Healthy Living: Self Monitoring Your Schizophrenia
Why it’s important to keep a track of your symptoms
In other information sheets we have talked about the need for the person living with schizophrenia to take some personal responsibility for their recovery and to take a lead role in improving their life. Part and parcel of this approach is that they also learn skills in managing their wellness. A key element in managing your condition is to be able to monitor it. You need to know when things are going well and when things are beginning to slide so that you can activate your coping plan. All too often we do not realise that we are not so well until we hit a crisis.1 Here is what one person living with schizophrenia, Catrina said about the importance of sleep: “I know the only time I get unwell is when I am sleep deprived so this is an important marker in keeping me well”. In addition, another advantage of having a monitoring system is that it helps you to describe to your doctor or community psychiatric nurse how you have been since you last saw them in more precise detail.
How to start monitoring your symptoms
Monitoring needs to be more than just a brief cursory view of your feelings. You really need to spend some time each day or week (never less than weekly) carefully questioning the extent and depth of your symptoms and how well you have coped with them.1
Of course different people experience different symptoms and so your monitoring system will be very individual to you. However there are a couple of questions that are common to all people living with schizophrenia and these are the ones you should ask yourself first:
- Have I taken my antipsychotic medication?
- Have I taken the correct dose each day?
- Have I washed (and shaved ) each day?
- Have I done my domestic chores?
- Have I attended all of my appointments?
- How good have I been at getting up each day (night)?
Next you can ask questions about the individual symptoms that have been giving you problems for instance:
- How have the voices been?
- Have I had any paranoid thoughts?
- Have I had any thoughts about colours?
It is a good idea to write these questions down so that you remember them. Some people find it useful to give each questions a score say good, medium or bad or a number score. Using a number score means that you can add up all of the individual scores to give you an overall score of how well you have been that day or week. By keeping a record of your scores you would then be able to spot any trends. For instance if your score has been getting slightly worse over the last couple of weeks then that would give you early warning of a crisis coming up in the near future in time to do something about it. At this point you may want to go and see your doctor or Community Psychiatric Nurse to ask about increasing the dose of your medication temporarily or making an additional appointment to see your counsellor.
It is also a good idea to monitor your stress levels as well as the levels of positive or negative symptoms as periods of high stress will often lead on to a worsening of your symptoms.
One method of monitoring schizophrenia symptoms
Below is a score sheet used by one person with schizophrenia which follows the method we have described here. This person has suffered badly from paranoid delusions, voices and also got hidden messages from colours and from car number plates. Many of his mad thoughts took on a religious dimension so he spent a lot of time going to church. He has identified all of these factors in his monitoring sheet and gives each one a number score between minus 10 and plus ten.
Good factors are given a plus and bad factors a minus so the higher the number the worse the problem. These scores are added up to give an overall psychosis score for the week which he keeps a record of so that he can tell when his wellness is beginning to slide. In this system the higher the score the more unwell he is becoming and the greater the danger.
A. Psychosis Score
|1||Have I done my weekend domestic chores?||-1|
|2||Have my done my mid-week domestic chores?||-1|
|3||How many days have I taken anti-psychotic medication?||-7|
|4||Have I taken the correct dose every day||-7|
|5||Have I been to all of my appointments||-7|
|6||Have I washed and shaved every day?||6|
|7||Have I had thoughts of suicide or self harm||1|
|8||How many sleepless nights this week?||2|
|9||Have I had any paranoid thoughts?||3|
|10||Have I experienced colour symbolism?||0|
|11||How many times have I been to a church?||1|
|12||Have I experienced coded messages from car numbers?||3|
|13||Have I heard voices?||3|
|14||Have I experienced hidden messages in conversations?||0|
|15||Have I experienced hidden messages from TV programmes?||0|
|16||Have I bought things I didn't want or need?||0|
|Total psychosis score||16|
B. Stress Score
|1||Have I felt stressed this week?||5|
|2||Have I had any morning anxiety this week?||2|
|3||Have I had anxiety during the day this week?||0|
|4||How many sleepless nights this week?||2|
|5||How many vallium have I taken?||1.5|
|Total stress score||10.5|
This is just one example of a monitoring system that works well for this person since he is naturally quite good with numbers. You may be able to come up with your own system that will suit your own symptoms and experiences and may use a different scoring system such as colours based on a traffic light system.
One advantage of using a monitoring system such as this is that you can use it to describe to your doctor how you have been in more precise terms than if you were relying on words alone. If you can explain to your doctor that you are concerned because your psychosis score has doubled over the past four weeks it gives him a very precise and measurable guide to your state of health when you visit him.
WRAP: Another method of monitoring your health
Another approach to monitoring is set out in the WRAP (Wellness Recovery Action Plan) system2 which was devised in the USA by Mary Ellen Copeland and is widely used by practitioners in the UK. WRAP is a recovery strategy in its own right but it has some guidance on self-monitoring as well. WRAP suggests monitoring in two ways. First of all by identifying triggers that from experience you know are likely to lead to a worsening of your symptoms and secondly by looking for early warning signs of your health worsening.
Triggers could include work stress or family friction. Early warning signs could be things like anxiety or a lack of motivation. The WRAP system advocates reviewing early warning signs and identifying triggers to tell you when you need to take action to prevent your symptoms worsening.
Monitoring your condition is the first step to playing a lead role in managing it. You need to be able to spot the signs that you are becoming unwell and you need to know what to do to stay well. These methods are only two examples of monitoring methods that have worked for some people. You may need to develop your own system that works better for you and your condition.
1. Author’s personal experiences.
2. Copeland M E, 1997, Wellness Recovery Action Plan, Peach Press.