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.

 

The struggle of talking.

When I got sick 7 years ago I bottled up all my emotions for months, I didn’t feel that I had anyone to talk to and not only that but I didn’t know how to talk about what I was feeling. I had never been one to be open about my feelings, because one I never really had any emotional problems till I got sick and two in my family we were never really very open about feelings,it just wasn’t really in our nature.

So when I found myself in the school counsellors office 4 months after getting sick, the result was silence and an uncontrollable shaking of the legs because I was so petrified. I wanted to talk but I didn’t know how to and I thought that vocalising how I was feeling would make me feel weak and vulnerable. It took Jo weeks of persevering with me for me to be able to say anything. Jo taught me how to talk, she taught me it was okay to feel everything I was feeling about my illness. One of her suggestions for getting me to be open was to write down what I was feeling and bring it in to read out loud. Writing it down didn’t feel quite so scary and once I had started it was hard to stop, everything I was feeling just flowed out of me onto the paper. As you can see from this blog, I still write to this day and it is a main thing which helps me cope. After a while talking became easier, but I could only talk to one person, Jo. As the years went by I had to adapt and be able to talk to other people other than Jo, multiple doctors, other psychologists and psychiatrists, with time it became easier depending on the person.

I’ve just started with a new psychologist, he’s taking an approach I have never had before and I feel like I’ve forgotten how to talk. Sometimes I’m transported back to my first appointment with Jo where I didn’t want to say anything out of fear that I would be analysed, fear that what I was feeling wasn’t normal, fear that talking would make me feel weak and vulnerable. Despite feeling that way still sometimes I know that my feelings are valid, and that I’m not the only one with NDPH or any other chronic illness who feels this way about it. It’s nothing to do with the quality of my new psychologist it’s just the way my mind works and I guess I’m just not comfortable with him just yet.

I find the psychodynamic approach he is taking very hard going, it’s tough to look at my anxiety in detail and finding the reasons behind why I feel the way I do, the feelings behind the anxiety and the anger I have. I’m not sure about the approach, but I’m willing to give it a go. I’ve been in therapy for pretty much the last 7 years, and although talking about how I feel has been helpful beyond measure, I’ve never really got to the consistently stable place I crave so bad. So maybe starting with someone new and trying a new approach is exactly what I need to get out of this pit of depression I get stuck in all too often. Tomorrow I have another appointment with him, last weeks was slightly better than my first one so I’m hoping they will continue to improve as I get more comfortable with him and the approach.

I wish I knew…

I wish I had a path, or some direction but all I feel is lost and depressed. People tell me I need to be mindful and take one day at a time but how can I even do that when I don’t know where I’m going at all. It would be alright if I knew where my life was going or had something to work towards but I feel like I’m lost in the darkness and I don’t know how to find my way out.

People ask me what I am going to do this year but I really don’t know. I don’t know where my place in this world falls and I don’t know how to figure it out. I just don’t know. The problem is, I’m in pain and not the sort of pain that improves with medication to become manageable.  I have severe constant headache with no cure and never any relief. I struggle to get through a day let alone a year. My pain is not manageable and most of the time it’s severe, surgery only made it worse and gave me two headaches instead of just the one.

So when I’m asked what I’m going to do this year, first I feel ashamed to say well I really don’t know and second it just makes me feel depressed. Because no doubt it will be like every year, filled with pain and misery and only glimpses of stability, only distant dreams of the life I wish I had, the life I feel that my headache stole from me in 2010.

At the minute I just feel more lost than ever, everything I try to do never works out because of the pain. So I feel like I am resigned to doing ‘not a lot’ for god knows how long, forever? I am having a nightmare with the fact that surgery has made things worse and I really don’t know what to do anymore other than feel depressed. I wish someone had some answers for me because I sure don’t.

I wish with all my heart I was able to do something more than ‘not a lot’ this year  and I wish I knew what I should or could do with my life, but I really have no clue.
If you have any suggestions please fire them my way!

 

Was it a big mistake?

I’ve realised recently how many unresolved feelings I have about my illness, and how none of them have really changed over the years. It doesn’t matter how much I try to escape my pain, how much mindfulness I do, how much I try to accept this condition or even all the many many treatments I’ve had, my never ending headache still remains as strong as ever.

I’m 2 and a half months post surgery, the tweaking they did a few weeks ago (when they finally realised I was being severely overstimulated and it had caused allodynia hence the severe nerve pain at the back of my head where I could feel the stimulation) has relieved the allodynia but I am still experiencing headache pain at the back of my head which is not normal for me it feels like my normal headache has doubled in size. I haven’t really told anyone about it as I don’t want to let everyone down with the fact I’m still in a lot of pain. At the minute I’m in Dubai with all my family spending Christmas and New Year here as my Dad lives here, right now I’m led in bed in agony. The pain is horrific and has been since last night.

I know I should be positive about the outcome of surgery and I know it’s still really early but I have a gut feeling that the surgery I had is not going to help me. Which leaves me to feel completely and utterly upset and helpless that my last ditch attempt at a life with lower pain is not going to be successful. That I’m going to have to live with extreme pain for the rest of my life that prevents me from doing anything worthwhile, from being independent, from having some sort of resemblance of a normal life.

A lot of my feelings have come bubbling to the surface recently, feelings I buried deep within quite some time ago. The anger I feel towards life, the depression that comes with chronic pain, the complete and utter loneliness that I experience and the distraught I feel towards the loss of my normal life nearly 7 years ago now.

I’m trying hard to keep everything together, I mean it’s Christmas for fucks sake, I should be happy, right?! But at the minute I’m a mess, it’s also quickly approaching the 14th January, a date that messes with my head, the date it all started 7 years ago. Yes you say it’s just a date it shouldn’t effect me, but I feel like I lost so much 7 years ago on that date and it sends me down a deep dark spiral every god damn year.

I wish one day I could write a post to tell you all that I’m miraculously better or even just that surgery has reduced my pain; I’d settle for that. But I don’t think that will ever be possible. I know my headache better than anyone and I feel like it’s here to stay. I feel like it doesn’t matter what I try my headache will always win and no one can do anything about that.

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!

It’s been 3 years…

Today marks 3 years since the suicide attempt that nearly killed me. It was my third attempt that week, though the first two were more like practice runs to gauge how much medication I needed to take. I had prepared for that day for months, I had spent hours on a suicide note, wanting my last words to be exactly right, everything was ready and I was ready to die.

My memory of it is fuzzy, I remember only brief flashbacks. I don’t even remember getting all the medication out the packet and taking it, the first thing I remember is being slapped in the face in the car by my mum to try and keep me awake on the way to the hospital. I remember a Muslim porter at the hospital praying over me in the lift as I was taken to intensive care. And the next thing I remember is waking up to see my school counsellor at my bedside, the first thing I said to her with tears streaming down my face was ‘why am I alive?’

The pain had pushed me to the edge and then it pushed me off, I felt like there was no other way out, I felt like I had no choice. If I wanted to get rid of the pain my only option was to die and that seemed like the best option for me.

Since that day 3 years ago it hasn’t been easy, I try to keep my head above the water however sometimes I start to drown in the negativity I am so prone to. Though there has been periods of time since moving back to England 2 and a half years ago that I have felt mostly okay despite pain, that I have felt happy despite pain, that I have felt able to cope. So I know it is possible and I just have to keep working on it constantly and try not to drown in darkness that is sometimes oh so comfortable.

My journey with my never ending headache has been hard it’s been over 5 and a half years now and it’s unlikely that I will get better. But I have survived this far and I don’t want my headache to win, because I know I can be happy despite it so I will keep fighting for that.

I will leave you with my favourite quote which helps ground me on bad days:
On particularly rough days when I am sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%, and that’s pretty good.

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.