is an extremely difficult thing for me. When they overwhelm me this is harder to do and harder to deal with as well. People will ask what’s wrong or what you’re feeling and not being able to explain it is so hard to deal with and seems to add something into the emotions that makes it all the worse. I feel I just want to be a “normal” person for a while.

Those with a BPD diagnosis find emotions are heightened. They are often described as being emotionally like third degree burns victims without an emotional skin. It’s like touching wounds when we feel emotions. The pain of them is strong and this can be felt physically in the body. And by god is it painful at the extremes. When most people would have a small emotional response, ours tends to be more intense or bigger. Therefore when a person without the diagnosis has an event that causes them extreme emotional pain, well for those who have a diagnosis of BPD it is just unbearable.

When the emotions overwhelmed me I just wanted to tear my skin off. I wanted to hurt myself to an extreme extent. I wanted to escape it all. Death felt like the best idea but I felt trapped as it wasn’t an option. This added to the distress. The hatred for myself is strong. It’s always strong but in that moment it was extreme. It was unbearable and I could not even work out what I was feeling.

This happens more often than people realise. A lot of the time I just hide away. My friends cope with a lot. I feel sorry for them. I hate what I do to them. They deserve better. I try my hardest to not inflict myself on them but in the moment it’s harder. This isn’t the healthiest way to cope.

I don’t have much advice for coping. Dialectical Behavioural Therapy (DBT) offers some skills for dealing with distress. These include the TIPP skills and STOP skills that are detailed in the images below. However it can be hard to remember to do this when the emotions are so high. It’s like they are blinding. It could be useful to let someone close to you know about the skills so they can remind you of them.

If you have any other tips for coping with overwhelming emotions then feel free to share in the comments or on Twitter, Facebook or Instagram.

Goodbye Time To Change

The mental health campaign Time To Change is closing at the end of March 2021. I’ve been involved with them at different times so this is my goodbye to them.

For those that don’t know, Time To Change is a mental health campaign started in the UK ten years ago. It’s a social movement, meaning it’s work is based on using those with lived experience to talk to others to raise awareness of mental health and mental illness. They have done this in many different ways, from holding events to helping people share their stories with those in power. It has also expanded globally in the last few years.

My first experience with Time To Change was asking them to look at a portrayal in a programme that made people with mental illness seem like attention seekers. They then asked me to write a blog post about this for them. It was one of the first pieces of writing about mental illness I had done. They gave me confidence to start my own blog up, sharing my experiences and thoughts.

In 2015 they sent emails out about a new event, Story Camp, that those with an interest in sharing their experiences about mental illness could sign up to, to learn about how to do it effectively. This included bloggers and media volunteers. I applied and never thought I’d be chosen to take part, but I was. So on 10th September 2015, I headed to London to take part in workshops and listen to others speak. The people I met were amazing. One is now one of my closest friends. Others inspire me greatly. I was too nervous to say hello to my biggest inspiration, Jonny Benjamin, but he was there talking to us all and I snuck a photo. I was in awe.

I carried on writing my blog and using their tips to improve. I signed up as an official Time To Change champion and this led to me becoming part of the local hub being set up in my home town. I did some training again with them, though becoming ill again meant I didn’t take part as much as I’d of liked.

So Time To Change has been at many different parts of me sharing my experiences. And for that I’m grateful. The training offered is high quality and the people I’ve met through them are amazing. I’ll miss having the opportunities they’ve offered and actually feeling valued by an organisation. They’ve validated me and many others.

While we are saying goodbye to Time To Change, we are not saying goodbye to the work they’ve done. It’s definitely made mental health less of a taboo. We still have much work to do with making people understand other mental illnesses as well as they seem to of accepted depression and anxiety. This will continue with those it has trained up and given confidence to.

So thank you Time To Change, and goodbye.

Found my notes from Story Camp 2015

Being Invalidated

Please be aware that some of the content may be triggering. Please take care 💚

“To invalidate means to cancel something or make it void, as if it never happened. In invalidate you see the word valid which means true or correct. When you invalidate something you are making it less true, less official, or less correct.” (vocabulary.com, March 2021).

The meaning above can be applied to things you experience. It can be caused by other people and events. It can make you question your thoughts, feelings, emotions, experiences and reactions. It can make you feel awful. And people sometimes don’t even realise they are doing this to you.

When you tell someone that what they feel isn’t justified or to just stop feeling that way, then you are invalidating the way they feel. You are telling them what they are feeling is not true and not correct. Yes, you may not have felt that way in that situation but everyone is different and that doesn’t mean that what that person is feeling is invalid.

It’s important we think before we speak. It’s what might feel like silly things that can have an effect on other people and cause them to feel invalidated and it can start when we are children. What we are saying may to us sound reassuring but it ccam invalidate the child. Saying to a child who is nervous about an exam that they shouldn’t be is invalidating. Instead saying you understand why they feel that way but you feel like they are well prepared so it should go well is acknowledging their feelings as valid while reassuring at the same time.

Some mental health professionals could also do with understanding the power of invalidation. Telling someone that what they are experiencing is minimal or not that bad can have lasting effects on everyone and especially those with a mental illness. It can cause them to deteriorate further. On my write ups from the psychiatrist appointments it would often say my self harm was superficial and it would make me try to cause myself more harm as I felt they weren’t taking me seriously. I’ve also heard of people with eating disorders who are told they are not thin enough being made sicker.

I know that although having a diagnosis can be a burden I felt it a validation for what I was/am experiencing. It made me feel that someone could see that something was wrong and I needed help. However this means professionals need to be careful about removing diagnoses from patients as it can add to invalidation. You are taking away the validation you gave them. There needs to be a conversation and careful explanation.

It is possible also to invalidate yourself as well. This is harder to stop doing, I know I do it a lot. It’s important for us to try and allow ourselves to experience our feelings and acknowledge them. This is easier said than done though.

So when speaking to anyone try to consider their feelings and not cancelling them out. We all need to think of how our words and actions impact on others.

I Don’t Have The Words

Finding words is difficult at a lot of different times and especially when struggling mentally. This is something at the moment that I’m finding is the case so we’ll see how this post goes. Good luck  to all reading.

Words come from many parts of ourselves. All our senses feed together into the brain and expect it to spit out the words that we need but sometimes it feels like it’s letting us down when we need it most; to tell others how we are feeling. This is definitely something I feel happens. I want to express how I’m feeling but no words come, especially if it’s an emotion. It’s frustrating as people say I’m clever and good at writing but I just don’t have the words for this part of me.

I know I’m not alone in struggling to find words for emotions and it is particularly something that can be associated with Borderline Personality Disorder (BPD) and part of the therapy for this (Dialectical Behaviour Therapy (DBT)) involves a section on identifying emotions. However this can still be difficult as it requires us to be able to find words for the sensations in our bodies and the events leading up to them. This isn’t always easy and I often can only use the words good or bad to describe the sensations.

Not being able to find my words leads to many difficult situations. I don’t feel I can ask for help when I don’t know how to describe what is wrong. I’m terrified of being misunderstood and it happens frequently when I do try to find my words. However it is difficult to sort these misunderstandings as I don’t have the correct words to make people understand how I’ve been misinterpreted. It makes for many difficult times. Often I will just allow myself to be misunderstood or I won’t try to explain in the first place.

Writing can sometimes be easier than actually talking. It often gives me a little more time to compose my thoughts and feelings into words. It’s often why I find phonecalls stressful and avoid them at all costs. This hasn’t been helped by many things during the pandemic being moved to phone appointments. Even face to face is easier as the other person has my body language to help them understand me.

Having a difficulty with finding words has effected my confidence in social and professional situations. I’m constantly in fear of being taken the wrong way or accidentally offending someone. It makes everything more stressful and I’d rather avoid situations than try and explain to someone my difficulties.

I’m still looking to find ways to combat my difficulty with finding words and would love to hear if you have found any. Feel free to share any ideas or your thoughts on the subject in the comments or on Twitter, Facebook or Instagram.

Therapy 2021: Session 5

Date of session: 02/02/2021

Please be aware that some of the content may be triggering. Please take care 💚

Today was my last session of individual therapy. This will be more of a thoughts on things post as there was not much content to the session to be shared. The main part of the therapy today was to do a screening for joining a trauma information group in March.

With the end suddenly happening (it was only mentioned last session, last week) I feel abandoned. I feel I have no support. I feel alone. They say phone the duty worker or crisis team. These are options I can’t do due to my home situation and the anxiety that means I don’t feel able to talk easily to staff I don’t know. Also I know that someone who mans the duty phone is someone I put in a complaint about and so I was removed from her care. She has since blatantly ignored me when I offered a hello when I saw her in the building of my community mental health team and turned her head away from me. She has also said some things for which the complaint was made. I’m terrified it would be her that answers. I have lost so much support in the last year.

I know I’m lucky to move onto this group but it’s a stop gap. I’m apparently not safe to do online trauma therapy so this is a trauma information group. This will just give us eight weeks of generic information about skills. For this I have to be low risk and stable. So that is what has been said while I’m not safe to do the one to one. I find this confusing.

I’ve not self harmed for seven weeks. I hate myself for this. The anxiety is high. But I’m expected to just be OK. That’s how it feels at least. I just want to harm again. I feel it wouldn’t matter anymore. No one would check on it. And so what if I go to far. It wouldn’t matter.

I know I sound pathetic and I probably am. But I’m angry and upset. Maybe I should of left this post for another day but I needed these thoughts out before I explode at someone. Especially as I’ve been told by someone else something that has annoyed me and left me feeling even more left out and alone. It’s left me with suicidal thoughts (I’m safe and won’t act on them). I’m tired of being made to fight so hard.

I apologise for being self pitying. We shall see how the trauma information group goes when it starts in March. I’m unsure if I will record this or not. For now this is the end of therapy.

Therapy 2021: Session 4

Date of session: 26/01/2021

Please be aware that some of the content may be triggering. Please take care 💚

Before this session I had homework to do. I left it until the last minute due to feeling ill and tired most of the time. I also knew it would be hard as it involved identifying emotions at some level. This is an area I find hard and frustrating. I also had to build a new safe place to use to do this. This I resented. I did it the night before.

At the start of the session, as always, I was asked how I’d been over the last week. I said about the pain and tiredness. She asked how I’d been doing with the self harm and I replied I still hadn’t self harmed since before Christmas. She was pleased with this. I am less so at this time. She also asked how my dissociation had been which I always find hard to answer as I’m not always aware when I’m dissociating. I explained a couple of things and she said it sounded more like acting mindlessly rather than dissociating. I’ll agree to disagree here but hey ho.

We then moved on to look at the new safe place I had created and went through all its sections and the different senses that related to it. I won’t discuss my safe place at this time as I’m not sure it is a wise thing right now. She was happy with the place I’d created and the use of senses. She then asked about emotions and feelings in the body. This is where I had difficulty and this made me feel uncomfortable and annoyed (anger and annoyance I can identify, though not always accurately in others). She now wants me to keep going through the safe place when I’m not stressed to see how it reduces feelings and calms me. Then move on to practicing it when I think of a mildly irritating scenario. At the moment I’m in a constant state of anxiety so we will see how we go.

After this she wanted to discuss next steps. She had, had her supervision meeting and discussed about doing further trauma work with me now I wasn’t self harming (a prerequisite I had been given). It was now decided it was still to unsafe to do the trauma work online due to my high score on the DES (Dissociative Experience Scale) as she wasn’t in the same room as me. I understand this to an extent but it feels like I have to somehow get better so I’m the right level of ill. I can’t be too ill, but I can’t be too well.

The above led me to having to make a decision. We could do another couple of sessions winding down and then leave it until face to face was an option or I can join a trauma information group in March for eight weeks and next weeks session would be my last individual session. I explained I would have to consider the timing of the session and how it would impact on my family as its a two hour course. I had some less than pleasant comments in response that left me incredibly upset, including “the group will go ahead with or without you” and “you’re lucky to be offered this so soon”. I don’t dispute how lucky I am, I just needed to consult others as I’m not the only person it will effect. She knows of the difficulties at home. I was told to just be assertive.

After the session I was in tears. I felt some of the comments were unfair. I had not turned it down flat, just explained that I wasn’t sure I could do it due to the issues in my family. But then I was an awful person. I feel now something that may be paranoia but also may not be, which is that this has all been to leave me without support and the world knowing how awful I am. I’m still not feeling great in regard to this. I have considered emailing the psychologist but I’m also scared too. It has triggered a lot of feelings of fear of abandonment.

I have managed to arrange that I will be able to attend the group of the offer is still open. We will see what happens next week.

Winter Self Care In Lockdown

I know we are quite a bit into winter but as I’m in the UK we all know winter is going to be here forever more (yes I’m exaggerating). So I thought I’d put some winter self care together and that which is appropriate for a lockdown.

1. A warm drink

Simple maybe? Maybe not. The thought of making a hot drink for some feels insurmountable when times are hard but if you can it may make you feel better. Even just an ordinary soft drink is good as well. I’m not one for hot drinks myself so understand if you don’t want one.

2. Snuggle in some blankets

If all you can do is keep yourself warm and comfortable it’s still self care. It’s nothing to feel guilty about, your comfort is important. Enjoy the blankets.

3. Watch something you’ve wanted to

Whether it’s a boxset binge or a film you’ve been meaning to watch, make the most of the cold weather and the instruction to stay indoors and watch it. Remember you can always pause something if you can’t concentrate for long. I often watch episodes or films in bits as I can’t keep my mind on things for long.

4. Something creative

If you feel up to it then what about something creative. Drawing, modelling, painting. I’m currently doing a painting by number that really helps me with my anxiety. Even a jigsaw or lego is creative. Do what you enjoy. It doesn’t have to be perfect or put on display.

5. Reading

I read quite a lot but I know it’s not always easy so there is the option of listening to an audio book if you feel that would work better.

6. Nap

Naps are amazing. Have no guilt in giving your body what it needs.

So those are a few ideas from me. Obviously there are lots of different things that you can do. Do what is good for you. Remember self care isn’t selfish. It’s something we all need.