Living with Schizophrenia

Living with schizophrenia is one of the hardest challenges anyone could face. Your life is disrupted by intrusive thoughts, voices and visual hallucinations which can be disturbing to say the least. And then society expects you to deal with life’s trivialities like washing, earning a learning and maintaining social graces. But the reality is that if you want to live a happy fulfilling life, you have to take responsibility for it, and that means also taking responsibility for your illness.

Know your illness

Living with schizophrenia means that you have to know your illness. It is important to educate yourself about schizophrenia and in particular about your illness and symptoms. Sit down and discuss these with your doctor, and don’t wait till your doctor approaches you. Get to know what your relapse signature is. The relapse signature is that set of symptoms and signs that would alert you and your partner/family/close friends that you might be heading for a relapse. It might be warning signs such as sleeplessness, pacing around the house, or increased preoccupation with a particular thought. What this would do, is prompt you or your partner/family/friend that you need to be seen by your doctor. Often, knowing what your relapse signature is, will prevent another admission to hospital, or one that is unnecessarily prolonged. Your doctor might adjust the dose of your medication, or admit you for a short stay to hospital. By ignoring these warning signs, you are risk your mental health.

It is important to know that researchers view acute psychotic episodes as periods that are “toxic” to your brain, when there is an ongoing time of damage occurring.

Comply with medication

Living with schizophrenia means it is vitally important that you continue your medication, even when you have recovered from an acute episode of psychosis and feel well. Studies have shown that the risk of relapse is high if you stop your medication prematurely. After a first episode of psychosis, it is recommended that you continue with your antipsychotic medication, and then only consider stopping it when you have been free of symptoms for at minimum period of 2 years. Other factors which also need to be considered are the severity of symptoms and how long symptoms were present before treatment was started. If symptoms were severe, eg if there was an attempt at suicide, or present for a long time before treated, or prolonged hospitalisation was needed, then it might be wise to continue taking medication for longer. Such decision will be individualised according to the patient.

The recommendation following a second episode of psychosis will again vary. Most sources will recommend remaining on antipsychotic medication for a much longer time, perhaps even lifelong. Again the optimum time period is not known.

After a third relapse, almost all sources will recommend lifelong treatment.

Being compliant with medication means that you have to take all the medication, all of the time. You cannot skip doses. Even partial compliance can lead to a drop in blood levels of the medication and a relapse of your schizophrenia. If you are having troublesome side effects then speak to your doctor before adjusting your medication. If your doctor does decide to decrease your dose, then it will be done within a more supervised environment.

Switch to a depot. It will drastically improve your compliance rates and has also been shown to improve relapse and hospitalisation rates. This will definately improve your living with schizophrenia.

Ask your doctor or pharmacist about over the counter medications and if it might interfere with your antipsychotic medication.

See your team regularly

See your doctor and mental health on a regular basis. Getting to know them will make it easier to discuss problems.

Drugs and alcohol

Living with schizophrenia means that is vitally important that illicit drugs and alcohol be avoided. Illicit drugs including cannabis might give short term relief, but in the long term, lead to chronic health problems and relapse of schizophrenia.

Alcohol interferes with the metabolism of antipsychotic drugs and can lead to decreased effectiveness of the antipsychotic medication. As is well known, alcohol can also lead to chronic health problems.

Alcohol and drugs are not compatible with compliance.

Avoid situations that will expose you to alcohol and illicit drugs. Recognise that often your mind will “subconsciously” undermine your efforts at abstaining from alcohol and illicit drugs.

If you are having difficulties stopping, speak to your doctor or mental health team about getting help.

Stop smoking

The vast majority of schizophrenia patients will smoke. The link between the two is unclear. Theories range from treating anxiety to self medicating symptoms, to treating side effects of the medication. Whatever the reason, it is vitally important that patients try to stop smoking, or minimise the harm by reducing. Rates of strokes, heart disease, cancers and chronic lung problems are increased in patients who smoke, and smoking is responsible for a large amount of morbidity and mortality in schizophrenia patients.

Physical health

Whilst living with schizophrenia, is important to look after your physical health which means that you must try to maintain a proper balanced diet and physical exercise. This is important because antipsychotic medications have a propensity to cause weight gain, high cholesterol and diabetes. Even walking briskly on a daily basis will be beneficial to your health.

Your doctor should be screening you on a 6 to 12 monthly basis, looking at your weight, blood pressure and checking your bloods and screening for diabetes.

Avoid high EE situations

EE stands for expressed emotion and refers to situations where there is a high degree of emotional volatility where patients get conflicting messages. It may be difficult to avoid situations like it, if it is happening in your home, but it would help to recognise these situations, then you could remove yourself from it, albeit only for a short while.

It is also the responsibility of carers and other family members to recognise this way of communicating and to try to avoid it. It is often hard to do, since this way of communicating is often entrenched in the family dynamics.

Living with schizophrenia means it is important that you have a structure and focus to your day. Your carers and family will no doubt try to help you achieve this, but this will come to nought if you do not take some initiative. Your day should begin with enough rest and sleep. Erratic sleep patterns is stressful to the body and I believe can predispose to relapse. Try to go to bed at a decent time every night, and get up at a decent time. If you are over sedated on your medication, speak to your doctor about it.

Go back to work. This might mean taking on less responsibility, with a longterm view of increasing it again. Discuss this with your employer. This decision will be individualised and collaborative. Be aware that too much stress can lead to another relapse again.

Living with schizophrenia means that, just like anyone else, you need to develop something meaningful in your life and do things which are important to you. This might be socialising with friends, gardening, looking after animals, volunteering, community work, sport, mentoring other patients or advocating for other patients. Anything that brings meaning and reward to you.

Arts, dance and music therapies have provided wonderful opportunities of self expression to many schizophrenia patients.

Join a local Support Group. Search the internet, ask your local mental health team, or ask other service users. Self management courses are available locally.

Speak to your mental health team about available therapies. Individual, group and family work can be done looking at coping strategies, problem solving, family relationships and high expressed emotion.

Develop a Care Plan with your mental health team. This will structure your care, set out your goals, and describe what needs to be done in a crisis.

Living with schizophrenia can be challenging, but you need to take control of it to overcome it.
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