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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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.

 

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. 

 

Small achievements.

Today I combated some of my stress and actually had a pretty okay day. I have been feeling incredibly stressed over the past week, everything was getting on top of me and I had no clue how to de-stress and do everything I needed to do.

Yesterday I went into college firstly to attempt to do some work in the inspiration room and secondly for an appointment with my law teacher to discuss my assignment. I sat in the inspiration room for 3 hours staring at my laptop getting more and more stressed by the minute. After almost 3 hours I went to the nurse so I could inject my lunchtime medication and told her how stressed I was, so she let me lie down in the nurses room for half an hour before my appointment with my law teacher. I did some mindfulness whilst I was lying down but was still feeling incredibly stressed, anxious and on edge. I then went to see my law teacher and without me even having to tell him I was stressed he asked me if I was stressed and/or anxious, he could clearly tell. I told him both and that I hadn’t decided on a topic for my assignment that everything was getting too much and I don’t know what to do and how to handle everything. So he said he would decide on an area for me to do my assignment so that I didn’t have to make the decision myself which was clearly causing me a lot of stress and anxiety. He then went through possible research questions for the topic and what I needed to include. The appointment with him was incredibly helpful, and we talked about some of my issues with pain and depression. I left the appointment feeling like a bit of the weight on my shoulders had been lifted because I now had an area to focus on for my assignment, though still stressed about actually writing the assignment itself. My law teacher said he wants to see as much as I can get done by Wednesday in the lesson, which is good because I work well to deadlines.

Today I woke up from a not very good nights sleep, but decided to take a trip out to town for some coffee and breakfast, I took my iPad with me and some notes for my assignment. Sat down in the coffee shop put my headphones in and listened to some Taylor Swift (a personal favourite of mine) to block out the noise of everyone around me. I then set to work on typing some notes for my research project plan and got a fair bit done before I decided to go home. It was a nice morning and I really enjoyed some time by myself listening to some music and doing something productive.
After getting home I saw down with my laptop and all my notes and set to work on properly typing up my research plan and also my research project. Each has to be 1000 words, and I actually got loads done, had quite a few breaks because I need to pace myself, but I managed to complete 500 words of the plan and 800 words of the project.

I’m really pleased and proud of myself for actually getting a lot of the assignments done despite how stressed I am feeling. So that is quite an achievement for me, all be it only something small. Today was quite a good day and the pain isn’t too horrible, did lots of mindfulness as well throughout the day which was good.
I have work and Tae Kwon-Do training tomorrow, so I probably won’t do any more of it tomorrow, but Monday I hope to do some more and have it nearly completed by Wednesdays lesson where my law teacher can look at it and give me some feedback.

My brain feels like mush.

My brain literally feels like mush, I can’t think, I can’t concentrate and I feel really dumb. Thankfully college has just finished for Christmas so I have two weeks off where I don’t have to attempt to concentrate in class and feel really stupid. The frustrating thing is that I’m not actually dumb, well maybe I am now but I didn’t use to be, you should see my GCSE grades I got 4 A’s 5 B’s and a C, I wasn’t stupid at all and that is very frustrating. Now I just feel like my brain doesn’t work properly, it feels like mush and I can’t get it back in gear because it just doesn’t work properly cause of the pain and I can’t concentrate, and of course that makes the pain worse.

I’ve lost direction, I don’t know where I’m going or what I’m doing with my life, it all seems pointless when I know I’m probably going to be in pain for the rest of my life. I can barely cope with part time college so how the hell am I going to cope with university and I’m anxious and scared about that. I feel like I will never be good at anything because of my pain, because of my depression. Everything seems so pointless when you’re in pain and know it’s probably never going to get any better. I feel lost and I don’t know what to do. My psychologist tried to talk to me about it today but I kind of clammed up and wouldn’t talk which sometimes happens when I’m feeling really bad and something is really getting to me, it’s like I want to talk but the words just don’t come out.

Anyway it’s a week till Christmas, my sister is already here, my Dad arrives on Monday and my grandparents all arrive on Tuesday to spend Christmas with us, so we have a house full. I actually quite like Christmas to be honest, so it should be quite nice. I’m hoping that the pain won’t be too horrific for me, but knowing my pain that’s probably too much to ask!

Anxiety.

Everyone gets anxious from time to time, it’s pretty normal. But when the anxiety starts to control your life and worrying plays on your every thought then there is a problem.
Depression and anxiety often creep in when suffering from a chronic pain condition or chronic illness, they did for me. I say it in that way as to not confuse the fact that the chronic pain was there first and then the depression and anxiety developed, and not the other way around like a lot of medical professionals like to insist. ‘You’re depressed that’s why you are in pain or ill all the time’ No! That is not the case for so many of us and it angers me when medical professionals try to insinuate that.
That wasn’t the case for me, before I got sick I was a happy, almost care free, outgoing, normal teenager but chronic pain took that from me and I became depressed, angry, anxious and miserable. I didn’t like the person I had become but I couldn’t see any way out to get back to the person I use to be and I never thought I would get back there. I did though, well almost, I wouldn’t say I was ‘almost care free’ anymore, I still have a lot of worries and I’m far from being a normal teenager, heck I’m not even a teenager anymore. But when I got sick and eventually the depression engulfed me I never thought I would get back to feeling like myself again, but now I feel more like myself than I have in years, and I still have chronic pain.

Anxiety with chronic pain is common, when you are in pain all the time there seems to be so much to worry about.
‘Will the pain be bad today?’ ‘Will I be able to get out of bed and do something?’ ‘Will the plans I’ve made for tomorrow have to be cancelled because of the pain?’ ‘Is this all my future has in store for me? To be bed bound for the rest of my life because of the pain?’ ‘Will these meds work?’ ‘Will I get horrible side effects from them?’ ‘How will I have money to live on if I can’t work cause of the pain?’
They are just some of a few things people in chronic pain/illness worry about daily. Sometimes it feels like you have so much anxiety going on to do with the pain that they take control of you and make you feel even worse emotionally. I know sometimes when my anxiety is high I feel sick and on edge and I have thousands of worries going around my head just thinking and over thinking them. In the past I took anti anxiety meds but like every other med I’ve tried they didn’t do anything either, except help me sleep away the day so I didn’t have to face it, but that is no way to live your life.
I think the best thing if you have anxiety is to try and take it day by day and not worry or over think about things too far into the future, but just living in the present and taking it day by day, which is actually how I try to cope with the pain now. Though it is easier said than done and I get that because I still find it hard too.

Right now it is under two weeks till I start college. I’m feeling very excited, nervous and scared all rolled into one but I’m trying not to over think which is what I so often do and not let my anxieties about it get the best of me. I’m looking forward to starting a new positive chapter in my life.

I need this.

I know I’ve been talking about this sort of stuff a lot recently, but it’s a big part of my life right now and it’s what is currently on my mind.

I need a break, (not a break from pain though that would be lovely and I wouldn’t complain one bit), I need a chance, a chance to continue to stay feeling better a chance to move on with my life. My interview for college is in just over two weeks, and I desperately need them to like me enough to accept me and give me a chance to move on with my life, which is what college for me will essentially be. It will be a chance not to dwell on the pain to do something positive and make something of myself, to prove to myself that I can achieve things despite pain, that I can live a full life despite pain. I need the college not to be put off by my medical issues (they can’t legally decline me cause of my medical issues but I’m sure they would find a reason to if they wanted to), I need them to understand that this is what I want and I need it and I can do it. In my application to the college I mentioned I have health issues but I didn’t dwell on it in the essay I wrote, I didn’t focus on it, I focused on the reason I want to do this course, and they asked me for an interview anyway so hopefully that is a good sign. I will answer all questions at the interview honestly however I won’t tell them quite the extent of my past mental health issues as that really would put them off. I need someone to give me a chance so I can prove to them and myself that I can do this.

I’m also desperate for a positive reply from the DVLA, I desperately need good news from them. And I’m scared if it’s not good news I will be dragged back down and retreat into my safe little net of depression.

I need all this, if I don’t get into college I don’t know what I will do, this feels like my only way out of depression my only way to move forward and I’m scared if I don’t get a positive outcome from college or the DVLA (college more so than the DVLA but still both) that I will sink back down and won’t be sure quite how to get back up again.

Going to college is my way of moving forward, my way of not giving into the pain anymore, trying to do something I want to do which hasn’t happened in a long time. I don’t want to continue wasting away my life in bed, feeling future less and doomed to spend the rest of my life in bed living off my parents.  It’s my way out and at the minute I don’t have a back up option, which is probably a bad thing. I suppose I could potentially do an open university degree but that’s not what I really want to do, I want to be normal and actually go to college and then to university, all be it I will be a few years older than the typical university student by then.

I’m scared if this all falls through that I won’t be able to pick myself back up again.