Thursday 18 September 2014

Struggling, & Questioning Myself (Updated)

I'm really struggling with my mental health at the moment.

Recently, I went to see my GP to ask about a referral for some sort of help, that wasn't the same old CBT I've been through twice before. I had to cancel the last lot of CBT early, because I couldn't get there, it wasn't helping me, and I just don't think my therapist was very helpful in general.

I tried to explain everything, including my anxieties with leaving the house by myself. I said that I didn't want to self-diagnose, but I wondered whether it was Agoraphobia. The GP said that she thinks it is, and told me that maybe I would be able to have a CPN see me at home. I said that I'd definitely like to have something like this, so she made the call to the main mental health referral team in my area.

That's the thing with gaining access to mental health services in my area. Everything goes through the referral team, and no matter what the GP might think their patient needs, it's the referral team who decide.

Big surprise, a letter for me arrived a few days ago, to say I'd been referred for CBT. Again. I'd have to ring the CBT team to arrange a phone consultation, to see whether I'd qualify for one to one CBT, group therapy, or online CBT/self help information. I did ring the place today, and have arranged a phone appointment for Tuesday. I'm going to see if this team could refer me on to something else, or could at least give some advice.

I've also written a 4 page list of all my mental health problems. They're categorised into Depression, Generalised Anxiety Disorder, Specific Anxieties and Other. I'm actually questioning my GAD, because I think that most of the time, the anxiety that I experience, is due to specific reasons, rather than being without a known cause. I do get some more general anxiety, but I just don't think it's often enough to warrant a diagnosis.

I probably should've waited for a better day, where I could cope with these thoughts, before writing down and focusing on everything all at once. It's left me feeling completely overwhelmed. I hadn't realised just how many problems I actually have, and the more I think about it, the more I'm scared that I'll be like this for the rest of my life. I can't focus on anything else properly, I'm spaced out half of the time, and extremely emotional the other half. I'm really not coping at the moment, but I'm finding it very difficult to explain why. Right now, I feel as if I'm losing my identity. That's a very distressing and confusing thing to feel. It's something I'm not used to. I think that I should ring the crisis team, or Samaritans, but I just don't know how to put things into words, so I don't think either could help me.

I'm going to update this post tomorrow (I should really sleep soon!) to show my list, and a particular mental illness that I'm starting to think that I *may* have, but am reluctant to say for sure, until I've spoken to a professional.


(TW: Mentions of vomiting, wasps, abortion, suicidal thoughts, body image, and weight)

I know, I took a long time to update the post! My memory is absolutely terrible at the moment, so bear with me. I will do my best to summarise this massive list of mental health problems. I did try to get in touch with a charity for advice on some symptoms I had, and the diagnosis I think it could be, but I've not had a reply. Anyway, here we go:

Depression: Every day I get suicidal thoughts & some days I get very strong urges. The fact I live with my parents, makes me safe. I have already stated to therapists that if I lived by myself, I would have attempted something by now. Nothing has helped these thoughts subside, although I think the Amitriptyline helps the urges sometimes, but not nearly enough. I also get feelings of guilt, helplessness, worthlessness, I feel like I'm selfish for dragging people down when talking about myself. I'm very negative about things, and I have a real lack of motivation that makes me feel lazy, even though I can't help it. I get frustrated with myself and others, which makes me irritable and snappy. I've found myself starting arguments easily, and I've pushed friends away because I feel like I don't deserve their friendship. I dread the future, because I can't see things getting any better, because nothing is working. I see myself as a hypocrite. I have extremely low self esteem, and hate that I've put on weight. My appetite fluctuates a lot. My sleep pattern is completely screwed up. I can't sleep until late (3am is an EARLY night for me) and I either get only a few hours, or I sleep too much. I go from trying to get help from doctors, to feeling like there's no point, they won't help, and I'll talk myself out of contacting them.


General - I get anxious and stressed out very easily. I can cope with some changes in routine, but they make me very stressed out. I can only get travel to appointments at certain times, and this change still affects me a lot, because it makes getting appointments more stressful. A lot of days, I feel as if I NEED to be busy all the time. If I'm sitting around not doing much, then I'll feel guilty and lazy. The thing is, I can't keep busy for long because of the Fibromyalgia. It isn't every day (I don't think it's even that often, although my parents disagree) but I do get very on edge and fidgety. This is usually due to an upcoming appointment, assessment, or plan to meet a friend. I can never properly relax. Sometimes I will get panicky etc for no reason, but most of the time I can say why I'm anxious.

Specific - 
Agoraphobia - I think this is something which developed when I started getting physically ill. I've always been nervous going out of the house by myself, to a certain extent, but it didn't really affect my daily life until I became physically ill. My Fibromyalgia started off with severe fatigue and severe nausea. I would throw up every day, and wouldn't feel well enough to leave the house until the evening time. I did try to get to lectures, but I'd be extremely nervous, I wouldn't be able to concentrate, and I'd usually have to leave in the break. I'm amazed I managed to get my degree at all; considering how many lectures I missed. I had not been diagnosed at that point, but luckily managed to get sick notes so I could have late takes for exams, and complete them in the sick bay near a toilet.
I'm now at a point where I can only manage to have a very short walk outside, to post my latest sick note. I try to wait until a quieter time when I go outside, as I get extremely paranoid that I'm being watched or followed. Sometimes I swear I can hear footsteps behind me, but no one is there. I cannot travel anywhere else by myself, even by taxi. I haven't taken a bus in years either.

Group Situations - The last time I was in a proper group situation, was at my Work Programme induction. I wasn't even aware I'd be hauled into a room with a few other people. I probably wouldn't have even made it to the office if I'd known beforehand. I only lasted about 5 minutes in the room, before I was clearly so distressed that I had to be taken out again. I don't know if going to town, or into a shop, can be considered a group situation really. It doesn't happen often anyway, and I get very nervous. I'll either be very quiet, or too loud and talkative. But with that kind of group situation, I can escape whenever I need to, even if that just means going outside or to a quieter place. In a situation such as a meeting, or group therapy session, although I can physically leave, it is considered rude and brings a lot of attention to myself (which I also find extremely embarrassing and difficult). If I am going to a shop with my parents, you can guarantee that the first question I'll ask them is "will it be busy?"

Phone - This is something I'm trying to manage myself, although I know I still have a long way to go yet. I get very nervous with making calls, and even more nervous with answering them. Most of the time, I won't answer the phone unless I know who it is, and I'm expecting the call. Very occasionally I can answer the landline to a stranger. I will still appear nervous however. I mishear things a lot, and don't fare well with questions fired at me. I need to be able to either have time to think about my answer, or I need to be able to read the other person's body language. The form of contact I'm most comfortable with, is email. But of course, so many companies still prefer contact via telephone. My levels anxiety with phones, varies from day to day. Some days I can manage to answer or make a phone call, some days just the idea of it makes me a nervous wreck.

Wasps - I've never been stung by a wasp, or chased by a swarm. I think I've always been afraid of them, but since secondary school, it's become an actual phobia. This makes warm days very difficult. I really want to enjoy the sun, I want to be able to eat and drink outside, but I'm constantly looking round for wasps. I can't put my finger on why I'm scared of them even though I know it's irrational. I've had chronic pain for over 4 years, yet the idea of being stung by a wasp fills me with dread! I had the TB jab for god's sake, and that burned like hell. The sight of them, and the buzz they make, scares me too, even though neither is dangerous. If one follows me, goes near me, or flies into the same room as me, I tend to yell out, freeze, or try to dodge out of the way. I go hot and cold all over with pins and needles, I get breathless, nauseous, dizzy and sweaty. Even talking about them makes me feel like they're crawling all over me. I'm very itchy now, just describing them!

Bladder - This is the main thing I wanted to talk about today. I have developed a very intense fear of losing control of my bladder when outside, or in a situation where I can't easily access a toilet. I'm looking into it as much as possible, and I'm very reluctant to say for sure (because I haven't found the condition applying to using the toilet) but I'm starting to think I may have Obsessive Compulsive Disorder (OCD). I think about my bladder all of the time (to a certain extent) but the thoughts are much more intense when I'm travelling or in a situation where I can't get to a toilet easily. This stemmed right from when I got a few bouts of Cystitis, which led to my Overactive Bladder Syndrome. A few years ago, I started getting routines (which I suppose could be called Compulsions) but they've been at their worst for over 2 years now. It's very embarrassing for me, but I'll explain it here.

  • I have to be the last person to visit the toilet, before going outside.
  • I have to have at least 10 minutes for this, otherwise I get extremely distressed and snappy.
  • I will go to the toilet 6 times 
  • Each time I go, I have to wipe 10 times 
  • After 4 times, I will go and sort out my bag, stick etc. I will check quite a few times that I have everything I need
  • After the last 2 times, I will make sure I'm out of the door as quickly as possible (quick for me, with my mobility problems, anyway).
  • If I have to wait for more than a few minutes, to go outside, I will have to go to the toilet again. Sometimes I have to start my routine all over again
  • This has caused arguments with my family, embarrassment with friends, and used to mean I'd get into trouble for missing meetings when I worked. 
  • I can take anywhere between 10 and 30 minutes to completely this routine. I avoid going out of the house a lot, because of this.
I've been trying to gather information about the kind of obsessions and compulsions that come with OCD, but a lot of it is to do with contamination, fear of causing harm etc. I'm sure there must be other thoughts and behaviours that apply, but I've not found any information about my particular thoughts and rituals. I don't think I have this pattern of behaviour with anything else. I'll check things (oven's off, straighteners are off, doors are locked, the right address is on an envelope etc) but this won't be a certain amount of times, and it doesn't affect my daily life or cause a lot of anxiety. This ritual in the toilet does though. If anyone could give me any advice, I'd be very grateful! Let me make it clear that I am by no means saying that I definitely DO have OCD. It could be something completely different, but I'm just considering it & I haven't found any other condition that fits what I think and do. 


Abortion - I don't even know if this would come with a particular diagnosis, but it's something that still affects me, and that I really need some professional support for. This is the link to the blog post where I describe my experience at 19. It's not something I think about all the time, but I tend to avoid the topic as much as possible. I can sometimes zone out, if it's mentioned on television (sometimes I have to leave the room though). It's in face to face conversation and online that I get triggered just by the mention of it though. When I get triggered, nothing feels real. I don't know how this can happen at the same time, but I also get very panicky, shaky and tearful. I do try to distract myself, but nothing works. I find it very hard to concentrate on any conversations and I want to escape from everything. For a while after my abortion, I didn't feel like myself at all. Even some of my hallmates started to notice. I felt like I'd stepped out of my body, everything was surreal. I felt pretty numb for a while, and I was just going through the motions rather than actually living. It's very hard to explain properly, and I haven't fully explained it to anyone.

Surreal - This is something that usually happens when my levels of anxiety are very high and/or I'm extremely angry about something. I find it's usually in response to something, rather than happening without a cause. I've had this happen right from when I started getting bullied. It happened a lot in secondary school for instance. I think this is why my memories of school are pretty blurred. I would feel detached from my own body and identity. I would feel as if I had less or no control over what I said or did. It was if I was just a spectator, as if I was just watching myself say and do things. This happened for a few months after my abortion too. I think it's called Dissociation? It's something I've not spoken about to any professionals. I remember it happening a few years back, when my ex came with me, on a family holiday. A drunk guy in a bar had started threatening my ex (he had a problem with my exes long hair or something). Before I knew it, I was yelling at the guy, turning the air blue with my profanities, and generally being pretty intimidating. I didn't hit him or anything, it was all verbal. I felt like I was watching myself do this though. I can't remember what I said, I just know it was very aggressive. I felt like I couldn't control it. The guy did apologise in the end, and no one got hurt thankfully. I wish I'd handled the situation better though, even though I couldn't help what I did.

Paranoia - I don't know if this can just be explained by Generalised Anxiety Disorder, but it feels separate to me. I am so, so paranoid. I keep feeling as if I'm alienating my friends. If someone writes a status, tweet etc that is clearly about someone, I suddenly get worried that they're talking about me! I know it sounds incredibly self-absorbed. Even when someone's being very nice to me, I still wonder if they mean it, or if they're being sarcastic. When I'm outside, or near a window and see a car I don't recognise, my first thought is that it might be a journalist, or some investigator for the DWP. I don't even think that's an irrational thought, because it's been known to happen to people on benefits. Someone makes a malicious claim to DWP, someone is sent to spy on the benefit claimant, and next thing you know, a snapshot of their life (for instance, someone on ESA who goes to the gym to try and strengthen muscles, and a journalist instantly thinks they're lying about their illness/disability) is then plastered all over the papers, accusing them of faking. If I'm outside, I feel as if everyone is watching the way I walk, seeing how far I walk, seeing how fast I walk. I get a lot of pain with bending, and it can get far too painful to bend at all, but I sometimes have to, in order to pick the post up. A cyclist who commented on my walking the day before, happened to be cycling past my drive, when I went to pick the post up. He slowed down and stared at me. For days afterwards, I was jumping at the phone and in a state of constant anxiety, because I thought he'd report me (even though it wasn't even something that I claimed I couldn't do at all!) It's ridiculous I know.

Arguments - This could be part of the Depression, but I'm not sure. I avoid confrontation as much as possible with friends, but I tend to do the opposite with my parents. I get times when I'm incredibly angry and I don't know why. I'm never ever violent, and I won't threaten anyone however. I snap at my parents, and usually have to take myself out of the room if I feel my anger getting too much. It's not even for an understandable reason. It could be a certain sound (such as eating food, biting nails, conversation when the television is on, even conversation on its own) that triggers this anger.

I'm sure I'll remember some more things, but I think this is enough to explain on one blog post for now. I've tried to be as honest as possible, and I'm aware I'm not being very fluent. My GP has said that I have a lot to deal with, when it comes to my mental health, so it'll have to be treated one at a time. I just don't think CBT is going to even touch the surface. It certainly hasn't so far.


  1. Firstly, you do realize how brave (if that sounds condescending it really isn't meant that way) you are just getting all of this in the open don't you? I keep thinking of doing similar myself but just end up talking myself out of it!

    I think that what you have written comes across really well. It might be worth asking the CBT person if you can email them this. I know how draining it is having to tell different professionals what they need to know, especially if you feel like you might not even get the help you need at the end of it!

    I don't know much about OCD but your bathroom 'routine' does sound like it might be that sort of thing. It seems as if my daughter, who also suffers with misophonia (I wonder if anxiety/misophonia/OCD are similar types of issues?) may have some kind of OCD where she *has* to stay on paths/pavements when she is out and can't do a short cut across the grass - she realizes it's strange, but says she literally can't get her brain to understand how its possible for other people to do this. I think what I'm trying to say is that some anxiety/OCD behaviors must come from something happening that causes you to *think* differently & the longer it goes on for, the more ingrained it becomes... From what I know about CBT it could be helpful for the more generalised anxieties (such as thinking people are watching you or judging you etc) but maybe a more indepth therapy & I think there are some drugs to help with OCD as well.

    I did *one* session of CBT over 8 years ago in which I had to draw a pie chart of bad stuff that I was responsible for & stuff that was down to other then 13 year old daughter 'ran away' the day of the next appointment & I just couldn't bring myself to go back - ever...because I have agoraphobia/ anxiety etc. HOWEVER, it does seem to make sense if it helps you re-think stuff you think you 'know'.

    I once refused to even go to the Dr's for about a year because I was positive the receptionists were talking about me! Though your fears about being watched because of benefit fraud are much more logical because of the was sick & disabled & poor people are being made to feel in this country at the moment!!

  2. I understand what you mean about dissociation as well, although until I read your post I'd never put a name to it - so Thankyou! I think your brain maybe tries to protect you from stuff that is distressing...I have lost the memories from most of my young childhood and also when my kids were babies because of abuse etc then every so often I see, hear, smell something and WHAM get a bit back, scared the crap out of me when it first started!

    I also have fibromyalgia and I think that that can sometimes cause a similar sort of feeling, like too much information - noise, movement, colour, i can't really explain it, but its like you sort of 'shut down', and it waves over you. Kind of like when you have a really bad hangover and you get that feeling that the world is all sort of happening around you but you aren't part of it? I definitely think that having mental health issues is really complicated by fibromyalgia - like seriously though, we've already got now even if we build up the confidence to go somewhere our bodies decide to shut down and either make us too tired or in too much pain to do anything about it!

    I realise that this hasn't been very helpful to you. I do think it would be a good idea to send this information in an email or something to give the CBT people all the information they need to know how to best help you. Also maybe think about which of these issues you think you'd like to deal with first. I find that when I think about my issues they seem like this huge mess of things and its just all too much and my brain goes 'nope, not gonna deal with this' and I shut down, so maybe doing one thing at a time may help. Also, remember that you haven't given up!! You are trying to make things better, and that is bloody hard work for anyone, without the added crap of a chronic illness on top. So give yourself a break.

    Oh Oh, one more thing! Not getting on with your parents! I think it can be really hard going back to stay with parents especially if you've lived away from them for a bit, its like we just sort of slip back into the old roles of child/parent even though all of you have probably changed & its really hard to break out of for everyone involved - also they might be the only people you feel you can be 'yourself' with & its really easy to sort of throw all your emotions at them because they're 'there' & you know they will love you whatever happens. And because they love you it can make you feel resentful especially if you are having suicidal feelings, because worrying about how they'd cope means you can't do what you want. Which is good!! Even if it doesn't feel like it at the time, because the world is a better place with you in it.

    Ok, well I'm shutting up now, I hope that even if my bletherings haven't helped, that they haven't made you feel worse - if they have just ignore me ok (fibrofog etc etc)

    1. Thank you so much for reading, and for your replies! When I saw I had 3 comments for moderation, silly old me thought I'd have a load of anon hate, or people criticising me for saying I think I might have OCD. So that's the paranoia and anxiety kicking in again! Your comments definitely haven't made me feel worse at all. Quite the opposite. I feel like you really understand where I'm coming from. I was nodding in agreement to so many things you said. Especially the part about feeling resentful! I haven't been able to explain it properly before, and I've thought I was a bad person for it, but I do tend to feel resentful that I can't do anything about the suicidal thoughts, because my parents are there.

      I'm so sorry your daughter is having these rituals that she's not able to change :( I hope she can get the help she needs someday. It can be very hard to know how to open up about it when you don't hear of very similar experiences. I hope things improve for all of you :) Thanks again for the wonderful comments <3

  3. sorry about doing 2 (now 3) replies - I think I wrote too much, sorry about that!