Big Changes

It's been a good couple of months since my last post, and I did mean to talk about my progress with the physiotherapy sessions! Truth is, there have been some big (and quick!) changes recently.

My parents and I moved house at the end of last month. Thanks to the letting agent rushing us along, we had less than a month to confirm we wanted the place, come up with deposit, and move in. Even without all of our disabilities, this is a very stressful thing to do! We are still surrounded by boxes, but we are much happier in this new place. It is easier to get round the house, the area is flatter, and the shops, GP surgery etc are nearer. It is a much quieter area too.

I only managed to have one physio appointment before the move, and am planning to ask to be referred to the physio place next door to the new GP's. Hopefully the wait won't be too long. I just want to be able to do a bit more (especially with my dad's health worsening).

The prospect of so many changes has been very daunting, but I'm getting a bit less panicky about it now. Things such as changing doctors, contacting various companies (including the Jobcentre eep!) to change address, the mental and physical exhaustion (not to mention the extra pain) from the move itself, have been very hard to cope with. So many things to consider, my mind has been racing. It is a change for the better, but it has involved pushing myself to my absolute limits in order to help out as much as I can.

Thankfully some of my uncles helped with the move itself. We had removal people come too. Without them, I don't think we'd have managed it!

Since my last post, I've noticed new and worsening symptoms. I put some of it down to overdoing things, but other symptoms have just been strange. I have a couple of nurses appointments, but I do need to make a doctor's appointment at some point. I did mention them to my previous GP, who has referred to them in my notes (hopefully). I'm finding that nearly every time I move my head, especially if turning to the left or right, I get a huge wave of dizziness. At the same time as this dizziness, I get pins and needles as well as weakness in my right hand. This has caused me to drop things suddenly, and has really started to bother me. My co ordination has been off too, and I'm tripping over more often. Now and again, when I get the dizziness, I feel & hear a sort of scratching in my head. It's very unnerving! This may be unrelated, but I'm getting more headaches & my eyesight is getting worse too.

As for the physio appointment, it went pretty well. There were a couple of things I wasn't happy with, but generally I think they understood the kinds of problems I had, and took that into consideration. I've not been able to keep completely to the exercise programme (the move, flare ups etc) but it is at least doable.

I'm sure there were more things I wanted to mention in this post, but I think I'll have to leave it here. I do want to blog more often. I've even wondered about vlogging, but I don't think I could cope with the mean comments.

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!

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/

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 :)

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!

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.

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.