Living with an Inherited Metabolic Condition

Introduction

This leaflet is for anyone diagnosed with an Inherited Metabolic Condition. It aims to help you understand some of the broader effects of living with a long-term disorder, and how you can manage these.

How living with an Inherited Metabolic Condition may affect you

Coping with a long-term health condition can be stressful, and can affect many areas of your life:

Your mood – you may feel sad, worried, helpless and angry

Your thoughts - worries can go round and round in your head, and you may worry about your illness getting worse, or about dying.

Your symptoms – tension can make pain and other symptoms feel worse

Your relationships – it can be hard to talk to friends and family about your illness

Your thinking – some conditions can make it harder to think clearly, which can add to stress and worries

Your day-to-day life, your employment and finances

Your treatment – worries and hopelessness can make it hard to stick to your treatment plan

What can help you to cope?

Talk to your friends and family about your worries. They may realise you are having a difficult time and be relieved to talk with you about it.

Talk to your doctor or nurse about your condition and your concerns. They may be able to help you understand your condition better, and to reassure you.

Look after yourself. Try to eat regularly and to do some physical activity each day.

Pace yourself – try to do one or two useful tasks and enjoyable activities each day. It is tempting to do as much as possible on days when you feel better, and to stop completely when you feel worse. Finding a balance works better in the long term.

Your sleep may be poor if you are feeling anxious or low. This happens to a lot of people and usually gets better as your mood improves. Remember that a soothing bedtime routine and reducing caffeine can help.

Patient groups can help you with information about your condition, and subjects like employment rights and benefits. Many people find it useful to talk to other people with experience of living with an Inherited Metabolic Condition.

Lysosomal Disorders Unit Psychology can help with:

Getting used to living with a health condition and adjusting to changes in your health

Assessing and understanding your skills and difficulties

Managing low mood and anxiety related to your health condition

Referral to local services for further input

We offer:

Telephone, video, or face to face appointments

Workshops and groups

Neuropsychological assessment and advice

Information and advice about other services

To find out more:

If you would like to find out more, please speak to your nurse or doctor, or get in touch with the LDU on 01223 274 634 or lducambridge@nhs.net