Thursday, August 5, 2010

Missing people

I seem to be missing people at the moment. It was my birthday a few weeks ago and while my parents gave me cards and presents, I got very little from my two brothers. In fact, all I got from them was a few words in a text and via Facebook. I was a bit surprised at just the text from my eldest brother as I'd sent him something for his birthday and my mother had said he had a card for me. Fortunately, my friend made up for my family as she treated me to a day out with her and a nice home cooked meal.

Although she sent me a card for my birthday, I haven't seen my befriender since well before my birthday. She was away on holiday for a couple of weeks and I was expecting to hear from her last week as we haven't been out for a long time. The other day, I picked up an email from her saying she had some family matter going on that was taking up all her time and energy and I would be hearing from her when it was all sorted. I can't say I'm that surprised at this news as it's not the first time it's happened and I get the feeling that I'm pretty low on her list of priorities. Unfortunately, she doesn't seem to understand that our meetings are very important to me as it's the only time I get to go out with someone socially. I find myself wondering how much more is left in this relationship as our meetings have gotten fewer and further apart and when we do meet, it's to do exactly the same thing every time (coffee and a wander round the garden centre).

I wouldn't perhaps feel so down about all of this if it weren't for the fact that my true friend (who I spent my birthday with) has gone on holiday for two weeks. While I was starting to feel as if she was nagging me a little too much about eating properly and being cheerful, I do miss our conversations even though it's been only a week since we last spoke. It seems bad timing that the two people who would keep me entertained and out of trouble have disappeared from my radar. I have been trying to keep on the straight and narrow but it's difficult to stay positive in such circumstances. I know I should be thinking of people in a worse position than myself but I can't and I find my inner child saying it's all so unfair and here are people leaving me yet again. I've tried to occupy that child by going to meetings but it still rears it's head come evening time. I've even tried to pacify it with some of its favourite junk food but all to no avail. I guess all it wants is some attention from someone as this is what has kept it quiet during today.

If only there was an easy way of getting real friends that could actually be there. Yes, I've got followers on twitter and friends on Facebook but these are more the virtual sort of friends - not the sort you can just go out with. Perhaps there's a book out there that tells you how to get more of these real friends, if so, perhaps someone could give me the title or just send me a copy.

Thursday, June 3, 2010

Doing well

Last Friday I had my CPA meeting with my psychiatrist and other members of my team. Fortunately, only my CPN turned up as I was feeling excessively anxious while I was waiting to go in. I've no idea why I felt so anxious as I've had many of these meetings on the past and attend the unit once a month to see one of my nurses. Luckily, I remembered my breathing exercises and managed to calm myself down.

The meeting itself was fairly short compared to previous meetings and it seems my shrink is happy with my progress although she wants me to start reducing my anti-psychotic. I'm not sure how I feel about it, on the one hand, it's really helping me sleep but on the other, it's not so good for my diabetes as it has the side effect of weight gain.

Overall, I feel as though things are back on track for me, I'm going to all my groups on a regular basis, I'm taking all my meds (a big thing for me as I'm not keen on the idea of drugs to keep me well) and I'm going to all my appointments. Speaking of which, I've got my retinal screening next Tuesday which I'm really not looking forward to as I can't drive there so I'll have to get the bus or splash out on a taxi and I hate having my eyes dilated as I often end up with a headache. At the moment, I'm debating which mode of transport to use and I'm seriously thinking of taking the risk and driving there as it's a relatively easy drive there. The voice of reason in my head tells me to take the bus but the rest of me hates the idea of waiting around so much - I could be there in 5 minutes if I drove but will have to leave over half an hour earlier if I get the bus, plus, there's all the anxiety associated with getting a bus for me. Maybe I need to sleep on this matter, after all, I've bitten hte bullet on so many things lately, maybe it's time for me to start using public transport.

Thursday, May 13, 2010

Flatness

It seems to have been ages since I last posted something. This is a marker of how boring my life is at the moment, I'm still waiting to find out if I've got funding for both my archery and a break I'm hoping to take in the summer. At the moment, I'm being a good little patient and am taking all my pills. The upside of the anti-psychotics is that I don't cry or get worked up but this is also a downside. Life has a very boring flatness to it at the moment - I don't get depressed but I also don't get excited by anything. This makes it quite hard to get motivated to do anything - even getting out of bed in the morning can be a bit of a struggle. On the upside, according to my friend, I'm much easier to deal with when I'm well and I'm much less argumentative.

Another downside of the anti-psychotics are the annoying side effects such as frequent dribbling and an almost constant chewing motion. As a result, I've been put on yet another new med to deal with the side effects. at this rate, I'll end up rattling every time I move. I'm not sure if it's down to this new pill, but I've suffered three hypos in four days which is starting to get me down as they tend to hit at about the same time every day. However, because of my flat mood, I'm not getting that down or annoyed by it.

I've been tempted to stop my meds and have tried a couple of times but it's only lasted a couple of days as I've found myself unable to sleep properly without the drugs. This is then the point where I start to stop my meds long term because I hate the idea of being dependent on drugs to keep me well. Yes, I guess I'm better off when I'm on them even though life seems less interesting but I hate the idea of being controlled by meds. As my mood's stuck in a nowhere land at the moment, maybe I won't get worked up enough to stop everything besides, I've got my next CPA meeting with my psychiatrist in a couple of weeks and she's never too happy when I stop my meds.

Tuesday, March 23, 2010

Big Decisions

This week I've made some big decisions about some of my medication. I've been taking one of them so long I can't remember when I started it but I'm sure it can be measured in years. This week, I made the decision (along with my nurse) that I want to come off it. A big part of me is fed up with being tied to collecting medication twice a week and having to take something that leaves a nasty, bitter taste in my mouth and a bigger part of me feels I'm ready to come off them. This decision was sparked by the news that I can't take part in any serious archery competitions while I'm on this drug as it's listed as a banned substance . While I'm not ready for any serious competition at the moment, I'd like to be "clean" well before this issue arises.

I've also taken the decision to start reducing my anti-psychotic meds. This one is more motivated by the fact that I'm fed up with feeling so tired all through the day. Like the other drug, this is going to be a gradual process but I seem to be doing well after only a few days. It does bother me that I need to take pills in order to feel well, it seems so unfair that I have to take drugs that control my mood. It's been over eight years since I started on psych meds and it feels like forever. I can't remember what it was like to not have to pop pills every day in order to keep myself sane and I wonder if there'll ever be a time when I can cope with life without chemical assistance.

This is the time when I need to be careful, when I start questioning the need for pills to maintain myself, I tend to stop taking all my meds. Yes, I know what usually happens when I do this but there is a part of me that hopes that this time I'll be okay, I won't start seeing or hearing things and I'll be able to sleep without difficulty. Sadly, this never happens and so I keep taking the pills in order to live what passes for a normal life.

Wednesday, March 10, 2010

Not such good news

Today I had yet another appointment at the eye clinic to find out why my vision has deteriorated and I finally got my answer. It turns out I've got cataracts in both my eyes which will mean surgery at some point. From what i can remember, the doctor said this might not be soon as my general vision was pretty good. You'd think he'd be able to refer me to the relevant clinic there and then but no, NHS red tape jumped in to mess things up. I've got to go back to my GP and get her to refer me to the cataract clinic (it's got something to do with who pays for the treatment). The earliest appointment I can get is Monday afternoon and even then I could be waiting up to 18 weeks before I get seen.

In the meantime, I think I may have to go to the optician to get new glasses so that I can see to do ordinary everyday things like using my laptop and driving. At least I've now got a reason for my sight problems in low light, the question for me is, how dod all this happen? I knew I had a cataract in my left eye but it hadn't given me any problems for a couple of years. The only thing that I can point the finger at is my anti-psychotic meds as I know someone else who's cataracts were caused by this type of drug. Now it's a case of playing the waiting game, waiting for an appointment and then waiting to see what treatment, if any, they're going to suggest.

Tuesday, March 9, 2010

Is it the pills?

Once again, I've been hit by a terrible tiredness that makes me just want to close my eyes and sleep. This has been going on ever since I started at respite and its really starting to get me down now as it just gets in the way of anything I want to do. I'm not sure why it keeps happening, I certainly never used to be like this, in fact , I was very much a night owl.

Maybe it's because I haven't been out today. My pottery class was cancelled because the teacher is on leave. I did make a passable attempt at making soup today which was an achievement for me. It was really an experiment to so what I could do with the leftover vegetables I had from the previous two days. So far, it seems to be okay and I haven't been sick yet which is a good sign!

Perhaps I need the extra sleep in preparation for tomorrow as I've got to go back to the eye clinic in the afternoon. Last week when I went, the doctor said there had been some damage to my eyes which might explain the problems I've been having. Unfortunately, there wasn't time to dilate my eyes so she could have a proper look so I've got to go back tomorrow for the full blown treatment. I hate having my eyes dilated as I usually end up with a headache and not being able to see properly enough to even use my phone is a real pain in the butt. On the plus side, I might get some answers as to why my sight has been so poor lately, I'm just hoping there isn't the huge delay I've had the last two times I've had to attend.

Thursday, March 4, 2010

Health Matters

Maybe it's because of my mother's heart attack or maybe it's just because I found I wasn't as fit as I used to be but I've started doing more exercise. I've already been out on the archery range twice this week, I would go today but it's just a bit too cold and windy. Today, I did a short walk down to the chemist so I could post a letter and collect all my medications. I think the walk today was prompted by a telephone call I got from my GP regarding my eyes. Last week, when I saw her, I was told I would get a phone call within 24 hours giving me an emergency appointment. When I went to see the doctor yesterday, I told him I still hadn't heard so would they chase it up for me. Being a new and young doctor, the original one I saw was more enthusiastic than some of the others would have been which is why I now have an appointment at 9.15 tomorrow morning.

This is a shockingly early time for me although I have been better about getting up reasonably early since I went to respite although 9.15 is still going to be a bit of a struggle. On the plus side, I should get to find out what's going on with my eyes although, knowing my luck, they'll say there's nothing really wrong and I just need a new prescription for my glasses. Admittedly, my eyes have been better although I still feel uncomfortable about driving at night (I had to drive in the dark last night)and I still struggle to read my laptop screen when it's more than a couple of feet away.

Monday, March 1, 2010

Getting Back to my Routine

I'm gradually starting to get back to my usual routine having gone to archery club on Friday and my woodwork class today. Archery was really tough, I hadn't realised how unfit I'd become. I only managed about an hour before my shooting became really poor because I was so tired and even waling 60 feet to collect my arrows was a struggle so I decided to quit before it really started to affect my mood.

Woodwork today was ok, but again, I didn't stay until the end as I felt I'd done enough for the session. At least I finished my project - a holder for my pens and nib tin. You never know, I might even manage to go to pottery tomorrow, then I'll be back doing all the things I like doing. Thinking of things I don't like doing, I forgot to bring my blood test form with me today. At some point this week, I have to do a blood test for my next diabetes appointment in a couple of weeks. While it's not something I enjoy doing , at least this one is a random test so I don't have to fast. This also means I can do it later in the day when there's less likely to be a queue.

I've got my fist committee meeting for the archery club this week and am hoping to not disgrace myself there. I think it'll be hard talking about things that everyone else already knows about but I'm a relative newcomer to. At least I can get to say my piece about the lack of access to the field (the club owners no longer keep the gates open 24/7). Maybe I'll just sit and watch as that's something I am good at doing.

Having sat and thought about it, I decided to drive down to the archery field as the weather was soo good and managed to get in about 45 minutes of shooting before it got too cold and dark for me. Far from wearing me out, that little bit of exercise has given me some more energy which is strange but good. I just need to be careful and make sure I don't over do it, as I have a tendency to throw myself into something a little too much and thne end up getting into trouble. 45 minutes seems to have been just enough to stretch those muscles that took a pounding on Friday night!

Thursday, February 25, 2010

Steps Forward

Today was a landmark day for me as I got my arrows back. Although it's only been just over a month, it feel like forever, probably because I haven't shot since the week before Christmas. It wasn't that I lost my arrows, rather, I had to hand them over to protect myself and others as I was so unwell and so my friend took care of them until I was deemed fit enough to be allowed to have my weapons back again.

It felt like a big step today to go to my friend's to collect them. Needless to say, I also rewarded myself with some more drawing stuff. All in all, it's been a good day in spite of the weather which was pure rain all day. Now I can look forward to going back to archery club tomorrow night after a very long break. While I'm not expecting to get really high scores, I am hoping I won't disgrace myself too much, if only I can remember how to put my bow together (maybe I'll do a practice run at home before I go).

I've also provisionally booked my Summer break this morning. Yesterday, my nurse and I talked about having some planned respite as a way of stopping me from getting ill. In the New Year, which is one of my bad times, I plan to go back to Snowdon as I did so well there. For the Summmer, I'm looking at a place called Forresters which is on the coast in Southampton. Having looked at it online, I think it would be the ideal place for me so I rang them up to ask if there were vancancies for the week beginning 16 August and luckily, there are still places available. All I have to do now is get the forms filled in with my nurse and send them off. This week really feels as if things are looking up.

Tuesday, February 23, 2010

Never rains but it pours

I thought things were going far too well for me. Last night, I noticed a few problems with my eyes, basically, I was finding it hard to see properly and realised I was guessing at things on my computer screen as well as seeing double and seeing halos round lights. My friend had told me I needed to see a doctor but I hoped that everything would be ok by the morning.

Having tried to do some stuff on my laptop this morning, I realised the problem hadn't gone away so I phoned for an emergency appointment. Luckily, I got one within 5 minutes so I had to drive to the surgery as I'd never make it in that time walking. The doctor that I saw has made me an emergency appointment at the eye clinic - I'm just waiting for the hospital to phone me to confirm the details. It does worry me especially as the doctor mentioned glaucoma which I'd been tested for less than two months ago. Hopefully, it'll turn out to be nothing. All I want is to have my eyesight back to normal so I can see to do things like drive and use my laptop. Ok, I'm not completely stuffed as I'm writing this but I'm relying on spell check far more than I normally do to help me write. Maybe I need more sleep, maybe I've got an infection or maybe my eye condition is worsening. Watch this space.....

In the meantime, I've got to keep a closer eye on my blood pressure and cholesterol. This afternoon, my mother called me to tell me that whatever caused her heart attack is hereditary so she was told to warn us. Luckily for me, I already get both those checked because unluckily, I already need treatment for both of those conditions. At least it explains why I've got some of the conditions I'm battling.

Monday, February 22, 2010

Too Quiet

So far today, things have been a little too quiet. I'd half expected a row from my neighbour over the rubbish issue the other day. I did have to check my bins today as the excess rubbish has gone. She may have put it in another person's bin but as long as it isn't in mine, I'm fairly happy with it. I've been out for quite a bit today which was ok until I realised that I can't see well enough to be able to drive in the dark which was a bit scary! I've also been on a bit of another spending spree and ended up getting a monitor and wireless keyboard (which I'm using to write this) as I thought it would be easier on my eyes.

I get the feeling I'm going to be glued to my laptop for quite some time as my new drawing programme arrived this morning and I've already been having fun with it creating a new wallpaper for my screen. Maybe money doesn't buy happiness but it certainly helps smooth the ride! Just don't tell my friend what I've been doing as I'm sure she'll hit the roof if she sees another new gadget!

I can tell I'm having a good day as I picked up the phone and called my mother today to make sure she's still ok. This isn't something I normally did, in fact, I would do my best to avoid making that phone call. As I hoped, she's fine and has even been out shopping with my dad so I'm glad she's still doing ok.

Sunday, February 21, 2010

Anti-social behaviour

One of the reasons I ended up in respite care was because of my neighbours. Not only do they do things to annoy me, they're often very noisy and don't appear to consider other people. When I came back from respite, the noise did seem to be a little better but I've just discovered their behaviour hasn't improved. I'd just gone out to put some boxes out in my recycling bin and happened to check in my rubbish bin to see if it had bee emptied while I was away. I didn't expect to see several bags of someone else's rubbish in there.

Having checked my neighbour's (full) bin, I realised it had to be her as the bags were all the same type. In fact, as her bin was already full, it looked as if she'd split her rubbish between my bin and the one belonging to the downstairs flat. Being me, I wasn't going to put up with this, so I emptied my bin, stuffed 3 bags in her bin so it's now overflowing and left the rest on the pavement by her bin. I could understand rubbish being put in the wrong bin if they weren't labelled but I put my flat number on both my bins as soon as I got them to avoid this sort of behaviour.

I presume she thought she could get away with it as I'd been away (I'm assuming it happened while I was away). If the woman had the slightest shred of decency she would have at least apologised for this. Unfortunately, it's not the first time it's happened and it won't be the last. I could complain to my housing association like I've done before but it doesn't seem to make the slightest difference, besides, the only proof I've got is the fact that they were the same type of bags in both bins. I've half a mind to rig up my video camera so I can catch her at it as it's the only way I'm going to get anywhere with it.

It annoys me because I went away for a break from all this and within days, the trouble is starting up again. It's all very well saying "do your relaxation exercises" but it's not so easy when the gobby mare is disturbing my peace.

Saturday, February 20, 2010

Relationships

I've been thinking today about relationships, in particular, friendships. I have two main relationships, one is a genuine friend, the other was given to me in the form of a befriender and this latest rough patch has really put both of them to the test. My genuine friend, who I shall refer to as my friend, has been there as much as possible, coming round to see me, taking me out and bringing me endless food parcels. My befriender, on the other hand, has been conspicuous by her absence.

we're supposed to meet on a regular basis in an effort to get me to go out more often but the last time this happened was around mid-December (two months ago). Normally, when I get ill, I cut all communication but this time was different. I've tried my best to keep her up to date with everything that happened with me. Sometimes, I might get a reply to a text the same day, more often, though, replies took much longer.

The point of this relationship is to support me through my illness and it has failed miserably. While it's not the first time this has happened with a befriender, I know it's not my fault this time. I've said when going out was a problem because I couldn't drive. While I don't expect anyone to be a mindreader, surely a proper response to this would be "how about I come over and pick you up". This hasn't happened even though she knows where I live so I really think it's time to call it a day on this one.

I wonder if I'll ever get a befriender who works for me? I've had a few, but as these were students, the relationships were short lived due to exams and moving on. The ones that could be long term have always failed because they didn't meet my needs. All I ask for, is someone to go out with me on a regular basis and come up with ideas for places to go. Surely, that's not too much to ask for or am I setting my sights too high?

Friday, February 19, 2010

Reality?

If I hadn't noted the phone call I had with my dad last night about my mother, I would have thought I'd dreamt it. It seems bad news is coming thick and fast as I've just had a call to say that someone I've known for a very long time has died. It's quite hard to hold onto reality in moments like these and also makes me think there can't be any sort of god because people around me are getting sick and dying.

On the good side, I had a review this morning and while I've still got to stay on the meds, I can have my arrows back so I can make plans to go back to archery. I haven't shot since before Christmas and have really missed it over the past few weeks (which must be a sign that 'm getting better). The tiredness is still bothering me so I've been told to split on of my tablets so I take half when I get up and half later in the day. The bad news is, I might have to stay on the antipsychotic for the foreseeable future as it's helping me although the dose might be lowered when I've fully recovered. When that will be, I don't know although I've been told nothing should change while my mother's in hospital.

Thursday, February 18, 2010

Shock

Today was generally an uneventful day. Yet again, I was feeling tired all day and at 8pm I decided to go to bed. I'd just settled down when I thought I heard my mobile ring. As I recognised the ringtone as belonging to my parents, I got up to check and found a message from my dad. Unlike my mother, if he sounds concerned, it is going to be genuine so I rang him back.

Then came the great shock as he told me my mother's had a major heart attack and is in the Coronary Care Unit. Even though I have a rocky relationship with my mother, this news hit me hard and the first thing that went through my head as he said "major heart attack" was that she was dead. As my parents think I'm away until tomorrow night, I couldn't do anything like go round there as it'll blow my story out of the water, besides, I'm still not sure I can drive and I've taken my evening meds so there's no way I should be driving.

Luckily, I could call up my good friend who calmed me down and told me things to do such as phoning the hospital to see how my mother is and getting them to pass on a message to my mother. Much as I detest the woman, I do feel sorry for her for being so ill - it's not something I'd wish on anyone especially something a frightening as a heart attack.

The hardest part is probably yet to come as my dad has asked me to not do anything that would stress my mother. Given the nature of our relationship, this could be quite tricky but 'll give it my best shot. Maybe this will be the turning point in our relationship.

Wednesday, February 17, 2010

A New Routine

My first night back at home was quite good, I was so exhausted that I went to bed shortly after 8pm and didn't wake until after 10 the next morning. I'm still struggling with constant tiredness although I'm a little more alert this evening. The tiredness seemed to hit me mostly during the day when I've struggled to find things to keep myself occupied.

Things sort of picked up this afternoon when my Sky box appeared to die. Luckily, I've got it insured but it turned out all I needed to do was a reset which unfortunately wiped everything I had left to watch. At least I wasn't left without one of my major lifelines! I also finished the piece of music I started writing about 10 days ago and transferred it to my iPhone so I can listen to it wherever I am and decide on any changes. It's been a while since I added any of my own pieces to my iTunes library and was pleased to see I've got over half an hour of music on an album. Maybe one day some of it will get a public performance (one of the pieces has been played in public in an earlier version).

My friend phoned this evening to check on me and it felt strange to talk to someone. Over the last week, I got used to talking to people frequently through the day, now, after only one day, I'm finding it strange to talk to one person. I'm also falling into bad habits with my eating already as my friend told me I hadn't eaten enough today as I'd only had a banana since I got up. Sometimes, trying to manage everything on my own without the prompts I was getting last week is very difficult.

Tuesday, February 16, 2010

Back home

well I'm now back home after my week away. Leaving was much harder than I thought. To begin with, my last day was just like any other day there then I texted a friend to say I was all set to leave and the tears started. I guess it was the thought of leaving the new friends I'd made. I've certainly learned a lot from this week away. Most of all, I've learned that I'm actually much better off when I'm around people and I can cope with having people so close to me. Before this break, I thought I was best off being a solitary person and I could never live with other people.

It didn't take me too long to get used to being back, I've already been online ordering more clothes and software and am gradually catching up on all the telly I recorded over the week. I'm not sure how I'll manage with the change of sounds and lack of people but it's going well so far at least I can now smoke indoors, something I've not been able to do all week and I don't seem to be feeling as tired as I was this morning. I'm hoping that the benefit that I got from this week will carry on, everyone said how much more relaxed I was by the end of my stay, now if only that feeling will stay with me!

Saturday, February 13, 2010

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.

Monday, February 8, 2010

Counting the hours.

This time tomorrow, I'll be relaxing in respite care. Or at least, I hope I will be. The nurse that came today was surprised that no-one had told me what the travel arrangements will be. Sadly, she didn't know either so I've got to wait for a phone call tomorrow morning to find out. Unlike last month, when I first thought I was going, I've been quite relaxed about packing and still haven't got around to doing it. Maybe I'll leave it until later when there's nothing on the telly!

Today has been another one of those mixed days. I walked down to the chemist first thing to collect my medications only to find that the long list from the doctor's still hadn't arrived even though I put the request in a week ago. On the way back, it started to snow a bit and as it was very cold, I didn't fancy another walk later to collect again. First of all, I had to locate the prescription which turned out to be still at my doctor's surgery. For some reason, they'd not put it in the box for the chemist to pick up (time to bash head against a brick wall). Everything turned out okay in the end as my friend offered to pick everything up for me later and bring it round to me.

The rest of the day has flown by as I spent most of it playing around with my upgraded music writing software after sorting out all the difficulties with it over the weekend. I'd forgotten how good it felt to write music and while my work will probably never be played by a great orchestra, it felt pleasing to me. Even that emotion which is so simple to most people is a good sign for me as I'd been feeling fairly flat for most of the time.

The nurse arrived in the early evening with my medication and to check on me. This week, some of my medication has been increased which I found slightly puzzling. It also means I'm on a higher dose from tomorrow which could make respite interesting. At least it means I'll be knocked out at night as I've been given an even higher dose at night. The nurse was able to answer a lot of my questions about respite which has put my mind slightly at rest. However, as I told her, I'll be stressed and anxious about it no matter how much I know until I get there and see it all for myself. Wish me luck!

Sunday, February 7, 2010

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!

Saturday, February 6, 2010

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.

Friday, February 5, 2010

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.

Thursday, February 4, 2010

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!

Tuesday, February 2, 2010

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?

Monday, February 1, 2010

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.

Sunday, January 31, 2010

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!

Thursday, January 28, 2010

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.

Wednesday, January 27, 2010

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.

Friday, January 22, 2010

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.

Monday, January 18, 2010

Crisis Point

Christmas has been and gone for a while now. Surprisingly, the day itself went okay with nothing to cause me too much distress. As the New Year began to surface, I am told things started to go wrong and the worst parts of my illness hit me like a 10 ton truck.

I spent New Year's day with my best and only true friend and at some point in the afternoon we had what I now call "the conversation". I think there were a lot of probing questions from my friend which led to me disclosing some old, deep and very painful details that I've never told anyone else before. At the time, it felt quite cathartic but I was very anxious about my friend's opinion that I needed to deal with this in a theraputic environment.

My friend was prepared to speak to my care co-ordinator about "the conversation" as I was very reluctant to experience the tearing apart of my heart again. Call it bad luck or just fate but my care co-ordinator was on sick leave for almost a week and, as I didn't want to talk about such an intimate subject with someone who didn't know me, I was left with a huge mess in my head. Combine that with no activities as all my groups were cancelled due to the holidays and a disaster was bound to happen.

Aspects of my illness can be like a ninja with no sight or sound until it's got me by the throat. By the time I got to see my nurse, it seems I was in the middle of a full blown psychosis. Most of the time I'm accompanied by one of my tormentors from my youth and he has new and vicious ways of torturing me.

Wheels have now been put in motion that seem to be out of my control and I've been on anti-psychotics for almost a week. While they do quiten the noises in and around my head, they also have quite debilitating side effects. I'm no longer safe to drive, I need to use a walking stick if I walk outside as my balance is poor and my high blood sugar levels (along with the stress) have given me a mouth infection.

Today, I finally admitted that I'm not safe on my own and have asked for serious help. I no longer care about my family finding out which probably means I'm more ill than I think. My nurse has suggested a respite bed at a care home as it's probably more theraputic than the hospital ward and i'll know by tomorrow which one I'm going to the day after.

To be honest, I'm relieved that I'll be somewhere where people can keep an eye on me. The only question is, can I keep myself safe until then?