What can I do to help with
Almost 90% of lupus patients experience fatigue,
making it one of the most common symptoms. These
symptoms may vary from severe, to fleeting or
persistent and can form a vicious circle. If you are tired,
you don't feel like exercising and if you don't exercise
then often you become tired and lethargic.
It is important to ensure a balance between exercise
and rest - exercise and rest intermittently as the body
allows. Listen to your body, it will tell you when it is time
to rest. Increasing stamina allows you to gain more
strength and muscle tone. Remember that rest is also
needed to restore energy.
What physical activities will I be able to continue with?
Activities that strengthen your stamina and don't cause
stress to the joints and muscles are advised. These
include swimming to provide an all over fitness, walking
and cycling. Jogging should be avoided as this may
prove too strenuous. It is always advisable to ask the
advice of your Physiotherapist and/or Occupational
Therapist when thinking of starting any exercise regime.
What changes will I have to make to my lifestyle?
Remember you are not alone in making changes, there
are people who can help you. Everyone is an individual
and will cope with their illness in different ways. Lupus
itself can alter the way you will cope emotionally, this
may also change from day to day. Talking to other
people may be an important way to cope. This may be
with family and friends, your hospital consultant, nurse
or other health care professionals. However, you may
need to talk to someone who has experienced what
you are going through and this is where by joining
LUPUS UK and being a part of a Regional Lupus
Group may help.
These groups not only offer a chance to talk to other
people with the disease but provide you with an upto-
date awareness of changes and developments in
lupus treatment and care. Family members and
friends also need help and support to enable them to
understand the difficulties you are facing. There is
always someone who will spend time with you even if
you don't want any answers and all you want is
someone to listen to your fears and anxieties.
What about work?
As with exercise, the most important thing is to listen
to your own body; it will let you know when you need
to take a rest. There is no doubt that some
adjustment to your lifestyle will have to be made.
However, how you learn to cope with these changes
will be an important part of the process of adjustment.
Take time to think of the activities you did before you
had lupus. Changes may be necessary but these need
not be negative ones. Learning to cope with your
lupus and taking control of it and not letting it control
you will enable you to act with a positive attitude.
It may be that you cannot manage to work the hours
you used to work. However, this may not be an option
due to financial commitments. There are other ways to
overcome this hurdle. You may be able to spread the
hours you work over more days or be able to take a
break in the day as many continental countries do. It is
now more than ever crucial to look after your body. It is
no good pushing yourself to the limit. Learn to pamper
yourself a little, learn to accept help when offered and
don't push yourself to do anything that may be
unnecessary - some things can wait until tomorrow.
Remember the body also needs time to rest and
rejuvenate and start again.
What changes will my family have to make?
Lupus may initiate the need for changes in your family
life; some of these may be permanent, others may be
more temporary. There may be some friction between
families if, for example, you are no longer able to do all
the chores you used to be able to do. You may have
to ask for and accept more help. Your family may be
understandably worried about your health and go to
the extreme of not letting you do any of the things you
used to do. This will lead to you feeling undervalued
and make readjusting your lifestyle harder. Try to think
of how this change is affecting your family, they also
will need time to adjust. Make sure you find time for
your family and try to share your fears and anxieties
with them. Consider how you would feel if the change
was affecting them. Allow time for the things you
enjoyed together before you had lupus and continue
to enjoy them.
What about my sex life?
There is no doubt that your appearance and
behaviour may change with lupus. You may feel more
sensitive to these changes and feel that your partner
doesn't understand. It goes without saying that some
relationships do end but this is a fact of life and
happens even without an illness. You need to be able
to communicate what you are feeling, what anxieties
you or your partner have and if you can't solve these
alone perhaps it is time to seek professional help.
Lupus can certainly affect your sex life and the
closeness of your relationship. There may be
psychological and physical reasons for your sex life to
become affected. Physically you may be experiencing
muscle and joint pains and not feel able or want to
move around. Pain can restrict the activity of love
making, therefore, it is important to try and find ways to
relax muscles and reduce pain. Massage, warm baths
and relaxation may help. You may need to try different
positions to put less strain on joints. Learn to talk to
your partner about what is comfortable for both of you.
Take into consideration the time of day you make love.
If you experience early morning loss of mobility you
might want to restrict your love making to afternoons
or evenings. Fatigue as previously mentioned can
affect 90% of people with lupus. Therefore, if you are
tired you will not enjoy lovemaking. However, talk to
your partner and let them know why you don't want to
make love. Being close to someone in their arms can
also be a loving experience.
Other problems that may be encountered are:
Drugs may be painkillers that make you feel drowsy.
As with coping with the pain, find time when you have adequate pain relief without feeling drowsy. Some drugs
eg beta blockers, can diminish sex drive. It may be
possible, on advice from your doctor, to change the
brand of drug being used to one which does not have
this effect. If this is not possible you should explain to
your partner that your medication is responsible for your
lack of libido and that you are not just 'cooling off' your
relationship! With Raynauds, the circulation of blood
being restricted may also cause you to feel pain and
uncomfortable during love making. Warm baths and a
warm atmosphere can help.
Dryness — just as some people develop sore eyes and
mouth you can also develop a sore and even sometimes
ulcerated vagina. Ulcers should not necessarily inhibit
lovemaking. Soreness and dryness may be overcome
with longer foreplay to increase lubrication or by using
lubricants such as KY jelly. If this soreness and dryness
persist it may be necessary to seek medical advice.
Don't be embarrassed, you will not be the first person to
consult your doctor about this problem.
Social life and friendships
Your friends will react to your condition in a similar way to
your family and it is up to you to decide how much or how little
you think they need to know. As for your social life, let your
body lead you in this. Do as much as your body allows and continue
to enjoy your life like many others with lupus do.
Will lupus affect my finances?
If you find you are unable to work for long periods of
time it may be there are benefits you can claim. A social
worker should be able to help you with any enquires you
have. You will usually need to give the name of
someone who knows about you and your condition
when completing forms. This is often your lupus
specialist, nurse or GP. If you don't ask you won't know
if you are entitled to financial help. The Citizens Advice
Bureau can also be a source of useful advice.
Hopefully this fact sheet has helped answer some of the
questions you have regarding changes to your lifestyle
and how to cope with fatigue, but it is important to
remember you never have to be on your own - there is
always someone to listen to your fears and anxieties.
Your family and friends, your lupus specialist or nurse
and LUPUS UK and local lupus group contacts are just
a few of the important people who will help you come to
terms with your illness.