Heartbroken.

I’ve been a bit quiet on here again recently, writers block would be the wrong word. It’s more like I’m actually really struggling and I haven’t been sure how to express it to anyone, even on here.

My pain levels are still worse since my stimulator was turned on a few weeks ago, my 2nd extra headache is still raging and I’ve resigned myself to the fact that I really don’t think my brain likes what is happening to it. I feel completely and utterly devastated and I really do not know what to do anymore. I was hesitant to call my neurologists team because I didn’t want them to think that I haven’t tried hard enough, that I’m just giving up. When really I’m in agony, I obviously wanted this to help more than anyone and I’m heartbroken that it has been a complete disaster and I’m worried I am now going to be stuck worse. I did however call my team and spoke to one of my nurses, telling her it was worse again and how I wished they would take the stimulator out. She asked if I had told my neuro that and I said not yet but I would be telling him when I see him in 2 weeks time. She said she would talk to him this week and said she would call me with what he says, so hopefully I will hear something tomorrow.

I’m really struggling with the failure of this treatment which was a last resort and the complete and utter heartbreak it is causing me. The overwhelming fear of spending the rest of my life in agony, the sadness I feel that I will never be able to move forward with my life, that all I will ever be is sick and in pain. And I honestly don’t know how to let myself feel the grief that I know is there.

I’m really at a loss of what to do and how I could even hope to move forward from here because I really don’t think it’s possible.

The art of looking OK.

I’ve been in pain for over 7 years, but if you didn’t already know you probably wouldn’t be able to tell. It’s taken me a long time to perfect the art of looking okay even when I’m in agony. But now the majority of the time I look relatively normal but nobody see’s what I look like when the pain is at it’s absolute worst, because I stay at home and in bed.

My pain levels are always on the high side, but I am able to mostly function a portion of the time. Over the years I’ve learnt to deal with the pain better, but I’ve also learnt to hide the look of pain in my face and hide how I feel from the world. When my headache first started I had no idea how to deal with it and I was unable to hide the pain and how depressed and angry I felt, and it drove everybody away other than my family and Jo. I’m not saying that nobody in my life these days knows about my headache; they all do and I’m completely fine with that and telling them updates on my stimulator and medical issues. But when I’m with people they have no clue the extent of how actually I feel like my head is about to explode or that someone has stabbed me multiple times in the head. I hide my depression and just how badly I feel about the fact that I’m going to be in pain for the rest of my life, how surgery was my last attempt at a life with less pain and it’s been a complete and utter disaster that has only made me worse. I hide just how completely devastated I feel about that right now, and I don’t necessarily want to talk about it with anyone because I honestly don’t know what to say and I don’t want to see the disappointment in everyone else’s eyes, because they were all rooting for this to be my answer too. My body has let me down, it has let everyone down.

Everything I do is clouded by the pain – I go to training (my best relief and coping mechanism) and hang out with some of the most amazing people afterwards having a laugh and a joke which is hilarious and always makes my day and slightly distracts me from my pain and the thoughts in my head. The pain is not great whilst I’m there but I get home only to be engulfed by agony. And how my life is right now is really all I can manage, I wish so badly I could manage more and it breaks my heart every day that this is all I will ever be and I’m really not sure I will ever come to terms with that.

I’m really struggling at the minute, I’ve got some aspects of my life that keep me going, my training and the people there, they don’t know it but they keep me alive and make me laugh and smile a million times more than I use to. But theres a hole in my heart that the pain has created and a deep rooted depression that I hide so well but will probably never recover from.

Rock Bottom – rising from the darkness.

Last week I went to this fantastic event in London, all I knew about it was the title which is quite self explanatory and that it was being partly run by someone who has some chronic illness’. I was really nervous about going, I’m not very good socially with people I don’t know really well, but in the end I was so glad I didn’t chicken out and that I went because it was fantastic.

I arrived at where it was being held and there wasn’t that many people there yet, I greeted the people running it briefly and sat down anxious as hell. I ended up talking a lot to Jacqui  and Bash who were running it, turns out Jacqui has some of the same conditions I have so we really got on well and had a lot to talk about. She had advertised the event on the Mast Cell Activation Facebook group which is where I saw it, I was the only person in that group who came which struck me as odd actually as I think a lot of people in that group could have benefitted from coming.

The event started and it was basically Jacqui and Bash’s stories of how they hit rock bottom through a combination of trauma and illness and how they basically rose from the darkness and have taken steps to overcome it and move forward out of the darkness and on with their life. I won’t go into their stories, they’re not mine to tell but they were incredibly emotional, relatable and inspiring and I left feeling incredibly grateful that they had shared their story with me and very inspired to continue trying to get better myself.

I’m actually meeting up with Jacqui on Friday after I’ve had my stimulator reprogrammed, which should be really nice as she is lovely and we have a lot in common because of having some of the same conditions. So I’m excited to chat some more with her.

I am so glad I went out of my comfort zone to go to this event as just hearing their stories has really made an impact on me. So thank you Jacqui and Bash!

 

 

 

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.

 

My fear of failure.

I’ve been seeing my new psychologist in London every week for the past 4 weeks, to start with I wasn’t too sure about it, but it’s been going okay and I’m getting use to him and his approach. It’s hard going in the appointment but I seem to have actually progressed with this psychodynamic approach as each week has gone on I have got better at identifying my emotions and the reasons behind them and my anxiety. It’s also been getting easier to talk to him, rather than lots of silence.

Last week he asked me to talk about something he read in one of my clinic letters from my neurologist. It was to do with studying and going to uni, so I told him about how I went back to college to try and obtain some qualifications because I desperately wanted to go to uni. My main reason for wanting to go to uni was because I just wanted to be normal, and secondly that I wanted to be a psychologist. However I was unable to complete the course because of my pain and ended up dropping out of college for a second time.
He then went on to ask if I would agree to some homework, he wanted to me to go home and look at some volunteering opportunities in my local area. He suggested things like volunteering for the Samaritans. He asked if I would be willing to do something like that, I said I am more than open to looking, however it’s the actual going forward with it that would be the problem. Don’t get me wrong I would love to do something productive like volunteering however in actual practice I worry that it wouldn’t work out. I’m scared of failure, actually I’m terrified. Everything I have ever started in the past 7 years I have not completed, I didn’t finish school, then college, then I had a job/apprenticeship and I didn’t finish that either, all because of the pain getting too bad that it becomes impossible. I feel like a complete failure and I don’t want to enhance that feeling by yet again having to drop out of something because the pain gets too bad. But I’m stuck in this cycle of never doing anything for fear of pain and failure, meaning I never move forward and enhancing the feeling that my life is stuck. Today I’ve had a look at some volunteering near me and I’ve found a couple of things that I’d possibly be interested in. Both of which I’ve actually looked into before however I’ve never gone forward with either for fear of pain and failure.  I’d like to do either of them but I’m just terrified of how I would feel if I started and then had to give it up because of the pain.

He also gave me a second piece of homework, which was to get out my old college papers which I obtained all distinctions on. As often I get into the belief that I’m not clever and I have never achieved anything. The belief I have that I’m not clever is not true (hence all the distinctions at college), but I guess I try to believe it because I actually am really clever but I never get to use my intelligence and I’ve never managed to achieve anything with how smart I actually am because of my pain. So I guess thinking that I’m not clever is almost like protection from the feelings I get in knowing that I actually am clever but I feel it will never amount to anything worthwhile and meaningful. That probably doesn’t make a lot of sense, but somehow it makes sense to me. Anyway I got them out and had a read through them and I was reminded about how easy and straight forward I found the assignments. I was also reminded about how I felt when I realised I was going to have to drop out of college because the pain was too bad. I was distraught despite knowing yet again in my life that education was not the right thing for me and my headache and that in my eyes I had failed at something again.

This homework task was okay, I kind of figured out the reason behind my thinking that I’m not clever when actually deep down I know I am. It also revealed how much I’d like to do something productive like volunteering, though I don’t know if I will go through with it because of my fear of failure due to pain.

I’m in London twice this week, Wednesday to finally see my neurologist and hopefully get some answers on my extra pain. And Friday to see my psychologist again, which is my final session out of an initial block of 4 sessions, however I would like to continue seeing him as it seems to be being helpful, so hopefully he can offer me some more sessions.

 

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!