How to cope with the general effects of vasculitis
How each individual is affected by their vasculitis will vary tremendously, but even when you are in remission you may have problems with a general feeling of fatigue, and not being able to manage as much as before. It may be recommended that you try and "pace" yourself. However, this sounds much easier to do than it actually is! Life often isn't so predictable. It will take time to change and readjust habits of a lifetime and preferred ways of doing things, so that activities within your week are evenly spaced out and manageable.
It may mean that you can't fit so much into a day or a week if you need to take regular periods of rest. Also, it's one thing to get yourself going in the morning, but when you have to do this a few times a day after each rest, much will power and determination is needed to adjust to put it into practice. However, it's well worth the effort. By pacing yourself, you can eventually achieve more because you don't spend so much time trying to recover after you've overdone it. You are also being much kinder to you body and treating it with the respect and rest that it needs when it isn't working 100 per cent. You may also be able to reduce feelings of frustration and stress as you learn to be able to predict more reliably what you can and can't do.
You may need to experiment with different ways of doing everyday chores in order to save energy. For example, would you get less exhausted by doing one large shop once a week or fortnight, instead of lots of little trips during each week? Then you may have some extra energy left to do something that is more essential or even enjoyable. Finally, your consultant will be able to advise you regarding what type and amount of exercise is appropriate for you. This may be influenced by individual factors, such as whether you have muscle weakness due to the vasculitis or as a drug-related side effect, for example, due to taking steroids.
Some patients find it useful to keep a diary of their achievements, however small, on a day-to-day basis. Even when progress appears slow, a diary can be helpful in demonstrating that progress is occurring. Always remember to reward yourself with words of praise or a special treat (preferably not chocolate) when new achievements have been made.
Workplace issues
If you are still working it may be advisable to consider issues such as: how much do I tell my employer? When do I report any difficulties at work to occupational health? Do I belong to a union in case extra advice and support is needed regarding workplace issues? What does your contract of employment say regarding time allowed off sick with full pay? It is extremely stressful to have to tackle these things when you are also trying to deal with your illness, but it can be more stressful in the long run to ignore them.
Your local unemployment office can tell you where to get a leaflet that contains information on how much to tell your employer about illnesses and disability. The Citizens Advice Bureau can also advise you.
Dealing with pain
Pain can very quickly drain your energy and seriously affect the quality of your life. Therefore, it is very important to discuss any problems that you might have regarding pain with your GP or consultant. If what is suggested in the first place doesn't work it is OK to go back to your doctor and talk about other medicines and treatments. No one painkiller will suit everyone and so you may need to try different tablets before finding the one that suits you best. Be careful about "over the counter" medicines such as non-steroidal anti-inflammatory drugs, ibuprofen is one such. These can be dangerous if your kidneys are affected.
Fear, anxiety and stress can make your pain feel worse and so it is well worth trying to find out what helps you to relax. A vicious circle can easily develop if you don't tackle this, and as a result more pain killing tablets may be needed. However, if you can consciously try and put into practise all the things that help you relax when you are in pain, you may find that you are able to use fewer painkillers. This will also help you to feel more in control and to be less fearful of pain in the future.
You can also, sometimes, reduce the number of painkillers you need by not waiting until the pain is severe before taking anything. For example, you may be able to get rid of mild to moderate pain by taking some Paracetamol as soon as the pain starts. However, if you wait until the pain is severe, you may well need a much stronger painkiller and more of them to get the pain under control.
What is it helpful to eat?
There isn't any special diet you can follow which is known to help vasculitis. But in order to stay as healthy as possible, it would be sensible to make sure that you eat a good balanced diet that contains all the essential nutrients and vitamins and is not too high in fat. Your local library is a good place to find information regarding what is contained in this type of diet.
When taking steroids it is good idea to make sure that you have enough potassium and calcium in your diet. This isn't very difficult to do, as bananas are a rich source of potassium and dairy products such as milk, cheese and yoghurt are full of calcium. It is also advisable to avoid alcohol when taking steroids, as alcohol consumption increases the likelihood of developing stomach side effects. Your doctor may prescribe calcium tablets to reduce the risks associated with taking steroids. Your doctor will advise you whether foods that contain a lot of potassium are a particular problem for you as may occur when kidneys are not working properly.
At the back of the 'British Medical Association New Guide to Medicines and Drugs' (available from your local library) is an excellent A to Z of vitamins and minerals. This tells you in great detail which vitamins and minerals are needed in order to stay healthy and the dietary sources of them all, plus lots of other useful information.