Storing your medication

• There are ways of storing your medication other than just leaving them in their bottles in a carrier bag. Using containers such as a "dosett" box or "medimax" to store a day's supply of drugs allows you to see if you have taken the drugs.
• If you want to store or keep your medicines in a container or pack other than the one the pharmacist has supplied, always check it is okay to use boxes such as those mentioned above. Some drugs need to be stored away separately otherwise they may lose their potency. If you do take your medicines out of the pharmacy container and put the with other pills, it is best that you only do this with one day's supply.
• If you can't get the boxes, try sputum sample containers. Write the days of the week on them, indicating whether this is your morning or evening dose. They can easily be carried around in a handbag or pocket. If you don't want them to rattle, just stuff some cotton wool in the pot with the pills.
  

• Travelers with anticipated prolonged exposure to tuberculosis (e.g. those expected to be in contact with hospital, prison, or homeless shelter population) are advised to have a TB test before leaving the U.S. In case of negative result, the test should be repeated approximately 8-10 weeks after returning.
• Avoid exposure to known tuberculosis patients in crowded environments.
• To prevent the possibility of exposure to tuberculosis on airplanes, people known to have infectious TB are recommended to travel by private transportation (not by commercial carriers), if travel is required. Additionally, tuberculosis patients should cover coughs and sneezes to reduce spread.
• Vaccine: in developing countries, the Bacille Calmette-Guérin (BCG) vaccine is routinely used at birth. However, it is not routinely recommended in the U.S.
• Treatment: travelers and other persons who suspect possible exposure to tuberculosis should inform their health care provider to receive appropriate medical evaluation and treatment.

• Taking large quantities of pills may seem physically impossible to some. My advice is to set aside some time to take them. Bolting them down may result in you feeling nauseated, and you may even vomit. If you do have a problem with nausea, tell your TB specialist it may be possible to help you with this. Obviously, if you are vomiting you won't absorb any drug, and the TB may come back.
• Some people find it difficult to remember to take their medication. Try putting your medicine in a prominent place for example by your tea or coffee in the morning. You might also like to try using an alarm: a bleeping watch or a computer may help you remember. Encourage a friend or family member to help to remind you to take your medication.
• The most important thing with any drug therapy is forward planning. Always carry an extra dose of medication with you. Know when your prescription is due to run out and how to get more tablets. If you are going to travel, never keep all of your drugs in a suitcase in a baggage hold: always have some 'extra doses' on your person.
• I would constantly affirm to myself that the pills were doing me good, and that if I kept taking them regularly, one day I wouldn't need to anymore. Believe me when that day comes, you will be glad of your self-discipline.
• It may feel like your body really isn't going to cope with the pills you are taking. I found taking them with a yoghurt and a class of water helped them to go down. It also seemed to make the pills a little more gentle on the stomach.
• If you are a regular (or heavy) alcohol drinker, speak to your doctor about it. It is unlikely to be compatible with the medication you are taking. You may be able to get extra help.
• You may find you develop thrush in your mouth and / or throat. It is a common affliction for people who are immuno-compromised, or who are taking large amounts of antibiotics for a long period of time.
• You may have thought about trying homeopathic or other alternative therapies on their own. Forget it! Although these therapies are a useful addition to routine medication, they will not cure you of TB.
• N.B. Children with TB pose special problems. Try not to get upset: taking TB medication becomes very routine, and it could be made worse if you and your child end up fighting over it everyday. I would suggest resorting to plain old bribery: try using sweets after they've had their pills, but don't mix the two. You might promise them a big surprise at the end of their treatment. Discuss any problems, such as point blank refusal, with your doctor. Some TB drugs come in syrup form.
• Keep all medication out of the reach of children.

• I am not going to lie to you. Some of the side effects are really horrible. Especially the older and second-line treatments. I personally needed counselling to get me through. There were many times I sat there on the floor in tears surrounded by bottles of pills.
• In my experience doctors are very good at treating conditions such as TB, though they don't always grasp how side effects make people feel. If your doctor seems unsympathetic, ask to see a counsellor or a clinical psychologist. Sometimes they know other ways of dealing with side effects.
• If you are not already on the Direct Observed Therapy programme, ask to be put on it. I eventually found the programme provided much needed emotional support.

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.
  
  
  

TB is curable - If you feel you have been exposed to TB by someone else don't panic!

• If you are in contact with someone who has been diagnosed with TB you should tell your doctor so that he can carry out appropriate tests to see if you need treatment.\

• Depending on your personal circumstances, your doctor may feel it is appropriate to put you on some medication to prevent you from developing TB. Even if you appear uninfected.

• If you develop any of the symptoms mentioned in this section viz.: persistent cough, blood stained sputum, fever, night sweats or weight loss - don't leave anything to chance - get a check up from your doctor. The sooner you are treated for TB disease, the sooner you will be cured.

• The symptoms of TB vary from person to person. Any combination of the symptoms mentioned above are worth having checked out.

• Sometimes you will have to wait a long time for test results. It serves no purpose to torture yourself during this time. Try to be patient. It will probably be good news.

• If you don't understand what a doctor is telling you, ask again...and again if you have to. Don't be intimidated by them - they are human beings too! Sometimes because they understand their subject as well as they do, it is easy for them to assume that you understand it too. Take a notepad if necessary.

• Take a friend with you when you go to see the doctor. It helps to be able to talk over what you have heard with someone else you know well. It also helps them to know what is happening to you.

• If you are found to be latently infected with TB remember you are not infectious; only about 10 per cent of people go on to develop TB disease. However, if you are immuneo-compromised in any way you may be more at risk. Talk to your doctor about this.

• You may have to spend some time apart from people who may be considered vulnerable. Having to spend time away from friends during a time of need can be hard, but it is a necessary precaution. It is better to be safe!

• If contact tracing is initiated, disclosing names of people you have been in contact with may be embarrassing and awkward - again it is best to be safe. You never know, one of the people on your list may have infected you, and may need help and treatment themselves.

• Nurses won't mind you talking to them if you need help. It is part of their job and they are often easier to communicate with than doctors and are generally more approachable.