5 years ago…

5 year ago today (30th September – is actually the 1st October now as I publish, oops!)  I was rushed to the hospital after a very large overdose. I was done, couldn’t do it anymore, I didn’t want to live in pain for the rest of my life, I just wanted it all to be over. It was a large overdose and I had a lot of other medications in my system too as they were my regular meds. I don’t know how long it was between taking the meds and falling unconscious, but I don’t think it was long. Most of the rest is a complete blur, my family found me, I don’t know how soon after it happened but I was in a bad way. They didn’t want to wait for an ambulance as often ambulances there would take forever to turn up, so they carried me down the stairs and into the back of the car. My Dad ran every red light to get to the hospital as fast as possible, my mum was sat in the back slapping my face to try and keep me awake. All I remember is being slapped and me telling her a few times to ‘fuck off and let me die’ before slipping unconscious again. From here I don’t remember much more just a couple of brief flashes in and out of consciousness. My t-shirt being ripped open in A&E, a porter praying over me in the elevator, a catheter being inserted. They put a tube down my nose for activated charcoal but don’t remember that bit at all. I was unconscious in the ICU for quite a while before I finally came to late the next day I think and then I spent another full day in ICU before a night on a ward as well. Other than these few brief details I do not know what else occurred and I don’t bring it up with my family to ask about it. I don’t want them to have to remember it so vividly and live through it again in their mind.

It feels like that was a lifetime ago, that it was a different person. I’ve been in somewhat bad and suicidal places since, but nothing as severe as how suicidal I was before that attempt and haven’t had any plans since my attempt 5 years ago. Despite the continued pain and illness the past 5 years, I’m glad I survived and I don’t want to repeat that experience ever again. And yes there have been bad times since and lots of pain but I’ve had good times too, some happy times and time spent laughing. I like laughter and sarcasm and turning things into a joke, often this can actually help me cope. I have a great sense of humour and feel that if I didn’t have one, what would I have left? It’d be pretty god damn miserable if I couldn’t see the funny side to things and wasn’t able to laugh at myself and at things in life, which is how it has sometimes been in previous years.
I thought I may feel a bit weird or emotional today about it all, but actually I feel okay. I feel happy I’m still here and that luckily 5 years ago my attempt at taking my own life did not succeed.

Currently I feel very stable mental health wise to be honest. I did have a brief struggle earlier in the year with the whole failed ONS situation, but I’m doing much much better mentally now. Which was helped by changing back to my psychologist of 4 years after having a brief break where I had to see the headache psychologist after ONS surgery, which wasn’t right for me. I feel upbeat and positive, right now I feel like I’m fed up of being miserable as it doesn’t help. Which is a big achievement for me, especially given I’m actually very unwell at the moment. I’ve actually been in hospital the past 2 weeks. But despite the pain and being very sick I still feel positive, able to see the bright and funny side of things, to laugh and to joke. I’ve got an excellent team of doctors, I feel positive and optimistic about everything.  I will write more about it all soon, when everything is all sorted out. I’m in good spirits despite everything, which is pretty revolutionary for me.
However I really need to stop being in hospital on the 30th September. Three years out of the past 5 I have been,  last year was my ONS surgery – can you believe that was a year ago?! And now this year too, which is unrelated to my NDPH or my mental health.

 

P.S have majorly conquered my doctors appointment anxiety currently and am feeling very proud of myself about that.

 

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Can you be ‘fixed’ in 8 sessions of therapy?

Along with having my surgery in September I was given psychological support form the hospital I am at in London. At first it was a temporary psychologist whilst the ONS surgery service employed a psychologist to be on their team. I saw the temporary one for 4 sessions and it was going okay, and then I got moved to the new ONS service one. I’ve been with him since the start of the year and I’ve spoken about it on here a bit before.
At my first appointment he asked me what my goal was, and I replied to feel better. By better I didn’t necessarily mean my headache would miraculously disappear, though that would be lovely, instead I meant to feel less miserable all the time. We agreed with a set of 4 sessions before reviewing it.

To be honest in the beginning I wasn’t too keen on him and his approach, the sessions made me very anxious, still sometimes do, but my anxiety levels within the sessions have improved as I have got use to him and the approach. It’s been going okay, and I’ve become more aware of my emotions within the sessions, how I feel when I talk about certain things in my life and where I feel that feeling in my body. I have improved with time but I wouldn’t say I was any less miserable unfortunately. At the end of the initial 4 sessions I said I’d like to keep going and we agreed another 4 but then that would be the maximum they would be able to offer me. I know I won’t reach a goal of being less miserable, and I honestly don’t think that is possible in only 8 sessions, I also don’t think that most people with complex issues would be able to go from depressed to somewhat okay and ready to leave therapy in basically just over 8 weeks. I’ve been in therapy 7 years and I’m still not there. I know not everyones the same and people have different problems and yeah maybe 8 sessions would be enough for a small number of people, but for a lot it’s not and where do people go once they get discharged from their 8 sessions? It also makes me wonder why people wonder why we have a mental health crisis on our hands this day and age. With my experience with some NHS mental health care I completely understand it. People don’t get better, local mental health teams are often shocking, I know they are in my area, and then not enough therapy is offered (that’s if and when it is offered) so therefore people don’t get better. I get that the NHS is often overworked and understaffed and staff work really hard to look after patients, but often mental health care is lacking, trust me I know I’ve experienced it.

As I near the end of my 8 sessions I know I won’t cope well without therapy, so I’ll have to find an alternative. I also wonder if I will ever reach a goal of feeling less miserable, it seems like I’ve been trying for 7 years just to feel somewhat slightly better but I’ve never got there. I question whether being less miserable is possible for me, or whether I’m destined to just be the way I am for the rest of time? I actually feel like the total of 8 sessions I will have had will have been a waste of time when they can’t be continued to reap any long term positive effects. I’ll start again with someone else, maybe my old psychologist or maybe someone new and that could possibly mess up thought processes or effects the past 8 sessions have had because of another outside influence with different thoughts and ideas. What was the point in the past 8 sessions, because I feel that once they are over because they were so short term that they will have effectively been pointless and that frustrates me because I was improving.

I get that maybe short term therapy works for some people, but I believe that for people with chronic pain or illness, which influences so many aspects of your life they may need longer term work. Especially if they’ve been sick a long time, perhaps there isn’t much hope of their health ever improving. I’m sorry but how can 8 sessions fix how you feel about spending the rest of your life sick and in pain, as someone who knows first hand and fully admits that they need psychological help and support, for me I know it’s not possible for in 8 sessions to be fixed and ready to be discharged.

I pride myself with always being honest on here, and that’s my honest opinion.

 

Post op update – please chop off my head!

First off I’m sorry it has taken me so long to give you all an update on the surgery I had which is now over a month ago and this update is going to be long. I’ll begin this update on how the surgery itself went…

I live quite a long distance from where the hospital is in London, actually it’s at least a 3 hour car journey away, so me and my family went up the day before surgery and stayed in a hotel as I had to be at the hospital for 7am on the 29th September. We had a nice dinner the night before and then an early night, not that I slept I was so nervous.
I arrived at the hospital at 7am with my Mum and was given a bed, turned out my surgery wasn’t scheduled till 2ish in the afternoon so I had a lot of waiting around to do and I wasn’t allowed to eat or drink. At 2ish I was taken down to the theatre and was prepped before going in. They then shaved quite a large chunk of hair at the back of my head, though it didn’t really matter much as I had my hair cut specially for surgery so that it wouldn’t matter. The surgical team said it was the best pre surgery hair cut they have ever seen. They marked up my head and chest of where they were going to cut and then I was put to sleep. Next thing I know I’m waking up in the recovery unit. I stayed there for a while and my surgeon popped in to say that surgery had gone well and there were no complications, and then they transferred me back to the ward. I wasn’t in much pain as they had me on morphine, and shortly after being back on the ward I got myself out of bed with some help to walk to the bathroom. The woman next to me on the ward also kept making me laugh which was really painful because of my incisions, and having my head resting against the pillow  was painful on the incision. They had me on oramorph whilst I was in hospital, the nurses kept laughing at me because I said it tasted like cough medicine and I actually happen to like the taste of cough medicine. The day after surgery one of the headache nurses came to visit me with someone from St Jude which is the company that made my stimulator, they turned it on and programmed the device and showed me how to use the remote and charging equipment. The feeling of the stim was strange, it’s like a tingling sensation, almost like when you get pins and needles in a body part that has gone to sleep, but without the pain that that gives you and it comes in waves of the sensation. I stayed in over the weekend and had some visitors each day which was nice and then my Dad picked me up on the Monday and I went home. On discharge they said my staples could be taken out in 10 days time and that just to take paracetamol and ibuprofen for the surgical pain.

I was nice to get home and things were going okay, I was in my usual amount of pain for a few days until it all went to hell. By the end of the week I developed an extra headache in the back of my head a place where my normal headache has never been, it has always been frontal but now I had pain at the back and sides of my head too. My normal headache had also increased to a whole new level of pain and I was in agony – I still am. This was the week after surgery but now it was the weekend so I had to wait till Monday to  speak to my neurologists team about it. I called first thing Monday and spoke to my lovely headache nurse who said she would talk to my neurologist about my extra pain and get back to me. Tuesday I saw my GP by this point I was desperate for some relief and asked if she would prescribe me something for the pain, but she said she wouldn’t give me anything without my neurologists say so, so to get them to contact her and tell her what to prescribe and then she would be happy to. By the end of the week I still hadn’t heard anything so rang again and my nurse said that my neuro had said that the issue had to go to my neurosurgeon so they had emailed him and they would get back to me. I continued to suffer with my normal headache being 5x worse and my extra headache  at the back of my head also. I heard nothing the beginning of the week and then I was at the hospital on the Thursday (3 weeks after the op on the 29th sept) to see my psychologist. Sat in the waiting room still in agony I bumped into my headache nurse, she said that she was going to call me later as she had heard back and my neurosurgeon wants to see me at 3pm Tuesday and to bring my remote encase he wants to reprogram me.

Fast forward to Tuesday – still in agony. I arrived at the hospital half an hour early and sat and waited by half 3 I went to ask reception what time they were expecting my surgeon they said that he usually doesn’t arrive till 4-5ish. He arrived at 6:15. I waited nearly 4 hours to see him by this point I was exhausted and in so much pain that I had forgotten practically everything I  wanted to talk to him about. I wasn’t annoyed at him after all the reason he wasn’t there was because he was in surgery saving lives so you can’t really be annoyed, but I was annoyed at the fact I was told to be there for 3 when they know he doesn’t normally arrive till much later. Anyway he basically reprogrammed me and said that should help, my remote is on a lower setting but I can feel the stim working more and covering a larger area which he said is good, however the sides are not equal one is stronger than the other so it’s still not right.

Despite all that I am still in agony and I don’t know what to do. I’ve spoken to a few people who had this surgery with my surgeon 4-5 years ago, and they have said being in this much pain a month after surgery doesn’t seem right, they didn’t have any surgical pain after leaving hospital and they didn’t experience a worsening in their normal condition. I know they’re not doctors and that a patients perspective but one of these people was completely cured by this surgery (though she had a slightly different headache condition to me) and another now has much lower pain levels after having surgery. A friend of mine who had this surgery and it didn’t help much developed pain in the back of the head after surgery where her normal pain had never been and it’s still there 4 years later and she is still in agony with her normal pain and has to use opiate medication just to get through the day. So hearing that scares me.

It’s over a week since I was reprogrammed and I’m still in agony with both sides of my head. I don’t believe that this is a normal reaction to surgery and I don’t know what to do. I’m back up in London tomorrow to see my psychologist which I really need because I’m going crazy with worry about being in so much extra pain and I really don’t know what to do. To be honest I’m really scared, scared that this is going to be my new normal, scared that surgery has made things worse and it’s not going to improve. Did I make the wrong decision in having this surgery? Was it a mistake and now I’m stuck with the consequences of now being in more pain than I was before surgery? I should probably talk to my neurologists nurse and discuss what is going on with them, but I feel that I need to talk out how I’m feeling with someone first and get someone else’s opinion about what I should do before I talk my neuros team.

Oh and I’m taking volunteers for someone to come and chop off my head for me, as this seems like the only logical solution right now. So if anyone fancies chopping it off, let me know!

Stressed.

Saying I’m stressed would be an understatement, I’m beyond stressed so much so I had a bit of a breakdown last night to my mum and was in floods of tears. I very rarely cry, often I feel like crying about things but the tears never seem to come. However when I do very occasionally cry it’s because something is so overwhelming, and I need to make a change because something is seriously up.

I’ve been trying really hard over the past week and a half to put things in place in order to try and feel better and help my depression. My pain management techniques, mindfulness, meditation, relaxation etc etc. That part was going okay, and I started to enjoy and look forward to my mindfulness sessions each day and I started to feel a bit more positive about everything. However college work kind of took a back burner, I’m unsure of how to manage everything in my life, how to do all my pain management and all that involves and attend college and get the work done outside of college. I don’t know how to do it all. I want to feel better and that’s a priority but how do I do all that and college work, I feel like I can’t do it all and I am so stressed about it. I also find it extremely difficult to get work done outside of college as well, pain gets in the way and I don’t feel able to do any of it most of the time, and I’m so focused on trying to get better depression wise that I’m finding it difficult to manage everything else I have to do.

I have a mountain of college work that needs to be done but how do I manage it all effectively with incorporating pain management; meditation, relaxation, pacing, self care etc etc. I just don’t feel able to do it all.
Yesterday I had college, I had already emailed my teacher to tell her I hadn’t been able to do the homework, it was an issue of priorities. I hadn’t been able to get it done in the two weeks we were given to do it because of the pain, it came to the day before and I still hadn’t done it and the pain was bad yet again. It was either push myself to do the 1000 word homework and not be able to attend the lesson the next day because of the pain or not do the homework and attend the lesson. My teacher said it was fine to extend the deadline so I had an evening of rest and managed to attend the lesson yesterday. Not only do I have the homework on my mind that needs to be done, I have two law assignments to do by the 25th of this month and I still haven’t decided on a topic to do them on, so I have that hanging over me as well.
It doesn’t seem like a lot but when you consider that this time last year I was doing nothing and bed bound the majority of time, it’s a lot! Yesterday I was in the lesson and I was so stressed about the amount of work I have hanging over my head and the fact that the pain is bad I left the lesson early and went home. Where I eventually ended up having a breakdown to my mum and was in floods of tears.
Today I had law at college, still stressed about everything but made it through the lesson, however it was mostly just our teacher talking to us about cases for assignment topics and not much work was involved. Was then meant to have a one on one with my teacher about our assignment but time ran out before he could get to me.
I then had my weekly appointment with a lovely woman who listens to how I’ve been each week and tries to support me in any way she can. I told her I was extremely stressed about all this and she suggested speaking to my teachers first and also coming into college on a Friday to try and do some work in the inspiration room which she runs for select people who need a quiet place to escape or work. So I’m going to try and do that on Friday, I also have an appointment in the afternoon with my law teacher to discuss my assignment and my difficulties. Today when I got home I emailed my psychology teacher as well to tell her about the current issues I’m having with all this, she knows some and that I’m sick etc etc. But she emailed back a nice email saying she understands my dilemma, that she wishes there was something she could do to help, that I am doing well and meeting deadlines better than a lot of other people in my class and that I have potential; which was nice to hear. She said that if there was anything she could do to help just to let her know, and not to worry too much about deadlines or leaving class because she is fine with it and understands the reasons behind it. So that was okay.

I’m still feeling very stressed and not sure what to do. I can’t quit because that is failure and I can’t deal with anymore of that; I have to do this, I need to achieve and I need to be able to do something meaningful, I need purpose.

The issue is that last spring/summer when I managed to get myself to a better place I had little to no demands, I could focus all my time and energy on getting to a better place. But this time although I know that I can do it because I’ve done it before, I have college to keep up with and focus on as well and it’s proving to be very difficult and stressful and I’m not entirely sure what to do or how to cope with it all.

Time to get back on track; this time I mean it!

So in the wake of the disappointment that was Cefaly, I got quite depressed again and could feel myself going further and further down hill. However I have decided to turn it all around, I have decided I want to get better again, not the pain (that would be ideal but lets be realistic) but the depression part, the feeling okay despite pain and illness, the living a good life despite pain. Accepting my illness but trying to lead a positive and good life despite it. This is the starting point that I needed to hit, I needed to make a conscious decision to get better otherwise it was never going to happen and I would just continue being miserable and depressed because that was easy and recovery is hard. I was in that place during last spring/summer and it was good, I was still in pain but I could cope with it, I didn’t let it pull me under and I fought to get better and live a better life despite the pain I have been given. I want to get back there now, and I’m going to fight for recovery from depression.

Yesterday I devised a somewhat plan, well it’s more like a tick sheet. It’s a table, it consists of everything I need to incorporate into my day, pain management techniques like mindfulness and relaxation, things I enjoy like watching a TV show, going to Tae Kwon-Do training, which also classes as pain management, things I’m working towards like college work andTae Kwon-Do theory, to name a few examples. Also included is boxes to make sure I take all my POTS medication each day as I am notoriously bad for missing doses and eating breakfast, lunch and dinner after my brief episode of hardly eating. I don’t have to do everything every day some days are crossed out for certain activities, in that I don’t have to do them on that particular day and there is a column of goal number of times a week I am meant to do each activity, and then the actual number of times I did the activity each week column. There are about 18 things on my tick list to do, not all to be done every day, and when I do the activity it doesn’t have to be done that long, take reading for example, could only be 5 or 10 minutes a day and that is fine, or Tae Kwon-Do theory studying, 10-15 minutes is fine. Every activity has to be paced and if it needs to be done for more than 20 minutes there has to be a break every 20 minutes in that activity. I tick off the activities or tasks as I do them, and don’t beat myself up if I don’t manage to incorporate everything in each day. I feel like this may work, so far today it has kept me relatively busy but there has been lots of periods of rest in-between activities or tasks. I’m aware that doing too much will be counter productive but most of my tasks/activities on my list are small things that don’t last particularly long, mixed in with a couple of longer ones like Tae Kwon-Do training and college work. I work well with lists rather than planning what I’m doing every hour because then I tend to just not do what I’ve planned to do, this way it doesn’t matter when I do the activity in the day. So for the time being this tick list is going to be my guide until incorporating all my pain management techniques in my life become second nature again.

I’m going to pull myself out of this hole I seemed to have dug for myself and into living my life despite pain and achieving things despite pain. This way of natural pain management and acceptance worked before and it will work again. I am a work in progress, but I will get there, there may be some bad days but that is expected when you have chronic pain but not every day has to be bad. I know recovery is hard because I have done it before, but it was worth it for how much better I was feeling despite being in pain and I want to feel like that again. This is the starting point.

I need to get back on track.

I need to get back on track instead of sitting here being miserable, depressed and angry because of my pain. It doesn’t help. This secondary suffering i.e. the depression the pain causes me isn’t beneficial it’s destructive. Somehow I have managed to let the pain take over my life again and to be defined and destroyed by it.

I saw one of my favourite people in the world when I was in Dubai last week, the one person that probably knows and understands me best in the world. I am so lucky and grateful to have her because I honestly don’t know what I would do without her or where I would be if I had never met her. She always gives me a good honest talking to and advice and I know it comes from a place of love and talking to her always makes me feel better. She saw this breakdown coming a while ago due to me taking on so much after so long of doing not a lot. She described it as being like a seesaw, on one end would be my demands and on the other my support. And that currently my demands were way higher than my support, demands now being things like college, work and Tae Kwon-Do. And support being things like acceptance and mindfulness, pacing, positive thinking and challenging negative thoughts and of course her. She said my demands had increased so much but my support had decreased, which is why I’ve had sort of a melt-down, breakdown, relapse, whatever you want to call it because my support was almost nothing. I also got a bit of a telling off, as when she told me to contact my old psychologist to make an appointment I did so. But I did it by email and then I waited 2 weeks for a reply rather than picking up the phone and calling her to make an appointment, because I thought it would be too weird to call her. But maybe if I had called her and got an appointment then maybe I wouldn’t have got quite so bad.

She said that I need to increase my support again, so that it balances out on that seesaw with my demands. She has let me borrow a book that is about mindfulness for health and pain, I have read the first two chapters and so far I like it. There is a CD too with mindfulness meditation recordings to listen to and practice as well. I have the closest appointment date with my old psychologist that I could book, due to the fact that she is away for the two weeks prior. I know I need to re add all the techniques I learnt back into my life and make time for them, but it is hard especially when you are feeling so low, but I suppose that is the best time to do them. It is much easier to be depressed to be honest, recovery is hard and takes a lot of work for the rest of your life, so it’s a big commitment.

I will admit to despite the amount of stuff in my life I have taken on at the minute, this time of year through to about February I always struggle. I have bad memories surrounding my suicide attempt which was end of September 2012. Then it’s the lead up to January, my headaches anniversary date, which always sends me into a bit of a deep dark hole.

I know that I will never get to where I want to be unless I get back to a place of mental stability. If I don’t I don’t think that I will be able to be what I want to be, and achieve the things that I want to achieve. I have just got to find it within myself to be able to be strong enough to not let the pain control and define me like I have for the past month or so, to be able to accept my condition again. Apparently it’s easier to do the second time around because you know you can do it as you have done it before. But I’m unsure of how to apply my support into my life again, especially the pacing with college and everything. It is also so very hard to add these things back in when you are in a constant state of misery. I know I need to get back on track with everything but I’m just unsure of how to get there when I’m feeling bad, I know I’ve done it before but when I did it before I had practically no demands and now I have a lot in the scheme of things.

I know it’s not all going to be rosy and there will be bad days, but at the minute the bad days are every day, bad pain days, bad emotion days, bad everything days. I need to be able to cope with the bad days so if I am having a particularly difficult day pain wise and thus emotion wise I accept that it is out of control and just let the emotions wash over myself without getting involved and living despite the pain. Which at the minute isn’t happening, at the minute I just let it control me and live in a constant state of misery which isn’t good and will get me no where, if anything it’s easier than working to feel okay and stable.
But I was there not so long ago and I need to get back there, but I’m not entirely sure how.

I’m struggling and I’m sorry.

I’m sorry I have been somewhat absent recently, I’ve been trying to write this post for the past week or so but I’ve really been having trouble with it and admitting to myself that I am an absolute hypocrite. I talk a lot on here about recovery from depression, which I had been experiencing for the past 6 months or so. I talk about how it is possible and I know it is because I had been so much better emotionally through acceptance of my condition. But I’ve had a set back and as well as feeling pretty down I feel like I am the biggest hypocrite because I’ve spoken so much about recovery, and I hate to admit it, but I’m not doing so good. I feel down, not like severely down or depressed like I have been in the past but I’m not doing so good emotionally. I’ve lost my positivity, my hope and my acceptance and I don’t know how to get back there and I don’t think I can.

I can’t seem to find the right words to explain how I am feeling but it’s not too good. My head hurts and it hurts all the time and I feel miserable about it. I’ve lost my acceptance of my condition and I’m struggling to get back there. Why should I accept something that shouldn’t be there and isn’t okay, because the truth is it’s not okay to be in constant pain. I feel weak and like I am letting everyone down by feeling like this. I’ve had so many people tell me over the past 6 months that I’m strong, that they are proud of me. But they don’t know I’m struggling again and if they did know I feel like I would have failed them because I’m not strong and they shouldn’t be proud of me. I’m starting to fall down the rabbit hole of depression again, and I’m not sure how to get back out. I feel like I’m a lost cause again that no one can help and that maybe for me complete recovery of depression just doesn’t exist due to the intense pain I am always in.

I am only human and I do have chronic pain which has it’s ups and downs but I feel as if I have failed my readers by feeling bad again and that I am a hypocrite for talking about recovery and then starting to go downhill, so I am sorry. I know it is possible to recover from depression and if you have depression and you are reading this it is possible to feel better but maybe it’s just not possible for me to get completely better from depression due to chronic pain. Maybe I’m just not strong enough to keep my acceptance going, I feel weak and I feel like a failure.