I feel defeated by my body.

Why does my body not work properly? How did I get so unlucky to have so many things wrong with it? Will I ever catch a break? Will I ever get any better?

These are questions at the minute I ask myself daily, I just feel defeated and worn down to the ground.I have an appointment booked with my GP on Friday and then on Monday I have an appointment with a immunologist. The 18 different extra symptoms I’ve been dealing with for over a year could be explained by a histamine intolerance/Mast Cell Activation Disorder, and they’ve been getting progressively worse. My neuro wants me to start some meds for it but I’d like it investigated further before starting any treatment which could mean any tests done for it would be inaccurate if I had already started the treatment. So hence the immunologist appointment on Monday. Hopefully it will go okay and might make me feel a little better about the whole thing but at the minute I’m still feeling distraught that there is probably yet another thing wrong with me.

My stimulator is being turned back on for Burst programming on the 24th of March, I’m not feeling too optimistic that it will be any better than the standard Tonic programming of before, but I’ll just have to see.

In other news in 23 days time it’s my birthday and I will be 23 years old, it doesn’t fill me with joy, instead it fills me with sadness. I’m going to be another year older yet I’m still no better, if not worse than I was when I was 15 and this all started. I’ll be another year older yet I have not achieved anything I’ve wanted to, I’ll probably never be able to hold down a job, I’ll probably never move out of my parents, probably never have a relationship or a family. All because I’m sick, all because of my stupid never ending headache which I loathe so much. So I ask you, what is the point? I just feel so unbelievably defeated by everything at the minute that I don’t know what to do anymore.

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Latest appointment with my Neurologist.

I had a very interesting appointment with my neurologist in London yesterday. I’ll start off by saying that I’m very grateful to have such a good neurologist who genuinely cares about helping me and takes time over my appointment. Before I met him I had had some very bad experiences with neurologists in both Dubai and London. When I met the one I have now I instantly breathed a sigh of relief that I had finally found someone who cared and understood. We have been working together for 6 years now, in some sense we haven’t made much progress but that’s not for lack of mine or his attempts, just my stupid headache. But unlike other neurologists he has not given up and he won’t give up, I will forever be grateful to have met him.

My appointment started off by seeing one of my neurologists headache nurses who does my reprogramming of my stimulator. I told her what had been going on, that I had an extra headache at the back of my head since surgery and that my normal headache was still worse, we went through numbers of the pain scale and where my pain usually sat during the day, which is from a level 8 to level 10. She then looked over my system and decided she didn’t want to do anything till she spoke to my neurologist. So I went back out to wait to see my Neuro.
He called me in and I told him how much I was struggling with everything that has been going on. He then said he thinks I am part of a very small percentage of people who’s brains cannot tolerate stimulation and the feeling of it. I guess I had already figured this out because of how much worse I am and how much the feeling of the stimulation makes the pain worse. But he said that they had put the latest stimulation tech in me which has the new capability of this burst system which is stimulation that goes on and off without you realising and you cannot feel the stimulation. So he thinks this might be better for me so wants to try it as soon as they can get the stimulation company rep to come to the hospital and sort it out for me hopefully in the next couple of weeks. In the meantime I’m to keep my stim off and he said hopefully my pain may calm down slightly.

He then asked me if my skin on my face was always red and blotchy I said well yeah it is quite a lot, my mum comments on it a lot. He rolled up my sleeve and took his blunted pen  and pressed it down in a zig zag motion down my wrist. Within about 2 seconds I had an insane reaction of severe redness. He said it’s called dermographia which is. skin condition. He then asked me to go through the Beighton scale, which is the test of Ehlers Danlos Syndrome, which I am already diagnosed with along with Potsural Orthostatic Tachycardia syndrome. To be diagnosed with EDS you have to score a minimum of 4-5/9 I score a 6. I think he wanted to go through it to show his colleague about it in real life as it’s not particularly common. He asked me some other questions to do with stomach issues, I said I have a temperamental stomach and I keep getting a rash in the crook of my right arm, I thought I was allergic to something like milk so cut it out and it hasn’t particularly helped so I don’t know whats wrong with me. He told me I have too much histamine in my body causing all these symptoms. He said people with EDS are more prone to histamine issues. He said that in a very small percentage of people with headaches who have histamine issues, that treating the issue in some cases made the headaches improve ever so slightly. He wants to put me on some histamine blockers and wants me to follow a restrictive diet. Having done some research and spoken to a couple other chronic illness friends, I actually think I might have Mast Cell Activation disorder which is causing the histamine issue, so that is something I might explore.

Maybe I should be happy he found something wrong with me,  and yes I’m glad my neurologist spotted this, but I actually feel really upset. I don’t feel joy to the fact that treating the histamine issue may improve my headache and yeah don’t get me wrong I wish that would be the case. But I feel upset that my body is not normal, that my body does not work the way it is meant to that I have yet another thing wrong with me. That I have to go back on medications after I was just about to be medication free for the first time in 7 year, as I’m withdrawing slowly from the last one. But now I have to go back on meds and follow a very restrictive diet which is probably going to make me miserable in itself. That being said I am going to try it all and see a dietician about it, but I feel very upset about it. And don’t get me started on the fact that my brain can’t tolerate stimulation because that’s just fucking brilliant. I feel like crying at the minute, why does my body not work properly.

If anyone reading this has similar issues with histamine, or Mast Cell Activation disorder please comment or email on iamtheneverendingheadache@gmail.com as I’d love to hear your experience.

Victimised in London, first time feeling unsafe.

I had a bit of a horrible experience in London last Friday. I was sat on the tube on the way back to Waterloo to get the train home and a couple of seat down from me were two black guys who looked like some sort of construction workers as they were carrying hard hats. They were a bit odd on the tube but I didn’t really think anything of it, I got off at Waterloo and they got off behind me and started shouting at me ‘excuse me lesbian’ several times and really loudly. I ignored them despite knowing they were talking to me and carried on walking fast so I could escape them. I got on the escalator to go up to the main station and looked behind me and they were on the escalator next to me waving and blowing kisses and saying inappropriate comments. I felt quite threatened almost like I was about to be a victim of some sort of hate crime, so I quickly power walked away and got on the first train home not wanting to hang around.

Firstly shouting at someone saying lesbian is most definitely not appropriate behaviour whether they are gay or not. And it just so happens that I’m not even gay so his assumption was completely wrong, probably because I have a short hair cut. Which is ridiculous really, just because someone has short hair does not automatically mean they’re gay, and likewise just because someone has long hair does not mean they’re definitely straight. And whether I am gay of not it is not okay to shout ‘excuse me lesbian’ to someone anywhere or anytime, it makes you feel very victimised. That was the first time I have ever felt unsafe in London and I was surrounded by loads of people who didn’t even bat an eyelid as to what was happening.

Anyway it’s valentines day, my mum bought me flowers (bless her) because no one else will. I haven’t had much luck with men so I’ve kind of given up, no one seems to want to ever be with me once they see just how sick I can get. Who wants to be with someone who can’t work or study so doesn’t do an awful lot, who’s life is dictated by the pain in her head, who has depression and anxiety so bad they avoid any and all social interactions with unknown people and people of their own age, for fear that nobody will understand. Yeah I’m great dating material, I’m sure their mother would be thrilled if they brought someone like me home, not. Maybe I’m just destined to be alone. The thing is I’m actually a really nice person but people can’t seem to see past my illness and how it affects me. I really hope there is someone out there who one day might see past my illness, but I’m not going to hold my breath about it.

Side note: I’m a bit stressed about tomorrow, so much so I had a bit of a panic dream last night that I got all the way to London tomorrow and realised I had forgotten my stimulator remote, rendering the majority of my appointment with my Neuro useless. I then woke up thinking it was Thursday and I had slept through Wednesday and completely missed my appointment. Thankfully I realised it was Tuesday after checking my phone and I have put my remote in my bag already, so to not forget it tomorrow. Will let you know how the appointment goes, I’m hoping I get some answers as to why I’m in so much extra pain and what can be done about it. 

 

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.

 

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.