Thursday, 19 November 2015

Exhausted

After months of trying to contact our landlord to get the tiles sorted in our bathroom (they were cracked and falling off), he finally sent someone round! I knew it'd cause some disruption to my sleep pattern, but I didn't expect it to be quite so bad (silly me).

Over the past week or so, I've had to get up and dressed before 8.30am each day. I've not been getting to sleep until 5am on average, so have been struggling so much on so little sleep. I decided I'd get up and dressed, take my meds early and maybe try to have breakfast before going back to sleep for a few more hours. It's been difficult, because of the hammering, drilling etc noises in the bathroom, and my anxiety about having a stranger in the house. I've been drifting in and out of sleep, and have felt even more exhausted than usual. I feel like I've lost so many days, because I've just not had the energy to do much at all. Even conversation has been too much for me, as I've not been able to process well what is being said to me. I doubt I've made much sense when I've replied either.

Thankfully today has (hopefully!) been the last day of this disruption, so I'm hoping I'll be able to catch up on sleep soon. I never feel rested after sleeping (the joys of Fibromyalgia!) but having my, already terrible, sleeping pattern being disrupted, puts me in a whole other level of exhaustion.

Just when you think a symptom (such as fatigue) can't get any worse, it always manages to surprise you!

Monday, 2 November 2015

Yay!

This is a very short post, to point you towards a blog post I recently wrote for a website. "The Secret Illness" shares people's experiences of Obsessive Compulsive Disorder. These submissions really show the various forms OCD can take, and how complicated it can be. This is the first time I've been asked to write something for a website, so I'm very excited about it!

Here you go: http://thesecretillness.com/2015/11/02/amy-25-west-midlands-uk/

Thursday, 22 October 2015

Referral and Mental Health Updates

Not a huge amount has happened recently. If I'm honest, I've felt a bit ignored by doctors, therapists etc.

In a way, I've preferred not having therapy at the moment. For many reasons I suppose. Sometimes it's because I've felt able to try and do things on my own. I felt as if things were do-able. Other times, I've not felt ready to go back into therapy. I suppose I've wanted to be left alone (which is strange; considering how hard I've tried to get more support!)

Maybe I worry too much will be expected of me? I'm trying to do things at my own pace, and accept that it's going to take a while. Even on days where I'm feeling more able to go out of the house on my own (for example), my physical health vastly limits what I can do. It feels like a balancing act.

(TW meds & self harm) I'm now on 150mg Sertraline a day, and it seems to be the right level for me right now. I'm having less crises, and even have days where I don't feel strongly suicidal! What I am doing more of though is self harming. It took me a while to realise that it is a form of self harm. I don't want to go into details about it. I tend to do it for different reasons, and I think that it has become a compulsion as well. I've been trying to find distractions, even buying one of those fidget toys on Amazon, but once I start, it is extremely difficult to stop.

It's been 3 months since I was sent a referral letter for physiotherapy. My original post about the Orthopaedic assessment is here . The letter told me to ring a number, and give my name, hospital number, and any dates I'd be unavailable for an appointment. So I rang. The automated message told me to press 1 to book an appointment. I did so, and was told to leave a message with the details they required.

I finally got up the courage to ring the hospital to ask why I hadn't heard anything yet. It turned out, that they hadn't got the message, and I was supposed to wait to speak to a receptionist to book the appointment! I wish this had been stated more clearly in the letter. I also wish they'd sort the damn phone system out! I find it difficult enough to use phones (because brain fog & anxiety). I'd been discharged because they hadn't heard anything from me. I was told to get in touch with my GP, and get re-referred. I said thank you, and hung up.

After the phone call, of course I became panicky. I've been needing physiotherapy for so long, and it seemed to be so hard to obtain an appointment! Mum rang the GP surgery for me, and passed the phone over when she got through to my GP's secretary. I was still panicky and confused, but I had to take the call. Thankfully, the secretary was lovely! I explained my situation, worried that I wouldn't make any sense, but the secretary understood & got it sorted for me. She warned it would be a long waiting list though.

I was expecting another few months wait, but I had a hospital letter come today, with an appointment for the start of November! There must've been a cancellation. The physio place is close to my house, so I should be ok getting there. I've been to that place for blood tests too, so know my way around.

My next post will probably be about my first physiotherapy session. In the meantime, thank you for reading :)

Thursday, 3 September 2015

Latest Psychiatrist appointment

I had my follow up psychiatrist appointment on Tuesday, and it went a lot better than expected! I'd used all the relaxing techniques I could think of & kept telling myself that if it was as bad as the last time, I didn't need to go back.

I usually find the place quite triggering; especially when my Depression's bad. It's probably because (most of) the times I've been there, I've felt as if the staff weren't taking me seriously. I'd had psych assessments there with the Crisis Team a couple of times, & it'd only made me feel worse. No matter what I said, how honest I was etc, the response was always along the lines of "We can't help you. Keep taking your meds, keep doing CBT". It takes a lot for me to ask for immediate help, and you can guarantee I've tried everything else (in terms of self help, self care etc) so to get that response makes everything feel pointless.

If you read my post I'm trying. I'm really trying you'll know that my first psychiatrist appointment wasn't exactly brilliant. I was expecting to see the same person this time, and I suppose I presumed he wouldn't listen this time either. My main aim was to get my words out and at least talk about how the Sertraline was working for me.

My neighbour was giving me a lift to my appointment, but she had to take me there 30 minutes early because of an appointment she had to get to at the same time. This sudden change of plans, although small, made me so panicky & even angry. I managed to pretend everything was fine. I hated myself for the way I'd reacted though. When going anywhere, I have to have a specific plan in my head as to what I'll do, in what order etc. It's supposed to be so I have as little stress as possible, but a change to a plan can have the opposite effect. The psychiatrist's waiting room is quite small, & the chairs face each other (which is really anxiety-inducing when it's busy!) but thankfully the main waiting area in reception is a lot more relaxed; with chairs quite far apart and a toilet that was easy to get to. I worked out the plan that I would wait in reception for 15 mins, I would then give myself 5 mins to use the toilet, and then I could slowly walk round to the psychiatrist waiting area and be there just in time. That way, (if he wasn't running late) it would only be a very short wait. I wore a necklace my best friend gave me, which I used as a sort of "lucky charm". I also brought a bottle of water & my anti-sickness tablets (I tend to get very nauseous when I'm nervous). It turned out that the psychiatrist's waiting room was very quiet, and there was no one in the seats opposite mine. I only had to wait a couple of minutes before I was seen.

The psychiatrist who saw me was a different one to last time (to my relief!). She was friendly, welcoming, and patient with me. It was clear that she had read my notes too, so I didn't feel as if I had to tell her my life story. She asked a few questions about how I'd been finding the medication, what therapy I'd been referred for, how my mental health had been etc. She gave me time to open up about other things (including the self harm) too.

I managed to say a lot more this time! I spoke about how the Sertraline took a bit of the edge off the anxiety and suicidal thoughts, but I felt that the effects wore off very quickly. I also spoke about how I have Diazepam to take as needed. She was happy for me to stay on both meds, and decided to up my Sertraline dose from 100mg to 150mg.

I then spoke about how I'd been finding CBT. It had helped very slightly with some things, but I'd been through my third round and didn't think it fit with my problems. The main thing was that CBT is very much focused on the present, and the past is barely touched upon. The different types of Anxiety I have, the OCD, the paranoia, and I suppose the Depression too tend to go right back to when I was at school. Two major triggering events were the bullying I experienced, and the traumatic abortion that I had, and I needed a type of therapy that would address these things so maybe I could get to a point where I can deal with them better.

The psychiatrist agreed that CBT wasn't really working for me, and she asked if I'd had any other form of therapy. I told her how I'd been told that (with my diagnoses), CBT was the only therapy available to me on the NHS. My therapist would be training in EMDR, so that was something I might be able to have in the future, but I'd not been offered anything else. She seemed surprised about this, and said that she believed I should have Psychodynamic therapy.

We spoke about the self harm in depth, as well as the OCD. She asked me some questions about rituals, and agreed with the diagnosis that I'd been given.

After discussing everything, the plan was that I'd be prescribed 150mg Sertraline and I'd keep taking the Diazepam as needed. She told me that she would write a letter to my GP, and that she'd also get in contact with my therapist to see about other types of therapy (preferably Psychodynamic). She also wants to see me in 3 months time, to see how I'm getting on.

Overall, this was a really good appointment! This psychiatrist made me feel at ease. She was understanding, compassionate, non-judgmental, and I really felt listened to. I have no idea how long the wait will be for more therapy, but to know that I may not be completely limited to CBT is a great feeling!

Monday, 10 August 2015

No Reason.

This is a bit of a venting post I'm afraid.

I've been having some rough days recently. Physical health-wise, but it's my mental health that I think I've struggled with most.

I hate how unpredictable my moods are sometimes. The times when I feel numb and empty aren't exactly wonderful, but they're a little easier to cope with than this. I'm not sure how clear I am when explaining it all. I'm trying to understand it myself!

When I first realised I should see the GP about my mental health, I thought that I *might* have Depression, but I wasn't sure if I had enough days where I was struggling enough to need treatment of any kind. (Truth was, I probably should've seen the GP about it years ago!). If you've been following my blog for a while, then you'll know that I was referred for CBT (low intensity for first round, high intensity for second and third) & was diagnosed with Clinical Depression, Generalised Anxiety Disorder, & (most recently) Obsessive Compulsive Disorder. (I'm not sure if I'm actually diagnosed with Agoraphobia &/or Social Anxiety Disorder as well, but my therapist has mentioned them on occasion?).

Even though I was going through therapy, I found my symptoms were getting worse, & were a lot more frequent (and I definitely place some blame on my experiences with a Work Capability Assessment, & being on the Work Programme).

Through time, I think I've noticed more things too; like the paranoia I get, & how terrified I get if I have even the slightest inkling that I may be losing friends. I am constantly needing reassurance! I actually have nightmares about losing friends. I've always been really insecure when it comes to friendship, but I think it is worse nowadays. I'd try to explain here how I think a lot of my insecurity stems from my school years, but I'm digressing enough & should probably save that for another post!

I'm not sure how long it's been like this, but I've noticed a shift from having all these feelings/moods/symptoms/whatever you want to call them pretty consistently every single day, to having days where I will feel lots of emotions (including all of this) either all at once, or changing from one mood to another very extremely, very suddenly, & very quickly. Other days, I will feel  either completely or mostly numb. I'll feel very empty too & "How are you?" will seem like the hardest question in the world. My last therapist wanted me to try and "catch" my moods before they got too extreme, so I could note them down in thought records. The aim was to try and establish some sort of balance. I am trying to do these thought records, but I'm finding it such a struggle, & I often leave it too late, so can't properly describe how I felt at the time.

Today has been a day where I have felt emotions very very intensely, & my moods have changed very quickly. There's been no particular reason for them either. I went from very chatty, to fidgety, to very anxious (then had a panic attack). I calmed down a while later, but had horrible feelings of dread & felt on the verge of a panic attack yet again. I then found I was a little bit hyper, I watched some TV shows & laughed far too much at the funny scenes, felt full of love at the romantic ones, & really upset at any sad scenes. Finally tonight I had an enormous drop in mood & feel more depressed now than I have felt in a long time. Nothing bad has happened though. I've not had any news, I've not had any arguments, I've not lost any friends (as far as I'm aware anyway!) I've not needed to be anywhere today. I've not had to do anything urgently today. Which just shows that there's not always a particular reason for someone to struggle with their mental health more than usual for a certain amount of time. Sometimes it just happens, & it sucks!

I'm trying to reach out to friends right now. Part of me wants all the support, cuddles, attention etc I can get, and part of me feels I can't cope with conversation. I feel torn by myself (if that makes any sense) & I think this is why I'm venting via this blog right now.


Friday, 24 July 2015

A Break

I've now come to the end of my therapy sessions (If I remember correctly, my last one was 6th July?) & have been meaning to write about this for a little while. I've not really had the motivation to though, and have mainly been pretty quiet.

I feel like this was the right time for this round of CBT to end; as my therapist had done what she can and I guess I'd made enough progress for that point in time. It was more the cognitive side of things, than the behavioural though. She mentioned that, as well as CBT, she'd been using ACT on me (Acceptance & Commitment Therapy). I did feel like this round of therapy had been very different to the previous two (not just because I preferred this therapist), so it didn't surprise me to hear that it hadn't just been CBT that we were doing.

I found that this therapist was very patient with me, but also encouraged/guided me to try out the different CBT etc tools. There were times when I found it difficult to put across how I'd been feeling, why I found some tasks difficult (e.g. monitoring moods, because my moods change so suddenly). It took her explaining, for me to realise that I had in fact made progress though. It was a relief to know that therapy had actually made some difference, no matter how small!

The progress that I've noticed are that I'm not getting suicidal urges as frequently, even though I have suicidal thoughts nearly every day. I've noticed this since being on the Sertraline, but I think the support from my therapist has helped as well. She never pressured me to do anything. She didn't dictate tasks to me; instead, she suggested things & we discussed together. I found that we had a lot in common too, so most of the time, I felt she understood me.

Another bit of progress I've noticed, is that (at least sometimes!) I don't feel quite as guilty about having time to myself. I still have a lot of times where I do feel guilty, & also feel very responsible if I don't think I've been there for friends enough. I guess this ties into my self-loathing. I'm forever thinking that I'm this terrible person, who does everything for self gain, is self-obsessed, & is tricking everyone into believing that I'm nice. It's as if I'm scared that one day, everyone will see the "real" me. I even have very vivid nightmares about it. I get very paranoid about this too, & find that I jump to this conclusion if no one has replied to my messages. I ask for reassurance a lot, & also hate myself for needing it, as I think it makes me very clingy & I'll lose my friends if I carry on.

I still have so far to go with the cognitive side of CBT, it's just not possible to tackle it all in one round! And I've barely even touched the surface of the behavioural side, who knows how long that will take!

Back to the therapy session. My therapist gave me a blueprint to fill in with her, and also discussed a management plan with me. I liked how she gave me the time to go through how I think therapy had gone, what I'd learnt, what progress I think I'd made, what concerns I may have, and what to do if I find I relapse. It gave me a bit of structure, which was what I needed.

I also mentioned the trauma I went through, when I had the abortion. I still find I get triggered even by the mention of it, & I really need to get to a point where I can tolerate hearing/seeing mentions & conversations about it. I'd like to get to a point where I can talk about it more. Maybe other people could relate to how I felt? Anyway, the therapist told me that she was training in EMDR and that she could add this to my management plan, for when I'm ready to face it. I think it won't be for a while yet, but it's good to know that, at least for one thing, I can get help other than generic CBT.

Finally, she told me that she'd like me to have at least a 4 month break from therapy, and then (when I'm ready) to get referred to her again, so that we could start on the behavioural side of CBT. She also reassured me that if I felt I needed support sooner, I could get referred whenever I needed to. This was reassuring, because I always find endings very hard, especially if the person I've seen has been helpful and supportive. Although right now I'm ok with stopping therapy for a bit, that's mainly because I can't see how it could help much more at the moment. It doesn't necessarily mean I'm too well to need it. I wish I could have some ongoing support.I still have a psychiatrist appointment coming up (the last one had to be rearranged, due to a family emergency), but this will purely be to talk about medication.

I think I am (sort of) safe at the moment, but I know that I react to things quickly, and extremely. At some point soon, I could be getting a letter to reapply for ESA, & the thought of this is really terrifying to me; especially as we are now under a Conservative government (who would love nothing more than to take away the vital support than disabled people need). I worry that mentioning any sort of progress (no matter how insignificant in terms of actually functioning better) will score me 0 points in the work capability assessment.

I should be pleased about any progress I make, but instead I end up worried that this progress will be over-exaggerated & used against me to take away the support I need. If this happens, I know that I won't be safe. I am not well enough to work. If I was, I'd be looking by now! As blunt as this sounds (and I don't think my parents feel this way about me), I feel as if I will just be an extra cost to my parents if I lose my financial support. It helps me pay bills, & ensures that I can at least begin to reimburse my dad for the days he has to take off to care for my mum and I. Without that support, I worry that we won't be able to pay our bills. I dread to think what could happen.

I wish I could end this post on a more positive note, but this is the stark reality.

Friday, 26 June 2015

Past Experiences of Working Whilst Sick & Disabled

I became ill with Fibromyalgia in my 2nd year of university. My first blog post gives a bit of background as to when, how it started, experiences with doctors etc

As I got more ill, I struggled more with getting to lectures, but still wanted to take on work. I didn't know anything about chronic illnesses & was hoping that this would be a short term thing that could be fixed, so I could get on with my life. I think I thought I could push through it too.

After a lot of searching, I got a job at a jewellery store. I was undiagnosed at the time, but doctors were considering hyperthyroidism, as I had high TSH. My T4 was normal however, so this result wasn't seen as significant enough.  I didn't declare my illness at first because I wasn't diagnosed. I thought that I wouldn't be taken seriously, as I would only be able to say "I've had X symptoms" rather than "I've been diagnosed with X". I had to call in sick a few times, and tried to explain what was going on but found that my illnesses were ignored. I was treated as if I was skiving off work. The truth was that every time I went into work, I was in considerable amounts of pain, I was extremely dizzy, nauseous & exhausted (even before I started my shift!). I tried my absolute hardest to push down all these symptoms though, because I worried about losing my job. I didn't know my rights when it came to work. I didn't know a thing about disability discrimination either.
       I was on a 2 month probation with this job. Because I was ill so often, I was frequently threatened with the sack. The attitude I received from my boss (and some colleagues) was horrible. I didn't feel I could confide in anyone & it really felt as if they were trying to push me out. I quit in the end. It wasn't worth risking my health for; especially as I was struggling with my university course as well.

After graduating, I got a temporary agency job with a debt management company (never again would I work for a company like that). At the time, I had been diagnosed with M.E. I didn't declare my diagnosis until the first time I had to phone in sick. The way it worked with that company was, even if you'd only had the one day off, you had to meet with a person from the agency at a certain time to explain why you'd been off. I explained about my illness & recent diagnosis, but can't remember it being considered much. I didn't know anything about reasonable adjustments, & wasn't sure what sorts of adjustments would actually help my illnesses/disabilities. The place had decent chairs and lifts (so equipment wasn't a problem as such). It was the pain, fatigue, dizziness & nausea that affected my work. Having an overactive bladder (although not diagnosed at that time) also made meetings very difficult to concentrate in. In the end, I got the sack for not hitting targets (the productivity targets were ridiculous, & increased every week. After being in that particular department for one month, I was expected to be at the same level as someone who'd worked there for years!).

The next job was one I enjoyed the most. I worked through an agency, as an oncology research assistant. I realised that I was struggling, but I wanted this job so much that I forced myself to carry on anyway. I found some members of staff understanding, others not so much. My manager encouraged me to take days off when she noticed I was feeling more ill, but I felt that she didn't have faith in me as an employee & I knew that she wouldn't want to extend my temporary contract. I wish I could've done better, but my illness was getting worse & I just wasn't able to be at my best.

My last job was a short temporary one (direct with employer this time though!). I found I was treated as part of the team, but my illnesses were again mostly forgotten/ignored, until they noticed that my productivity had gone down. I did explain what was going on, and they listened a bit more then (even asking if I needed reasonable adjustments) but again, I didn't know what to ask for.

I wish there were more information/advice/guides about reasonable adjustments. It seems that people are expected to know what to ask for (when it comes to disability accommodations in the workplace) & they have to self advocate. Dealing with long term illnesses and disabilities (treatment, management, appointments etc) is difficult enough, & takes up enough energy, so can you imagine how exhausting/daunting having to self advocate is, on top of all that?!

More workplaces need to be understanding, & knowledgeable about disability & the kinds of reasonable adjustments that could be needed. It should be made easier to ask for adjustments. There needs to be clearer information available, & it needs to feel like a collaboration, not a confrontation.

Wednesday, 17 June 2015

Finally!

If you've been following my blog for a while, you've probably seen me mention my hypermobility & problems with my left knee either dislocating or subluxating. I've had this for a while and doctors have either brushed it off, or given me simple strengthening exercises to do that have proven pretty useless.

I'd learnt about Ehlers Danlos Syndrome (hypermobility type) from friends with it, and they agreed I probably have it too. The more I read up on the symptoms, assessed (and reassessed, and re-re-assessed!) myself with the Beighton score, the more I thought I really could have it. I spoke to doctors about it, but they held misconceptions about the condition & believed that it always had to run in families & always had to be very severe. My hypermobility wasn't considered *enough* to warrant diagnosis, & the other symptoms were attributed to my Fibromyalgia (regardless of the fact that I told them I'd had this before the fibro symptoms started).

Last month (after some dislocations that were a lot harder to put back in) I decided to speak to the GP again about my knee, & tell her that it had been getting worse. She referred me to the Orthopaedic Clinical Assessment Service at a local hospital. I had my appointment yesterday (15th) & saw a Specialist Physiotherapist. As I knew I'd be examined too, I made sure that I mentioned problems with my other joints that I've had for years, and also things in the past that I thought could be connected (My jaw used to dislocate when I was a young teen. I was referred to a Maxillofacial doctor who sent me for an Xray, but my jaw was back in place at the time so nothing was found! I also have very flexible ankles that like to give way suddenly, and I used to sprain my ankles and wrists very easily).

After a few questions (medical history, family history, medication, previous investigations or physio etc) the physiotherapist asked to examine me. I was embarrassed about getting my (extremely pale, veiny, bruised, scarred, stretch marked) legs out, but of course he needed to see for himself what was going on. He got me to stand up and push my knees back as far as they can comfortably go. He also asked me to lie on the bed, bend and stretch out each leg so he could examine my joints, muscle strength etc (so many examinations, I couldn't explain them fully!) I'd mentioned my hips being very loose too, so he examined them.

As he moved my legs about to check for problems, my knees and hips let out so many very loud cracks! A particularly impressive one from my right hip had him jumping a mile! I couldn't help but laugh when I saw his face. He could actually feel my hips and knees popping out then going back in. Constantly clicking joints & extra bendiness is my "normal" though, I suppose. Until I heard about hypermobility, I just assumed everyone was like this!

The appointment went much better than I expected! I went in, just expecting to be told my knee was a bit weak or something, but I barely had to explain anything as, when I was examined, the Physio suddenly piped up "Has your GP ever diagnosed you with Hypermobility Syndrome?".

I explained about my problems with getting doctors to believe me, & how I'd tried the Beighton test a few times. He got me to do that test again, and nodded along as I showed him. The final part of that test is to see if your palms touch the floor when you stand up and try to touch your toes. Thankfully my back wasn't too bad that day, so I was able to attempt that. With legs together, I could get my fingertips on the floor but no further. He asked me to put my legs slightly apart and try again. That time, my palms did touch the floor (just). As my legs were apart though, I'm not sure if that counts. He didn't say what my score was, but I'm guessing it must've been high.

Finally, he asked me to walk for a few steps (without my stick), so he could see if there were any problems with my gait etc. Thankfully that was the last task, as I was dizzy, exhausted, overheated, in lots of pain, and basically needed to sit down!

He concluded that I did have Hypermobility Syndrome (he didn't say EDS hypermobility type specifically but I think this is considered the same thing?) my left kneecap dislocates, he noticed my hips were quite loose & that I tend to walk with my toes facing inwards; which is what could be causing my knee problems. He also said that surgery on my knee was an option, but he wouldn't recommend it as, because I was hypermobile, it could make things worse. He is referring me for a long programme of Physiotherapy & if needed afterwards, I could be re-referred to him & may need to have special insoles to help with my walking.

So I guess I'm an "official" Bendy now! It really felt so good to be believed & to actually have symptoms show, rather than everything being based on what I say! The physio is writing a letter to my GP with the diagnosis, his findings etc. I'm sure I'll be blogging about my experiences with this physiotherapy programme too.

I do want to speak to my GP again pretty soon, as I've had some horrible pain flare ups recently & today I was doubled over. I should've rang, but surgery was closed by the time I realised I needed to ask for pain relief. I'm not even sure what meds could be suggested! Management is important, but I really do need to have something to take as needed (at least!) for the severe pain. I can't see how I could effectively manage my symptoms when the pain restricts me so much & causes me to flare up so easily. Maybe this latest diagnosis will help her to see this?

I should add some sort of About Me page to this blog, but here are my diagnoses for now:

- Fibromyalgia
- Hypermobility Syndrome (EDS?)
- Irritable Bowel Syndrome
- Overactive Bladder Syndrome
- Clinical Depression
- Generalised Anxiety Disorder
- Obsessive Compulsive Disorder
- Agoraphobia
- Social Anxiety

Phew! I think that's enough for me to cope with. I don't want anything else, thanks!

Friday, 22 May 2015

Progress, hopefully? (Updated)

Progress. I use that word tentatively. Don't get me wrong, of course I'm pleased if I have made any progress! I'm just still not sure if I have, or if I'm just telling the therapist what she wants to hear/complying with therapy tasks. My head's a mess I swear. I've spent so long trying to figure myself out. Why I think the way I do, why I behave the way I do, who I am even. Searching for answers and overthinking every single damn thing.

I'd been trying to do the therapy homework, and use the tools I'd been given/coping techniques etc (thought record, worry tree, relaxation/breathing exercises etc). I felt as if I was failing at everything & it was all my own fault for not trying enough, not being good enough. I never feel as if I'm *anything* enough (if that makes sense?). I really wasn't looking forward to this week's therapy session. I wasn't sure what to tell my therapist, or even discuss with her; apart from the fact that I'd been feeling really really down, I'd self harmed in order to cope, and I felt completely useless; as if I wasn't even worth bothering with.

I was supposed to have a psychiatrist appointment recently, but when I got to the reception desk, I was told that all his appointments had been cancelled & I should've had a letter. I thanked them and left quickly (even though I wanted to ask why they hadn't phoned, like the last time) because the waiting area was busy & I was very nervous. My neighbour had given me a lift, & I'd declined her offer to walk me in, because I wanted to challenge my social anxiety. The letter came later on that day, and now I have to wait until July!

Therapy went a little better than expected. I felt as if all I was doing was moaning to the therapist about things that pissed me off. We discussed things & analysed things together. One particular topic was how I use social media (twitter, mainly). I immerse myself in lots of different topics, I try to keep in touch and updated with friends, I try to be there for as many people as possible & rarely give myself a break (actually, I probably NEVER give myself a proper break). I've been trying to have space from Twitter because I know it can overwhelm me easily. I find it so so hard to stay away from it though. My therapist has been trying to get me to "catch" myself, when I notice something triggering my moods (starting to panic/feel suicidal/dissociating etc) & then either distract myself with something, or do a thought record so that I can monitor my moods & balance my thoughts. I've found it very hard to do, because I seem to have such extreme mood swings & my moods change & worsen so quickly, it's hard to keep up & catch them before they get too bad! I've really been trying though.

She noticed that I've developed checking behaviour when it comes to things like Twitter though. I'll try to "catch" myself when I find being on there getting overwhelming, so I'll leave a message then shut the window down. I'll manage maybe 5 minutes, before I either open the window up again, or go to the app on my phone. I check my notifications, my tweets, messages, people's replies to me over and over again. I have to make sure that what I've said has made sense, I've worded it properly (not in the grammatical sense, but that I've not said the "wrong" thing so that it could be misinterpreted?), I've remembered to reply to people, I've not misinterpreted what they've said (if I get a blunt reply, I instantly think that person hates me). Even if I manage to stop myself from checking for a little longer, it's still constantly on my mind.

So we discussed this, as well as intrusive thoughts, absolute fear of being wrong, the perfectionism, compulsions, other checking behaviours I've had in the past etc and she told me that this definitely sounds like OCD to her. So I think this is her diagnosing me? The more I've thought and read about it, the more I can relate to it though. I know the psychiatrist had previously said that he thinks I just have traits of OCD, but to be honest, I barely said a word in that appointment, & there was a lot I hadn't even realised myself! I feel relieved and validated to get this diagnosis though. Of course I'd much rather not have all these horrible thoughts, and worries, and compulsions, but at least I can put a name to them now! Treatment will be no different of course.

The therapist also said that, in terms of the cognitive side of CBT, she thinks that I've progressed. I've done my best to monitor how I think and feel, & I seem to analyse my own thoughts well, so there's that. If anything, it feels as if this whole round of CBT has been a journey of figuring out that I do in fact have OCD, even if I've not been able to do anything to lessen my symptoms! I have maybe one or two sessions left? She doesn't think an extension is needed this time round, so next session we will be going over a proper finish (I'm not sure what this entails) and also we will be sorting out a relapse plan for me. I've not had one before, and I've felt so lost with what to do, so this relapse plan sounds promising.

She also wants me to have a few months break from therapy (EEP!) to try out the therapy techniques on my own & see how I go. She doesn't think I'm ready to go onto the behavioural part of CBT yet, but I'm to get re-referred to see her when I feel I am ready. She did say that I can contact crisis team if I need to. I feel so disillusioned with crisis team though. I think they take one look at me, and think I'm fine. If anything, going there makes me feel even less safe, because it's the constant realisation that they Will Not Help Me.

I don't want to wait until July to review my dose of the Sertraline (I really don't think I can risk waiting) so I'm going to try to get an appointment with my GP tomorrow (Friday) to see if she will let me increase my dosage. I've also put in a repeat prescription request for Diazepam (prn). If this helps, then I can tell the psychiatrist in July, if not, then at least he knows I've tried & I'll have the opportunity at that appointment to either increase further/go on something else/add something else. We'll just have to wait and see. I just really really hope this next appointment goes well. I'm going to have to make sure that I can get my words out & be completely honest with him, no matter how ridiculous/embarrassed/messed up I might feel.

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On a completely different note, my left knee has been popping out again & I've decided to approach the GP about this tomorrow. I'm hoping that she'll refer me, although I'm not sure to which specialist. It needs investigating anyway.

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UPDATE

I spoke to my GP earlier today, about the Sertraline dose and knee problem specifically. I'm now on 100mg Setraline (as opposed to 50mg) and I've been referred to a specialist Physiotherapist to see what's going on with my knee/what I can do to manage it/if I need to be referred on to an Orthopaedic doctor/surgeon. The GP believes that it's my patella that is dislocating & seems to be getting worse (it has got worse to be honest!) although to me it feels as if the actual joint itself is dislocating. We'll have to see what the physio says though!

Tuesday, 12 May 2015

Doubting

I did intend to write a post about my thoughts regarding the election result, but I am so so angry & scared about it (& what else the tories have in store for disabled people, unemployed people etc) that I can barely even form a sentence that would do it justice. All I keep thinking is that people have to stick together, be there for each other, support each other, know their rights (while we still have them!). I dread to think what'll happen next, but I refuse to be silent!

Anyway, back to the topic of this post. I want to talk about my mental health again, & how I think therapy's going.

I had therapy earlier today, & honestly I felt completely useless throughout it. It's been a few weeks since my previous appointment & with various things happening, my moods being all over the place again etc, maybe that's to blame but I was having my doubts about CBT again. I can't exactly put my finger on what's not working, but it just feels as if I'm hardly making any progress, & if I do make any progress, I tend to relapse not long after.

According to the therapist, I know a hell of a lot about CBT (I tried an online course of it, I've read up about it, watched videos, talked to people about it, studied it etc) & I tend to be quite familiar with the tools (the worry tree, thought records, behavioural activation). In theory, the tools sound useful & maybe they do help people. Maybe I'm not trying hard enough, or I'm not being open-minded enough, or maybe I'm expecting too much, but they don't seem to be helping me. I get to a certain point with them, where I'm (for example) challenging a negative thought, considering evidence for & against it & trying to come to some sort of balanced conclusion. I don't seem to believe it though. I won't let myself accept that the negative thought is just a thought. I won't let myself change focus in order to let the thought go. It's like I'm clinging onto these worries, automatic thoughts, paranoid thoughts etc because I've always been like this & I don't know how to think in any other way/I don't trust the other way of thinking to be the "right" one.

I told my therapist today that when it comes to my thoughts, it feels as if there's so many that they form this huge messy knot in my head. It's hard to select each one, break it down, critically analyse it or even just acknowledge and accept it.

I'm always trying to figure out what the therapist/GP/psychiatrist thinks when I talk to them. In terms of diagnoses, I'm still confused & the only ones *officially* in my notes are Generalised Anxiety Disorder & Depression. It seems as if none of them want to think about diagnoses though, & would rather focus more on how I feel, think, behave, how it affects my life & so on. I know diagnoses aren't the be all and end all of things, but I've always found them very validating & in a way, it's helped me feel as if I can connect with others with the same diagnoses, know that they understand, and that they know that I understand. Without that diagnosis, it's just a list of symptoms that could be A, could be B, or might not quite fit the criteria for A or B. I know this is ridiculous, & I don't think anyone has actually tried to make me feel this way, but it's like I feel as if I don't have the right to talk about those particular symptoms I have, that I think fit that particular diagnosis because I've not been given that particular diagnosis!

 The therapist is most vocal about focusing more on my thoughts, feelings & behaviours (well, obviously!) & from what I remember, this is what she says about me:


  • I'm a perfectionist
  • I think in extremes (all or nothing)
  • I feel responsible for everything
  • I feel the need to control everything/one
  • I never put myself first/I don't feel I deserve to
  • I don't trust my own judgment
  • I look to others for reassurance & validation
  • I put a ridiculous amount of pressure on myself
  • I have a lot of compulsions, "checking" behaviour, looking for certainty, terrified of being wrong etc. (e.g. you would not believe how many times I check twitter, my tweets, other people's responses, my blog posts etc)
  • I'm very very self critical
  • I don't always notice when I'm worrying, until the worrying gets really bad
There's probably more that I can't think of right now, but those are a few key things she's said. She says she finds the things I say very interesting as well? She writes down so many notes each session, I'd love to know what she's written down! Last time I saw the GP though, I asked her what kinds of things mental health services have said to her in correspondence. It turns out there's barely anything! It's probably my paranoid brain again, but I really thought that mental health services (i.e. therapist, crisis team nurses, psychiatrist) were hiding a lot of things from me. It seems pointless even bothering to open up about things (especially the self harm) if it's just going to be disregarded.

I know I'm lucky that I'm getting therapy at all, & I'm lucky that I got the chance to see a psychiatrist at all. Sometimes it feels like the Sertraline the psychiatrist prescribed is helping a bit, even if just to keep me safe(ish), but I really don't feel as if I'm moving forward. I just feel as if I'm going round in circles. 


I'm not sure if I should ask to get re-referred for CBT once these sessions have ended. What else is there though? Who can I turn to when I don't feel safe? Will I be even more reluctant to ask for help when in crisis? It seems as if it's all up to me to figure out what I need, what will help etc but honestly? I don't know!



Thursday, 7 May 2015

Amzie's Coping Toolkit

(CN: Suicide details in "deaths" link)

So today's the day! I'm actually scared about this election. After seeing the devastation caused by the tories (sky-rocketing benefit sanctions, bedroom tax, the huge rise in need for food banks, cuts, cuts & more cuts, deaths related to sanctions, abolition of ILF, the list goes on...) it terrifies me what could happen next if they stay in power.

I couldn't decide whether to write a post purely dedicated to the election. The information is everywhere (obvious statement is obvious) & people are anxious enough. I'm not sure if this post will be useful, but I decided to just write down the kind of things I might be doing to cope over the next few days. I've only managed to write this post thanks to Diazepam keeping me relatively functional/less like a big ball of anxiety and agitation.

Anyway, here goes:

Keep busy with enjoyable things, for example:
  1. Cross stitch 
  2. Colouring in
  3. Computer games (Doodle God, Sims etc. For online games, I recommend Shockwave and Newgrounds

Something to boost self esteem a bit:
  1. Do my hair/try out a new style
  2. Try a new makeup style/put on my favourite makeup
  3. Paint nails with my favourite nail polish

Something calming:
  1. Meditation (if you need a guided one, then Youtube has lots)
  2. Comforting drinks (hot chocolate, chai tea, horlicks, whatever!) 
  3. Calm music (I tend to go for meditation music/classical music/Enya)

Something cute/funny:
  1. Look for cute animal videos on Youtube (Kittens, puppies, bunnies, foxes etc)

Remember to eat:
  1. Have something easy to prepare
  2. Maybe order a takeaway (I'll be getting KFC on the way back from voting)

Remember to breathe:

Sometimes this helps me, sometimes I can't focus enough to, but I try to do breathing exercises when I feel the panic getting really hard to manage. If I remember correctly it's inhale for a count of 4, then exhale for a count of 4?


Get outside for a few minutes:

This is something I seem to want to do a lot at the moment, although I can't manage to do even little walks very often. I tend to take the recycling/bin out if it's light enough, then I can have a few minutes outside. The evening tends to be easier for this. I can try my breathing exercises again, and also try to focus on the things around me (the stars, the sound of birds, the smell of a bonfire etc). If I can get outside in the daytime, then I'll bring my phone with me and take pictures of flowers, trees, birds etc, I find focusing on nature helps a bit, even if very temporarily.


Keep in touch:

This is one I find hard to do quite often, as when I feel at my worst, I isolate myself a lot. Brains can be horrible though, and spending too much time just with my brain makes me feel very lonely, I get very self loathing and paranoid as well. Keeping in touch with friends helps remind me that people do care, I can talk to them, and I'm not really alone.


Don't overdo it!

I've immersed myself in blog posts, articles, email updates, political programmes, political tweets etc & tried so hard to squash my anxiety down and speak up when possible. It's so important to take breaks from it when you feel yourself getting overwhelmed. So having a plan for something to do/read/play/watch that has absolutely nothing to do with politics (or even the real world!) could be a good idea.


I'm sure I'll think of a load of other things after I publish this post, but these are just a few examples. It's something I'll be referring to later on today, even just to remind myself to be kind to myself. 

Anyway, take care & lots of love and hugs for everyone who needs them right now xxxxx

Wednesday, 15 April 2015

Pressure

This is a word that has come up A LOT recently. I put SO much pressure on myself. Pressure to be useful, pressure to be there for people enough, pressure to not say/do the wrong things (to a point where I try to do nothing wrong. Impossible!), pressure to be a better person, pressure to get back to people, pressure to be as productive as my health allows (actually, more productive than my health allows!), pressure to be as good as others at things like blogging etc.

Blah. You get the picture. I put so so much on myself every single day & all it really achieves is me turning into a big ball of stress and worry.

I don't have many therapy sessions left, and I'm getting stressed out about this too. It turns out that I can request the same therapist next time. It's just the wait seems to be getting longer each time. The therapist I have at the moment seems to be the best one I've had so far. It helps that we have a lot in common too. I constantly explain myself because I feel I have to. I've never just unapologetically been me. I never feel like I'm *enough*. This therapist really does listen to me, and I'm finally beginning to let go because I'm beginning to trust her. In terms of functioning, I'm not seeing any improvements just yet, but I'm at least starting to believe that I don't need to apologise for absolutely everything, & I am allowed to do things I enjoy/take time out for myself.

The Sertraline seems to be suiting me (i.e. no nasty side effects) and sometimes I feel as if it's at least taking the edge off the Depression, sometimes I feel as if it is doing nothing. I've had the odd time where I've been quite hyper, although pain from the Fibromyalgia has masked that a bit. I had the odd day where I felt wonderful. It was like I could breathe again. I wanted to do so much, go to so many places, buy lots of new clothes, be spontaneous! If I'd been able to, I've no doubt that I would've. Another day, I'd gone outside to get some air. It was about 10.30pm, no one was around, & I got this huge urge to go on a walk. So I did. I didn't tell anyone (all I'd told my parents was that I would be round the back for 5 mins). I got this real rush of adrenaline, and it reminded me of how I felt at uni, when on a night out. The pain stopped me walking far & I had to stop so many times but it felt great to just go. Of course when I got back in, my parents were pretty worried about me because I'd disappeared. At the time I couldn't understand why they were worried, but I guess I should've at least told them first! Anyway, I've been on the Sertraline around 2 months now & I have my follow up psychiatrist appointment next month, so I'm guessing I'll be going up a dose if I'm still not finding any/not enough of an improvement.

I'm still getting bad paranoia, and feel I've been such a nightmare recently because of it. Not so long ago, I blocked a whole load of people. I'm not entirely sure why (apart from some didn't say anything & I thought they were spying on me?) but it's as if I couldn't trust anyone. I just don't know. I've lost friends, people have let me down, betrayed my trust, turned out to be prejudiced towards anyone without a job etc & it's making me isolate more.

Something happened recently that really knocked me sideways. I'm spending less time on social media, I've deleted a lot of accounts, ramped up internet security etc because of it. I won't go into detail on here because it involves someone else's experience and it's not my place to share other people's experiences without their consent. Basically, someone spread rumours about a friend. They'd accused my friend of lying about something. They were doing everything in their power (including creating multiple trolling accounts) to get people to listen to them and remove support from my friend. I'd stuck up for my friend (not as much as I wish I could, but I tried) and this resulted in this harasser turning on me, & trying to use my own mental illnesses against me. This made me panic a lot. The paranoia got a lot worse too. I'd noticed strange little things happening with my laptop, some of my accounts, friends on other accounts not replying etc and I actually started to think that someone was taking over my laptop, my accounts, and even controlling my friends. It was horrible. It didn't make sense. In my mind I knew that they couldn't control my friends, but I couldn't stop myself from worrying about it.

I'm still getting times where I start to think this even now, but I'm not as panicked as I was then. I had to take a complete break from places such as Twitter. As well as the paranoia, I was also finding all my mentions, messages, timeline etc very overwhelming. When I came back from my break, I felt incredibly guilty. I'd not been there for people, I'd missed so much, I expected either angry tweets and messages, or for no one to want to talk to me ever again. Even now, I think everyone hates me if they don't reply/straight away. I wish I could just let myself take time out without feeling guilty, unsupportive and selfish.

Back to the topic of pressure. This is probably partly due to the subject being brought up in so many political broadcasts, manifestos etc, but I'm still feeling the pressure to be well enough for work. My doctor, therapist etc all agree I won't be well enough for a while yet, and I'm in the Support Group for ESA, but that pressure is still there. In society, the government, media etc. I'm not surprised about it, but I'm not happy about it either. What about quality of life? social life? daily living? These are all vital. I barely ever see friends, I struggle to cook for myself, I only ever leave the house alone to post my sick notes. I can't predict when/if I'll get some symptoms under control enough to obtain and keep a job. First though, I'd need to be able to look after myself, have the energy/confidence to travel alone, be in busy places, be out of the house for longer.

I want to go onto the topics of disability, political parties' focus on people in work etc more, but may leave this for another blog post (when my head's a bit clearer, frankly!)

My therapy homework (although the therapist doesn't often use this term because it puts more pressure on me, something we're trying to do the opposite of!) is to just be me, do things I enjoy, notice the kind of thoughts and worries I have, and above all, put less pressure on myself! So this is what I'm trying to do.

On that note, I will finish the post here, otherwise I will pressure myself to write more!

Friday, 10 April 2015

*Waves*

This is just a quick post to let you know that I'm still here, and will update my blog soon. There's been a lot going on, (certain things which I may or may not speak about in my next post) & right now I've really needed to stop pushing myself too hard. I've felt the need to constantly be online, catching up with things, putting my views forward etc so much so that I was neglecting looking after myself, and giving myself time to rest.

I could say I have certain goals (stop explaining myself all the time, stop pushing myself so much, don't go online as much etc) but part of the problem is that I constantly set myself goals, write "to-do" lists (nearly every day) and even that increases the pressure to a ridiculous degree.  I'd like to write a more in-depth blog post tomorrow, but I need to see how I feel first.

Anyway, I need to rest now, but I will say that I'm ok-ish & I'm safe right now.

Thursday, 5 February 2015

I'm trying. I'm really trying.

It's been a month since my last post. I've had so much going through my head, and I suppose a lot going on too. I've wanted to write, rather than just ranting on Twitter, but I guess I couldn't put it into words properly. This post will mainly be an updates one.

I did see my GP last month. I reminded her about the blood tests I needed to have (I'd finished my B12 and Folates meds and needed follow ups. I also needed my Vitamin D checking again, because it tends to get quite low this time of year & it was a while since I'd been on meds for it). I think I had to wait a week or two to get the tests done though, because of needing a lift from my dad. He had to finish work early just to get me to one of the clinics that provide a walk-in service for blood tests. I hate Agoraphobia so much. I had my results back this Monday. B12 and Folates within normal range & Vitamin D slightly low, so I'm on daily supplements for 3 months.

She asked me how my pains were, and how I was getting on with the Tramacet. I told her that I just couldn't get on with it. It made me feel so ill, and the Cyclizine just wasn't helping. It barely touched the pain, so I'd been trying to go without pain meds, even though I was really struggling. She seemed very concerned that I was trying to cope without it, so she had a look through the medication manual (I forgot the official name) and discussed other options for me. She decided to try me on Butrans (Buprenorphine) patches. Fast release opiates clearly weren't suiting me (especially with my stomach lining being damaged thanks to the Naproxen) so slow release patches might help. She also prescribed more Cyclizine as nausea was a common side effect of Butrans. I've been started on 5 mcg/hour and if I can tolerate that, then she'll try me on a higher dose. So far, the nausea has been manageable. The Cyclizine is actually helping a bit. You keep one patch on for a week, I find the 2nd day, I get a bit headachey. I still have some Ibuprofen at home, which helps with that. I also have some gel patches which sooth my headaches a bit too. The 3rd day is when the nausea seems to be at its worst. The Cyclizine helps a bit still, but wears off quite quickly. I'm only supposed to take it up to 3 times a day, but there have been days where I might've taken 4. I've had no pain relief yet, but it's still early days.

I didn't mention the hypermobility & subluxing this time. There was too much to talk about and I didn't have the energy for it. I've been having problems with my ribs recently too. I think the subluxed rib has popped back in place now though.

(Massive TW for suicide and self harm details)

Lastly, I spoke about my mental health. Since before Christmas I'd been struggling much more than usual. It is a stressful time of year, with lots to organise. I definitely pushed myself too much, & realising that my fibro's got worse, since the previous Christmas, didn't exactly help. I told the GP that even though my Psychiatrist appointment was less than a month away, I was feeling so awful (and not safe) that I needed something to last me until then. I'd run out of Diazepam, and found that this was the only med that at least calmed me down & kept me a bit safer. I really thought she'd refuse to give me any more. I get so nervous about asking for a specific med, if it has a reputation of being addictive. The GP had no problem prescribing more though (just for my worst days though) and even said she'd let me get it on repeat if I needed! She said the main aim was to keep me safe (so of course she didn't prescribe a lot of Diazepam at once) and if I do start becoming dependent on them, she would help to wean me off them. I told her about how I felt like I didn't have anywhere to turn when in crisis. I couldn't self refer to Crisis Team, the local A&E had a bad reputation when it came to treating mental health crises, and even if I do get an assessment, unless I've already attempted suicide or self harmed badly, they won't help me. I was waiting for a therapy appointment, but I wasn't feeling very optimistic about going through CBT for the third time. There was nothing else she could suggest unfortunately.

When I got home, my therapy appointment letter had arrived. Good news: I was allowed home visits. Bad news: It was the day after my psychiatrist appointment. Emotionally drained is an understatement!

Moving on...

Psychiatrist Appointment

This Monday, I had my psychiatrist appointment. I'd written so many pages of notes and got myself so worked up, that I was a complete nervous wreck on the day. I wanted to be as honest as possible, and I put so much pressure on myself to remember everything/write everything down, that I was already tearful and overwhelmed by the time I got there. This post explains most of the things I wanted to talk about. I recently began to realise that I actually did self harm from quite a young age (I used to bite and scratch my hands. Sometimes this was to distract myself, or release my frustration with being bullied. Sometimes it was to punish myself for 'letting' people bully me). For years, I've picked at my skin too. I'm not sure if this would be considered self harm, a compulsion, or a bit of both. If I see a spot, or bump, or dry patch of skin on myself, I get this huge urge to pick at it. The odd time I've managed to resist, but it's very rarely that I can resist. It will still be on my mind constantly. I've realised that even though I do it everyday, I do it a lot more often, and it gets a lot worse when I'm stressed out, nervous, or upset. I've started using safety pins too. It's still never been enough for A&E but I have damaged skin and caused a numb patch as well. The suicidal feelings have been stronger too, and I'm researching methods more often now.

Anyway, back to the appointment. The waiting room itself was fairly quiet (apart from a radio by reception playing Gnarls Barkley - Crazy, would you believe...) and I didn't have to wait nearly as long as I thought I would. It still felt like forever though, because I was so nervous and fidgety. I'd brought about 5 pages of notes, as well as a bag with all my medication in. The psychiatrist I saw, wasn't the one I was scheduled to see (he must've been busy or something). He seemed nice, although nervous. The appointment was a bit of a blur. I was extremely agitated, distressed and suicidal that day. I thought the psychiatrist would realise this, and realise that I needed more immediate help, but maybe he didn't notice? He didn't ask many questions. Mainly why I was there, what my diagnoses were/what problems I've had/for how long etc. He also asked about my past, friends, family, romantic/sexual relationships, were there any significant events that may have triggered mental health problems etc.

I forgot most of what I wanted to say, my mind kept going blank, I was so damn frustrated with myself, and I cried through the entire appointment. I was trying to explain to him how I thought my diagnoses (of Generalised Anxiety Disorder, and Depression) didn't fully cover the problems I had. I spoke about the bullying, the possible OCD with past behaviours, obsessions and rituals, as well as with the bladder based obsessions and strict routines now. He kept referring to these as OCD too, but when I asked him if he thought it actually was that, he said he didn't think it was, and that it was more attributed to the bullying I'd experienced, and the generalised Anxiety I have. Why did he keep referring to it as OCD, when he didn't think I had it though? It really confused me. I need some validation here.

(TW: Sexual Assault)

I also spoke about my possible Agoraphobia, and the kinds of things I thought might've triggered the start of it. Bullying and physical illness both played a big part, but something that happened at the bus station in town also played a bit of a part.

When I was around 16, 17, I was on my way back from a friend's birthday meal. I was waiting in the bus station (it was around 5pm on a weekday). A tall bulky middle aged man walked towards me and said hello. I was a very naive person at the time, and avoided confrontation as much as possible. I said a quick "hi" back then turned the other way to make it clear I was waiting for the bus, and was too busy to talk. He sat down next to me, and asked me to hug him. He was quite pushy to be honest, and I found him very intimidating. There was another person waiting for the same bus as me, but I don't think they noticed anything was up. I regret this so so much, but I did what the guy said, and hugged him. I honestly thought he'd just talk to me, or walk off or something. He tried to chat me up. I knew something was up, and I tried to ignore him. He started touching me and I flinched away. I wish I'd yelled out, or pushed him away or something, but all I did was freeze then flinch. Thankfully he stopped though, and walked away. I felt so sick. I cried when I got home. The next day I had to go into town. I saw him again, and he said "hi sexy" as he walked past me. It made me feel vulnerable. It made me feel as if he knew I was vulnerable, and he was mocking me for it. I didn't wait in the bus station any more after that, and I got a lot more nervous with catching buses. I'd get a taxi home if I could afford it.

Anyway, I think I may have a sort of Agoraphobia diagnosis? He didn't say for sure, but I guess he might've just attributed it to the generalised anxiety again.

After that, I spoke about the paranoia, and the fact that I've always been a bit clingy when it came to friendships and relationships. I'd think I was very close to someone, and find out further down the line that they didn't feel the same way. I was always terrified of being abandoned. I've always been really paranoid about what people think of me. It's like I always need reassurance, and I won't let myself be too sure just in case I've misjudged things (again). Maybe I hold on too tight? I don't know, but this is how I've been for most of my life, and I think I need help with it. I also mentioned about how impulsive I used to be at university, before I got physically ill, but he seemed to brush this off as nothing.

I'm not sure how clear I was with the psychiatrist. Most of the time he looked confused, or distracted. There was a person in the next room who was kicking off, throwing/kicking things (by the sound of it) and threatening to hurt the person they were talking to. My psychiatrist had to keep going out of the room in case he needed to help out. It couldn't have been helped, but of course it meant that I couldn't concentrate on what I wanted to say and honestly? I didn't feel like I was really being listened to. I felt horrible. I completely forgot to talk about the self harm too. Maybe he would've helped more if I'd remembered to mention it.

At the end, we discussed medication. I'm on 100mg Amitriptyline per day, and Diazepam as needed. He didn't talk about going off the Diazepam (I told him it helped a bit on the worst days, & I had nowhere else to turn), but he wants me to wean off the Amitriptyline and he will write to my GP and recommend I be prescribed Sertraline. He will also send me for a follow up appointment in 3 months time, and if the Sertraline is suiting me, but not doing enough, then he'll put me on something else on top of that. (He did mention Pregabalin, but I've already been on that before for pain and it didn't help anything at all). He also said that I should have therapy/CBT on a long term basis. Once the appointment was over, I couldn't wait to get out of there. I was glad that he was changing my medication, but I'd not been given any other answers, I felt like a lot of what I said wasn't listened to/taken seriously. I'd told him I didn't feel safe. I told him I'd researched methods and kept having plans, but he didn't say anything in response. I had a plan in my head when I started walking towards the main reception; where my dad was going to pick me up. I wanted to wander off, buy a drink from a local shop, find somewhere to hide and take all the pills I had on me. I was so close to doing it as well. The only reason I didn't was because dad was on his way to pick me up, and I wouldn't have been able to walk away fast enough.


Psychotherapist Appointment

The next day, I had my psychotherapy assessment/appointment. I'd tried to write my notes down in a clearer way, and I was so determined to talk about everything I needed to. I'd taken Diazepam in order to calm down the previous day, so I wasn't too worked up thankfully. I got a bit panicked when two therapists turned up; and I asked my mum to sit with me for the appointment. They explained that (because of risk etc) home visits always had to include two therapists. They were both very nice, and understanding though. It was the fact that it was unexpected. I do get very panicky if I don't expect something, or if there's a change. I like to be prepared all the time, even though that's impossible!

The main therapist asked me questions about diagnoses, problems, past, family history, suicidal thoughts, self harm etc. Similar questions to the psychiatrist, but asked in a clearer and much more understanding way. I managed to talk about everything too. I probably rambled quite a lot, but at least I talked about what I needed to. I also said that I wanted therapy to focus mainly on my anxiety (especially the strict rituals and obsessions I have, with my bladder/the toilet). I don't know what will help the depression. I honestly can't imagine my life free from it. I'm nervous about working on the various anxieties I have, but I think that maybe CBT might help that a bit. I don't want to feel like this anyway.

When talking about self harm and suicidal thoughts/urges, the therapist really tried to get me to agree to calling crisis team/going to A&E if I'm having plans/am about to carry them out. I did tell her about my experiences with crisis team, and how I felt they wouldn't do anything unless I'd already harmed myself/attempted suicide. I didn't think my self harm was serious enough to mention to crisis team either. In the end, I had to just say I would contact them. I doubt I will though. It's pointless, and every time crisis team assess me, then discharge me with a "we can't help you/you're not enough at risk" it only pushes me closer to doing something because it feels like no one wants to help anyway.

I guess I've just got to hope that the Sertraline will help me. The Diazepam and my parents may be keeping me safe, but it doesn't make things better. I'm still suffering and struggling. I feel trapped.

Tuesday, 6 January 2015

I lied, I'm not coping.

I'm trying to be a better writer, but this post will be a sort of rambly journal entry I'm afraid.

(TW: Suicide mention)

I seem to be struggling more than usual at the moment (mental health & physical health-wise). Maybe it's the colder weather or the time of year or something (it's been a lot worse since December, so maybe the Christmas period/New Year?).

The colder weather has definitely made my symptoms flare up; pain more than anything else. My legs hurt a lot more than usual & it's really affecting my mobility. I don't have a wheelchair, so I'm leaving the house even less now. On the subject of wheelchairs, when getting the last bits of food shopping for Christmas last month, my parents and I visited a supermarket that'd recently opened. It had lots of facilities, large car park etc, and it also had spare wheelchairs. I was really struggling with pain & was considering using one. There was only one left though, so I tried to just carry on walking. I thought that if I took the last one, then there might be someone who needed it more who then didn't have one to use. I guess I also thought, for some reason, that someone would say I didn't really need it (internalised ableism of course). After a couple of minutes though, I realised there was just no way I could carry on in so much pain. Even though I was still exhausted and in pain, using the wheelchair was definitely a better idea than not using one. It also turned out that when I did decide to get one, another one was free so at least there was still a spare one for someone to use.

I've been trying so hard to keep a smile on my face and not worry my family. It's hard to be totally honest with them, about how I've been feeling. I'm constantly teetering on the edge of a mental health crisis, but there's nowhere to turn. I feel like I need some immediate help, but I can't even attempt to get any unless I know what specific help I need, and there just doesn't seem to be any available regardless. I don't want to worry my family; partly because I don't like worrying/bringing down people, partly because there's nothing they could do anyway. I need to make an appointment with my GP soon (and I so wish the surgery had an online booking system) to remind her about me needing my vitamin d, b12, & folates checking, (& also about the fact that my knee and shoulders still like to sublux, although I doubt this will be listened to at all, so it's probably a waste of time even mentioning it). I also feel like I should talk about my mental health more. I've run out of the Diazepam now. I tried to make it last as long as possible, but honestly I think I need to be on it fairly regularly for now. It seems to be the only thing that helps calm me down a little. I'm nervous about asking for it specifically though; because doctors always seem to mention that it can be addictive. My one-off Psychiatrist appointment is next month, but I'm finding it so hard to cope at the moment, that I feel as if I need something to last until then at least.

I'm getting more mood swings at the moment. I can go from really low, to paranoid, to snappy, random days when I want to do everything (but chronic illness means I can't) to panicky & agitated, and then feel completely numb the next day. I'm also having days where I get this real urge to confess every bad thing I ever said or did. It's as if I think of myself as this absolutely horrible person, who is putting on a show of being nice, and sooner or later people will realise what I'm *really* like.

I've had very vivid dreams recently. I won't say what they've been about, but last night's was horrible, really messed up. I've had very intrusive thoughts that I've found almost impossible to ignore. I was sure other people could read my thoughts, so I've been really awkward and edgy round my parents in particular. It's like I need to get away from everyone, so they don't have to deal with me anymore.

I had some strong suicidal urges earlier. I couldn't distract myself & there were times I really thought I'd have carried through with the urges. Again, I won't give details.

I did want to sleep a lot better tonight, but with so much on my mind, I think I'm just going to have to try and distract myself as much as possible, and hope I'll wear myself out enough to sleep soon.

Thursday, 1 January 2015

A Mental Health Emergency is still an Emergency

I've been reading through this Guardian article today. The title was originally "Mental Health 'emergencies' expected to reach highest figures this winter" but was quickly changed to "Mental Health patient admissions to A&E set to reach record levels" after complaints on Twitter.

Not much better is it?

I'd love to know why they felt they had to put "emergencies" in single quotation marks. It feels as if they believe Mental Health emergencies are not real emergencies. If that is the case, then clearly they need to start listening more. Just looking through the Twitter hashtags #mentalwish  and #crisisteamfail would be a start.

I've been tempted to add "what if physical illnesses were treated like mental illnesses" but the fact is we shouldn't have to compare this in order for people to care enough to make mental health a priority.

"emergency doctors warned that overstretched A&E departments are the wrong place for people in mental distress." I agree that A&E is an extremely poorly designed place for people going through mental health crises, but it is actually where we are advised to go. Often, it's the only option available when someone is in crisis. From my own experiences, every medical professional (who I have been in contact with about my mental health) has told me to go to A&E if I feel I am at risk of harming myself, or have already harmed myself. The option of contacting Crisis Team is still there, but I have to be referred to them (through my GP, a psychotherapist etc) and I don't know about anyone else, but my crises don't always like to happen within office hours.

I've written more information about my own experiences (when in crisis) in my posts Last Night and Crisis (Trigger Warning for details of self harm and suicide in both posts)

I don't have all the answers (believe me, I'd be shouting them from the rooftops if I did!) but something needs to be done. A lot more funding, better education and training, some service that a person can access directly and quickly with well trained staff, more accessible and flexible services. The list goes on.