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.

 

Why exercise is my most important pain management tool.

Exercise is my escape, escape from my thoughts and the pain in my head. I know a lot of people with chronic pain and illness are unable to exercise but for me it’s one of the things that keeps me going.
My main source of exercise is Tae Kwon-Do, I’m a 2nd Dan black belt and qualified instructor, when I’m training or helping out in our club teaching it’s the best relief I get from the pain, it’s still there but I’m so distracted by what I’m doing that the pain isn’t at the front of my mind. I also don’t really have to concentrate to do Tae Kwon-Do, I’ve been doing it for 15 years it’s now so natural that it just automatically flows out of me so I don’t even really need to think or concentrate on what I’m doing. It’s a complete escape and the best and only relief I get. However afterwards my pain is often worse but I usually train in the evenings so mostly I go to bed shortly after getting home. Although often it is worse afterwards, it doesn’t put me off training because of how free I feel whilst I’m doing it, so the worse pain after is worth it for some partial relief. I do also go to the gym which also helps, not quite as good as Tae Kwon-Do but works on a similar principle.

Tae Kwon-Do also saved my life, it gave me a focus and it helped prevent me from self-harming as there was no way I could do both. Tae Kwon-Do means a lot to me and so do the lovely people I train with. When I enter the Dojang (training hall) I cast aside how depressed I’m feeling and I immerse myself into Tae Kwon-Do, it’s almost like a type of therapy for me. When I train it’s the one time of the day I feel happy and free, TKD is a main thing that keeps me going and gets me through the day.

I have a  10 year goal, I want to be a 5th Dan Master by the time I’m 33, that is the quickest time frame possible to do it in and there is 3 more gradings to go to get there with a waiting/training period that increases with each grading. I have to take every grading on time and pass first time to reach my goal and I will reach it, I will not let myself fail. I work hard when I train to be the best I can possibly be, teaching also helps me improve and the gym helps me gain more strength and endurance in order to improve my technique.

I know now for most people with chronic pain or illness exercising is near impossible, and I know I am lucky in that I am able to. And don’t get me wrong there are time when exercising is impossible for me too, if the pain is already really really bad there is no way I can go to Tae Kwon-Do or the gym. But when I am able to, boy does it help me feel better. Without Tae Kwon-Do I would be even more depressed than I already am, TKD keeps me going and keeps me sane.

 

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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.

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.

Life crisis at 21.

I have recently been in the mist of a life crisis at aged 21, the trigger being having had to drop out of college and realising that my dream of going to university was just not going to happen because of the pain. It was made worse by the fact my younger sister is heading off to university this month, obviously the way I feel is not her fault, but it just makes me feel a bit rubbish that she can do something I can only dream of. I have been struggling to find my way, unsure of what to do with my life, unsure of what I want, not knowing what I can cope with and having next to no qualifications definitely doesn’t help either. It made me feel very depressed, I am the sort of person that needs a plan and if I don’t have somewhat of a life plan I tend to go a bit downhill to say the least, so that is what happened.

If you read my blog regularly you will know I do Tae Kwon-Do, have been training since I was 8 and a black belt since I was 13. It is the only thing that has ever helped my pain, and not only that, I love it more than anything. In June I took part 1 of the instructors course and qualified as an assistant instructor. To become a fully qualified instructor and be able to set up your own school you have to submit a business plan, get invited to part 2 of the course and pass the written and practical test which is happening in November. For ages I put off doing my business plan unsure if being an instructor was what I wanted for my life. I bounce between feeling like it is something I really want to do and also feeling trapped because I feel like it is the only thing I can do and it is what everyone I know expects me to do. Two side of me have been torn, I love Tae Kwon-Do, both training and teaching, but being an instructor was never my dream, so that has sent me into a bit of a crisis as well.

At the minute I am in the phase of wanting to be an instructor, I am working on my business plan which is due soon and then I will hopefully have the instructors part 2 course in November. I am hoping to combine some teaching Tae Kwon-Do classes with maybe a part time job or some volunteering during the day to keep me busy. I am hoping this phase will stick as it is really exhausting jumping in and out of not knowing what I want to do and breaking down because of it.

For the past 2 years since I’ve been back in England I have been training to take my 2nd Dan black belt grading, I’ve been on courses, special training sessions and to competitions in order to qualify for this grading and I’ve been training hard at the club I go to as well. I finally had my pre grading in Bristol on Sunday and it went really well and I passed, now I have a months more of hard training and then the grading which fingers crossed I will pass. I have also got a competition between now and then too. So that is some good news, and hopefully I will have more good news in a months time when fingers crossed I pass my actual grading!

MHAM blogging challenge – Day 4

What large thing give you hope for living with headaches and migraines? 

Pain management – and by that I don’t mean pain killers after pain killers, I am talking about natural pain management techniques. My journey with NDPH led me to try many different medications, treatments and doctors for years to try and alleviate some of my pain, unfortunately none of it made the slightest bit of impact and eventually my neurologist, a top headache specialist at the neurology hospital in London told me there was nothing more he could do for the time being, that was 2 years ago. I lost all hope when he told me that, I felt beaten helpless and completely and utterly hopeless and entered yet another stage of deep depression. I wasn’t allowed any pain killers stronger than triptans due to being on the waiting list for surgery (still on the waiting list – still not moved) so I just had to suffer because triptans were useless.
I was then turned onto natural pain management and acceptance and commitment therapy with my psychologist. This involves things like mindfulness meditation, pacing of activities, catching yourself when your thoughts turn negative, acceptance, breathing, stretching, exercise, to name a few. When I practice it all properly it gives me more relief than any form of conventional medicine ever gave me and helps me maintain a positive outlook on my life, helping me live a happy and full life despite pain.
So far since learning all this I haven’t been able to get it consistent, I dip in and out of it have periods where I feel a lot better because I am practicing all of it, and then periods where I rebel and do none of it, as sometimes it feels too much like hard work, because it is it’s not easy. However I know it is worth it to be in the good place it can get me to. My goal at the minute is to get consistent with my pain management, and I hope to get to a consistently okay/good place, I have been in the place before however depression seems to creep back in and I find myself slipping back into old depressive habits, that are not helpful and make me feel worse. Knowing that this good place can exist for me was half the battle, as before pain management I didn’t know the okay place could ever exist for me, but it does and I hope to get back there and I hope to stay there.
Pain management gives me hope – hope that everything will be okay, hope that I can live a good and full life despite my pain.

The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.