Monday 22 December 2014

An untitled poem

I recently sorted through some paperwork, old music sheets etc, and came across a poem I wrote when I was around 14, 15. It's not exactly a cheerful read, but I think in a way, it can be linked to the bullying I experienced at the time.

Since I was around 8 years old, I loved writing poetry and songs. Granted, they were probably terrible, but they gave me that opportunity to create something from my own thoughts and feelings. In the same way that music (I played flute, keyboard, guitar, and I sang in choirs) helped me to express myself, so did writing. I kept a lot of my songs quiet. This was partly due to how much I criticised myself, but was also due to the fact that I once brought to school a print out of a song I wrote about bullying and self harm. Clearly I showed this to the wrong person, and it was spread around the school. The words (that I had so honestly poured out onto paper) were suddenly exposed, and ridiculed; which made me even less likely to share something so personal to myself.

 I'm very critical of my own writing, and think the point of the poem should've been a little clearer, but as it is relevant to my previous post (Where it all started) I felt that I should post it here.

(TW: Suicidal thoughts, bullying)

The people in the street
They whisper about her as she goes by
They can't know the hurt inside
The pain they cause

She won't speak,
Because you don't listen
She can't love,
Because she's been hurt too many times before
She doesn't cry,
Because it hurts too much
To say goodbye.

And she goes home and cries at night
Because she's too tired to fight
She's given up,
Because there's nothing left but tears,
Because it hurts too much 
To say goodbye

Living in nothing
Worst nightmares come to life
You'll never know what you did to this girl
Because it hurts her too much to say goodbye

The people in the street
They whisper about her as she goes by
They can't know the hurt inside
The pain they cause

She'd never tell you
Just how much you hurt her
She'd never tell you
How the whispers cut so deep
She'd never tell you
Because it hurts too much to say goodbye

She won't speak
Because you don't listen
She can't love,
Because she's been hurt too many times before
She doesn't cry,
Because it hurts too much
To say goodbye

And the people in the street
They whisper about her as she goes by
They can't know the hurt inside
The pain they cause

Because it hurts too much to tell them why.

Monday 8 December 2014

Where it all started

I'm not sure what brought me to think about the bullying I experienced throughout my childhood, but it's a big topic and I suppose right now I finally feel ready to speak about it more openly. There's a lot to it, and I still find it very hard to explain, but I'll try not to ramble too much.

Disclaimer: I'm simply speaking about some of my experiences, thoughts and opinions here. I'm not particularly aiming to give advice.

TRIGGER WARNING: Details of self harm, bullying, and violence.

I was always quite a chatty, friendly child right up to primary school. I thought that if I was nice to other people, then they'd be nice to me. I tried to get involved and make the first move when it came to getting to know people. I'd always been told to be polite too.

I can't pinpoint exactly when I started getting bullied, or even why. I made friends fairly easily, but there were also classmates who decided to boss me around. I wasn't very assertive, & usually if someone told me to do something, then I'd do it as I didn't want to argue or anger them. I was in the infants at that time, so it was all very childish & none of it physically violent thankfully. I had a best friend at the time, who was quite quiet but lovely. The bullies would tell me that I had to hang around with them, and not her. They were very pushy. I don't remember ever knowing what they'd do if I stood up for myself, but I must've found them pretty intimidating. I don't think this lasted the entire year, but I remember a couple of girls from a few years above me. They also bossed me around, cornered me in the playground etc. I remember a time I was late for my afternoon class, as one of the girls had locked me in the mobile toilets outside (the building was very old, so some of the classes and the toilets were in mobile blocks). They'd done this because I'd refused to deliberately hit a girl from my class, with a conker. They didn't say why, but I knew they didn't like her and obviously wanted me to be the one to get into trouble.

I'd not long started in the juniors (Year 3) when my parents and I moved house. Dad started work early and Mum couldn't drive, so she and I used to take two buses to my school. It got very difficult to get there in time, and she wasn't happy at my headteacher's failure to deal with the bullies (it basically involved a sit down meeting with me and the bullies, where they denied everything that had been reported, and I was too scared to speak up) so I moved schools to one just a couple of streets away.

Being the "new girl" was a bit of a novelty, and I did get a fair amount of attention, mainly from people in the year above me. There were a few people who made it very clear they didn't want to talk to me. I didn't know what I'd done, but then again you can't please everyone! I also joined choir, gymnastics and the local Brownies group, in order to socialise. I did make a few friends and really thought that my time at this new school would be much happier than at the old one. One person I thought I was close friends with started to boss me around and tease me. Anything I thought I was good at (singing etc) she judged me for. I had a fairly small, flat nose at that age. I wasn't aware that people saw this as a bad thing, until she tried to imitate it. She would pretty much humiliate me in front of most of my class. I still wasn't very good at sticking up for myself, so I guess she saw me as an easy target. The odd times where I lost my temper at her & we'd fall out, she'd make sure that she kept very close to my friends, so I'd end up on my own at break-times. I felt like it was better to keep quiet & put up with the bullying, than to alienate everybody. I won't go into detail, but there were times when she would try to make me believe certain upsetting things about my family. I didn't believe her at all, but it did mess with my head quite a lot. She lived very near me, so it's not as if I could escape the bullying away from school. It got to a point where I didn't feel safe on my own street (and sometimes my own home). I never used to get physically ill, but I would wish for this so I could at least stay at home and have a day or two away from the bullying. When I felt really upset/stressed out at home, I would bite, scratch or pinch my hands. It was never to a point where it was very noticeable the next day (only my parents noticed a few times) but it was enough to cause enough pain to distract me. It's not something I've spoken in depth to therapists about, but I guess this was a form of self harm.

I looked forward to secondary school. Only a couple of classmates went to the same one as me, and they were both friends. I started to be a little more chatty again, although I did get some teasing. I'd not tried to fit in when it came to fashion or music taste. I was ridiculously polite as well, and honestly I think a lot of people just thought I was weird. Year 7 wasn't too bad. A girl in our year was seen as a bit of an outcast. She was picked on quite badly. I wish I'd stuck up for her instead of being so selfish, but I felt as if I had to do what I could to fit in; especially when I started being teased. Year 8 was my absolute worst year for bullying. The girl from the previous year had left (due to the bullying she'd received. I wish so much that I'd been a better friend to her). Everything I said, or did, or wore was judged. I felt as if I couldn't do anything right, so decided it would be better if I stayed quiet. Of course then, I was targeted for being the "shy, quiet one". The friends I'd made in the same year as me, weren't in the same classes (we had to stay in our forms) and, due to staggered lunchtimes (big school with a small canteen), I didn't see them very often.

Around this time, I used to have extremely violent dreams about the classmates who had bullied me. I think this happened because I was so frustrated with myself for not standing up to them. I thought that it was my fault that I'd "let" myself be bullied again. In the dreams, I'd be kicking and punching them until they fell unconscious. I don't know if I could call these intrusive thoughts, but these dreams would be on my mind most days, and I'd worry so much that I'd act on them.

I had the odd outburst where I just couldn't put up with things that had been said/done that day. It usually involved me yelling a bunch of obscenities at the person though. I only ever once did anything physical, and it was in response to seeing a friend being teased/pushed around by one of the bullies. She had started tugging my friend's hair, and then went on to tug mine when I spoke up. I remember grabbing her fingers and bending them right back. I really did want to hurt her, but stopped when a teacher walked past. As far as I remember, she didn't give me any trouble after that. I'm not sure what the right thing to do would've been, but I definitely wouldn't advise doing that!

I used to be so worried that I was allowing the bullying to happen, that it was my fault, and that I'd humiliate myself in some way, that I'd start rituals of checking, and repeating (something I only realised recently). In year 9, myself and a few of my close friends began reading up on Paganism and Wicca. We didn't go into any real depth, & I don't know enough about it to consider myself pagan right now, but we learnt about blessings. I can't remember which ones exactly, but I used to recite a couple of blessings each night, and I became obsessed with repeating them three times at exactly midnight. I started to believe that if I did this every night, three times, and in the "right" order, that my next day at school wouldn't go too badly. I also started becoming interested in divination, and would keep certain "lucky charms" in each pocket of my blazer. If I didn't have them all on me, in the "right" pockets, then I believed I would have a very bad day. This carried on right through to 6th form. I started to get more confident in 6th form. I still had the odd bit of trouble, which I'm not sure even qualifies as bullying (just people being assholes!), but I found it a bit easier to brush off.

This is the first time I've described my experiences in such detail. I bottled a lot of it up. The only advice I ever received about bullying was to "tell the teacher/your parents". I did that a couple of times, but only ever found it made matters worse. I remember confiding in a friend as well, but they decided that telling my bullies would be the best course of action. They meant well, but this really wasn't helpful & I didn't feel as if I could speak to any other friends about this, in case they did the same.

Schools I've attended have claimed to have a "zero tolerance policy" on bullying, but no other details other than that. I'd be really interested to know the types of things that teachers & parents are told to look out for, as well as protocol when they find out that someone is being bullied. I don't think a "one size fits all" approach would be the best course of action, as bullying is a lot more complicated than we are led to believe. It isn't just about physical violence or name-calling. It can include teasing/putting someone down & making them feel bad about themself, exclusion/isolation from friendship groups, and other subtle but still very damaging methods.

Throughout school, I desperately needed to have someone to talk to about these things. Even though my friends were amazing, I worried so much about word getting to the bullies that I simply didn't talk to them about it, and preferred to distract myself. The school nurse was lovely, but only dealt with physical problems (as far as I was aware anyway). You had to approach a teacher before being allowed to see the nurse, so of course I didn't even try to see her about this. I wish that there had been a school counsellor that I could see in confidence.

I also wish that we'd learnt about mental health in school. I'm pretty sure that I experienced anxiety and depression even as a young child/young teenager. At the time, however, I saw the symptoms I had as my own personality flaws, rather than things that I experienced, that were triggered/exacerbated by the bullying. Maybe I could've at least learnt some healthier coping mechanisms, if I'd had that support available.

Tuesday 2 December 2014

Just an "admin error"

Apologies for my lack of blogging recently. The colder darker days seem to be making my symptoms flare up so often & I've just not had the energy to do much more than the odd twitter rant and a lot of RTing.

I've posted this a fair few times on Twitter, but wanted to add it to my blog. Thankfully the situation's been sorted out now (and turned out to be some sort of "admin error) but I still feel it's worth sharing because this occurs so often, and it's unacceptable. I'm on ESA, now in the Support Group, but not too long ago I was in the Work Related Activity Group; mandated onto the Work Programme.

Nearly 3 weeks ago, I received this letter from the Work Programme Provider I'd been with up until around June/July this year (personal details edited out):

I'm not sure how clear the picture is, but some of the wording concerned me, e.g. "you are not obliged to attend however it is extremely important that you keep in contact with us so we can help you to find work as quickly as possible"

As the date of the appointment I "failed to attend" was a date when I was still in the WRAG, I did get quite worried, as I couldn't remember if I had attended an appointment then. I'd kept all of the action plans I'd been given at each appointment, so thankfully found the action plan for around that time. It turns out that I'd been ill on that day and had rearranged the appointment for 2 days later. Even though I knew I'd done nothing wrong, and that they couldn't sanction me, the sentence quoted above made me extremely nervous. I wasn't sure whether to get in contact with them, or ignore the letter altogether as my attendance would be voluntary (and I certainly hadn't volunteered after the stress they'd put me through!) It took Diazepam and a lot of rest to even start to calm me down. The whole reason I'm in the Support Group is because I'm not well enough to "find work as quickly as possible". I thought that had been proven many a time!

I'm lucky in that I live with my parents, so my mother could call the place for me to see why I'd received this letter. The first adviser she spoke to seemed very incompetent. For some reason, they thought that because I was in the Support Group, I shouldn't be on ESA! She didn't give a reason why, or where she got this information from but regardless, we didn't get anywhere with her. The next person my mother spoke to was a supervisor who seemed a lot more competent. It turns out that the Work Programme provider uses the same template in most cases (regardless of whether someone's attendance is mandated or voluntary) and this had been a simple admin error, so I wouldn't need to attend. 

For me, thankfully the situation was resolved relatively quickly, but had I lived by myself when this letter arrived, I dread to think how I would've responded. The wording is confusing and frankly intimidating. What may be a simple admin error to a Work Programme provider, or a government department, could be devastating and even dangerous for a claimant on the receiving end.

It is difficult enough to even qualify for ESA. The descriptors do not consider many complexities of chronic illness or disabilities for example. The face to face assessments are said to test someone's "fitness for work" but do not consider any types of work specifically. They are not medicals either so tend to underestimate (or even completely disregard) how debilitating symptoms, such as pain, nausea, anxiety & fatigue, can be. If you're found not fit for work, but are considered fit for work related activity, then you are placed into the Work Related Activity Group. You can also be placed onto the Work Programme. When in this group, I found that there was real pressure to attend every appointment regardless of how ill I felt, or how difficult accessing the building was. They could not force you to do anything you were too ill for, but they would certainly push you and threaten with sanctions. I also found it very difficult to get any reasonable adjustments; even when I could prove why I needed them. This post gives a bit more information about my experiences on the Work Programme. 

Recently, the hashtag #CameronMustGo started trending on Twitter. Journalists have suggested that this is a form of bullying. As someone who experienced bullying for over a decade (and sometimes even when working), of course I'm against bullying, but I do not think this hashtag qualifies as this. It may not lead to Cameron getting the sack, but it at least provides some sort of platform where twitter users can share their opinions, experiences, and reasons why they are against him, his party, and his policies. Thanks to him, benefit sanctions have sky rocketed, hatred against benefit claimants is widespread, more and more we are hearing of people who have died after having their benefits cut or stopped altogether. Just a simple Google search will show you how much devastation this has caused. Surely criticism of him should be expected? 

Monday 6 October 2014


This post follows on from the one entitled Last Night

(Trigger Warning: Details of Self Harm and mention of Suicide)


I still felt really awful on the Tuesday, but thankfully not so bad that I would need to contact Crisis Team 1. The stomach pains were still there, but I was trying to take things easy and only have simple meals in small portions. I felt as if I knew what to do, if I did go into crisis, so I guess this reassured me. After all, I was "in the system" so they'd have to help, right?


Wednesday, things got much worse. I'd been feeling so down that day, and I couldn't concentrate on a thing. I had barely eaten anything either. Doing ANYTHING seemed completely pointless. All I could think about was ending my life. I did the right thing, and told mum how I was feeling. To be honest, she'd noticed something was wrong with me, so I don't think she'd have let me hide it. I was starting to talk about making plans, so mum decided to call Crisis Team.

They wanted to speak to me, so I thought that they'd finally do something to help! I explained (well, rambled) to the woman (possibly a CPN 2) that I thought I might be in crisis, I couldn't think of anything but suicide and I'd started making plans. I told her that in my last Therapy Contract 3, with the last therapist I saw, I had agreed that I would contact Crisis Team if I felt like this, and that I could be dealt with by them directly. From that information, I'd always thought that because I was "in the system" I could then self-refer. It turns out this information was wrong. The woman told me that I couldn't self-refer and would have to either go to my GP (closed by that time), go to the walk in centre (all the way across town, and would be closed by the time I got there) or A&E (they have a very poor reputation for dealing with mental illness). I choked out a "thank you, bye" before hanging up. So that was it. There was NOTHING I could do when I'm in crisis. Nowhere I could go where someone would be able to help. This made me feel even worse, so I decided to go to my room, pick up a pen and notepad, and write down my bank details, passwords etc. I hid this and told mum that I'd done this, in case anything happened. I wanted her to have that bit of money if she needed, and to have my online details so she could let friends know what had happened. It seemed to make sense to me to do these things. There was a plan I wanted to follow (which I won't detail here, as it could be very triggering) but mum wouldn't let me out of her sight. If I'd been on my own, I don't have any doubt that I would've followed through with it. So I was stuck. I couldn't do what I WANTED to do (suicide), or what I SHOULD do (get professional help). I still felt incredibly low, I still had the very strong urges, but all I could do was exist. I still had very bad pains, and wanted to escape from things, so I decided to start my Tramacet 4. I knew the side effects involved things like drowsiness, feeling spaced out etc. That sounded like the only thing I could do for myself at that time. It started to work, and even helped the pain,which I was so glad of. I thought I could just wait out these feelings, and that the Tramacet would help me escape them for a while. In the end, they made me very sick though. Clearly I should've eaten more, and just taken the one tablet instead of the prescribed 2. I had to throw up about 5 times, and the pain and exhaustion this caused, brought all the strong suicidal urges back.

Twitter was my outlet that day; more so than usual. I felt incredibly guilty for talking through everything, being so negative and moody. I am so sorry for worrying so many people. I wanted to let people know what was going on, but I think my tweets were getting pretty scary.

Mum decided to call NHS Direct (111?) around 11.30pm to see if there was anything they could suggest. I wasn't sure exactly what was going on (I was starting to dissociate 5) but she told me that a nurse wanted to speak to me. I tried my best to explain what had happened, how I was feeling etc. The nurse was very nice and said that I would be speaking to a doctor next, and that they may send a doctor out to me. I then explained everything I could do the doctor. I can't remember everything they said (I was very confused) but I remember them saying that an out of hours GP would be sent out & that it may be a few hours. When they hung up, all I wanted to do was go to sleep. I kept telling mum to cancel and (lied) that I would be fine. She didn't believe me though.

The GP arrived much sooner than expected (around 1am?). I didn't like that he asked so many questions that made me even more upset, but in hindsight he needed to get an idea of my medical history, childhood, family life etc. He asked me if I'd been abused, had I ever been sexually assaulted (this is something that happened when I was about 17. I've not spoken about it on this blog, but I may do at some point soon), how my relationship with family was, what my childhood was like (I rambled about bullying then, and the times I used to bite and scratch my hands), what I'm diagnosed with etc. We also spoke about the suicidal thoughts. He didn't exactly help, with the things he was saying. He spoke about consequences, and how I'm luckier than some people because I have a family etc. I thought he'd understand that Depression doesn't discriminate! I could be a millionaire and still be depressed. Granted, more contacts and money helps, but no one is immune from mental illness, just like no one is immune from a lot of physical illnesses. Sometimes these things just *happen*.

Once I'd answered all his questions, we discussed meds. I told him about all the antidepressants I'd tried, what I'm on at the moment, whether it helped (it didn't) and why the GP hadn't changed my meds. I told him that she was reluctant to try me on anything else at that point, because I was at a huge risk of suicide. He advised me to see my GP the next day, and ask to be referred directly to a Psychiatrist. I knew no better, so thought that she could do this (especially if I was having severe symptoms). He also gave me 2 Diazepam (2mg x 2) to get me through the night. I didn't think he'd be able to help further (why didn't they send someone trained in mental health??) so I gladly took the meds, and his advice. The Diazepam did calm me down a lot, stopped me throwing up, and helped me sleep.


The Thursday I was really exhausted and felt fairly calm, so decided not to contact the GP yet. That could be done the next day. I just wanted to have a quiet day, where I was kind to myself. I did worry that if I didn't get further treatment, however, that I'd go back to being in crisis.


I managed to get a home visit with the GP on Friday. I told her everything that had happened on the Wednesday night, as well as what the out of hours GP had said about the psychiatry referral. She told me that she didn't have authority to refer me directly to a Psychiatrist. Everything went through the Referral team (RAS), or Crisis team. She told me that she would refer me to Crisis Team for an assessment, and that she would prescribe me a "rescue course" of Diazepam, to take on my worst days. Apparently it's a strong and addictive drug, so shouldn't be taken every day. She asked me if I'd been in contact with Healthy Minds. I'd told her that I had, and that they had put me on the (8 week) waiting list for High Intensity therapy (for one more go at CBT) and told me to ask my therapist to put me on the (9 month) waiting list to see the Wellbeing team. My GP was shocked that I hadn't already been referred to both, so said that I could ask the Crisis Team to refer me to the Wellbeing team and see if I could be seen by them, sooner. She said that the Wellbeing team consisted of CPNs, Support Workers (or something similar) and that they had a Psychiatrist; who I could hopefully see. It sounded as if there was more support there for me, so I was satisfied with the information I'd been given. I even felt hopeful that this assessment would open doors for more support for me. Surely this would be the turning point for me, so I wouldn't keep getting the same old generic CBT?

Later that day I received a phonecall from one of the CPNs in the Crisis Team. She made an appointment for me to see her on the Saturday morning, at the psychiatric hospital near me, where they are based.


Dad drove me to the hospital in good time for my appointment. The CPN who greeted me, was the same one I had spoken to on the phone the previous day. She sounded very approachable and compassionate, which set my mind at ease slightly.

She asked a fair amount of questions, such as my medical history, what family life was like, childhood etc. I spoke about the self harm, the bullying, what I think made me worse etc. I know I wasn't being very fluent, but she did make a lot of notes. I also mentioned the dissociation. As far as I was aware, this wasn't a symptom of Generalised Anxiety Disorder or Depression. Not at the frequency I experienced it anyway. I told her what seemed to trigger it, when I started getting it and how I felt during. She seemed very interested to know more. I also spoke about the Agoraphobia and  the paranoia that came with it. She also wanted to know more about the suspected Obsessive Compulsive Disorder. I said I'd been reluctant to self-diagnose because of the information I had about it. Also the fact that I thought I only had obsessions and compulsions with one particular thing. She asked me whether I ever had any particular routines when I was younger. I had to think a bit but I realised that actually, I did. When I was a young teenager, and being badly bullied, I used to keep certain "lucky charms" in the pockets of my school blazer. I always kept certain objects in certain pockets. I also checked all of them a lot of times, to make sure they were still there. I told her that I knew it was ridiculous, but I thought that if I didn't make sure they were there, or if I forgot them, that I would have a really bad day.

I'd started learning about Paganism at that age too. I didn't mention this to her, but I used to say certain blessings the night before school. I felt that I had to say these blessings, otherwise something awful would happen the next day. The "awful" thing being the bullying getting really bad, or me being humiliated. I never spoke to anyone about this. It was a very private routine.

After hearing what I had to say, she made more notes and told me this did sound like OCD, but of course a therapist would have to confirm this.

She also told me that I couldn't be referred for High Intensity therapy as well as seeing the Wellbeing team. It was either/or. She didn't say why, but I gathered that this may be due to cutbacks to mental health services. The only other thing she said she would've signposted me to, was a group service for young adults with similar mental health problems. Unfortunately, it involved travelling into town to meet the group (not possible because of my Agoraphobia) and the service was only for people up to the age of 25 (I turn 25 next month) so they'd be unlikely to accept me anyway.

We then spoke about medication. She told me that I wouldn't be able to see the Psychiatrist, but she would speak to him to see if he could suggest a different medication to the Amitriptyline. In the meantime, I was to keep taking it. Another thing she said (which I found very interesting!) was that I could take the Diazepam every day if I needed to. Also that I was on a low dose, so that could be increased if needs be. Our session ended after this, and she asked me to wait at Reception while she looked for/spoke to the Psychiatrist. Unfortunately he was in the middle of an assessment, so she took my number and said she'd call me later with his verdict.

She kept her promise, and later that day I received the call from her. The Psychiatrist said that I was to stay on the Amitriptyline for now (as I'd only very recently had the dose increased) and to take the Diazepam as needed (so, not every day). If I still found the Amitriptyline unhelpful, then I could ask my GP to refer me to the Psychiatrist for a one off appointment, to review my medication. The CPN also said that if I felt I was at risk again, then I could call the Crisis Team, but I would only receive telephone support.

I'm glad that they are trying to give me a bit of extra support, but it doesn't feel as if this is nearly enough. A lot could happen in the 8 weeks I'm waiting to receive a High Intensity therapy appointment. Sure, I could ring the Crisis Team but, unless I have my crisis at a 'convenient' time, how on earth can I receive any actual support from them? I've been told so much conflicting information that I'm not sure what I can do if I go into crisis again (apart from take Diazepam and hope it knocks me out). I feel as if there has been a massive breakdown in communication between GPs and Mental Health Services. It's hard to know what the truth is, but from what I can gather, the referral team are the gatekeepers to extra support, and they appear to be keeping those gates firmly shut.

I'm lucky that I have my family and friends to support me in those times, and contact services when I refused to, but what if I lived alone? What if I'd alienated all of my friends and had no one to turn to? It doesn't bear thinking about.


1. Crisis Team -

2. CPN (Community Psychiatric Nurse)

3. Therapy Contract - 

4. Tramacet -

5."Dissociation (psychology)"

Sunday 5 October 2014


Follow my blog with Bloglovin I've just signed up to Bloglovin!

Wednesday 1 October 2014

Last Night (TW self harm & suicide)

(Trigger Warning: Details of self harm & mention of suicide)

Last night was scary. I was either in crisis or very close to it. I’ve been having severe stomach pains and bleeding recently but, being me, I was leaving it in the hopes it was just some horrible bug. Last night got too much though. I was thinking about all of my mental health and physical health problems. It seems like the list just gets bigger, but with no extra help. I'm trying to just accept it and deal with it. I never really have "good" mental health or physical health days. I guess it's more split into "doing ok", "coping" and "not coping". I couldn’t stop crying and was very very close to hurting myself. I didn't realise this for a while, and luckily it wasn't actually causing any injuries, but I'd started biting and scratching my hands. Years ago, I used to bite the back of my hands, when I was being bullied and I felt really frustrated and weak for not being able to do much about it. I think it was my way of letting the frustration out, and also a way of punishing myself for not standing up to them. It's only very recently that I've realised it is a form of self harm. Up until now, I guess I didn't think it was, because it didn't result in bleeding or a trip to A&E. This shows how ignorant I'd been about it before. 
I think this is the worst mum’s seen me. I refused to call crisis team because last time they did nothing. Mum had to try the GP surgery twice before they’d let me have an emergency appointment. I also had to speak to my GP over the phone. I didn’t want to, and I could barely get my words out, but I knew I had to. 
She was really kind and understanding. There’s something about her voice and general attitude, that can be quite calming. Sometimes I feel like I get too attached to her because I’m afraid of never getting that support again if I move out of the area. I made it to the surgery about an hour after the phonecall, and spoke to her about how I was feeling. It turns out that the Naproxen I’d been prescribed was starting to damage the lining of my stomach and my oesophagus. I dread to think what it’d have done if I hadn’t made sure I had food at the same time. I was told to come off it completely. I don’t mind that, because it wasn’t helping the pains anyway. The bleeding was due to a fissure, so thankfully nothing serious, & I have some cream to pick up tomorrow. I’ve now been put on Tramacet (a combination of Tramadol and Paracetamol) and will go on Tramadol if it helps and doesn’t cause too severe side effects. I’m also on Lansoprazole for the pain, acid reflux and sickness. Finally my Amitriptyline has been increased from 75mg to 100mg. She didn’t want to prescribe anything different because of the suicide risk (I was already at a huge risk of hurting myself). She did tell me that I should’ve rang the crisis team. I got home and felt a bit calmer, so no need to call them. 
Today, I’ve still been feeling really awful. I've been trying to have small simple meals, but I'm still having a lot of pain. I've decided to give it a couple of days before I try the Tramacet, just to let my stomach etc calm down a bit. The bleeding isn't as bad either. There was a lot of it last night, and I worried that I might have to go to hospital (my local A&E are pretty terrible, so I avoid them as much as possible). I took my 100mg Amitriptyline last night, and got to sleep around 4am (it was 7am the other day, so this is an improvement). I've been feeling a bit sedated today, and I'm worried about going into crisis again, but I'm trying to take it easy and be kind to myself. If I go bad again, then I’ll ring the crisis team. 
I know I've been taking a long time getting back to messages. I've been finding it extremely difficult to concentrate, but I will get back to people even if I can't manage to say much. I'm so grateful for people who have been there for me. It helps a lot :)

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.

Friday 15 August 2014

Asking for Help

Trigger Warning: Suicide

This post is pretty much a follow on, from my previous post, More Mental Health Rambling but also a (hopefully fluently written) collection of my thoughts after discussions on Twitter, about Mental Health services. What brought on these discussions was the very upsetting death of Robin Williams, the way the media handled reporting his suicide, and the recurring phrase "ask for help".

As I mentioned in my previous post, I recently had to cancel CBT sessions for various reasons; the main one being that I can't attend sessions on a weekly basis while I'm looking after my mum. I don't think I could've gone about it in any other way, because I was on the verge of being discharged for missing so many appointments (due to ill health) anyway. In part it is my doing (though I feel as if I had no choice) but I feel as if I'm left with no support for my mental health.

I'm still taking my Amitriptyline (50mg a night) for the Depression; although my pain specialist said I should be starting on 75mg per night. This is something I need to discuss with my GP soon. I don't know whether it is down to the pills, or because I haven't really got much time to think about how I'm feeling (I'm certainly trying to avoid thinking about it anyway), but I haven't had any really big, really scary dips in mood recently; where I get the massive suicidal urges (although I am still getting urges occasionally). I do still think about suicide on a daily basis,  but I guess this is in more of a passive way, as I have no plans and I feel sort of safe right now. I know I'm not fine in the slightest though. I don't feel like I've improved, I just feel like I'm teetering on the edge constantly, trying to just hold on not for my sake, but for my mum's.

I do need some sort of support, but I'm just not sure what to ask for or how I could access that support when I'm unable to travel by myself and no one is available to take me to appointments if they're anytime before 5pm on a weekday. Below, are the kind of things I'd like help with/like to achieve, the difficulties I have with access, need for flexibility with times etc, and the services I know of in this area. I'll try and list these things in a clear way, although I'm aware I probably don't sound clear at all in this post!

What I need support for:

  • To find a way to lessen these suicidal thoughts. They tend to be triggered when I think too much about the future, I convince myself I'll lose all my friends and don't deserve them anyway, I get too involved in political discussions or I spend too long reading about all the bad things happening in this world. It makes things feel hopeless. It makes me feel like I don't bring anything positive to anyone's life. I feel useless, guilty and then guilty again for thinking about suicide because I know there are consequences. I wouldn't want to hurt anyone, but I think I hurt people anyway, by talking about this.
  • To become more motivated & have more faith in myself. Yet again, I've failed to carry on with my CBT diploma. It's something that would be quite an achievement and yet I keep putting it aside for a day when I'm feeling well enough (physically and mentally) to concentrate for a decent amount of time. There've been times when I've wanted to write more blog posts, but I feel as if I'm a terrible writer and I won't explain myself properly. I keep stopping typing this particular post, and being tempted to delete the whole thing because it looks like a big mess of words to me. 
  • To be even more assertive. At some point, I'll have to talk to my GP again about the hypermobility, subluxations etc. It's been dismissed twice as part of the fibromyalgia, without proper assessment. I also need to make it clear that I need stronger pain medication. Finally, the catch 22 is that I need assertiveness to ask my GP for mental health support to help with (amongst all the other things) being more assertive!
  • To start travelling on my own to see friends & actually have a social life. The Fibromyalgia makes it very very difficult to travel for long anyway, and I don't feel safe on my own when I'm extremely dizzy, nauseous, weak etc, but a big reason why I don't travel alone is because it terrifies me. I get extremely self conscious and nervous just walking out my front door. If I need to get to the post box (just a few houses away on the same street) then I will wait until it's quiet, I won't look at the traffic, I won't look at anyone walking past me, I'll just try and distract myself by admiring peoples' gardens as I walk past. All the while, I'll be worried about the way I look, where I'm looking, whether I look nervous, whether I'm acting strangely, whether I walk strangely, just anything that could possibly draw attention to me, I'll worry about. And this is just a short walk to the post box of all places. 
          It's been a while since I've met up with friends (and that was with dad driving me there and back, in my own city). Being in busy areas, like the city centre, is exhausting. I worry that I'm not being chatty enough, I'm rambling too much and that I have to stop and rest too many times. But I like looking round shops, I like sitting and chatting in a coffee shop, and I love seeing my friends. I have wondered about asking them to come visit me, but it seems to much to ask of them when it requires so much travelling on their part. I need to be able to travel to see them, at least to the next town, so I'm not always expecting them to get to my town. There's nothing quite like chronic physical and mental illness to make you feel like a crap friend!
  • To access therapy to help with my wasp phobia. This one really has been put on the backburner because it just wasn't a priority, in comparison to the suicidal thoughts. It's only really something that's an actual problem in warmer weather, when the wasps are out. I'm really trying to tackle it on my own, but it is difficult. Maybe I need to write about this in a separate blog post? 
  • To be able to cope with being exposed to discussions about abortion, without being (as) triggered. This is something I go into more detail with, in a previous post entitled "Am I triggered?" The last therapist I saw, said these feelings were normal and fine though (even though I said it was a massive problem for me, and something I needed help with getting through).
  • To tackle the anxiety I have, related to my overactive bladder, and to stop my obsessive routine in the bathroom. If I'm not going anywhere, and I'm able to use the toilet whenever I need, I can pretty much 'go' as normal, although I will still get the bladder frequency. If I'm in a public toilet, or I'm about to travel anywhere, however, I have a strict routine when it comes to going to the toilet. This is quite an embarrassing thing to talk about, but I need to be honest. I have to 'go' 4 times. Each time, I have to wipe 10 times. If I'm about to travel anywhere (especially a longer journey) I then have to 'go' another 2 times, wiping 10 times each time again. To me, this sounds like a really unhealthy routine and I'm surprised I haven't damaged my bladder by now. I have tried so hard to break out of this ridiculous cycle, but when I try not to 'go' as much, or wipe as much, I spend the journey absolutely bursting for the loo and seriously worried that I won't get to a toilet in time. So I resort back to my routine. The problem is that sometimes, even when I've done this strict routine and feel that I'm ready to go out of the house, I still have a big urge to go to the toilet. I've been like this for a few years now and I hate it. 

Mental Health Services in my area:

  • Healthy Minds: A Cognitive Behavioural Therapy based Psychological Therapies service for people with common mental health problems e.g. depression, anxiety & stress. In order to access this service, you have to approach your GP first, who will give you a self referral card. You use the details on the card to contact Healthy Minds and arrange a phone assessment. The Psychological Wellbeing Practitioner who assessed you will then discuss with you, options for treatment or self help resources. If one to one therapy is appropriate, then you will either see a Psychological Wellbeing Practitioner (aka Low Intensity Therapist) or a High Intensity Therapist. In my case, I saw the Low Intensity Therapist for my first lot of CBT, on a fortnightly basis (6 sessions) and then the High Intensity Therapist for my second lot of CBT, on a weekly basis (intended to be 12 sessions, but I only completed about 6)
  • RAS team/Crisis and Home Treatment Team: This service is for people going through severe mental health crises. Either your GP or Mental Health Professional (e.g. psychotherapist) will refer you to the service if they feel you need it. I've been referred once because of the severe suicidal urges I was getting. You are supposed to be seen either on the same day you're referred, or within 48 hours of referral. Someone from the team will meet you for an assessment and then will decide if you need further care from them, if the care you're getting already is enough, or whether you need to be referred elsewhere. I'm not saying for a fact that this is the case across the country, but in my case, I had to get myself to the local psychiatric hospital (luckily dad was on afternoon shifts, so could get me there the next morning) and after assessment, the nurse decided that I didn't need further care from the crisis team, because I hadn't tried to harm myself yet. I was discharged back to my psychotherapist. After that, my therapist did ask me if I wanted to be re-referred to them, as I was no better, but I felt I'd only be wasting their time, as they couldn't actually see me unless I'd planned to harm myself, or actually attempted to/had harmed myself. I wasn't given the option of having someone meet me at home. 
  • Expert Patients Programme: This isn't strictly a mental health service, but it does involve mental health. It is a programme involving regular group sessions to help people with long term physical illnesses, to manage day to day living and wellbeing. 
  • Rethink: This mental health charity offers a Community Support Service in my area. It offers one to one support, workshops and group "coffee and chat" sessions in various places around the city. Services are available from 9-5 on weekdays. 

Problems with Accessing Services:

  • Times available: From what I've seen, the non emergency services only run from 9-5 on weekdays. There is no one available to provide transport for me between these times. I may be able to get the very occasional lift from a neighbour, but there is no way this would be possible on any sort of regular basis. 
  • Flexibility with location: I will continue to check and re-check, but as far as I've researched, if it isn't an emergency then home visits are simply not offered. You have to get yourself to the appointments and missing too many will mean discharge back to your GP. If I'm not able to get myself to these appointments, then does this mean I'm ineligible for any kind of mental health support beyond medication?
  • Types of services available: If I need a service that will take into consideration the impact that my physical health has had on my mental health, then my only option available is one that involves group sessions. This is simply not possible for me. My reaction to the surprise group induction at the Work Programme shows how well I cope with group sessions...
I think what is needed is a flexible mental health service, that someone can attend after 5pm. My GP surgery provides appointments from 8.30am-6.30pm on weekdays, with an extended hours service til 8pm on Thursdays. I wonder whether something like this could be implemented in mental healthcare? 

There also needs to be easier access to home visits for people with chronic physical illnesses and/or mental illnesses which severely impact being able to leave the home/on their own. 

Finally, it'd be really useful to have some sort of support to help me with travelling on my own, as this is clearly an issue that I need help with. 

With the severe cuts to mental health services, I don't see any of this even being considered anytime soon in this city, but it is definitely needed, not just by me, but by anyone who finds the support available just isn't flexible enough for their needs.

Friday 1 August 2014

More Mental Health Rambling

I cannot understand my moods at the moment. Well, I say "at the moment" but it's probably been for the past few months now.

I suppose this is part of the Depression, but I either seem to have a real lack of emotion (feeling numb, not sure how to respond when someone asks "how are you" because honestly? I really don't know. I just 'am'. That's it.) or I have days filled with a million different emotions, that I feel far too intensely. It won't take much to make me cry (seriously, just someone showing a little kindness will set me off!), I'll get really really angry at things (just hearing dad talk about work made me very angry. I just wanted to scream at him to shut the hell up!), the silliest jokes, comments etc will have me giggling like a teenager, I'll get really emotional over a movie (far too excited, far too upset etc). I just want to feel emotions 'normally' and feel like I have some sort of control over them.

Trigger Warning: Weight/Body image

One change I've made, is to stop taking the contraceptive pill Microgynon. When I started on it, I put on at least a stone. At the time, it was a good thing, but I hate it now. I  only stopped taking the pill about a month ago, and these moods have gone on for much longer, so I'm not sure if this is something I can blame on hormones. Besides, I've not been sexually active in over a year, I don't see it happening anytime soon, so what's the point in taking it at the moment? I'm having real self esteem issues, and I'm hating how much weight I've put on. Honestly, it's not much really, but I feel huge. I want to feel good about myself for something, but I just look at every part of me (personality as well as looks etc) and I'm not happy with what I see. I can't even just accept it. For someone who takes a lot of selfies, I sure do hate the way I look. Nothing wrong with faking a bit of self confidence though I guess.

My mum recently had a big ankle operation, and can't weight-bear for at least 4 weeks now. I'm doing what I can for her, when dad's at work, but I'm struggling A LOT. I pretty much start the morning in tears, but getting on with things. I feel constantly sick, dizzy, wobbly, uncoordinated (I'm covered in bruises because I keep walking/falling into things) and breathless. My pains are worse too, and the Naproxen is doing NOTHING. I wish the doctors would give me pain meds that are actually strong, and potentially work. I may be small, but small doses just aren't going to cut it.

I really wanted to vent earlier today, but I couldn't find the words. I'll try here. Basically, I feel like I can't look after my own health whilst I'm looking after mum. I have to push and push and push until I'm in so much pain/so exhausted/dizzy/breathless that I have no choice but to lie on the sofa. And then I only get a very short break before I have to do it all again. I've tried to explain it to mum, but have just ended up making her feel guilty (which is NOT what I intended in the slightest. I'm trying to emphasise that I CAN'T not I won't). I just wish there was someone else around who could be there for her when I'm not able to.

She had an appointment today, so my dad and I came with her. I'm going to sound ridiculously self absorbed here, but whenever she was in lots of pain, dizzy, exhausted, whatever, the nurses (and dad) were right there, seeing if she needed anything, asking how she was, trying to set her mind at ease etc. I of course wanted to do the same thing, but I was already in a real irritable, self pitying mood and honestly? I felt jealous. Not jealous of the pain she was in. I can't compare it to mine, but I know it gets very bad and causes nausea etc. I was jealous because people noticed, they cared, she wasn't invisible! Maybe it was just because this appointment was for her, not me, but I had a few times during that appointment, where I was in a lot of pain (I'm sure you could've seen it on my face) and I was stumbling about with dizziness. I also had that weird experience, of feeling like I'm not really there (dissociation?) I must've looked like I was struggling, but no one noticed. It made me realise just how invisible, my invisible illness can be sometimes.

I wonder how much pain my doctors realise I'm in, just how constant these pains are (they're not just mild aches), how much the other symptoms affect me, how much I struggle to do things and how hard I try to do them. In public, it feels socially unacceptable to show you're in pain, so I grit my teeth and bottle it up (I might end up crying out a bit, not loudly, when I have no other choice). Maybe I should just make it more obvious? But then again, I don't like causing a scene, I don't like being fussed over. I just want people (medical professionals, not the general public) to actually notice I'm in pain, without me having to explain it (with the fear of being doubted because I'm not yelling etc) and to treat me as someone who won't just be fobbed off with low dose meds.

This sounds so terrible and probably is one of those "be careful what you wish for!" things, but sometimes I wish something a bit more dramatic would happen, just so the doctors will realise this isn't just a few mild aches and pains, with a teensy bit of dizziness. If that's what it was, I'd be looking for a job/in a job by now.

I've cancelled my CBT sessions, for various reasons. I can't get transport there, I need to be in the house constantly, for mum, and I really don't think these sessions are helping. I mean, sure, there are some things I can try (mindfulness, going for a walk, monitoring my moods, trying to do nice things for myself), which I can just about achieve on better days. My lack of motivation seriously affects my ability to do these things to help myself though, even on better days. If I do (some of) these things, I may get a slight temporary increase in mood, but that's it. So I guess it's my motivation that needs tackling, but how? It takes motivation to do anything, right down to 'basic' things like getting out of bed, getting dressed, eating (even a really simple meal). It may make me sound lazy, but it's not laziness. On better days, I do far too much then end up feeling depressed again, because I've made myself flare up yet again. I get so frustrated with my own body.

I guess this could all be summed up as this; I am very fed up.

Sunday 27 July 2014

A Small Victory, for now.

I'm finally in the Support Group for ESA.

I'm quite lucky, in that it didn't take as long as it could've to happen. It was a pleasant surprise too! So here's my 'journey' with ESA so far:

April 2013, on the advice of the Citizen's Advice Bureau, I applied for Employment and Support Allowance. I had read others' experiences with applying and being assessed for this, so knew it would be difficult. I had no other choice though. I simply wasn't well enough to work, and had no other income to support myself.

The first form to fill in, is the ESA1. In it, you give some details about your illness/disability, about your living situation and your finances. There's also space to include partner's information, if you live with them. It'd be worth double checking on the main site, in case the application process has changed, but this is usually the form you would fill in and send back. Towards the end of that month, I received my decision letter to say I was entitled to ESA and would receive the assessment rate. Along with this letter, came my ESA50 (Limited Capability for Work Questionnaire) to fill in and send off to Atos. This was the company contracted, by the government, to assess most ESA claimants. Of course now they have walked away from the contract; only carrying out a few assessments for new claimants. Once I know more about who will be taking on the contract next etc, I'm sure I'll be blogging about it.

My original date of assessment was 5th June. It was then rearranged to 8th July (If I remember correctly, they sent a letter in good time), then I turned up to find they'd cancelled and rearranged to 31st July, without giving me any notice! When I turned up on 31st July, the security guard asked me a few questions; including whether I'd be able to get down the stairs in an emergency (the assessment rooms were on the 1st floor and there was a lift). I said that physically, it was possible, but I get very weak and painful legs, so I wouldn't be safe. He then told me to wait in a room on the ground floor. One of the assessors met me about 10 minutes later, to explain that I could not have my assessment that day because of the health and safety risk with the stairs. I'm sure I'd mentioned problems with stairs in my ESA50, so they should really have considered that! I also didn't expect assessment rooms to be anywhere apart from the ground floor. A huge amount of ESA claimants are bound to have mobility problems after all. So my assessment was rearranged (again) for August time, in a centre about an hour away. It'd be difficult to get there, even with my father driving, but it had to be done!

The second paragraph in this post explains briefly, how the assessment went. I've mentioned this before, but I felt the nurse was quite unprofessional in her manner. She laughed, when I mentioned my bladder problems. She also said she would do an eye test to check I "wasn't telling porkies" when I described my vision problems. I really should've complained, but the whole ordeal was so exhausting, I just wanted to get out of that place. I received the decision letter not too long after my assessment. I had been awarded 15 points, and placed in the Work Related Activity Group for 6 months. I was very relieved, although I was unsure as to what the WRAG entailed exactly. My first Work Focused Interview involved talking through my symptoms, limitations etc, and I was also placed onto the Work Programme because, due to the 6 month 'prognosis', my condition was regarded as "short term" (ha!)

My first Work Programme appointment, was a blurry horrible mess. If I can find a post that describes it, then I'll edit and put a link here. My brain is pretty frazzled from all this typing, but I did want to keep all my ESA experiences in one place. Who knows? It might come in handy for anyone who has been thinking about applying. I'd certainly like this blog to be helpful for others. It basically involved a surprise group induction, me going into complete panic mode, worrying all the advisers and being swiftly taken out of said group induction, then some time I barely remember of meeting my personal adviser and being coerced into signing some paperwork I didn't have the concentration to read properly. The adviser was optimistic that I'd be well enough for work by May 2014, as she'd had Fibromyalgia and she'd woken up one day and it had miraculously disappeared! Hmm, forgive me for not believing that...

From that appointment, and from what they said they would require of me, I felt that maybe the WRAG wasn't the right group for me? I thought there'd be more specialist help, which kept chronic illness and disability in mind. It seemed there was nothing of the sort. The kind of help available were things such as CV support, Cover Letter support, training, interview practice and group sessions. It all appeared to be things that would require me to be quite well and able to concentrate. I decided to appeal.

I just about got my appeal sent within the one month deadline (you have a month from the date of your decision letter, to appeal, although there is now Mandatory Reconsideration, so the rules may be different now). It took a bit of confusion with what to say, what to send etc, and I ended up sending a supporting letter from my GP, the letter from my Rheumatologist and my Psychotherapist and supporting letters from my parents. Eventually, the appeal went to tribunal. You can read about my tribunal experience here

Unfortunately, my appeal failed; although my points were increased from 15 to 30 (my mental health was actually taken into consideration here!). So, back to the WRAG appointments. I did miss a few, because I was flaring up so easily and frequently. Luckily, my adviser was fairly understanding of that. The next problem arose when my dad's shift pattern changed at work. He was now unable to take me to my appointments. I rang my adviser and tried to negotiate phone appointments, and I explained how we could make it work. I also explained how I was awarded points for descriptors which clearly state I'm unable to travel alone. I got a "No, we don't do that" in return. I asked about speaking to her manager, but was told the manager had said "No" as well. There wasn't any explanation at all. I decided to take the matter further, so I contacted my disability representative, an organisation which advises on the Equality Act, the Mental Health charity, Mind and my MP.

I was given conflicting advice as to what to do. One place said to ask for a statement of reasons as to why the phone appointments were refused, another offered to provide me with an advocate (well, I wouldn't know this person, so what good could it do?), another said to let them know that my illness had worsened, so I could be reassessed (that was true, but I couldn't see myself getting through another WCA) and my MP said he'd speak to the Jobcentre, DWP and the Work Programme provider. I kept everyone updated on my situation and had pretty much convinced myself that nothing would happen, apart from me getting sanctioned for not participating in Work Related Activity (even though I was completely unable to even get to the centre!)

Then, I had a surprising voicemail. The manager of the Work Programme Provider office, left a message; acknowledging my complaint to my MP and his subsequent letter to themselves. I couldn't quite believe what I was hearing when she said that they'd checked my records, I'd been reassessed and was now in the Support Group! She also said my adviser would be in touch to explain what will happen next. I listened to the voicemail at least 3 times to be sure. I decided to keep very quiet about this (hence the lack of blogging on the subject) until the confirmation letter was in my hands. A few days later it was (with a prognosis of 1 year this time), along with the new ESA rate. This has been quite a relief, as now myself and my parents are able to afford to have a cleaner come once a week, for an hour or so. None of us are in a fit state to do much beyond washing dishes and doing laundry (I can barely even do these on my better days now). A lot needed cleaning and help has been needed for a long time.

I know it is extremely stressful, but if you are (wrongly) found fit for work, or you are put in the WRAG when you are not well enough for it, then definitely appeal. It is also a good idea to seek help from your local Citizen's Advice Bureau, as well as any organisations for your disability/ies, any disability advocacy places (especially ones which provide representation at tribunals) and your MP. Bug the heck out of them, it's worth it!

Also, gather evidence. The more, the better. It has to be good quality evidence as well, that can be applied to the descriptors your condition fits. If you find that you fail your appeal, and are kept in the WRAG, then make sure your adviser knows how your conditions limit the sort of Work Related Activity you could do. They may try and push you to do certain activities, but they are not allowed to force you. Bring in evidence for them if needs be. No matter what they say, they do have to provide phone appointments, if it'd be suitable for your condition. If there's still no luck, then contact your MP again. From my experiences, I've found that your MP is usually the one to nudge the WRAG/Work Programme Adviser into actually doing something for you.

I do hope this post has been useful. Please comment or tweet me @Openyoureyes89 if you have any other questions, if there's anything I've explained incorrectly or anything I need to add.