Morning thoughts

I came across a dispute in press between P. Morgan and W. Young about PTSD. The first criticized the other saying that he hasn’t got PTSD but WNTS – Whiny Needy Twerp Syndrome. I don’t know much about W. Young life or what traumas he has or hasn’t had in the past. But I cannot see why would someone labelled himself PTSD or anxiety sufferer if he hasn’t felt that way??? It is certainly not a state to desire to be in.

I think P. Morgan said that PTSD term was much overused as most young celebrities these days or maybe even most people claim to suffer it. I also read somewhere that his family member was a war veteran and suffered trauma there and had a “right” to call himself PTSD sufferer.

I definitely agree that trauma during any war is huge. And I’m not surprised that people experience metal health problems afterwards. But I think that any trauma can cause PTSD syndrome. It all depends how we reacted to it at the time. We also perceive trauma differently. Some things would be traumatic to anybody, but other events would be traumatic to only certain people. Personally I do believe if the first time I witness Graham’s seizures happened in a different circumstances – maybe if I was with someone or maybe if I just read about epilepsy and I’d know from the beginning what was happening OR even if it happened in the hospital at first instance – all would have caused a different response. I can pinpoint in my memories exactly the moment when I felt “the impending doom” and that activated the fight or fright response.

I’m not an expert by any means, but I just think that possibly PTSD is an illness of new century. Of our times. Or maybe it has been there for ages, but people did not admit they suffered. Or maybe the media these days allow people to speak more freely and reach larger numbers of people so it just seem more common.

The problem with mental conditions is that you cannot confirm them as easily as physical ones. Or some of the physical ones. Let’s take diabetes. You perform tests – blood sugar tests and here we go, Voila! we have confirmed condition. And even if you think it’s crazy so many people in our society these days have diabetes – you can’t really argue that’s true. Can you? Because we have tests results. And those results are not subjective. Everyone will interpret them in the same way. And luckily we can tailor the medication to treat that particular problem. Luckily there is an antidote. But diabetes is also an illness of our twenty-first century. The diets changed, food changed, more convenient food, more carbs, more stationary lifestyle.

I don’t think our brains are designed to deal with the twenty-first century problems either. We cannot, unfortunately, just perform a test. As answers would be subjective and so would be interpretation of the test. But still I cannot see how someone who hasn’t got a problem would fabricate the fact they do. To get attention? To get sympathy? I don’t know how the celebrities world work. But I suppose fabricating a problem itself would show that someone has some sort of issues anyway – need of approval etc.

As simply saying it is really not fun to have anxiety or PTSD.

Confused

I haven’t written for some time. It’s been a difficult week. I have got very confused as to what I am actually feeling and what is happening.

My daughter has finally got to see someone at school. One year ago I have applied for counselling for her and only just now she has been given the opportunity to see someone. Part of me thought was it worth going over the things when she has managed to cope with it in herself. But if I didn’t use the chance maybe she would cope with it in a completely wrong way like I have coped with my childhood. I want her to have better life. Better emotional and psychological life.

When speaking with the counselor I discovered few things. She brought up few good points, she understood where I come from. I was a bit afraid she’d say I only waste her time as there are people with real problems out there. I’m not sure if it is such a good thing to actually be considered as “real” problem. But nevertheless I felt understood and listen to.

But during the discussion I was told that I probably was misdiagnosed with GAD (I’m not sure about that one. An hour chat is not really enough to establish that) but I have PTSD. I have felt I had PTSD for a while now. the name for it is “complexed emotional trauma”. I was told to get my GP to do a proper mental health assessment to get a correct treatment.

I have tried to call GP but you can’t really get anywhere with them on Friday. I doubt I get far on Monday too.

I have been doing a lot of self-analysis which I am personally a bit sock of now. I have also tried to join Facebook PTSD groups. I have read a lot online about PTSD… as you do. When I read about it online I do have all the symptomps. The flashbacks, nightmares and constant fear and “alert” state are the worst. Well that’s what PTSD mainly is. But when I read about other people experiences on the Facebook groups… I don’t quite fit there.

On top of it I think I might have lost another friend. It really amazes me how much people cannot take other people’s pain. I don’t know why it only come out now. We were talking about things from last year. Maybe they felt they couldn’t say anything last year as I was “suffering” and now when things got back to normal – they can tell me how much I’ve hurt them. Actually it is a good thing in a way. As by no means I wanted to hurt anyone. but it just shows who your real friends are. Things never go back to normal after things like that. There is no normal. normal has gone! and the new “now” is difficult to cope with. I need to learn what to do and how to do it. I’m extremely grateful to everyone who stood by my side. I said it before and I’d say it again – I would have never done it without my friends. But I’m not fully back to being myself. I don’t focus on others now. There isn’t enough me to make sure everyone knows how grateful I am. There is not enough me to be a good friend possibly. I don’t know how long the healing process will take.

I still feel scared of evenings at home. I feel scared of letting Graham go – in case something will trigger a seizure. I know it is silly. I’m still working on myself and I start to believe it is a matter of time. I’ll get there and I’ll be happy again. I asked today everyone at the table to tell one positive thing which happened today. I didn’t give them any warning about it – but I think I keep doing it.

I also need to re-wind and go back to basics. I need to learn what’s mine and what is someone else’s pain/emotion/fear/worry/hurt. It is theirs. Not mine. I think it will be difficult to change the mindset. but hopefully not impossible 🙂

What if

The “what if” thinking is very automatic. I was driving at the weekend and wondering if there is a parking space when I get there. “What if there will be nowhere to park?” I was thinking. And then I realised…. again – imagining the worst case scenario before it even happened.

The constant questioning your own thoughts is very tiring. I do get moments when I actually doubt if what I’m doing does make any sense. I’ve been practicing the Headspace and I like the metaphor they used there. Imagine a blue spotless sky. We walking underneath such sky through life. But there will be some clouds, like our feelings, emotions, thoughts and experiences. They will be fluffy white clouds. And there will be some grey clouds too and sometimes rain and thunder. And sometimes they grey rain is so overwhelming that we forget there is a blue sky behind it. But we need to remember that the blue sky is there. We don’t need to create it – it already exists.

I’ve been thinking today that the last six months had also some positive outcomes, not only negative. Things like that makes you revaluate your life. What is important? If not the negative experiences I wouldn’t ever had a trip into the past my childhood and learnt so much about myself. I do feel the changes I’m making in my way of thinking are good. I feel it’s all going in the right direction now. We also grew closer as a family. It is special that someone chose you to stay with them in the moments when they are the most weak.

But I still have the “what if” it all collapses if something bad happens again. It’s a very very fragile line I’m stepping on. And I also understand that the positiveness and strength depends only on me. My anxiety at the evenings settled. But I’m not optimistic, I’m realistic. Or am I just giving in old way of thinking… it’s easier to change it in a little things, but I don’t want to be disappointed with what’s important. And it’s also hard to believe for me that something might have actually worked. After good few months of trying to find a solution.

In the meantime…. I was enjoying the 32C IMG_6487

Mid June

Graham had his 6th chemo cycle last Wednesday. I have to say my anxiety was sky high knowing what does happen after last chemo. Especially that last time he started so well and then all of the sudden “crushed” down and had seizures and was unable to do anything for a week.

They have reduced his doze this time to 75%. He seemed to cope well. I’ve worked 4 nights and noticed that when I’m tired after nights my anxiety goes up.

It’s World Cup as well so we have 3 games in a row on TV now. At least he’s happy. At least I suppose the resting after chemo makes some sense. And I don’t mind. I’m not football fan but I like seeing him happy. Well at least as much as he can be.

It wasn’t all good, he still felt washed out and sick. And the over-sensitivity to cold is just awful. His hands and arms are aching all the time. He has pins and needles and cannot touch cold things as they give him electric shock. There is a risk it would never go away and his peripheral nerves would be destroyed forever. But we have 2 more cycles left.

It’s a strange situation. I was even told I may have Generalised Anxiety Disorder. I can explain to myself perfectly well all sensible answers. I can say there is NOTHING I can do. There is no point in worrying as it doesn’t change anything. I know that if things are all right I should take it as a gift and enjoy. But I worry that something bad may happen. Anything. I don’t even know why WHY I see seizures as something that BAD. It’s not pleasant but we come across many unpleasant things in life and kind of deal with it. It’s scary but I’ve seen 9 of them so I suppose it’s not new. I have a feeling if I let myself believe that things are better I’ll get very disappointed soon and then I’ll have another set back. And yes, I dealt with them before so I can deal with another one but I still feel anxious. I’m trying to work on the anxiety cycle and break it but it does take time. Sometimes I even worry a bit that I don’t worry. As I did have days I was actually calmer.

I certainly didn’t expect such a journey inside myself this year. I didn’t expect such a bumpy ride through life this year either. I’m at a bit of a numb point at the moment where I have really no idea which way it will all go. I also have hope and apparently it’s good to have hope but I don’t want to fall crushing down and get bruised again.

Feelings

My counsellor told me to write about my feelings. I seem to have a strange relationship with my own feelings. I take them as facts. I feel so it must be true. Which objectively sounds quite absurdly. Although on the other hand, I remember from the Polish book by Andrzej Szczypuorski “Mass for Arras”. He said there that things only exists by their name. If you call a rape a punishment it becomes a punishment. So if you name a certain situation based on your feelings, does it become your truth?

My main feeling these days is anxiety. I wonder if I got some mild form of PTSD? Maybe I’ve learn a response after the first time I saw Graham having a seizure and my mind just reacts the same way. The first time it happened it was scary. I didn’t come across any seizures before, even though I’m a nurse. We were just sitting at the dinner table, having dinner. When we finished I got up to take the plates in the kitchen when Graham made some strange noises. He was trying to encourage our youngest to finish eating, so at first I thought he was making fun with her and thought – why is he doing it? he should be serious, not playing with her. But I don’t remember when exactly I realised it wasn’t fun, maybe when I looked at him. I don’t quite remember how he looked as all I remembered was the feeling of impeding doom. I knew something bad was happening but I didn’t know what. And how to deal with it. I don’t remember moving, but I know I was straight away next to him as he felt backwards and I was holding his head, making sure he doesn’t hit it on the stool behind him. He wedged himself between table legs. He was shaking, his eyes fell backwards and he was foaming around his mouth. He produced a lot of secretion! I was shouting his name in panic, I did panic. I checked his stoma as all I could think was – he had a surgery and it’s something do with that. And then I thought I would have to do CPR on him and I can’t do it on a chair and I can’t do it alone, that’s when I turn around to get a phone. But my older daughter was already there with the phone in her hand. I dialled 999, still panicking. The woman there was brilliant!!!! she talked me through it, she calmed me down. I managed to move him off the chair on the floor into recovery position. I was sitting next to him on the floor. After the shaking he stopped breathing for a moment and then started breathing very loudly. That’s when I moved him. I remember I never felt so relieved when I heard the ambulance sirens!! When they came I was so grateful. The paramedics are lovely people. I do admire their job. They took Graham to hospital and although I work there (not in a&e) I have to say that the stuff was less nice. I do understand when they come from, for them it is just another seizure, not really an emergency. Not life threatening – and maybe next door there was someone who needed CPR or had great degree burns or a child which needed help with breathing. I do understand that. But when they told us – you had a seizure, you can’t  drive for a year, wait for an appointment with neurologist, bye! it was a bit like – well… what now???? It’s actually quite a big deal not to drive. It’s a big deal to have a seizure.

Well, how that all made me fell….. scared. Anxious. Petrified. Down. Depressed. Panicking. Hopeless. Helpless.

Every evening now about the time when the first seizure happened I feel incredibly anxious. Days are easier, but still any sound, any scream, loud noise makes me jump. Makes me run to see if Graham is ok. I get confused when children playing loud. Many many times I jumped when someone made strange noise for fun, my heart was about 150 beats per hour at least. It’s a completely different life.

I can reason with myself perfectly. I shouldn’t worry about things I can’t control. Don’t worry about things not dependant on you. Worrying won’t stop a seizure, if it’s going to happen it will happen. I know all of it. And yet I do feel anxious, I can’t relax. It’s always there at the back of my mind.

Feelings are connected with thoughts, thoughts are connected with actions etc. Most of us probably heard of it, a bit of CBT here. But I yet have to find out my relationship with my emotions. I feel them so strong, in that circle I think my emotions are the strongest. it feels like they influence my thoughts although it’s probably not true. So my investigation inside my self keeps going on. I need to discover or maybe re-invent my relationship with emotions as maybe that may change the thoughts I have and how I perceive the reality?

Nemesis

So….. it’s been a difficult week. It’s been another difficult week I suppose, but this one filled up with emotions and thinking. I was supposed to make it more of a “proper” blog full of photos of my recent bakes and cooking skills but …. I forgot to take a photo of the cake I baked and then I had a major setback.

I suppose my life has changed completely since 30th December 2017. It was difficult to manage with Graham being in the hospital and juggling the work, home kids and looking after him, the everyday trips to hospital. Even not for a moment then I thought it would be cancer and he would start epileptic fits. Even if the cancer went through my mind, I would have never ever ever in million and trillion years expect the epilepsy. I thought life was difficult in December/January…. but it became worse.

I can’t explain the feeling I had. I was petrified of seizures. I can cope with cancer, chemo, side effects and moods…. but seizures, their unpredictability scared me. I desperately searched for help which actually turned out more difficult that I expected. Mental health care isn’t easy accessible. Maybe in different counties… I don’t know. I have received help now but I actually has never been formally diagnosed with anything. I felt down and alone and petrified. Life lost it’s meaning. There was no light at the end of the tunnel. I felt like running away, leaving it all. I hated every moment of what was happening. It was a dark place. Everything seemed confusing, out of control. You can’t just “get on with it”, you can’t just search for tips online or call Samaritans. There is no energy to carry on with houseworks, cooking seems a chore. Having bath seems a chore. Dealing with children is actually an impossible task. But I did carry on going to work as it was my only escape from home. At work I could be myself, not a carer, even working as a nurse. I was free from the constant, CONSTANT worry about my husband.

When we had the 6 weeks seizure free period I started to believe things were improving. I let myself to fell into the false sense of security to believe it. I felt happier… and then Graham had another two seizures. He had one first, in his sleep as usually and I let him sleep… as firstly I was worried he would be tired but also I thought I’d see if he remembers what happened in the morning. But he went to sleep after his seizure and had another one about 1.5hours later, exactly the minute I decided to lie down and switch off the light and get back to sleep. So I had no sleep that night, nor I had any sleep the night after as any movement he made woke me up. Neither I had any sleep a night before as I was working. So after 3 nights no sleep I wasn’t a real human being. But things got gradually worse. Things got worse even when I went to work and thought I’d relax. I didn’t. My anxiety grew bigger and bigger, I had a feeling something horrible is about to happen to my kids, to me to the world. I don’t know. Just a horrible feeling of being stressed all the time, worried all the time at the back of my head about everything.

I had a counselling session that week. I thought it wasn’t particularly helpful at first, but it drew my attention to something. It’s a complicated issue reaching back to my childhood… but I realised after the session couple of things. Firstly generally I realised that the voice in my head is my mum. All the doubts I ever had and all the times I felt unsettled in my life was my mum and my upbringing. But that’s a subject for a completely another story. The other thing I realised was the fear. I had that fear in my and maybe everybody does to some extend, a fear of scary things. A fear of the inhuman, cruel, bad things. Things out of control. And I realised whenever I was scared of something I used to run away from it. I don’t usually conquer my fears. And then I realised that’s the exactly the same fear I was feeling. But wait a minute, I was scared of driving and I do drive now…so it is possible to overcome your fears. I talked to myself to calm down. I tried to reason. I stop denying the fear and accepted it. I tried to accept the situation. I tried to accept it is horrible, it is happening, I am afraid, it is difficult and it will be difficult for a while yet.

This fear – it is my nemesis.

When I tried to tame the fear it seemed smaller. I still haven’t yet slept a night in my house to see it in practice, but I calmed down and lost the overall feeling of anxiety. I realised that life do goes on. Yes, seizures happen and yes they are at the moment the central focus of our lives, but life do go on. There are things happening between the seizures, they are children to look after and watch growing up. There are things which still make us happy.

And mostly I do have to work out a strategy to deal with what’s happening. I need a plan in place. I need to prepare myself if seizure happen that’s it, I won’t sleep the night, I’ll become a nurse on duty. I prepared myself something I like doing, I decided I’d update this blog if need to, maybe  do colouring, watch a film.. I don’t know. I’ll occupy myself not to think but be able to treat Graham as my patient. This strategy is yet to be put into practice but…. it’s something isn’t it. It’s something more constructive than just being afraid.

I also signed up for a epilepsy awareness course, and tried to get some help from Bucks Carers. I don’t know if it’s all going to work. I don’t know how it is all going to work. But let’s give it a go.

3/3/18

One night, three seizures.

A friend came 2am to help me.

My husband ended up in hospital, but they discharged him home. Still no answers. Still not further anywhere… and the fear is bigger 😦