What I wish I could tell my neurologist tomorrow…

I’m not good at expressing myself to people in person, I’m never able to say what I want to or need to. I’m much better at writing it down, what I want to say and how I feel. I’m seeing my neurologist tomorrow and this is what I wish I was able to tell him…

I don’t want you to think I haven’t given this enough of a chance or that I haven’t tried hard enough with it. I wasn’t expecting any sort of relief yet when I only had surgery 7 months ago, but I’m so much worse it’s unbearable and I know it should not be this way. I can feel that my pain/head/brain does not like what is happening to it when the stimulator is on, I can feel it and it’s even more agony than I’ve been use to for the past 7 years. And if that wasn’t bad enough an extra headache has been created at the back of my head, which was never there before and I don’t understand what has happened for it to be there, but it’s really very painful and I just wish it would go away. I wish I never had the surgery,  I wish I had listened to the people who said not to go through with it. However I’m the type of person who will try anything within reason if there is the slightest possibility it could result in some relief, and I know if I had not gone through with it I would always be wondering if this could have been my answer.
I don’t often complain to you Manjit, I don’t often complain to anyone, I usually hide my pain with a brave face, a fake smile, a laugh or a sarcastic comment, mainly because I don’t want anyone to see just how badly I feel and just how much pain I’m actually in. But this is me complaining, when the stimulator is on it causes me so much agony it’s becoming unbearable. And I’ll be completely honest, I don’t want you to turn it back on and reprogram me which will probably send me back into even more agony, I want you to keep it turned off and then swiftly arrange for removal. I’m in agony and I don’t know what more to ask for other than this and hope that I can return to what it was like before surgery, which was also agony but it wasn’t quite as bad as this. I know you’ve tried so hard to help me and I appreciate everything you have done to try and help me over the past 6 years I have known you, I appreciate it more than you know, you were the only neurologist I have ever seen that didn’t dismiss my pain, that listened to me, that cared enough to want to help and for that I will always be grateful. But I’m not sure I can keep going with this stimulator and how much extra pain it is causing me, I’m completely fed up and done with it and I honestly don’t believe that reprogramming it any different is going to change the extra pain it causes me when it’s on, I know my pain better than anyone, I know what it does not like and it does not like this, I wish so badly it did and I wish this could have been my answer for some relief, but I really don’t think it is.

I know everyone was worried about what would happen to me if surgery turned out not to help and where I would be mentally if that was the case. I wish I could tell you I was okay, or that I will be okay. But the truth is I’m not okay, I’m so very far from okay, I’m completely heartbroken and devastated about this and completely unsure of how I’m even going to be able to move forward from here, of how I’m going to cope with the rest of my life with this pain. I’m probably in one of the worst states I’ve been in and I’m probably beyond anyones help anymore. I’m 23 years old it’s been over 7 years since this started and I have no clue how on earth I’m going to survive the rest of my life with this pain, I don’t know how to deal with the fact I will probably never have any sort of relief, that all hope for that is gone. And I feel that if all I’m ever going to be is sick and in pain, then what really is the point anymore? 

I know I won’t be able to say this to you tomorrow, I’m not even sure I have the courage to show you this post, but maybe I will surprise myself.

 

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.

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.

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.

 

I’m sorry but I disagree.

I disagree with the statement that pushing through the pain is possible for me, that I should just go about a ‘normal’ life like someone who doesn’t have chronic pain and live despite my chronic pain. That I should be able to ignore it, that after 7 years of it I should be use to it and therefore it shouldn’t bother me. I disagree with the statement that just because I can do things like exercise or pop out to the shops means I could work a full time job, I’m sorry but you don’t quite understand.

See I try so god damn hard to function as much as I can despite my pain, but when I try to do normal things like study or work my pain has a tantrum like a two year old that’s hungry, actually that’s not entirely accurate as it lasts way longer than a two year olds tantrum. My pain revolts, it gets so angry I’m left in more agony than normal and completely bed/sofa bound for what could be weeks on end. So when people say I should plan for the future or I should push through the pain it actually makes me really angry as I really don’t get how I can. I’ve tried so many times, I take one step forward into the real outside world trying to be a normal functioning member of society but soon after I am catapulted two steps back into my bed with pain levels through the roof. And when my pain is that bad there’s no hope in hell that I can function.

So my question is, if my pain does that when I try to do something how on earth am I meant to push through the pain and be a normal member of society despite my chronic pain? Because I really don’t understand how that is possible.

 

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.