TB tips: coping with isolation
During the course of isolation you may lose an appreciation of the passage of time. Every day feels the same as the one before, and it may be difficult to decide what happened when. It can become very confusing. To combat this:
* Make sure that people close to you know where you are!
* Is there a clock in the room? If not ask if you can have one or get someone to bring one in. Ideally, try to get a clock that doesn't tick. I found that the incessant ticking of the clock eventually drove me 'round the bend - I ended up pulling the thing off the wall and smashing it. It never ticked again, but I didn't know what the time was either.
* Try and establish some sort of routine.
* Open your blinds or curtains when you get up, and close them when you go to bed. Sitting in a darkened room you may eventually confuse day and night.
* If you are well enough, get up and get dressed.
* If you have a telephone, great! Find out if you are liable for the cost of any calls made. If you don't make any outgoing calls, you can still receive incoming calls and it won't cost you anything.
* If there isn't a telephone in your room, mention it to the staff. It is important to be able to communicate with friends, family and maintain contact with the outside world. The staff should understand and hopefully sort this out. Remember, if you get this organised, there will be a telephone ready for the next occupant of the room.
* If having your own telephone is a real problem, see if there is a pay phone you can use. There should be a pay 'phone trolley on the ward which can be brought to your bed. Obviously, this makes receiving incoming calls problematic. Ask the nurses if they can take any messages for you, and give the ward number to your friends.
* You may try rearranging the furniture in your room. This helps to personalise it for you and may return a certain sense of control.
* If you have a television in your room, try to watch scheduled programmes e.g. the Six O'Clock News. These will act as regular markers, helping to structure your day.
* Most hospitals have someone who comes around selling newspapers and magazines: make sure you are not left out.
* You may feel that you have lost control over many aspects of your life, but you can still exercise some of the rights that we all enjoy. If you are isolated, there will be warning signs on the outer door telling people what to do when they come in. Make one of your own that says: "Please knock before you enter." It is a strange contradiction of isolation: there is very little privacy. There is nothing worse than drying yourself down after having had a shower, and a domestic decides she wants to clean your room.
* Ask someone to bring some personal effects from home e.g. pictures or posters. This may help to further personalise what might otherwise feel like an austere little cell.
* Keep a diary, draw, or do some other activity to make the time pass creatively. It is good to feel you are achieving something.
* Some isolation rooms have a kettle and a fridge so that the occupant can make their own tea. It's not nice to have to ask for a cup of tea every time you want one. If you feel well enough, it gives you a little more independence.
* If you are a smoker like me and you are allowed to smoke (if you are in a negative pressure room then they can hardly complain) make sure that you have ample supplies of cigarettes. It is difficult to get through the day with no cigarettes if no one is going to visit, and the demon of addiction starts nagging you!
* If you are to be isolated for a while then you are going to need clean clothes. Ask the nurses if they can sort out your washing for you. There are usually facilities for doing this. (Make sure you mark your clothes in some way so that they can be identified. I ended up having a rather charming, but greying pair of women's knickers being handed back.)
* If you have some space in your room, you may feel like doing a little exercise. Ask if you can see the physiotherapist. He or she may be able to offer some equipment and / or advice. I was fortunate enough to find the exercise bike. Isolation compounded with the weight loss due to the TB leads to muscle wasting. Try to keep some muscle tone.
* Ask to see a psychologist regularly if you are having trouble with the combination of isolation and side effects. Frustration, resentment and loss of control are common feelings, and they may be able to help you deal with them.
* Remember, you are undergoing treatment. At times it may seem hard, but a relatively short time of discomfort could ensure a complete return to health.
* Try to make an effort with you personal appearance. It is important for self esteem, and it takes up time.
* Fluorescent lighting gives some people headaches. You should be able to bring in a bedside lamp or other lighting from home.
