Now What????

When you are first diagnosed with lupus, you will probably go through a range of emotions;
Relief, that you finally have a name for your symptoms;
Worry, is lupus fatal, can it be cured, do I have to live like this all of my life?;
Anger, why me?
All of these emotions are normal & you will probably go through many more during the course of the disease.

It can take a long time to come to terms with having lupus, knowing that there is no cure. It can have a big effect on your life & the lives of those around you. But there is hope you can live well with lupus.

It is important to accept that you have a chronic illness, that your life has changed. You will have to accept help from other people, both emotional & physical help, don't feel guilty about accepting help, you cannot expect to do everything yourself.

TIPS FOR COPING WITH LUPUS

* Have a good relationship with your doctor, he will be the most important factor in your recovery

LLupus is a difficult disease to diagnose & many patients end up seeing more than one specialist before a diagnosis is made.
If you are unhappy with your doctor for any reason, or feel like you aren't getting anywhere, speak to your GP, & ask about getting a second opinion.
Before you go to see your specialist, make a list of all of your symptoms & any questions you want to ask, as once in there it is easy to forget what you wanted to say.
If you don't understand anything the doctor says or want to know more information, don't be afraid to ask, & if you don't want to ask the doctor, ask the nurse afterwards.

Don't be afraid to ask for help if you need it. Family & friends, doctors & other health care professionals, Lupus Foundation of America are all sources of help & support.
become a partner in your healthcare by taking care to stay as healthy as possible - physically & emotionally.

* Don't blame yourself!!! I'ts not your fault you are sick!!!*

Steps to Coping with Lupus

Realize you have limits be realistic about what you can and cannot do You will have good days & bad days, remember to take each day as it comes, if you feel tired & in pain, then rest, if you feel well enough, then you can be more active, but don't overdo things.
You might not realise at the time that you have done too much, but it will catch you up later on. If necessary, lower your housekeeping standards, many chores can be done every other day or week, rather than daily weekly.
Delegate - don't think that you have to do everything, other people will be only to glad to help. After all if you overdo things you will feel much worse afterwards, & less able to carry on as normal.

Use your energy wisely Don't waste it on unnessary things


Set reasonable goals for yourself If you are having a bad day dont go shopping or try to cook family dinner.<

try to accept the things you cannot change rather than feeling constantly frustrated & upset over situations beyond your control.
remember that stress, depression & pain are all closely connected & each affects the other. If you can, take steps to solve any one of these problems so as to reduce the extent of others.
you can reduce fatigue by developing priorities & learning to pace your daily activities. Break down big, long-term goals into small, manageable steps that can be accomplished in some short amounts of time.
if lupus has limited your hobbies & activities find new ways to use your skills.


* Ask for help you'll be surprised what hubbie and kids can do when asked

~~Prioritize~~

* Set priorities know what is most important for you to do in the short time you have to do it, postpone others till another day, like laundry, grocery shopping,cleaning

The most important things are done first
Evaluate your daily routine & responsibilities in light of your current energy level.
Make a written or mental list of things to do each day.
Ask yourself these questions about your list:
which ones are important to me?
which ones have to be done?
how much energy & time is required to accomplish them?
Determine to spend some time on the most important one or two items each day.
Eliminate unnecessary tasks & activities - which items on your list don't really need to be done?
Delegate - which items on your list can be done by someone else?

Encourage others top be self-sufficient. Modify or simplify the remaining tasks or activities.
Learn to say "No"!
Planning Think ahead so that you can do what you want to in the easiest way & in the shortest time possible. Use mental energy whenever possible to conserve physical energy.

* Learn to adapt sometimes our health will change plans, instead of going to dinner with friends,maybe invite them over for pizza and a movie

Plan work, & work according to your plan. Plan time for rest, relaxation, & recreation. Arrange your work & storage areas.

Plan in advance for work to be done in each period (day, week, month, season).

Plan alternating activities: sit/stand, fast/slow, light/heavy. Buy smart. When making purchases, consider ease of use, weight, size/shape of items, handles, & any other important considerations.

Pace yourself Know how to balance activity & rest to make the best use of your energy.

Plan several; rest periods during the day. A ratio of 10 minutes rest to 50 minutes activity seems to work well.

Rest before you get tired. Avoid getting involved in activities that tax you beyond your endurance.

Divide large jobs into small steps. Work at a rate comfortable to you. Avoid tye need to rush with better planning. We must pace ourselves properly in order to have energy to carry out our priorities & plans.

* Have fun find something you enjoy doing and do it! I like to paint. It relaxes me and takes my mind off pain for awhile

* Remember to live "Just For Today" we don't know how we will feel from day to day, week to week so therefore make no plans except on a daily basis.

Try to prepare for the up-and-down nature of the disease. Plan alternate activities, alternate schedules or time for extra rest.

By listening to your pain as a signal you can begin to control it.
find positive ways to channel such negative feelings as anger & depression.

* Have some kind of relaxation or prayer time to meditate and relax and find your spirit!!

LUPUS AND YOUR FAMILY

Be open with family & friends about the unpredictable pattern of lupus & how the disease affects you.

Don't turn away from your family & friends, remember that they will be worried about you, & want to help.

They can be a wonderful source of support, talk to them & tell them how you feel. You may find that you gradually lose contact with friends during the course of your illness, this can be because you are too tired to participate in social activities.

To avoid this from happening try to explain to them how you feel, that you are too tired to go out, suggest an alternative such as them coming round to your house.

If you do lose contact with friends, you can meet new people who are in the same boat as you at support group meetings.

* Eat a nutritious diet, even if it means adding some fruit or fresh veggies a little at a time
* Get plenty of rest this is so very hard, but is a must
* Try to exercise daily I do yoga, and it seems to help me

Coping with the pain

One of the most difficult things about living with lupus is the chronic pain, but there are ways to ease the pain.
The first things people normally consider when they have pain are pain-killing medications, but it is important to realise that they can be addictive, & other ways of easing pain should be considered.

Distraction can help take our minds of pain, try something like watching TV, listening to music, & hobbies.

Rest is a very important factor in pain control, you don't have to go to sleep, just sitting or lying down for a short while can help reduce the pain. But guard against the tendency to resume activities straight away after a rest has eased the pain, take things easy for a while afterwards to give your joints & muscles a rest.

Heat & cold treatments can be beneficial. Cold has a numbing effect from a few minutes to a few hours. Heat is soothing & helps promote muscle relaxation. Be careful if there are circulation or sensation deficits.

Imagery is a useful defense in pain control. Imagining the discomfort while relaxed & using thought to destroy the problem is a proven method. An example is to think of a headache as a spot on a fabric. The spot is attacked by an enzyme detergent & disappears. Do this 15 minutes two or three times a day while listening to relaxing music. It becomes more effective with repetition. There are also many relaxation tapes on the market that can be very helpful.

 

LUPUS AND YOUR JOB

You may start to feel that you are not well enough to carry on with your job, either because of the pain & fatigue, or because of psychological problems such as difficulty concentrating, or depression.

You may feel that you don't want to give up your job, but it is important to remember that your health comes first, & to carry on working when you are unwell can make things worse.

If the situation arises, try talking to your boss, you may be able to come up with another solution, such as working less hours. Even if you do have to give up your job, it needn't be the end of the world.

If money is a problem, there are state benefits available. Another option may be to look for a less demanding job, or work from home. You could look at turning a hobby into a small business.

If you lose your job, don't see it as the end, see it as a new beginning, an opportunity to turn things to your advantage.

Lupus and Beauty

Lupus can affect a person's appearance, & therefore affect self-confidence, but there are many ways of solving these problems.

There are many good coverup cosmetics available (also available on prescription) which can cover up rashes.
Choose clothing which helps disguise or distract the eye from the effects of fluid retention & swelling.

If hair loss is a problem, these days there are a lot a natural looking wigs available. If you look better, you will be less self-conscious, & consequently, feel better.

Living with someone with lupus

If your partner or close relative has been diagnosed with lupus, you may have a number of concerns. You may see that person differently. Maybe you were dependent on that person, but now you have to shoulder more of the burden.

If you have difficulty dealing with your loved one because of lupus, you're not alone. Illness in a loved one often creates a lot of ambivalent feelings in yourself. Concerns about the future, your loved one's health, & money may be troublesome to you. This is not unusual.

If you are close to someone with lupus, you have an important job on your hands. You will need to be understanding & supportive. Remember that people with lupus don't have it easy, but they'll have a much harder time if they feel alone or isolated.

A great way for you to help is by learning about lupus & its treatment. By understanding the illness & what it does, not only can you allay some of your own worries, but you can provide better support & understanding.

Give him/her enough space to deal with the illness & to regain some control over his/her own life.

It might help for you to go along when he/she visits the doctor, not only for support, but also to listen to what the doctor says, as it is often hard for the patient to take everything in at once & remember things the doctor said.

Encourage him/her to look after him/herself properly, & take medications, but know when to back off. Offer help with everyday household chores to give him/her a rest, & reduce the pressures on him/her.

When he/she is feeling well enough allow him/her to carry on as normal, don't smother them with pity, but do offer sympathy.

Most importantly keep talking, talk about your fears & problems as well as his/hers. If you don't communicate then you won't be able to offer him/her the best help he/she needs.

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GET INVOLVED

Join a national lupus charity Lupus Foundation of America they will provide you with support (often locally) from people who know exactly what you are going through, and can also provide literature & books on lupus.

A little knowledge is a great thing, learning about lupus can help enormously in understanding & coping with the disease.
There will be support groups that you can attend to talk things over with other sufferers, talking to strangers can sometimes be easier than talking to family members.

NUTRICIAN AND LUPUS

Avoid using alcohol or tranquilisers as 'problem solvers'. They don't solve problems, & turning to drugs or alcohol can lead to addiction, as well as the very real dangers of alcohol/drug interaction.

Eat a well balanced diet and drink lots of water.

take a all purpose suppliment with vitiamins and minerals.

dont smoke

 

 

Identify your fears. Make a list of them, & discuss with your family or friends. Together you can look for ways to deal with them, after all 'a problem shared is a problem halved.

this list is by no means complete, so check back often as i will be updateing frequently.

 

Back to main Page disclaimer, this lupus information has been compliled from several different sources that i have come across, and included in my own ideas and solutions. If you have a problem with me using it please let me know so i may change the content. thanks

 

 

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