It’s the never ending headache’s 4 year anniversary!

I got a notification today telling me it’s my blogs 4 year anniversary. It’s crazy to think that it’s been 4 year since I started writing on here. I’d been writing similar for a couple of years before but on Tumblr under the same sort of url, but closed it down and started out on here properly.

My reason for starting writing was to help me cope with the challenges of living with this headache, to give me an outlet because I’m not very capable of voicing my feelings to anyone. I needed a safe place where I felt able to express how this condition makes me feel somewhere other than the once a week session in a psychologists office. It has always and still does make me feel so much lighter once I have written down and shared how I feel; it’s very therapeutic! I’d really recommend blogging/writing to everyone, especially if like me you tend to bottle things up and have difficulty expressing and sharing your emotions with people.
My blog has always remained very private to me, as in I don’t tell people who I know in real life and see all the time about it. Most of my friends and family don’t know it exists and the couple that do respect my privacy enough and how I feel about not wanting to share it with them. I just simply wouldn’t feel comfortable being as honest if I knew family and friends were reading and knew everything I write on here.

I know this blog isn’t often too positive or hopeful and in some ways I’m sorry about that, I wish I could be more of that for you all. But I’m not going to lie and tell you that living with this condition isn’t hard or it’s easy just to get on with it, suck it up and continue with your life as if you didn’t have a headache. Because that’s not possible for me and not for a lot of people with NDPH, that being said a lot of people do work and study. Most of us just try to get on the best we can, whatever that may look like or our situation may be. I pride myself of this being a personal honest account of how this condition affects my life, the problems it causes and how it makes me feel. And I hope that is okay.

When I started this I never thought that many people would be interested in reading about my life and the issues I have faced and still currently face with my headache, turns out that quite a lot of people do. To those of you that read my blog and have ndph or a different headache/migraine condition, I hope that somehow knowing that you’re not alone in this or how this may make you feel is of some small comfort.
To everyone those that always comment and are rooting for me, thank you means a lot!
And finally to all the lovely people who have emailed me since I put a contact email on here. It’s been really nice chatting to each of you, I hope that sharing experiences, helping each other feel slightly less alone, and chatting about random stuff in our lives as a distraction helps you guys as much as it helps me.
If you haven’t emailed me but would like to talk to someone who gets it, share experiences etc, feel free to send me an email as I’d love to hear from you.
iamtheneverendingheadache@gmail.com

Thanks for all the support over the past 4 years, I’ll keep writing 🙂

 

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.

Back to therapy.

So I had an appointment to see my psychologist today, after not seeing her for 4 months. I should have made an appointment and gone back a couple of months ago, but I just let everything get worse and worse.

It was nice to see her and talk to her, she is one of two people I feel able to talk to properly, the other being my previous school counsellor, who I still talk to a lot and still tell her pretty much everything. I never thought I would find someone else that I felt as comfortable talking to, but I did and my psychologist is great and I feel like she understands. She doesn’t know me as well as my school counsellor does due to the fact she hasn’t known me as long or worked with me for as long as I have seen and been in contact with my school counsellor. But she is lovely and it was really nice to be able to talk to someone about how I’m feeling properly, without me not feeling able to be completely honest about how bad I’m doing.

We caught up on what has been going on with me since I last saw her back in July, she asked if I wanted to come back to therapy. And it’s not that I didn’t want to or know that I needed to go back it’s that I didn’t want to feel like I had failed by having to go back, if that makes any sort of sense.
I explained how difficult college is and how I’ve practically been in flare up since I started college in September and how depressed I am again. I haven’t spoken about this on here but I now developed some issues with eating which has been going on for a a couple of months now, but recently has gotten progressively worse. I don’t eat, well hardly anything, and I ignore the fact I’m hungry, which gives me a sense of control. It’s not about weight, it’s about control, in the past I have used self harm which gave me control but now instead of that I have turned towards not eating to give me a sense of control in my life as I have no control over my pain so I search for control in other areas of my life. It’s very twisted but she is going to help me with that also. But everyone is very concerned about it all, my mum also knows about it.
She looked a bit overwhelmed with the amount of issues that need to be addressed at the minute and said she wasn’t quite sure what one to address first, but thinks that if we focus on getting me less depressed and pain management techniques then hopefully that will help sort out my eating issues.

Anyway I will be seeing her weekly again for the time being to try and help how I’m feeling.

Doctors: Conclusion.

My experience with doctors hasn’t been easy to say the least, I’ve seen so many over the course of the past nearly 5 years now, and most of them haven’t been that great, haven’t had a good bedside manner (That includes nurses as well: I once had a nurse in London say to me ‘You can’t be depressed and self harm, I bet you have a flat screen TV at home you have nothing to be depressed about’ which sent me into floods of tears and I don’t cry often but that really got to me), haven’t listened or seemingly haven’t wanted to help much. Doctors who I was seriously questioning if they had ever even gone to med school because they seemed so lacking in their ‘expertise’. For a while my faith in doctors was completely crushed and as I’ve written this series you have seen that I eventually found some ‘good’ doctors, and not only good at what they do but nice as well, so they are out there but often it can be so difficult to find them.

When my neurologist told me last November that there was nothing more he could do because we had exhausted all options I felt so utterly and completely lost and helpless and it sent me in to an even deeper pit of depression than I was already in and started hoarding medication again. But with a lot of therapy from a psychologist who specialised in treating those which chronic pain conditions, I learnt acceptance. I always thought that as long as I had NDPH and was in pain I would always be depressed, that I would never recover from depression because it was so closely linked to my pain. When actually it doesn’t have to be that way, in my opinion we have a choice, we can let the pain control and define us, we can let it hold us back from the things that we want to do or as hard as acceptance is (and believe me it’s not easy but I can assure you it is totally worth it.) we can accept our condition and try to move on from it even though it’s still there, we can try to live our lives as full and as happy as possible despite the pain.

For me acceptance was scary and totally unknown, I felt safe in my bubble of depression which consisted of me sitting in my room feeling miserable as hell, to go out into the real world was scary to rejoin society again and start living my life and moving on from the pain that had been holding me back for so long. When my neurologist told me there was nothing more he could do, I felt angry, angry with the world, angry with my condition and angry at him because he was the doctor and wasn’t he meant to fix me?! But really he did the best thing by being honest with me, he allowed me to be able to move on. Getting out of treatment for my NDPH has also been great for me, the medications were horrible, awful side effects all the time, I gained 2 stone in weight for the past two years, I’ve lost all the weight now and and now back to almost the weight I was before I got sick, I’m no longer completely exhausted all the time because the medications were making me so sleepy, my hair has also all grown back from when I lost over half of it due to Sodium Valproate. I look like my old self again and I pretty much feel like my old self again, which I never thought I would get back. Acceptance is a powerful thing and it’s changed my life for the better, if my neurologist hadn’t been honest with me then I don’t think I would have got here with still being in treatment, so for that I thank him, for that he is a great doctor.

I only got here because I had exhausted all options to treat my pain, I tried everything medical and alternative and nothing worked. I had a choice to make, to let the pain control me and have literally no life whatsoever and also no life that I wanted or to live despite the pain and choose acceptance. I obviously chose the latter but it took me almost 5 years to get here and it was only after I had exhausted all medical options. So if you are in treatment and you don’t think you are ready to accept your pain and accept that you will probably be in pain for the rest of your life then that’s fine, but I encourage you to have an open opinion towards acceptance, it changed my life and it has the potential to change yours too!

Motivation.

I think motivation is something a lot of people struggle with, chronic pain/illness or not. Whether it’s motivating yourself to get out of bed when you know all the day has in store for you is pain and illness or whether it’s motivating yourself to write that essay for school that is due in soon, or get up and go to work.

When you’re sick and in pain and have been for months or years motivation can be one of the hardest things. Just getting out of bed can feel like climbing a mountain, climbing a mountain is an achievement but so is getting out of bed when you’re chronically ill. Depression often comes with chronic pain, it did for me. And for years I saw no point in getting out of bed to face a day where all I knew was in store for me was pain and misery caused by the pain and every day was like that. I saw no point in school because I didn’t even want to live if all I was ever going to be was in pain, I saw no life or future for myself that I wanted so what even was the point in school. The pain defined me and it held me back. After moving back to England in Spring 2013 to seek better psychiatric help, I was still severely depressed, I didn’t see the point in doing anything if I didn’t have a future, so I just stayed in bed day after day with no motivation or desire to do anything because I just didn’t see the point in anything if all I was ever going to be was in pain.

After 7 months of pretty intense therapy my depression started to lift for the first time since getting sick. It was only then once I had started on my path to acceptance that I started to get my motivation back, that I wanted to live my life despite the pain, that I saw my future and for the first time in a long time I wanted it even though I knew I would still be in pain probably for the rest of my life.

Doing anything and being motivated when you’re sick and in pain can be the hardest thing, but even if you just get out of bed on a bad day, that’s an achievement.

I truly believe in therapy, I believe it can work if you let it in and put in the work, it can change your life and make the difference between life and death. That being said I get that some people may not want to go to therapy, they may feel like it’s not for them and that’s fine to. I also believe that if you are going through something like chronic pain/illness that you need someone to talk to about it, though it doesn’t have to be a therapist. But therapy helped get my motivation back among other things. It’s less than a month now till I start college, starting to get a little bit nervous but I’m excited at the same time. I’m feeling pretty motivated for it, I want to achieve my goal of passing so I can get into university. And I’m going to do it despite the pain!