Side effects

I think whoever considers taking antidepressants should be told at the beginning not only about side effects but also about withdrawal symptoms. If I go back in time and the way I felt in February maybe I would have made the same decision. I don’t know. But I feel awful at present.

I’ve been meaning to write an entry for a long time. I’m not sure if writing this blog does make any sense as nobody is really reading it. It does help though when things get a bit too much of me to unload a bit. It’s a bit sad replacement of a motherly hug and somebody to tell me hey, it’s going to be all right.

I’ve been quite good over the last few months. Not perfect. I still cannot get back to me before the seizures appeared. I feel it was so careless then. It wasn’t at the time. But now it feels it was. I don’t know if my life will ever be again with the fear.

I feel horrible. You could tell that I haven’t written as things were all right. But if this gave me the push to keep writing that’s I suppose one good thing.

I’ve been desperate in February to start antidepressants to help me with the way I felt. As I mentioned before I first took Sertraline and it was horrible. I was suicidal after that. Then I started Venloflaxine and there was a week when I was unable to feel any “extremes”. I didn’t feel sad and I didn’t feel happy. I felt fine. But that wore off pretty soon and after that I felt normal. But I was told by my GP you have to continue to take antidepressants for at least 6 months after you felt better. The thing is that I don’t know if it was antidepressants which made me feel better or the psychotherapy I had? I tend to think it was the psychotherapy. 

I felt all right on the Venloflaxine apart from horrible night sweats at first (it was sorted by reducing the dose). Then libdo is non-existent which was a bit annoying to say the least. And I’ve had a very very VERY vivid dreams. Unfortunately about half of then were nightmares. I dreamt graveyards, my mum dying but I could never attend the funeral. There were many weird dreams, including a tortoise escaping from an aquarium and me chasing it. I dreamt lots of animals. But one time for example I had a dream that me and a group of other people were trapped by a murderer who was playing games with us, setting us tasks and whoever lost was first to be killed. I remember he broke my thumb in the dream and I asked to go to hospital but he replied there was no point as I would die soon anyway. 

So, not nice. I accepted it as a part of the course I suppose. A bit of different thing. I didn’t like the nightmares but it was interesting to be able to remember so many dreams. And then I had my last CBT 3-month review, I’m completely discharged from them by the way) and my therapist suggested that dreams like that do not help with anxiety and maybe I should speak with my GP about it. I think GP have enough to deal with that someone talking about dreams, but I have to say I didn’t think of how bad impact the dreams may have. And then I was thinking more about other things happening, I’ve noticed I was bruising a lot without any apparent reason. So I did call my GP last Wednesday and she told me to reduce my Venloflaxine to one tablet per day for three days and none at the weekend and she would call me back on Monday to discuss another antidepressant. 

Little I knew about withdrawal symptoms :((( horrible horrible thing!! I suppose me working night do not help. As on nights I’m emotional and existential wreck anyway. BUT last night was just horrible. Awful. I had headache and felt lightheaded at the same time. I felt dizzy a bit like vertigo – when the world spins for a short moment. I felt sick. Very sick. And I had brain zaps – I still actually have them. These are strange it’s like an electric shocks going through your brain. Hot flushes. And it comes in waves. So I felt like that then all of the sudden felt fine. And then after an hour or so felt very sick suddenly, brain zaps and lightheaded. And mood swings… felt so low. Not suicidal but so fed up and low with everything. With feeling like that and also thinking that nothing will ever change. As soon as I thought that I felt like crying. Tears were just coming to my eyes. I just felt it was all pointless, I have had enough of the fear of seizures and I do feel that it all will never end. I’ll never feel better. 

But actually I also feel very very upset and angry that this year has been so though and shit really. As it has been. I feel angry that my friend of 7 years just dumped me like that. How could she cross off 7 years of friendship just like that? I know I haven’t written about it here, I’ve tried to be subtle but… what’s the point. People don’t care about you, how you feel. People only care about themselves. She started her text message to me with words “my husband think I should talk to you and I gave it a thought and realised I don’t want to” – that hurt. I didn’t actually read the rest of the message too carefully as it was just a rambling. Just like that – I don’t want to talk to you anymore, goodbye and she had a cheek to “wish us happy future and to look after each other”. I do feel like say F*** Off. Yes, it has kind of resurfaced now because it hurts like hell. When you are accused of not being there for someone (even though I’ve tried my best) but to say it to me, knowing very well that me and Graham have been through hell this year – is just cruel and heartless.  

That actually reminds me of two quotations. My grandma used to say that what you throw behind you, you will find in front of you. Everything comes back, what you give is what you get returned. But also having friends like that you don’t really need enemies. 

So that’s me today. Not a very good come back to the blog but here I am again. 

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.

We are strong in the moments we feel weak

I said in on of my previous posts I started to look for people in similar situation. I posted a post on few Facebook groups asking to speak with partners of people with epilepsy. I got a huge response. I got about 50 messages? some of them are just one message conversations, but even those had advice in them. I tried to put together all I researched.

I noticed from the messages that people feel the same as I do. And you know what, it’s OKAY to feel like that. I think I deny myself negative emotions, like I expect myself to always be happy and perfect. But it’s not possible. And the situation I’m in is difficult. And it’s fine and it’s normal to feel like I do. As from the messages I had, I found that most of the people at least at the beginning of their journey with epilepsy felt the same. They felt frustrated with life, worrying and hopeless.  They said they were constantly watching their partners or children. Their children had hard time to adjust. That it’s difficult to deal with it. They would give up but they loved their partners. They were afraid, afraid of new life, afraid the partners would hurt themselves and afraid of death. They just wanted their family to be ok. And one sentence I think had the most meaning in it, when someone said that people don’t realise how much it impacts your life when the partners AREN’T fitting.

I got much better advice how to deal with someone who has a fit. Better then the hospital which gave me no advice at all. The most striking advice for me was to smile at people coming out of the seizure. The other advice was to keep them safe, recovery position with cushioned head. I was told to keep seizure diary to work out triggers, medication and side effects. Take medication regularly. It also helps to have a rescue medication when they have a seizure lasting longer then 5min. It’s also important to be there for them and reassure they aren’t alone and also educate those around you. Some people had a code words for when seizures were coming. Others liked hot bath after, cold flannel on the head, head rub or cold yoghurt if tongue was bitten. Whoever had a seizure will need a long sleep afterwards to regain energy. I was also told to increase Omega 3, have high quality probiotics, organic food, reduce toxicity and use natural products. It was important to have enough sleep, exercise, keep hydrated and avoid alcohol. That’s just from other people’s messages and experiences. But it loads!

But I also got an advice how to deal with myself and my thoughts and feelings. People said it was important to prioritise self care and do something for myself, have hobbies. It was easier to take a day at the time, give time to process what happened. Give yourself patience, as you are dealing with something you’ve never dealt before. Do as much research as possible, contact organisations, talk to others. Take care of yourself. But also don’t forget you are family, make sure you do things together. It is ok not to be ok, it’s ok not to be a Wonder Woman. Accept you are going to make mistakes and learn the best way to handle situation (so important!! and yet so difficult). That’s the one I knew, worry only about things you can control and try no to think about things you can’t control. Have strength and courage to deal with new normal. It is something you do learn to handle. And time TIME – the most important aspect. You need TIME. The more seizures the easier they get to handle and the better you cope (as sad as it is). It is possible to manage it enough to have an enjoyable life. It may not be a life you wanted, but it doesn’t mean it can’t still be great. Be grateful for things you do have and do not concentrate on things you don’t have. Learn to accept it and grow with it. Don’t live your life in the fear of unknown. Make the best of what you have. Remember it could always be worse. It gets easier, it becomes part of your life and the seizures become less scary. Another important thing is to not look at epilepsy as a bad thing but as a part of who the love ones are. Don’t anticipate and think constantly it will happen, but just be prepared if it does. Take emotions out and deal with the situation as an emergency. Don’t feel sorry for yourself. We are strong even in the moments we feel weak. Take counselling. Do self-reflection, meditation. Take support from family and friends. Life goes on, times move forward and you only get one shot at the life. Nobody knows what tomorrow brings so just do what you can each day and be as happy and healthy as you can. Seizures aren’t HIM, that’s what he HAS.

Over the time you will learn the best thing to do and that there is very little you can do.

And time, 100% TIME.

Isn’t it a beautiful advice??? I was so touched by the response I got and by the support. I was so amazed people are dealing with it everyday and coping so strongly and bravely. I’m overwhelmed by the support they showed and by the way they dealt with the situation. Thank you.

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?

Another month down the line…

So, they are very sporadic blog entries. But I’m actually glad I’ve written them. I just read it from the beginning and it has an overall theme of being scared of seizures and hating the chemo and possibly it will just stay that way till the end of chemotherapy or maybe till the end of everything. I don’t know. But I can see some improvements too. I can see that the setbacks still occur but are shorter. I can see that the overall feeling of being down is shorter.

What’s happening now. Well…. We are 5 months down the line. When I read back about starting the first chemo…. omg time does go on!!! unbelievably but it does. Graham just had cycle 5! But although over half way through…. the road gets steeper and steeper. The oncology consultant did warn us about that. She said cycle 5 and 6 are the worst. She did say chemotherapy cumulate and it gets worse and worse. Overall Graham seem to be working in odd cycles – cycle 1, 3 and now 5 were the worst. Cycles 2 and 4 seemed ok. Well bearable at least. The seizures are still happening. Which is annoying as we have like 5 or 6 weeks breaks. Ok, break is nice. I wouldn’t want them happening any more often then that. But still, it kind of leads to relax and believing maybe we’re over the worst and then bum! it comes back with revenge. I do keep a diary of the seizures, but I can’t see anything in common for them 😦 apart from that all but first two happen on the first week of IV chemotherapy when Graham feels the worst. I wish I could say they all happen at sleep but two hasn’t. So annoying. I wasn’t completely alone this time. The seizure happened in the afternoon, my children witnessed it and my older one is now petrified, scared, can’t sleep or eat very well. My younger was scared but she sat next to me next to Graham and was trying to help by talking calmly to daddy – that was soooo sweet! My brother in law arrived shortly after and he was actually witnessing the second seizure which happened same evening. I was at work. It’s the first time someone else was there when it happened and my brother in law did call me to say “now I understand what you meant, they are horrible to watch”. This sentence meant to much! as I thought I  was just some sort of freak that I had such a terrible time to go through it. They are awful to watch. I tried to record it but felt like an idiot to record someone at their lowest and most vulnerable. I only tried to record it as Graham asked me few times to do it. Unfortunately my hand was shaking so much that I miss pressed the record button and had only 1sec of recording which is nothing.

Me… well. I finished my counselling. It did help but it feels like it opened a Pandora box and left it opened, and without a closure. So I contacted the lady to see if I can maybe pay for a few sessions to end few subjects. We explored my childhood and some of the things we discovered, like that my childhood would actually qualified to be called abusive – is a bit difficult to get used to. I also completed my CBT online course which actually I did’t like at all. They put me on a waiting list for a telephone one to one therapy but shortly after I was told I was allocated a face to face sessions! I had one which was good 🙂 I also read that apparently you should never ever do counselling and CBT at the same time…. as they contradict each other and make more confusion… oh well.

Friends and family are still a blessing. Well….. mostly friends actually. My family decided to add to the problem and instead of helping my brother keeps ringing me drunk and talking about him completing a suicide as he cannot cope with the relationship he has with mum….. I mean I can understand as I’ve just explored my childhood and he had a very similar one… but he’s 45! Alcoholism isn’t an answer. So on top of everything else I’m worried about him now.

I had a set back again after two last seizures. I felt desperate. I texted everybody possible I could text last night… I felt so down and so lonely. So annoyingly I do feel like other people problems seem so much easier to cope then mine. I’m jealous of people travelling and having good time. It’s wrong I know. I’m embarrassed of feeling that and I’m embarrassed of being so weak. I’m embarrassed of getting people attention and how desperate I am to get help. I have a week off work and instead of feeling happy I’m scared how I cope at home.

BUT on the positive I don’t feel completely down or anxious. For the first time I do feel on the edge – between feeling completely useless and feeling I’ll never be able to cope and a feeling – I can do this if I want to have normal life again.

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.

Chemo is a bitch

So, it’s been long time since last post. I started this blog thinking it would help to off-load my emotions into the virtual space, where probably nobody would ever read it. And it does help, but in the middle of all of the events I didn’t even have time to write.

A lot has happened. And nothing changed at the same time. We are still going through chemo. It’s still cancer. He still have seizures.

But… it’s spring now. The sun is shining finally. Even if not inside, definitely outside. I have better and worse days. I still have the fear in my heart. So, last entry was 5th March…. it was shortly after the 3 seizure night. I was in a very very very bad place then. I can’t remember exactly when things happened, but I started online CBT course. That I still continue but it’s not very helping. I think overall to manage worry and anxiety would be good. And I’m sure some tips can be useful and worth remembering. But… it hasn’t helped in this situation much. Maybe it gave me an illusion that I was doing something??

I’ve seen GP and started antidepressant. I wasn’t a complete believer in antidepressants before, but I was desperate. They do work. It did help. It took the edge out of things. But you need to have a good one, I tried one before and it made me feel horrible. The side effects weren’t worth it. It gave me suicidal thoughts. The one I’m taking now makes me slightly numb…. like I cannot feel extremes. I haven’t got panic attacks anymore. And for a while I felt pretty good until the seizures happened again. Then I questioned if my dose was enough as although no panic attacks, I still have the fear in me. And the anxiety.

I started counselling. That’s really helpful! At first I haven’t been sure where this would go. We started from exploring childhood etc But things started to fit into one piece. I can see connections, what has shaped me. I can be more critical to what I’m thinking and saying and why I do that. We also talked about seizures and it helped to tame them a bit. They are like a beast…. they need taming.

But one things hasn’t changed… chemotherapy. My husband had adjustments… change of anti sickness medications, reduced steroids. But chemo is still a bitch. Yes, it kills cancer. It’s out only chance, but it’s a bitch. I can’t describe how it feels to have it but I can say that watching someone going through it is horrible. It takes all the energy out. It makes you sick. It has an impact on all the family. It is a root of the fears. I know he hates it with passion. 8 cycles. 8 intravenous doses of drug. 112 days of tablets. 1344 tablets to take. We are on round 3, not even half way and it already makes it soooo difficult to see through and past it. You are washed out, you are sick, you have hypersensitivity to cold. Pins and needles all the time. You are fed up. You are agitated. You are tired. You are there but you are absent. Life goes by – you want to take a part but can’t.

But we are warriors. We fight to get to the light in the end of the tunnel. To live. To travel, to go and eat in a Michelin star restaurant. To see our daughters growing up. To have grandchildren. We fight to live.