My anxiety in doctors appointments.

At doctors appointments I turn into a anxious, rambling, waffly mess who probably makes little sense. Which isn’t helped by the fact I’m always in a lot of pain and even more unwell at the minute. I come away from appointments often feeling frustrated at myself for getting so anxious and not being able to convey things properly. This then makes my anxiety at subsequent appointments even worse because I’m worrying about how to try and not be as anxious as last time, which makes the levels rise even more. I find that I’ve got so much in my head that I want to say and that I’ve over thought about, that nothing comes out in the way I intended it to and I fail to explain things or discuss things I’d like to.  My doctors probably think I’m an idiot, which is actually very far from the case. I’m actually pretty clever and I like to learn as much as my health allows, which believe me isn’t as much as I’d like, but I am a very well informed patient.
Believe it or not I’m actually quite a level headed person, I’m very good at advice, seeing two sides of things, well reasoned and good at not looking at problems as completely black and white.  I’m incredibly understanding and will pretty much do anything to help anyone if I can. I am all this for everyone and anyone, other than myself who I seemingly like to give a hard time and I just end up beating myself up about things.

I think some of my issues with anxiety in appointments stem from me finding it hard to talk about things in person, to be completely open with people about how bad my health is, how much pain I’m in and how I’m feeling emotionally, I mask it probably about 98% of the time as I feel I have to. I also have a wall up with doctors, even with doctors who I’ve seen for a very long time and really do trust and like. I don’t like admitting how bad I’m suffering and how bad the pain actually is, I’m really not a complainer and I don’t like to bother people when most of the time they actually can’t help much anyway, which is no ones fault just the way it is. And above all my irrational fear of being seen as weak, and yes I’m very aware that it is completely irrational, and not how people I know see me. But I don’t know how to break down this wall I have seemingly created.
Then there’s the abandonment fear and the fear of dismissal even with medical professionals that I really like and completely trust and who have never made me feel like that the entire time I’ve been with them. But yet I still have this stupid fear that I know is unnecessary. When my headache first started I had about a year and a half of constant dismissal, lack of understanding, and next to no help from specialists for both my headache and POTS symptoms in Dubai and a few in London too. Before a doctor who was actually okay but just didn’t have enough expertise in my problems so he sent me to two of the most lovely and fantastic doctors, one of which I still see regularly. But that period of time being dismissed by doctors I feel still affects my anxiety, even when my current doctors do not give me any reason to feel like that.

I speak to a lot of people who have NDPH or other chronic illnesses that I’ve become friends with, speaking to me online, on the phone or in person I am very very far from a anxious, rambling, waffly mess. My doctors would probably think it was a completely different person, but that’s me without crippling anxiety, which is actually how I am the majority of the time. I am far better at conveying things in writing than in person where my unnecessary anxiety has the opportunity to strike and ruin everything, which only really happens in doctors appointments and not in general everyday life. But I don’t feel that writing things down I want to discuss and giving them that in my appointment is the solution for me.
I’m very aware of my problems, however I haven’t quite figured out how to address this issue in order to decrease my doctors appointment anxiety and therefore have a more productive and open appointment with my specialists. But I will continue to try to figure it out.

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Stimulator removal agreed!

I’m a very grateful to have a neurologist and his team who are incredibly supportive and who I genuinely believe care (as believe me not all the ones I’ve seen are like that in the slightest), they have tried very hard to help me since I started seeing my neuro back in 2011. Unfortunately all attempts have not worked out, my headache being unresponsive and resistant to all treatment; and as you know this latest one has caused me more pain (turns out my brain is weird but I think I already knew that anyway!). In April I wrote a post entitled ‘what I wish I could tell my neurologist tomorrow’, at the time when I saw him I wasn’t quite able to tell him much of what I wanted to and chickened out of showing him the post as well. However a week or so later I built up the courage to send it to him.
Last week I had a surprise appointment, it had been booked in ages ago and I had been aware of it however I thought it had been cancelled and was expecting to be seen in July instead. After ringing up to see about a July appointment they said to come to this one instead. I then ended up in my local hospital Monday-Tuesday but luckily managed to make my appointment on the Wednesday, before being admitted to a different hospital in London that afternoon under the neuro-gastroenterologist I’m seeing.

My appointment went well and I felt very supported by my neurologist and his team, we had a long discussion about a number of things. The main being my stimulator, my neuro said that if having my stimulator removed is what I want then that is more than okay and he will arrange it. We discussed some issues surrounding that but I still said that I would like it removed, so they should hopefully be placing me on the neurosurgeons waiting list and it will be a 2-3 month wait for surgery roughly. I asked whether removal would alleviate the extra headache in the back of my head or whether I am stuck with that now, he said that it should hopefully resolve with removal of the stimulator. We discussed some future treatments that are hopefully in the pipeline in a couple of years time, and my ongoing other health issues.

I left with a mixture of feelings – grateful that I had felt heard and supported by them which isn’t out of the norm. I also felt a mixture of happiness and relief but also heartbreak and depression. I feel happy and relieved that it won’t be long before I am hopefully rid of this stupid device inside my head, that has caused me so much pain and still continues to. But on the other hand I feel heartbroken and devastated it has come to this. This was meant to be my answer, my last resort, but it has failed and now I’m not sure what to do or how to move forward.

Have a lot going on at the minute health wise which is making my head spin a lot. But knowing that my stimulator will be removed in the near future, which may hopefully relieve the extra pain in the back of my head, is quite a relief and gives me one less thing to worry about.

 

Last weeks neuro appointment.

I wish I could tell you I had the guts to show my neurologist what I wrote in my last post, but unfortunately I chickened out and didn’t, which I’m annoyed about. I really want to send them what I wrote but I’m not sure I have the courage to do that either.

I felt physically sick with nerves before my appointment, though I do feel sick quite a lot now so maybe it was a combination of the nerves and the other problem that causes me to feel sick. My nerves were calmed by having a lovely chat with a woman in the waiting room which is like a room where people go in for day infusions, and she was getting one for her MS. She was really nice and talking to her helped me feel slightly more calm and was a bit of a distraction.
I saw my nurse first and there was so much I wanted to say but like always words failed me and the best I could come up with which kind of got straight to the point anyway was something along the lines of ‘I’m so fed up I want you to remove the stimulator.’ After a bit of a discussion with her I then waited till my neurologist could see me.
I saw my neurologist after a short while and to cut a long story short we decided to keep the stimulator turned off for 3 months, to get my pain levels back down to baseline before stimulator. At which point I will see him again where it will be discussed what to do next, maybe another small stimulation attempt which I’m really not keen on, or the only infusion I haven’t had. To be honest I just want removal, I want this nightmare over, and the last thing I want is for them to turn it back on and send me back into even more agony. But I don’t want them to think that I’m not trying, that this was all for nothing, that I’ve wasted their time and resources.
We then discussed my histamine intolerance issue and the medications he put me on the last time I saw him which really really helped for a couple of weeks, and then some of my symptoms started returning, and now I have hardly been able to eat in probably over 3 weeks now. He wants me to up some of my medications and see this Professor for this type of issue at a different hospital in London, so I’m going to be sorting that out as well. I’m really struggling with being unable to eat, and I feel incredibly unwell.

He asked me how I was doing, and I wish I had been able to go into some more detail than I did but I felt if I said more than I did I was going to have a massive breakdown and there were a lot of people in the room I really didn’t want everyone to see me like that. So I just said ‘no not good at all’. He asked me if I was still seeing my psych who is practically on my neuros headache team and I told him he had discharged me a few weeks ago because I reached the maximum amount of sessions he could offer me. My neuro said he would see if he could sort something out, I really hope he can. I wish I had been able to tell him how much I really am struggling, or even just have shown him my previous post, but me being the idiot I am was unable to do any of that, so he doesn’t really know how much I need some help. And as usual I hide everything with a smile, a laugh or some sarcastic comment so nobody knows just how badly I feel or how much pain I’m in.

 

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, 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!

 

4 months – still worse, no improvement.

It’s been nearly 4 months since I had surgery, I wasn’t expecting to be miraculously better however I was not expecting to be worse.

For the first 2 months I was over stimulated which was agony but that eventually got sorted out and the program changed to be much lower. The allodynia (nerve pain) that I had developed from the overstimulation went away thankfully, however underneath that nerve pain was a headache. My ‘normal’ headache has always been located at the front of my head; my forehead area and just reaching around to my temples, it’s never changed location and I never had pain at the back of my head. Since surgery I have been experiencing a lot of pain at the back of my head, the sides of my head and even behind my ears. It feels like my ‘normal’ headache has grown a friend or doubled in size.

The stimulator is on so low that I cannot feel it, because if I feel it my head actually hurts more. I was told that I needed to be able to feel the stimulation slightly in order to eventually reap any benefit. However feeling it causes me more pain so at the minute I’ve opted for having it on but on so low that I cannot feel it, so to not cause me any more pain than I’m already in.

Everyone I have spoken to says that this is not normal to happen after this surgery, so I don’t understand why I’m in so much pain?! I fought so hard to be able to get this surgery, I waited 4 years, went through a stressful complaints process, only to have the surgery make me worse, how does that work?! I feel defeated and I just don’t know what to do anymore. It’s been 4 months since surgery and the extra pain has not improved and I’m getting worried that I’m going to be stuck like this now. My neurologist wants to see me on the 15th Feb, so I’m hoping I might get some answers and some help then because I’m struggling right now.