Hospital admissions for young people with M.E. are rare, but what if you find yourself in a hospital department having tests or staying overnight or longer in a ward or unit?
If you're a child or young person with M.E. there are several reasons you might need to visit a hospital. For example, your doctor may decide that more tests would be a good idea and these need to be carried out in a hospital. Or they may decide that you need more medical help than you can get at home. Whatever the reason, here are a few things to bear in mind to make your visit or stay a success.
If you're visiting the hospital for tests or if you have an appointment with a specialist, be prepared for delays. Take drinks or snacks unless you have been asked not to eat or drink before a test or procedure. Take something to read like a good book or magazines. A walkman can be a good distraction or ask someone to go along with you who is good company and helps you to relax, or takes your mind off things.
If you don't understand the tests or procedures, ask the person who is carrying them out to explain them to you. The health team will expect a young person to be involved in decisions about their care so don't be afraid to ask questions.
If you feel well enough, discuss your treatment with your parents and all the different people involved in your care. As well as doctors and nurses you may also meet occupational therapists (OTs), physiotherapists (physios), psychologists, pharmacists, dieticians, radiographers and so on. Find out more by checking out the medical team.
If you're staying overnight or longer and you're sensitive to light and noise talk to your nurse. Some wards have quieter side rooms or an area that is better for people who are light and noise sensitive. Headphones and ear-plugs can be a good way of blocking out some of the noise. Drawing curtains and blinds can also help create a more relaxing atmosphere but you'll need to compromise if you're sharing a space with other patients.
You may find that visitors, staff members and even other patients are very talkative when you don't feel up to it. If you're getting exhausted and it all gets too much, explain that you are too tired in a polite but firm way or get a parent or carer to do this for you.
Talk to your nurse about any special dietary needs you may have. If you're feeling really weak, get a parent or carer to do this for you. Hospitals should offer patients a choice of food which is healthy and which suits all cultural needs. Hospital wards usually have a kitchen with a fridge and microwave for parents, carers and patients to use.
If the team who are looking after you haven't got much experience of M.E. patients it may be helpful to offer a copy of the quick-reference guide 'Guidance on the management of CFS/M.E.' or the more detailed summary of the 'Chief Medical Officer's Report', both available from Action for M.E. E-mail us for a copy.
Go prepared!
Here are some things you can take with you:
Read what other young people with M.E. have got to say about being in hospital in Reality Bytes.
Information produced July 2003
Updated June 2004
