Thursday 25 September 2014

I'm sorry.

(TW: body image/weight, suicidal thoughts)

That's all I can think of saying right now. I'm sorry. I really don't like myself very much these days and I hate when I'm like this. I take things personally, I try to support people but feel I'm saying all the wrong things. I hate myself for getting frustrated about that, because I think it makes me self pitying and self absorbed.

Therapists seem to think I'm so damn self aware and organised and good at understanding what's going on. The truth is, I'm trying to find answers and work out what's going on with me, because nobody else is trying to. I feel like the mental health diagnoses I have (Anxiety and Depression) don't fully cover what I'm feeling, and I'm really searching for answers but it gets so hard to put my finger on it, and describe it properly. Maybe it's something that's always there, right from school, but it's just much worse now. I don't know. Maybe it's nothing, and I'm just generally a pretty awful person.

I made it to 10'000 blog views today. I know that's probably nothing in comparison to more well known bloggers, but I never thought many people would actually want to read what I had to say. I actually felt pretty excited that I'd reached that sort of milestone. So why am I feeling like a terrible person who deserves nothing now?

I've had my phone assessment with Healthy Minds now. I'm amazed I managed to not cry though it. I explained some of the things I talked about in my last post. I've also emailed an OCD charity to get their opinion on my obsessions and compulsions. They said it definitely sounded like I could have a form of it, but obviously my GP, therapists etc are the ones to discuss this with. The therapist on the phone said that because these behaviours were disrupting my life so much, this is what we should be focusing on first. That's definitely a positive thing. Therapists in the past have just brushed it off as a bit of anxiety. It's something I really really need support with though. I know it won't be easy, and I know it will take a while, but I can't leave it to get so bad that I never ever leave the house.

Anyway, I digress. Long story short, the plan is for me to have one more go at High Intensity CBT, but they are putting a note on the system to say (because of my agoraphobia) that, for now at least, I would need either home visits or phone appointments. Also, I've been advised to ask my next therapist to refer me to the Wellbeing service. I need to look into this further, and will probably explain it in another blog post, but from what I've been told, this team consists of CPNs and Support Workers who can meet me at home and help with the agoraphobia, repetitive behaviour etc. If that's true, then this is definitely something I need. Maybe it'll be easier to get them to understand how things are going too. Lastly, I need to review my antidepressants with my GP. I have no idea what other ones she can suggest, because so many of them apparently cause weight gain, and my self esteem is so low, I just don't know what I'd do if I put on more weight. I wish I could just accept my body, love it even. I wouldn't think any less of anyone else putting on weight, so why do I hate myself so much when I do?

The waiting list is about 8 weeks for the CBT, and about 9 months for the Wellbeing service, so basically I have to try and cope in the meantime. I don't think I feel safe right now. I feel like I really want to do something, but I can't do anything because mum has a hospital appointment tomorrow and I can't mess things up for her. Just gotta get through tonight.

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.

Hair loss Update

I can't remember if I've mentioned much about the hair loss I've had so far. I've had it (on and off) for around 2 years now. I originally thought it was a bad reaction to some hair dye I'd tried for the first time, so I didn't dye my hair again for another year, but still found I had hair loss whether I dyed my hair, styled it etc or not. A month or so ago, I finally went to the GP to see if there was anything she could prescribe for it. The latest bald patch is twice the size of ones I've had before. Luckily it's on a part of my head that's easily hidden (I've never been more glad for having naturally thick hair), but it makes me worry that it's getting worse and I have this horrible feeling that I'll end up with patches far too big to hide properly. 

Anyway, I spoke to my GP and she sent me for some blood tests. My thyroid (T4, TSH etc) was tested and I had a full vitamin screening. My thyroid is fine (apart from the slightly high TSH), vitamin D is actually back to normal (yay for carrying on with the higher dose against the orders of my Rheumatologist!), but my B12 and Folate are slightly low. It also turns out that when I was originally tested for this (about 2 years ago) and then treated, I hadn't actually had any follow up tests to check that the treatments were working. She also had my antibodies tested and that came back normal. I get enough folates and B12 in my diet, so even my GP can't figure out why I'm low. So I'm on low doses of both, for about 3 months. She doesn't think these are causing the hair loss though. So the only answer is that lovely word that us spoonies are sick to death of hearing: Stress. 

One of the GPs at my surgery, also has a special interest in skin conditions, so my GP said to make an appointment with him. I did do, and I'm now using Dermovate. I need to check, but (I think?) he said that after a month, I need to stop using it for about a week, before restarting the treatment. Apparently it's quite a potent steroid treatment that can cause thinning of the skin. So far it's caused a few little spots, and a bit of itching, but I can deal with that. 

I've taken a picture of the bald patch before treatment, and I think I'll take one monthly to see how it progresses. I WON'T be posting the pictures here, because I'm too self conscious right now, and I so hope my phone doesn't decide to sync with flickr, twitter, instagram etc. 

I've also prepared myself for worst case scenario: total hair loss. I know it's a purely aesthetic thing, and I really shouldn't care, but I have very very low self esteem (not something you'd guess when I post so many selfies!) and I really want a reason to feel attractive & good about myself at the moment. It just feels like I'm losing everything, & this hair-loss is the thing that shouldn't be a big deal, but feels like it.

I have some scarves that I could use, and I've also bought a couple of wigs. One of them is this lovely long light brown, and the other is shoulder-length layered red. I need to sort them out so they fit the shape of my face and look as natural as possible (bar the very bright red!) but at least I have something I can wear, that I can hopefully feel ok in, if I'm in public. The one thing that I find stops the wigs from looking natural, is the fact that you obviously don't get a parting with them, so you can tell the hairs are woven/sewn in. I'd be very grateful if anyone could give me any tips for making wigs look more natural. Either comment or find me on twitter, tumblr etc. 

Sunday 7 September 2014

A very short post (for me anyway)

Trigger Warning: Mentions of suicidal thoughts.

It's nearly 6am, I've still not slept and I just need to write something down. I'll put some proper updates in my next post when I'm more with it.

I honestly thought the Amitriptyline was helping the Depression in some small way. I may still have been thinking about suicide every day, but it was more in a passive sense, I felt safe, and I didn't have any really strong urges. I guess it can't be like this all the time. Maybe I have to come to terms with the fact that the Depression, like the Fibromyalgia (& let's face it, the Anxiety too), will be with me long term.

Right now, I desperately want to escape from my mind. It's very hard to pinpoint what exact thoughts are going round my head at the moment. I'm not sure what I want to do, but I feel so agitated, helpless, guilty, like the worst daughter and friend, like everything about me is just...wrong.

It's like there's a big messy knot of all these emotions and more, that I want to rip from my head and stamp on until there's nothing left. I want to escape.

Am I making any sense at all? I wouldn't blame you if you disagreed.