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.

Stimulator re-turn on day.

I’ve been a bit lax with my posts lately and I’ve been meaning to write this post since last week, but it’s been bit crazy.

Last Thursday it was my 23rd birthday, I had a nice day with my family and a meal out in the evening with them and some family friends. Overall the day was quite good and I didn’t feel too miserable despite often feeling a bit disheartened every year I get older and I’m no better if not worse health wise.

On Friday I had my reprogramming appointment at the hospital in London to turn my stimulator on and onto the burst settings. I had a bit of a tube dilemma getting there and ended up having to run from the tube station to the hospital, only to get there to find that the rep from the stimulation company had been told to come at 11am instead of 10am like me and my nurse thought. It was okay though as I caught up with my nurse and told her my normal headache had gone back to baseline which is still bad but not as bad has it was when the stimulator was on however I still had the extra headache at the back of my head. She said that she would talk to my neurologist in the week and discuss what to do and let me know as she said that if I still had the second headache despite the stimulator being off then there is another problem going on, but she couldn’t comment on what that could b, understandably. We then had a bit of a laugh and a joke about things whilst we were waiting for the rep and I was filing in some headache diaries. She then asked if I had been charging my stimulator this past month and I hadn’t been because I presumed that because it was off I wouldn’t have to, apparently that’s not the case but nobody told me. Anyway it had enough juice ton do the reprogramming thankfully otherwise the whole trip to London would have been a waste of everyones time. The rep turned up and it took all of 5 minutes to turn it on and program it, this burst setting means I’m not meant to feel the stimulation at all and if I do I just turn it down but otherwise I don’t need to do anything.
I then headed for a quick lunch with Jacqui who ran the Rock Bottom event that I wrote about it my last post, which was really nice. And then headed home because I knew I desperately needed to charge my stimulator battery. By the time I got home my pain levels were quite high but I hoped it was because I had had a busy and stressful day going to London.

On Saturday I wen back up to London via my Grandparents house in Surrey with my Mum and sister as last year my sister bought me tickets to see the Harry Potter and the Cursed Child West End show for my birthday; it books a year in advance so the tickets were for this year. Anyway the show was absolutely fantastic, the best show I have ever seen, great storyline, great special effects and costumes, just utterly spell-binding. We stayed in London over night and then my sister flew back up north in the morning and me and my mum went to have lunch with my grandparents for mothers day. Me and mum then spent the afternoon and night at my mums best friends with her family and had a really lovely time with them. My pain levels throughout all this were still not good, however I still was thinking that it was probably due to having a busy few days. On Monday my Mum flew to Dubai to spend 3 weeks with my Dad and I drove back home.

I decided to ensure that I had a quiet few days this week to try and see if my pain eases and rule out the possibility that it’s actually worse because my stimulator has been turned back on. Unfortunately it’s still quite bad and I’m not feeling too optimistic. My nurse called me yesterday after speaking to my neurologist and he has said he wants to move my next appointment which was mid June forward to the 25th April instead. I’m pleased and thankful he is going to see me soon but I’m worried and concerned that it’s not going to be good news about my extra headache. I haven’t told them that my normal headache is worse again since the turn on of the stimulator as I don’t want to be too presumptuous about it. But I’ve said to myself I will give it till my appointment on the 25th and if it is still bad and has not improved I will be asking for it to be turned off and will be asking about removal of it.

To be honest I’m starting to feel more and more upset about the fact that I really don’t think this surgery is going to be a success and so far it’s just been a complete nightmare. I fought so hard to be able to get this surgery for me and everyone else on the list at the hospital. I know in my heart that despite now regretting having the surgery, I know that if I hadn’t have had it I would have always been wondering if this was my answer. But unfortunately I don’t think it is and I feel completely heartbroken about it. It’s left me worse than before I had it and I was not prepared for this. I struggle to find the words to explain fully about how disappointed and heartbroken I feel right now and I haven’t really told anyone about how I’m feeling about any of this. I’m also very very good at pretending I’m okay and not talking about how I actually feel so nobody is none the wiser.

Anyway keep you updated on the stimulator issues.

Wishing you a low pain day!

 

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.

 

<a href=”https://www.bloglovin.com/blog/18482597/?claim=v7dc5xvh6zr”>Follow my blog with Bloglovin</a>

After having some time to reflect.

I have been so absent from here recently, it has been a difficult few weeks with a lot going on and a lot of thoughts going through my head. Sorry for the lack of posts but am hoping to be back blogging more frequently again now.
I have had some time to reflect this week and really think deeply about what I am going to do. I don’t think university will be right for me I think it will be detrimental to my health both physical and mental, someone I care about and value their opinion told me today that what would be the point in a degree if I end up dead. Blunt, but true. So that brings up the question of what do I do instead and this has really been getting to me as I feel like I have to do something meaningful and I feel like I need to be working towards something.
I am currently in Dubai and on the flight here I really had some time to think about everything. I feel like I need some time out of everything, time to focus on getting my pain under control naturally again, time to get consistently stable with my health, time to work on my acceptance. I have had periods of being stable and okay over the past year, so I know it is possible as long as I put the work in. The problem is that they have been short lived and I feel like I need to get it so that I am consistently feeling okay before I move on and do something with my life. I feel like I will be unable to move forward with a job and a career unless everything else is under control, and if it is not then I know I will not succeed in what I want to do. So I am going to spend some time however long I need to do this, maybe even up to a year, whatever it takes to reach my goals in managing my pain and stability. Putting into practice everything I have learnt, making it a routine and sticking to it consistently.
After that I might look at slowly introducing some other stuff as well as my pain management, maybe some volunteering to get some life experience and then maybe a counselling course to become a counsellor.
Being in Dubai, today I saw my favourite person; my old school counsellor. I discussed all of this with her, she probably knows me best in the world and always understands my feelings about the pain. She agreed that I need some time to get myself sorted before starting anything again.
I will not be returning to college next year to finish my course, and therefore will not be going to university for now. Instead I will be focusing on getting back the good place I have been in before however have not managed to stay there consistently, but I will get back there with time, work and effort and hopefully I will manage to stay stable indefinitely. And then I can start to move forward towards what I ultimately want to achieve from my life, but my pain management techniques along with my acceptance have to be made a priority in my life, above all else – this is what I have failed at before and I need to work to succeed in this for the sake of my health and well-being.

Sometimes all it takes is a decision.

Shortly after the onset of my headache depression hit me hard, and I continued to suffer from severe depression for years. I couldn’t cope with the pain and the way it made me feel all the time; miserable, angry, bitter, lost, pretty much every negative feeling out there I was feeling it at full force. For a long time I coped with my pain through self-harm, it was my coping mechanism, however not a good one. After a while I just didn’t want to live anymore, I saw no future for myself but pain and misery, I didn’t think there was any other way, so I tried to kill myself and got close to succeeding.

It’s only been in the past year that  have discovered that there is another way, happiness can be found despite pain, my life can have meaning, I can achieve things and more importantly I can live despite pain and be okay with it. The path wasn’t easy, it had many bumps in the road and still does, but I believe the first step is making the decision you want to feel better. Because before I don’t think I really wanted to get better emotionally, it was easier to let the depression consume me but I didn’t know there was a way out.

The most successful therapy I’ve had has been ACT, Acceptance and Commitment Therapy, geared towards pain management of the natural kind; no medications. It was a hard road and in the beginning it all sounded like nonsense, I thought it was stupid and impossible that anyone could accept their chronic pain, be okay despite pain and live a happy and full life despite pain. Eventually it was like a switch in my head had turned and I understood it and wanted to work towards accepting my pain and feeling better. That was the turning point for me, and I worked my ass off to get there. I will admit to falling off the wagon briefly, however that is because I decided to take on the world and had stopped all my pain management techniques. I eventually got back there though, all be it I needed a bit of help along the way.
Now feeling pretty okay again the majority of the time, have bad days now and again, the majority of which revolve around the pain being bad.

I may never recover from chronic pain, I will probably always have a headache, but that’s okay because I can cope, I can still achieve things and more importantly I can be happy despite pain.
Some days are bad, but most are good despite pain.

If you’re reading this and you suffer from chronic pain and you think I’m completely crazy and what I’m saying doesn’t sound possible. I want you to know that that’s okay, because I use to think it was crazy and impossible too. But I do want you to know that it’s not, it is possible, it is achievable, and I hope one day you may get to this place too, but I am always here for you whenever, through the good, the bad and the ugly.
Contact me on: iamtheneverendingheadache@gmail.com