Coming to terms with my illness and what it has caused.
It’s taken me a long time to recognise and actually accept that I have been/am unwell. I have schizoaffective disorder and although it feels strange writing that, part of me knows it is true. But, it’s terrifying. I don’t fully know what is psychosis and what isn’t, there are things that I’m not worried about any more, which people told my was part of my illness but I am still constantly stressed outside about the Research, they say horrible things at times to me. I think things are progressing and it feels strange to say this, but I’m scared. I have spent so much of the last few years in hospital. My moods have been stable for the longest that they have been since I first became ill. I get down, I get hyperactive, but never to the degrees that I have been before. I feel sad though, at the time lost, the time it will take to recover, the horrendous scars I have put on myself. The sadness now, feels intensely raw, its facts that I can’t run away from or hide from, the horrible memories of being restrained and such in hospital. Since I had my diagnosis confirmed by my psychiatrist I’ve found myself lying in bed thinking about it, all the horrible situations that arose in hospital, all the a&e visits and the overdoses and just ALL OF IT. I feel scared about the future and whether it will bring more hospital admissions. I’m pleased that I am being re-started on clozapine again, it was the best tablet for me but at the same time, its a bit scary to say goodbye to the ill me and take those steps forward. I’m scared the horrendous appetite will start again but to be honest, I want my freedom more than I care about being slim. I am scared of the past, the present and the future. I'm excited and I hope things will improve but i'm filled with dread at the same time, anxiety and fear. Does anyone relate to that? Has anyone been scared about progressing? Really shocked when they think about their ill moments? I’m sure there are people but I would really appreciate you sharing them with me.
Sometimes, I just feel the need to talk about it, to get it out of my system.
Last edited by Cedrus : 20-01-2011 at 09:44 PM.
Reason: typing errors
sticks and stones may break your bones but words can tear your heart out.
I want you to know, Ive read this and thought about it, but its late here but i will reply tomrrow ! please take care. and im in the same boat as you <3
I know how it feels. I just recently been told I am bipolar. I went 4 years without anyone telling me and I find out through a letter my doctor wrote for student accommodations for "depression" that everyone had told me and "mood disorder" but never used or mentioned the word bipolar. I was kind of surprised I guess I thought of it as being not as accepted as depression has become or at least to me. You see the commercials for it all the time on tv. Never about any other mental illness. I am scared as to what the future holds for me because of this. I have also been in the hospital multiple times over the past 2 years. I just started to take something for the depression part and I did gain weight but I am going to keep taking it as long as I don't become unhealthy overweight from it just because it is one of the first meds to actually help with that part. I can still tell when I am going through a manic or depressed state but its not as bad. However the manic I don't really like because I know after that I just drop really low. You can do it though. I have looked at it as just helping me understand why I did the things I did rather than not knowing why I did the things I did or feel the way I felt. It has helped me grow as an individual and understand better what my limits are as far as school and work at the same time. I can't be a full time student and work. You just have to take it one day at a time. You can't stress about something you have no control over or you won't know about till later on in the future. Things will work out the way they are supposed to for a reason good and bad.
So I'm adding this because I was sitting at my computer and just reread your first few sentences. It wasn't till that day I read the letter my doctor wrote that it hit me that I had been unwell, that maybe there really was something.
Last edited by strawberry11 : 21-01-2011 at 05:56 AM.
Reason: after thought
I can relate a lot to what you are saying. Looking back, the extent of my illness frightens me. I have done some incredibly stupid and shameful things. I'm not proud of it but I have to rationalise with myself that I was ill at the time and not myself. I'm bipolar btw.
Coming to terms with a life-long illness is difficult and takes time and acceptance. I'm not sure I'm there yet but I'm working on it. The hardest part for me is the confusion over who I actually am. Where the illness stops and I begin. So many great and drastic decisions (and some very foolish ones too) about my life have been made when I've been unwell. Some of the things I've experienced directly contradict everything I believe.
It can be very confusing at times.
I understand your fear about the future too. But you can have a very full and rich life even with an illness like yours.
Take care.
Last edited by mikey : 21-01-2011 at 08:18 PM.
Reason: spelling
There are, it has been said, two types of people in the world. There are those who, when presented with a glass that is exactly half full, say: 'This glass is half full'. And then there are those who say: 'This glass is half empty'.
The world belongs, however, to those who can look at the glass and say: 'What's up with this glass? Excuse me? Excuse me? This is my glass? I don't think so. My glass was full! And it was a bigger glass!
That was well written. Memories can be very difficult at times. I get flashbacks too of being restrained and IMed in hospital, police encounters etc. Have you considered asking for further help than just meds? I've seen clinical studies that say medication alone doesn't work as well as medication and psychotherapy combined, although I know it is difficult to get psychotherapy on the NHS (waiting lists). The dread will go once you recover and look back and be thankful.
PM me if you want a PDF copy of the ICD-10or the Mental Health Act 1983/2007. I ALSO HAVE THE DSM-V BOOK and am a pharmacology student.
I have a visual impairment / neurological problems so I need people to type in clear text and no funny fonts. Also excuse any typos, my vision blocks things out.
I have autism and have problems communicating, PMs included.
Just becasue I type well doesn't mean I speak well. I am only part time verbal.
Thanks for the replies and the feedback. Still when I think of some of the ways I acted in the past it makes me embarrassed, I know every could see I was unwell but to be that out of control scares me. I'm working with my therapist at understanding and acknowledging things will take time for me to recover. I just hope I don't get like I did last year again in the future. Sometimes I find it hard to know where I begin and the illness ends too, I've been isolated for the last few years and have sort of lost my interests. I am trying to find that in myself at the moment. Pleased I will be starting a horticulture course with the mind charity in my area, it will be positive to try and start getting out again =]
Just saw that bottom post now. I'm in psychotherapy at the moment, have had the same therapist since Jan 08 and we have progressed a lot in that time, but things have been really difficult too. I find things hard because as a result of the social isolation caused by being unwell I now have extreme anxiety outside - I think my last admission made it worse. I think I've grown though, which is positive. Its just hard that the memories will always be there somewhere.
Last edited by Cedrus : 21-01-2011 at 10:25 PM.
sticks and stones may break your bones but words can tear your heart out.
Thanks for the replies and the feedback. Still when I think of some of the ways I acted in the past it makes me embarrassed, I know every could see I was unwell but to be that out of control scares me. I'm working with my therapist at understanding and acknowledging things will take time for me to recover. I just hope I don't get like I did last year again in the future. Sometimes I find it hard to know where I begin and the illness ends too, I've been isolated for the last few years and have sort of lost my interests. I am trying to find that in myself at the moment. Pleased I will be starting a horticulture course with the mind charity in my area, it will be positive to try and start getting out again =]
Just saw that bottom post now. I'm in psychotherapy at the moment, have had the same therapist since Jan 08 and we have progressed a lot in that time, but things have been really difficult too. I find things hard because as a result of the social isolation caused by being unwell I now have extreme anxiety outside - I think my last admission made it worse. I think I've grown though, which is positive. Its just hard that the memories will always be there somewhere.
You're welcome. I understand your embarrassment. I have had similar. I'm glad that you have your therapist to help you recover. The illness can take a lot away, but I still see that inner strength in you. Horticulture course sounds good. I think you will do well, but just give yourself time. Don't rush things. I've rushed things in the past and it hasn't helped.
PM me if you want a PDF copy of the ICD-10or the Mental Health Act 1983/2007. I ALSO HAVE THE DSM-V BOOK and am a pharmacology student.
I have a visual impairment / neurological problems so I need people to type in clear text and no funny fonts. Also excuse any typos, my vision blocks things out.
I have autism and have problems communicating, PMs included.
Just becasue I type well doesn't mean I speak well. I am only part time verbal.
Thanks Oly. I started today as you know and it went well =] I was nervous and shaky when I had to talk to people but whilst I was mulching (laying down compost) I felt okay. It was nice to be out with nature too. Had a slip up last night with my self harm as I felt I had to prove to certain people I am still strong enough to carry out the tasks if warranted. Have been worried about the possibility of me giving my dad cancer - I'm confused about this and so is my dr but apparently their knowledge is a lot more extensive than what we currently know. Am stressed and anxious about my physical health too :/ I'm just taking things slowly, it is the best way to do things. Will be going in for a half day on monday.
I think I will be starting the clozapine. Got really scared today because the pharmacist said they didn't have the green light on my bloods and I thought there was something seriously wrong with me. Was getting scared I have a dangerous disease like HIV or something. Wanted to leave the gardens early but spoke to one of the tutors and she helped me be rational. Ended up speaking to the duty worker of the EIP (my sw is away so they are sorting it out) and they told me my blood tests were fine its just something about it not being sent to the right place. You know how it goes with the light system red signalling to stop clozapine abruptly etc. Turns out there was light colour at all as the clozapine clinic didn't receive it.
Overall today has been good though. Am trying to take control of this illness and take positive steps forward to look after myself. I've been thinking about everything I have put my family through though and feel really upset. I have caused them so much upset and stress. I was terrible when living at home but I guess I didn't have control over all of it. My relationships with them have improved since moving out.
Thanks for the reply. Sorry for the long update.
sticks and stones may break your bones but words can tear your heart out.
Thanks Oly. I started today as you know and it went well =] I was nervous and shaky when I had to talk to people but whilst I was mulching (laying down compost) I felt okay. It was nice to be out with nature too. Had a slip up last night with my self harm as I felt I had to prove to certain people I am still strong enough to carry out the tasks if warranted. Have been worried about the possibility of me giving my dad cancer - I'm confused about this and so is my dr but apparently their knowledge is a lot more extensive than what we currently know. Am stressed and anxious about my physical health too :/ I'm just taking things slowly, it is the best way to do things. Will be going in for a half day on monday.
I think I will be starting the clozapine. Got really scared today because the pharmacist said they didn't have the green light on my bloods and I thought there was something seriously wrong with me. Was getting scared I have a dangerous disease like HIV or something. Wanted to leave the gardens early but spoke to one of the tutors and she helped me be rational. Ended up speaking to the duty worker of the EIP (my sw is away so they are sorting it out) and they told me my blood tests were fine its just something about it not being sent to the right place. You know how it goes with the light system red signalling to stop clozapine abruptly etc. Turns out there was light colour at all as the clozapine clinic didn't receive it.
Overall today has been good though. Am trying to take control of this illness and take positive steps forward to look after myself. I've been thinking about everything I have put my family through though and feel really upset. I have caused them so much upset and stress. I was terrible when living at home but I guess I didn't have control over all of it. My relationships with them have improved since moving out.
Thanks for the reply. Sorry for the long update.
I'm glad that your gardening course is going well. Nature can be very therapeutic. Look after yourself and take things easy, but remember that the voices can't hurt your or force you to do anything harmful. I hear Voices a lot whenever its silent, but if I use my screen reader or listen to music, They calm down. Have you ever tried to make up a "contingency plan", i.e. "if the voices say this, than do this" to remind yourself what good things to do when you lose insight. It helps me. I've stuck one on my wall above my laptop.
I hope that you can start the clozapine, but I strongly doubt you have HIV. Are you sexually active? I'm glad that your support team helped you out. Clozapine can be scary stuff, but my textbook and my psych both say its the best drug out there. It could help me but I've got a possible problem with my heart (my resting heart rate is always over 100 and in the gym it sometimes goes to 180 despite me being rather fit), and my psych put me on 450mg last time which was too much for me.
I'm glad that your relationship with your parents has improved, but I know what you mean about feeling guilty. I assaulted my Mum several times and cut her hand open once during psychotic episodes. I think the best thing to remind yourself of is that the stuff you put them through wasn't intentional, and that it was your illness speaking out.
You're welcome. Text me any time.
PM me if you want a PDF copy of the ICD-10or the Mental Health Act 1983/2007. I ALSO HAVE THE DSM-V BOOK and am a pharmacology student.
I have a visual impairment / neurological problems so I need people to type in clear text and no funny fonts. Also excuse any typos, my vision blocks things out.
I have autism and have problems communicating, PMs included.
Just becasue I type well doesn't mean I speak well. I am only part time verbal.
I agree, 450mg sounds like a high dose to be on. I only heard of people going onto a dose like that after a few years of being on it (it being increased every now and again) It can be a pretty dangerous tablet so I understand them trying to settle people on smaller doses. When we were trying to re-start it last time i think the target dose was 250-300mg.
I have a meeting/assessment with the crisis team and the duty worker from the EIP tomorrow about starting it. Feeling anxious because I have to get my blood taken and just have been worried about having something wrong with my body. Trying not to stress too much, hopefully one of the workers I know well will be present. Had a horrible time out today whilst walking home but feel better I am home now. Fingers crossed it goes well tomorrow. Not sure what the outcome will be really. I have the gardening in the afternoon though and I am looking forward to that a lot =]
sticks and stones may break your bones but words can tear your heart out.
I agree, 450mg sounds like a high dose to be on. I only heard of people going onto a dose like that after a few years of being on it (it being increased every now and again) It can be a pretty dangerous tablet so I understand them trying to settle people on smaller doses. When we were trying to re-start it last time i think the target dose was 250-300mg.
I have a meeting/assessment with the crisis team and the duty worker from the EIP tomorrow about starting it. Feeling anxious because I have to get my blood taken and just have been worried about having something wrong with my body. Trying not to stress too much, hopefully one of the workers I know well will be present. Had a horrible time out today whilst walking home but feel better I am home now. Fingers crossed it goes well tomorrow. Not sure what the outcome will be really. I have the gardening in the afternoon though and I am looking forward to that a lot =]
I know, my psych rushed the clozapine increase too much. It was because I was refusing to eat due to being convinced I was being poisoned, and I spent a week in the same set of clothes and would never brush my teeth or hair. A nurse had to brush my hair for me (it was long then) =/
250-300mg is a more reasonable dose though. I only got bad side-effects when I hit 400mg I think.
Good luck with tomorrow's meeting. I hope that your blood workup comes out alright.
I'm glad that you're looking forward to gardening.
Keep us updated on how you're doing.
PM me if you want a PDF copy of the ICD-10or the Mental Health Act 1983/2007. I ALSO HAVE THE DSM-V BOOK and am a pharmacology student.
I have a visual impairment / neurological problems so I need people to type in clear text and no funny fonts. Also excuse any typos, my vision blocks things out.
I have autism and have problems communicating, PMs included.
Just becasue I type well doesn't mean I speak well. I am only part time verbal.
