There may be times during your illness when going into hospital is the only option due to severe dehydration or weight loss.
Although it is not easy being in hospital it is nothing to be scared about. Many severely affected people have to go in at some point and they get through it.
Before you go into hospital make up a bag of things you will need. If you are well enough to do small activities then take in some things to do.
Survival Kit - Items to take with you.
Being in hospital is very tough for severely affected people and carers alike. Suddenly being surrounded by doctors and nurses twenty-four hours a day can be very difficult, especially if they don’t understand ME.
It is hard trying to explain a medical condition to the very people who should understand; but this is often what needs to be done. Don’t feel intimidated by them, you know the condition best, so tell them what you want/need. They may not be happy; but you’re the one that will suffer if you allow them to force you into doing something that you can’t.
If the doctors or nurses are talking to you for too long and you start to feel ill ask them to leave you for a while so you can rest, keep yawning to add emphasis! Feigning sleep also helps if you need some peace. It is hard to tell if your eyes are open or not behind dark glasses or a mask!
They may try to pressure you into things, like having a bath or washing your hair; but stand your ground. You will learn to tune out when they start on the same subjects. Be firm but polite; try not to upset them, as this will make things much harder. Explain to the doctors and nurses what your symptoms are and why you have to do what you do. Give them leaflets and books on ME to prove you aren’t making it up.
Sometimes it helps to have an ME specialist talk to the medical team about ME, as they believe it more coming from a trained professional. Contact an ME charity to see if they can put you in touch with someone who can help.
The more we educate people the easier it will be for us and severely affected people who come after us. Remember not all doctors and nurses disbelieve in ME. You will meet some lovely, caring people who understand. Get them on your side and things will be a lot easier.
Hospitals can be very noisy places so it is a good idea to try to get a single/side room or at least ask to be in the corner of a ward away from most of the daily hustle and bustle.
If you are under eighteen your carer maybe allowed to stay in your room with you at night. Sometimes a camp bed is available, but it is better to take in your own.
Get your carer to help you use the toilet etc., and offer to change your bed for you as this makes life easier for the nurses and reduces contact. If your carer has to leave you to go and get food or to use the phone then try and do it when the nurses are handing over at the end of their shifts or when they are taking their meal breaks. They are so busy that you will be left alone in peace.
It is important to feel comfortable in hospital, try and make your room/area as like your own room as possible. Tell your family and friends you are going into hospital and ask them to send you pretty cards. It’s not only nice to receive cards but you can put them up around you to look at. Bring any favourite family photos, so you don’t feel so alone. Take in a cuddly toy to keep you company and you can also use it as an extra pillow or neck/arm rest.
Wear dark glasses/masks and earplugs to cut down on stimulation and to help you sleep/rest whenever you need to.
If you use special pillows or beanbags at home then take them with you. If you need hot water bottles then bring them. The hospitals don’t like them so it is advisable to get a carer to quietly do them in one of the bathrooms. If you are discreet you can get away with a lot of things.
Hospitals often have ice machines, which are a godsend if you are having problems drinking. Get your carer to find one and keep getting supplies.
If you have a drip, wear a cardigan back to front, with your good arm through the sleeve. Change the cardigan regularly, thus giving the impression you are changing all your clothes.
Before having a canuler put in or blood taken, make sure you warm your arm up under the covers. This will cause the veins to swell and therefore make it easier to insert the canuler. It is not as scary or painful as it sounds so don’t worry! The more relaxed you are, the easier it will be.
The bedside cabinet is on wheels so move them round the bed, so that they are on the side of your drip-free arm, allowing you to reach things easier.
It can be very difficult if your sleep cycles when you are in hospital. Get your carer to ask the nurses to do your temperature and blood pressure when you are awake, rather than waking you up.
If possible get the nurses to leave tablets by you, so you can take them when you are awake and need them.
Tablets are a great way to drink lots of water in one go, thus increasing your fluid levels, so try to drink as much as possible.
If you suffer from very bad nausea some of the tablets can be given in suppository form. This does not sound pleasant, but is actually ok, don’t feel embarrassed, nurses do them for people all the time. It doesn’t hurt it just feels slightly strange. They are so easy you can do them yourself.
If you suffer from swallowing problems you can get special soft option meals made. See the hospital menu for details.
If there are any special foods that you eat then take in your own supply, for example chocolate buttons or grapes.
Carers should explain to family members that it might be difficult for them to call at this time, especially if they are trying not to leave the person on their own. Instead write general letters, which can be photocopied and sent to friends and relatives.
During your time in hospital you may or may not feel up to having visitors. Let people know your wishes and make sure that any visitors know that you can only see them for a short while and get them to leave when you ask.
Sometimes you don’t have to go into hospital to have a nasal-gastric tube put in. depending on your GP, you may be able to have it done at home, with regular visits from a district nurse.
The most important thing to do while you are in hospital is to try and stay relaxed, stress will make you feel much worse, although it is hard to avoid.
Look on your time in hospital as necessary for you to receive treatment that you couldn’t get at home. Concentrate on getting through the days and then go home to rest and recuperate.
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