Finally there!

Well I finally made it to respite after a tremendous amount of red tape! I've reached the halfway point of my stay. The day I left home was fraught with red tape and I really thought I'd never make it here but shortly after 4pm I had arrived.
It was too late for me to go shopping so I had a meal cooked by the manager. Luckily, the previous ICB (in crisis bed) person had left a few essentials like tea & coffee to tide me over until the next day when I would have to shop for my own food.
I've been really surprised by how well I've adapted to living with people. I guess it helps if those people are welcoming & helpful. My fellow residents are certainly that and they've reallyvhelped me settle in. My biggest worry now is, how do I cope going back to living on my own? I also wonder what habits I'll slip back into - I've got a good routine here and having people check on me for medication and food has really helped. Also, because I have to smoke outside, I'm getting plenty of exercise going up & down the stairs every time I want to smoke. Not forgetting, of course, the new friends I've made.
Maybe it's too early to be thinking about negative things like that. Perhaps I'll just focus on the roast lunch that I'll be getting tomorrow!
Oh yes, and watch all the rugby that's on the telly.

48 hours to go

I'm now counting down the hours until I got to respite (it's probably less than 48 hours by now but this is a rough guess). Last night, I was drooling over TV cards for my new laptop as I want to be able to watch TV while in respite but don't want the fuss of bringing my TV. Originally, I was going to be really good and get the bus into town to pick up the item I'd reserved at PC World but I really didn't have the energy today so, being Sunday and probably quiet on the roads at 11am, I decided to take the risk and drive.

Luckily, I made it there and back in one piece but I now realise that I'm not fit to drive as I felt very unsafe and made several basic errors that I wouldn't normally make. At least I know by experience that I'm not fit to drive so I don't feel guilty about relying on my friend to drive me to places. Also, I now have everything I could possible need while at respite, all I have to do is check what I've already packed and add in the few items that are still missing.

I did get a phone call from the HTT earlier but decided I didn't need to see them today, maybe because the 6 Nations rugby is on the TV and I didn't want them interrupting it. Besides, they'll have to come tomorrow with my medication and it'll give them time to find answers to my questions about respite. Although I'm quite stressed and anxious, I'm doing my best to distract myself (this blog being one of the skills) and have managed to stay safe for the last few days which is a major achievement for me!

Lazy Saturday

Actually, this didn't start out as a lazy Saturday as the postman woke me up just after 9am knocking on my door to give me an envelope that wouldn't fit through my door. As I was still half asleep, I decided to go back to bed for a couple of hours - 9am isn't a time of day that my body recognises!! The rest of the day has been pretty good for a change, I had a decent night's sleep (always a big plus point in my book) and the new medication I've been put on for my diabetes seems to be working as my blood sugars were down to single figures for the first time since New Year's Day.

It's still hard for me to remember exactly what I've just done as several of my pills affect my short term memory, but I do know that I cleared some space on my old laptop and downloaded some music. I pay a monthly subscription to get 40 tracks a month and I haven't visited that site for quite a while, partly because of my mood and partly because of the lack of space on my hard drive. As I'd been away for so long, the site offered me a month free, why they wanted me to confirm it, I don't know, who would turn down 40 tracks for free? At least I've now got some new music to listen to while I'm away next week.

I did have a bit of a setback later in the day, I went to upgrade my music writing software, paid my money and then found I couldn't download the update due to red tape. A couple of weeks ago, this would have resulted in some serious self harm by me but all I did today was shout and swear and then fire off a couple of emails asking for help sorting it out. This is real progress for me and shows me that ,as much as I hate them, the pills are working - just don't tell anyone I said it! I've also managed to wash and change my bedding for the first time in absolutely ages which makes me wonder exactly what the meds are doing to me, maybe I'll come out of this a totally reformed character.

My week in respite is approaching very fast, in less than 72 hours I'll be there and I still haven't checked my packing list. Admittedly, I didn't really unpack from when I first thought I was going so there shouldn't be too much to bring. It's just a question of sorting out the little things like, should I bring my new laptop or my old one? I guess the only thing I really need the old one for is my music library and that'll be on my iPods that I'm going to take with me so new laptop will get an outing. The feeling I've got about this reminds me of when I used to go away when I worked - a certain amount of anxiety tinged with a degree of excitement about being away. If it's half as good as people have led me to believe, then I'm sure I'll have a good time there and come back ready to face the world as my old self again.

The Day After

You know those days when you just can't get up, I had one of those today. I don't know if it was the stress of my diabetes appointment yesterday or the excitement of my new laptop, but I just couldn't sleep last night. Every half hour I got up as I couldn't get comfortable in bed and my eyes just wouldn't shut. Before I knew it, it was 4am and I was still struggling to get to sleep. Eventually, I did manage to get off and the next thing I knew, it was 10 to 2 in the afternoon. I only knew this because my friend had rung me to see how I was and was shocked to find I was still asleep. I'm pretty sure I could have managed a couple more hours if she hadn't rung me!

This has had the effect of completely throwing me for the rest of the day. I knew I had to eat with my 1st dose of medication and I also had to walk to the chemist to get my other medication, at the same time, I was aware that the Home Treatment Team would be ringing me after 1pm to tell me when they would be visiting. I'm not sure how I managed it, but by 3pm I'd eaten and been out for a walk. Shortly after that, I was due to take some more medication but had to remember to delay it by at least a couple of hours due to getting up so late.

As it turned out, I needn't have rushed out. I sat waiting for the phone call for several hours. In fact, when it got to 5pm, the voices in my head told me that they'd forgotten about me and I deserved to be forgotten. I guess phone calls are like buses, you wait ages for one and then suddenly 3 come at once. first, my dad called to see if I was going to play in church on Sunday. I bit the bullet and told him I wasn't up to it so now I can relax about the weekend. Second, the HTT called to say the nurse that was coming had chosen to avoid the rush hour traffic which is why I hadn't heard anything but he would be coming in 45 minutes. Finally, my friend phoned to see how I was and to see if the HTT had called. At least I was able to vent some of my feelings about yesterday, getting up late and the delay in the call from the HTT.

Having had today's home visit, I'm much more relaxed now especially as I know that some of my questions about respite such as medications and transport will be answered on Monday. I'm hoping that tonight will be a better night - I'm feeling quite tired now but that could all change over the next few hours. Each time I went to bed last night, I thought I felt tired but I was unable to shut my eyes and sleep for several hours. Maybe if I just stop thinking and stressing about it, I might do better.

Good Bits & Bad Bits

Today has been a very mixed day with some extremes. It started quite well when some software I'd ordered arrived, I also ordered some specialist batteries so that I could use the drawing tablet I'd bought years ago with my new drawing software. I was also expecting my new laptop and spent most of the morning staring out of the window in a vain attempt to make the delivery van arrive sooner.

By lunchtime, nothing had arrived and my friend arrived to take me to the hospital for my diabetes review. I really didn't want to go as I knew it wouldn't be good news and I knew that as soon as I left, my delivery would arrive. There was no chance of staying at home though, as my friend insisted I had to go. As expected, I was still waiting in the corridor half an hour after I was due to see the doctor and my stress levels were rapidly rising. things weren't helped by the nurse weighing me and checking my blood pressure - both readings were much higher and the nurse didn't seem to listen to me when I said there was no way my weight was that much as I knew I'd lost weight.

As I expected, the news about my diabetes wasn't good, although my cholesterol levels had only risen very slightly, my long term glucose control had shot up to 9.2 (it was 7.7 in September). This hit me quite hard but luckily, the female doctor that I saw was prepared to look at the whole picture and I didn't feel that she was disappointed in me (doctors, take note, this is very important to all patients). The bad news is, I have to take yet another medication, the good news is, it's a pill rather than injections which I don't think I could cope with at this stage although hypos (very low blood sugar levels) are a common reaction with this pill so I have to monitor my sugar levels even more closely than I have been doing (when I remember or when my friend reminds me!).

By the time we'd made a detour to Tesco so I could stock up on tobacco and then stopped off at the chemist to get my new meds, it was getting quite late and I dreaded getting home to find a card saying they'd tried to deliver my laptop but had taken it back to the depot as I wasn't in. Luck was on my side as there wasn't a card and when I checked the website, it had only gone out for delivery at 13.30 so I'd managed to get home in time. Now all I had to do was get rid of my friend as I don't think she'll be too happy with me for buying so much stuff (even though I had to get rid of my excess savings). Fortunately, she only stopped for a mug of tea and left to try to beat the traffic. Shortly after that, my wonderful, sleek and ultra-fast laptop arrived.

One of my excuses for having it is, it'll give me something to focus on until I go to respite as its a new operating system that I have to get used to. It's certainly kept me very occupied this evening and there haven't been any bad thoughts, voices or visions to disturb me. All I need to be able to do is to switch it off and go to bed, otherwise, I can see me sitting up half the night playing with it!

Parental snobbery

I was always reluctant to tell my parents about my mental health diagnosis, probably because I had a pretty good idea of what my mother's attitude towards it would be and the words "helpful, supportive and understanding" weren't in the mix. Admittedly, she's been fairly good about my current relapse but the cracks have started to show today. I usually play the organ at a local church on Sunday mornings as it gives me a connection to music (I don't go for the religious experience as I can't understand why anyone would believe in a god). It also happens to be the church that my parents go to and my mother has always attempted to, at the very least, stick her nose in and, at the very worst, control me and what I play.

I did tell her that I would be going to respite (although I didn't call it that, I just said I was being given a week away and she seemed to be okay about it (yes, inside, I know it's nothing to do with her but our relationship is very complicated). She appeared to take great delight in having the authority to tell the priest that I was unwell but it now seems she had twisted it into a complicated lie as she has told me to be very careful what I say to him and to not say I'm going on holiday. I just didn't have the energy to get angry with her but inside I was close to erupting as there was no need to make up stories about what was going on with me.

I have now tried to straighten things my end by phoning the priest and telling him what has happened (without giving him all the gory details). This makes me feel much happier as I know the truth has been told. How my mother will take this, I don't know as I'm sure she was in the process of concocting an elaborate story of how I was very ill with a mysterious illness and she came running to my rescue. She even tried to push me into moving back with her but that's the last thing I need and will probably result in my being sectioned for trying to murder her. I've also told her that I don't want her phoning me every day to ask if I'm better. She doesn't seem to understand that my problems will not be cured overnight and asking me every day if I'm better will only make me worse. Perhaps she means well, but I don't think she's bright enough and lacks the empathy necessary to truly understand.

I don't think I'm asking much of her, I don't want money or physical things, I just want some space to recover and to be allowed to be an individual who can make her own decisions. Surely, that's not too much to ask?

Finally, a good day

Today didn't start to well as I was woken by the postman knocking at the door. As it was after 10 am, I decided there wasn't much point in going back to bed and shortly after getting dressed, I went for a short walk to the chemist to collect my medication. Shortly after I got back, there was another knock at the door which turned out to be a delivery man with some of the goodies I ordered online over the weekend.

At about 1.40pm, my friend phoned me to see how I was which was fortunate as I'd forgotten to take my medication. If she hadn't phoned, I wouldn't have realised until the next reminder on my phone at 3.30 by which time I wouldn't have bothered to take any pills as everything would be out of sync and that's when the trouble would have started.

The really good thing has just happened when I received a phone call from the Home Treatment Team just now. They wanted to know if I wanted the bed in respite from tomorrow for a whole week. For me, that was just too short a notice period, besides, I'm expecting my new laptop to arrive by the end of the week. they were quite happy for me to have it next week so it looks like everything's turning out all right. My gadgets are coming, I've got a new doctor Who DVD to watch and my "holiday" is booked for next week! In the meantime, I'm sitting here getting all excited about the new medication that the nurse is supposed to be bringing over tonight. Things are looking up after all.

Little Steps

Things are finally starting to move for me. I had my forst visit from the Home Treatment Team last night when the nurse that had attended my meeting with the doctor came over with some extra risperidone to tide me over until Monday when all my new meds will be available. although the visit was quite short, we managed to cover quite a bit including my lack of appetite, what I'm finding particularly difficult at the moment and, more importantly, what's happening about the respite care.

It seems that I could get it at any time, in a day or in a few weeks, it all depends on when the paperwork is completed and, I suppose, when the bed is free. Once a date has been set, it will be mine no matter what and no-one will be able to take it off me. This is great news as I really feel I need to get away for a bit. However, I hope it won't be this week as I've been on a massive spending spree and will have to be home to accept delivery of all the stuff I've ordered. Okay, most, if not all of it was unnecessary but I needed a new laptop with a much bigger memory as I'm fast running out of room on the one I've got and I needed to get rid of some excess cash before I have to prove my income for the benefits agency. It's not that I've been earning cash from some work, just that I've not been spending much lately because of being ill and the money has been building up in my savings account for 16 months so I feel entitled to spend it. I've gone for a custom-built laptop for the first time as it was cheaper than buying from the major dealers and nothing they had to offer had all the extras I wanted. Call it a gift to myself for dealing so well with my illness. Plus, it gives me something to look forward to as I keep returning to the spec page to drool over all the details.

Going back to my illness and medication, the dose has been adjusted so that I take most of it at night, this has had the most welcome effect of giving me two nights excellent sleep in a row. The knock-on effect is that I feel better through the day and better able to cope. The downside is, I tend to feel pretty dopey all the time. As I don't have to do anything or be anywhere, I can live with this if it stops the distressing images and sounds.

Time is also a bit of a strange thing at the moment as I seem to lose track of where I am in the day and I'm often not sure what day it is. for me, it's normal to have a warped view of time when I'm ill - time either stands still or goes by so quickly it's like someone stole it from me. The getting lost in the week is at least partly down to the fact that I've lost all my structure. As I can't drive, I'm not going to my woodwork or pottery sessions and I'm still not allowed to have my arrows back so I can't go to my archery club. Each day seems to merge into the next in its routine of getting up, making copious mugs of tea, watching the telly and doing stuff on my laptop. Sometimes, New Year's Day feels like only yesterday and other times, it feels like a lifetime ago.

What I want more than anything, is to be able to get back to my normal activities. I feel like I can, but perhaps, at the moment, I need to let other, more saner people make that decision for me. In the meantime, I'll be sticking to my infamous "T" diet - tea, toast, telly, tobacco and teddy (always good for a cuddle!

Is there anybody there?

It's nearly 4 in the afternoon and the only phone calls I've had are from a survey firm who ept hanging up on me (I hate those calls, particularly when they hang up as it plays on my paranoia). I'm sure I was supposed to get a call from someone today to let me know exactly what was happening. Yes, they know I'm not really contactable in the morning because of my sleep problems but 4 in the afternoon??? Are they having a laugh?

I can hear the voice that haunts me telling me my nurse was just getting my hopes up and I should have learned my lesson yesterday when she told me the respite bed wan't available but I'm stupid and I'll never learn. The rational voice (that's finding it hard to be heard at the moment) is trying to tell me that I need to wait for another hour before I can genuinely feel let down. Once again, I feel that I don't matter and they think that if I take the pills, I'll just get better given enough time. I want to scream and shout about this but I'm aware my neighbour is in and I'm afraid that if I start, I'll never stop and I'll end up being forced into hospital. Life just doesn't seem fair at the moment, I can't drive because the pills make me too drowsy and unco-ordinated and I can't vent my frustrations by going to my archery club and shooting a load of arrows because they've been confiscated as I admitted to harbouring murderous thoughts about my neighbour and her son. If you lived here, you'd probably want to kill them as they make so much noise.

It's now just gone 4.20pm and my rational mind was right. I've just received a phone call from the receptionist at the CMHT. Before the Home Treatment Team can take me on, I need to see a doctor to review my medication and an appointment has been made for me tomorrow afternoon at 3pm. That's the good part, the bad part is, it's at the mental health unit which is 10 miles away and I can't drive. I've been told that they're aware of this and my nurse will be calling me tomorrow morning to sort out getting over there so maybe I'm not bottom of the heap after all. Now all I've got to do is get over my anxiety of seeing a strange doctor and shut up the voice that's telling me it's all a plot to get me into hospital as that's where the wards are. Time for a mug of tea and a cigarette, I think.

Let down again

If everything had gone to plan, I would be writing this from the comfort of my room in a care home while experiencing respite care. Like most things, it didn't go to plan and today nearly ended in disaster. I called my nurse this morning to find out what time she would be taking me over to the care home and she told me that, once again, the bed wasn't available as someone else needed it for another week. At the time, I got very angry and felt like giving up, I felt that I had been sidelined and no-one realised that my difficulties were serious. She wanted me to come in for a meeting to discuss other ways of supporting me but all I wanted to do was shut the door on the world forever. Fortunately, my friend had already arranged to come over and she dealt with the problem by telling me she would call my nurse to make arrangements and she would take me to the meeting. She also decided to take me back to her place in the meantime so that I could have a proper meal and could be away from my flat while I was feeling extra vulnerable.

I don't know what I'd do without my friend as she managed to sort everything out for me including collecting my medication and getting me some milk and bread as I didn't have any because I thought I wouldn't be at home for several days. She seems to know exactly what to say and do with me especially when my illness kicks in and I get tired, confused or difficult.

From what I can remember of the meeting this afternoon, I am going to be looked after by the Home Treatment Team which takes the pressure off my friend who has been doing an incredible amount of work looking after me over the past two weeks. As far as I'm aware, this means that there will be nurses visiting me at home to help me through this patch. I know I was given a lot more information than this, but it's difficult to remember what I did an hour ago never mind long conversations that happened in a meeting several hours ago.

I suppose part of me is glad that I'm still at home even though I was looking forward to a bit of TLC away from home. At least I've still got my Sky telly, I know I can smoke anywhere in my home and I don't have to face the anxieties of somewhere new. I just have to get used to the idea of strangers (although I apparently know several of the Home Treatment Team from before) coming into my home and having a say in what I do.

At least the day ended better than it started and even though I feel very exhausted, it's a good feeling and I'm unusually calm. Let's hope it's not the calm before the storm.

Change of Plans

I had hoped to be recovering in respite care today but, like most things, this did not go according to plan. On Monday, my nurse called me to say that the bed was available from next Wednesday so I'd have to wait another week. Even though she hoped I'd be better by then, she said it would still be a good idea to go as I really needed the break. At the time, I was really angry, I'd got my hopes up as I knew that a few days somewhere else with people keeping an eye on me would probably do me the world of good. Looking at it now, I think I may benefit even more as I am slightly better and therefore more aware of what works for me.

This week has been a bit of a struggle. When my nurse visited me, she booked me a GP appointment as my mouth felt like I'd been eating broken glass (not that I'd actually tried that) and I was only able to eat bananas and yogurt. The medication they've put me on has really knocked me for six so I was unable to drive to the doctor and had to use a walking stick to help me keep my balance which made me feel old and sick. As it was an emergency appointment, I had no say in which doctor I saw and so I ended up seeing the one that I really don't like seeing. i know I wasn't totally on the ball but that was no excuse for him to pretty much ignore what I was saying to him. I tried to tell him that my blood sugar levels have been constantly raised since New Year but he was more interested in telling me to make a proper appointment for a diabetes and blood pressure check. As he gets more money if my health reaches certain targets and if I do certain tests, I'm like a little gold mine for him so I felt he should treat me with much more respect.

I'm not sure if it's a side effect of all my medications or just my illness, but my memory is very poor at the moment. I can't believe that it's already Friday and, if you asked me, I couldn't tell you what I've been doing all week apart from watching tv and listening to music in the early hours of the morning because I can't sleep. The not sleeping is really starting to bother me as it throws the whole day out of sync. It's not a proper not sleeping as I do eventually manage to fall into a very deep drug induced sleep which knocks me out until lunchtime. Yesterday, for example, I didn't wake up until after 1p.m. and even then I could have slept for a few more hours. Today, I had to be up at a reasonable time as I had a home visit and I didn't want to still be in bed when the male nurse, who's covering my usual nurse, turned up.

Given that he's not worked with me in a therapeutic way before, we had a fairly productive session although I felt that there were a few things he didn't quite understand about me and how this particular relapse has affected me. Inevitably, the question of the weekend came up along with how I'm going to spend my time and what will I do if I start getting into real trouble. Luckily, I have my one good friend who's been incredibly supportive through all this and she will be coming over to see me tomorrow. Everyone needs a friend like this who will provide home cooked meals and who doesn't mind the long silences when I drift away. Friendship is a difficult thing for me to understand but I do know she's one in a million especially when I call her in the early hours of the morning because the voices are getting too much.

Much as I hate taking medication, I have to confess it does seem to be working. The voice that I was hearing tends to be more muffled for most of the day and the suicide/self harm images are fewer and further apart. Not being able to drive has its good points, I'm saving money on fuel and if I'm not going out, I won't be spending money. If only I can get to grips with feeling like a zombie for most of the day and master my high blood sugar levels.

Stigma and work

Today is World Mental Health Day and it got me thinking about mental illness and work, in particular, people's attitudes towards the mentally ill in the workplace. When I had my major breakdown, it was triggered by an incident at work. My view of it was that everyone was supporting the people making allegations against me and there wasn't a single person who was prepared to take my side or at least accept that my version of events was reasonable and true. At my lowest point, I remember sitting in a corner of the office trying to stuff envelopes while sobbing my heart out. I would have expected any normal person to express sympathy that I was upset and maybe say some words of encouragement but I was ignored.

Once I started my long period of sick leave, it was as if I didn't exist. No-one called to see how I was and when I came into work for meetings with my manager, people looked right through me. At the same time, another colleague was ill with a brain tumour. He had his family around him to support him and many of my colleagues visited him on a regular basis before he sadly died. It may sound a bit like sour grapes but I was deeply upset by this as everyone at work knew I didn't have the support of my family and was trying to cope on my own. I'd known the guy with the tumour for nearly twenty years (which most people at work knew) but when he died they apparently drew lots in the office to decide who would tell me as no-one wanted that responsibility. Perhaps they thought this news would push me into a suicide attempt (they were aware I'd made at least a couple of attempts already), perhaps they just didn't want to talk to me as I was now "mad". Either way, I felt they didn't have much respect for me and it was clear that the people I'd thought were my friends were anything but.

Since I lost my job over 4 years ago, I've had plenty of time to reflect over what happened and I'm pretty sure that if people hadn't shut the door on me, I'd still be working. In the run up to my dismissal, I came across a great deal of prejudice and misconceptions. The greatest of this seemed to be if I harmed myself, I would more than likely be a danger to children. If only they had spoken to me, my colleagues would have realised that this wasn't true. Yes, I was self harming during the period that I was still able to teach but it was something that I did in private and I made every effort to hide my injuries from my students. Only once did a child ask about the scars on my arm and my explanation that I'd been in an accident was accepted.

Having read some of the reports that were passed on to my manager, it was clear that people were making their own minds up and often exaggerating things. One report said I'd come into the office with my arms "covered in blood", something that I wouldn't have done in front of my psychiatric nurse who was non-judgmental about my self harming. It's clear that ordinary people are very afraid of mental illness but it's not catching and you're not going to become mentally ill just by talking to me. Most mental health patients are not easy to spot probably because we're pretty much just like anyone else. Yes, we do have difficulty coping with things that other people find easy and at some time in their lives, 1/4 of the world will experience some form of mental distress.

Perhaps that statistic is what scares people, a case of "there but for the grace of god" or maybe it's just ignorance. The media doesn't help with its depiction of mental health sufferers as people who stop their medication and start attacking or killing people or headlines that emphasize the fact that someone who committed a crime had a mental illness. What we need to see is the ordinary side of people with mental health problems then maybe the rest of the world wouldn't run a mile. Perhaps then I could join groups and be comfortable telling them that I have a mental health problem. I'm fine with telling them about my physical conditions so I should be able to tell them about my mental conditions without fear of being rejected.