Tips
On this page you find some tips from cauda-patients. The tips are arranged by subject:
GENERAL INFORMATION
- Be patient, do not want to go too fast.
- Keep fighting, don't give up, keep faith in your own body.
- Try to keep thinking positive, don't cling to the things you can not do anymore, but concentrate on the things you can do!
- Live, especially in the beginning, from day to day. The idea that things can improve in the beginning, motivates to practice and to train. Letting yourself get down is no use yet, it is only after about 2 to 3 years that you can draw conclusions.
- Make two lists: one with 10 positive things that the cauda equina syndrome has brought you and one with the 10 things you miss the most since you have the cauda equine syndrome. The first list makes you realise that you have a lot to be thankful for. If you are having a difficult time and are feeling down, you can read it again. The second list helps you deal with the limitations the cauda equina syndrome has brought you. If you keep this list and look at it later, the chances are that you are now able to do one or more things of the list or that you have found a way to deal with it.
- Sharing experiences with other cauda equina patients gives joy and is informative. Medical helpers usually don't know a lot about the cauda equina syndrome.
- Having the cauda equina syndrome sucks, but don't let it ruin your entire life. Keep working on getting/keeping fit and make sure you have enough other things in your life so that you are not occupied by the cauda equina syndrome all the time.
- In the beginning, search for support on the internet, but stop this after some time, or else you are occupied with it too much.
- Make friends that also have CES, see each other once a year.
- But most of all: keep a positive attitude and take control over you life again.
FAMILY/PARTNER
- Try to involve your partner and family as much as possible. You need them. Don't hesitate to ask for help. Be open towards them. Let them read the website www.cauda.nl.
TRANSPORT
- A three-wheel bike is an excellent means of transportation, especially in the first period of CES. You are very comfortable and can do a lot of strenghtening your muscles. Choose a bike of which the gear can be shifted while standing still.
- During longer car-drives: stop along the way and try to move/walk a little.
- If you are queueing up much, try to trade your car for an automatic.
- With a plastic bag on the seat, it is easier to get into your car.
HEALTH
- Live healthy: eat healthy, much fruit and vegetables, and chicken/fish instead of meat, get enough sleep, try to avoid stress as much as possible.
- Take extra vitamine B for your nerve-system.
- Use magnesium, it de-cramps the muscles and eases the pain.
- Don't use strong painkillers for too long if normal painkillers will do.
- Drink cranberryjuice to prevent bladderinfections.
- Keep moving as much as possible, and try not to be scared off by pain; pain is very nasty, but it doesn't kill you, keeping moving makes you stronger both fysically and mentally!