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!
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.
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.