Emotional journey
Living with a long – term health problem like ankylosing spondylitis can affect more than just your physical wellbeing. In many cases, it can also take its toll on your emotions, making you feel anxious, stressed or sometimes a bit low. Here are some ways to help reduce the burden.
Talk about it
Try to share your feelings with a friend, partner or counsellor. Sometimes simply talking over your worries and fears with someone else can make you feel less alone with your condition.
If you can't shake off your feelings of anxiety you may be suffering from depression. Speak to your doctor or practice nurse.
Relax
Finding ways to relax can make a big difference to how you cope with your condition. Here are some ideas you might want to try:
- Treat your body with respect by making a special effort to eat properly and get enough sleep. Doing some exercise can also make you feel better about yourself and give you a more positive outlook on life. Most importantly, listen to your body. If you feel tired or slightly unwell, don't overdo things.
- Try to cut back on stimulants like alcohol, caffeine and tobacco. These may provide short-term pleasure, but in the longer term they will make you feel even worse.
- Experiment with relaxation techniques – Many people find meditation and visualisation techniques extremely relaxing, and that they put them in a positive frame of mind. A practical way to start is to buy a relaxation tape or CD. These are widely available from book or music shops. To a background of relaxing, unobtrusive music, you will be encouraged to slowly relax your body, and then focus on relaxing and positive thoughts.
- Indulge yourself now and then. Go for a massage. Being pampered by someone else can help you relax, release stored up tension and make you feel better about your life.
- Take time out to do things you enjoy, such as listening to music, sitting in the park or going to the cinema.
Sleep well
Getting a good night's sleep can do wonders for your feeling of wellbeing.
When you are in physical pain because of your ankylosing spondylitis – or simply worrying about your health – this can, however, be easier said than done. If you can't sleep properly for a few nights in a row, or even longer, your symptoms could feel much worse.
If you're struggling to get to sleep, or find that you're waking up in the middle of the night, try our tips for a good night’s kip.
- Avoid eating or drinking too much close to bedtime, as this may make you want to go to the toilet in the middle of the night.
- Stay away from stimulants such as caffeine (including chocolate), alcohol and tobacco in the evening. These will stimulate your nervous system and make it hard for you to drop off.
- Check your non-prescription medicines as these may contain caffeine or pseudoephedrine, which will keep you awake.
- Get some exercise to ease stress and help you relax, so you don't lie there worrying about things when you should be asleep.
- Relaxation and breathing techniques can be beneficial, helping you to let go of anxieties that may prevent you from falling asleep.
If you still can't get to sleep, it may be worth talking to your doctor or practice nurse, as it could be a sign of another medical problem.
Practical help
The NHS and Social Services can provide a number of services to make your life a little easier.
Some people with ankylosing spondylitis may require the help of aids to make everyday activities easier. These can fall into the following categories:
Mobility aids
The following mobility aids can help with balance and may also relieve some pressure on affected joints:
- Walking sticks
- Crutches
- Wheelchairs
- Stair lifts
Bathing and washing aids
Bathing and showering can be challenging for some people with AS, especially if it is painful or difficult to stand. Bathing and washing aids include:
- Bath lifts
- Shower chairs
- Walk in baths/showers
- Non-slip bath mats
Dressing aids
If hand joints become stiff, the following aids may help with getting dressed:
- Button fasteners
- Shoe horns
- Zip pullers
Ask at your GP surgery to find how you can get referred to Social Services providers in your area.
Telling your employer
If you are employed, being diagnosed with a long-term health problem like ankylosing spondylitis can affect your job. If you would like to – or need to – continue working normally, you may be concerned about what to say to your employer.
Many people in your position worry that being open and honest about their condition at work may mean that they will be forced into early retirement or passed up for promotion. However, if your condition isn't completely debilitating, there is no reason why you shouldn't continue to work. Telling your employer is a good way of ensuring you get the support you need to make working as easy as possible.
This is especially true if you are going to have to go to lots of hospital appointments during work time or your responsibilities or working hours need to change slightly to suit your capabilities. It can also help with small but often important things, such as what floor you work on or the chair you use. You may even find that you are eligible for a greater number of sick days than usually allowed by your employer.
If you have any concerns about your rights, it may be worth seeking legal advice, speaking to your union representative or contacting a Citizens Advice Bureau before saying anything to your employer. They should also be able to tell you whether you are protected by the Disability Discrimination Act, which protects the rights of people with disabilities. To find your local Citizens Advice Bureau, visit www.adviceguide.org.uk or look in your local phone book under 'C'.
Support groups & charities
National Ankylosing Spondylitis Society is a charity working for people with ankylosing spondylitis, their families, and their medical teams. Visit their website www.nass.co.uk or you can call them on 020 8948 9117 or email admin@nass.co.uk.
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