Living with Lupus

Sick of Lupus

Helping to spread Lupus Awareness

Being diagnosed with Lupus is likely to be a bittersweet moment. On one hand it is a relief to finally be able to put a name to all of the symptoms you've been suffering from. It also means that you can now begin your treatment under the care of a Rheumatologist.

 

However, it is also the begining of an important transition, which will have both physical and emotional implications for the patient and their families.

 

Below you can find some practical advice and tips for living with Lupus.

 

 

Food and drink:

 

If our steroids were our friends, we would be dealing with some major two-faced action! Prednisolone a drug that we all rely on, and without it's side effects it really is a is a wonder drug. Unfortunately in many patients it is responsible for undesiredweight gain. This is because prednisolone can increase you appetite, give false hunger signals, slow down your metabolism and encourage water retention.

 

There isn't much that can be done to avoid weight gain

 

but the foods we eat can help to control how much weight we gain and how healthy we feel.

 

You may want to consider trying some of the suggestions below which have helped various people with Lupus.

 

Keep a food diary:

 

A great way to see how much you are actually consuming. It is also a good way of noting foods that might actually trigger a flare.

 

Food allergy/sensitivity testing:

 

Things like a wheat intolerance can really impact your energy levels and may make you feel bloated and sluggish. If you suspect an intollerance to something, your G.P can do a blood test.

 

Raw food/Juicing/Plant-based:

 

A lot of research supports the concept of a vegetarian style diet rich in fruit, veg, and pulses. It's important to include protein in your diet to maintain optimum health. In addition you can risk losing out on essential minerals by eliminating everything you presume is bad for you. One Lupus sufferer has recommended the book The Lupus Recovery Diet by Jill Harrington in which she shares success stories from those who have changed their diets and in turn improved their health.

 

Red meat:

 

Some individuals with Lupus have found it benificial to reduce the amounts of red meat in their diet. To ensure a sufficient intake of protein, choose lean white meat, fish and tofu. You may also see benifits from choosing the soy alternitives to everyday dairy products.

 

Snacking:

 

Continually snacking throughout the day is a benificial way of keeping your hunger under control. Look for low-calorie snacks that are also low in saturated fat and stock up these. Sugar-free jelly is virtually fat-free and satisfies a sweet tooth.

 

Anti-inflammatory foods:

 

Why take pills to reduce inflammation when you can incorporate the natural alternative into everyday life? Omega-3 found in oily fish, walnuts, flaxseed, and pumpkin seeds can reduce inflammation. Similarly, olive oil has a positive impact on the heart and can reduce pain. The brightest fruits like blueberries and strawberries are very good, so are leafy vegetables and red onions.

 

Herbal teas:

 

A great way to avoid caffeine whilst still needing a hot drink. Relaxing with a liquorice tea everyday may be something to try as it claims to treat stomach ulcers, headaches, chronic fatigue, arthritis, liver disease and many more symptoms. Places like Holland & Barratt or other health-based shops can provide a list of herbal teas and their list of benefits.

 

Weight-management groups:

 

Many people struggle to control their weight whilst taking steriods. Weight Watchers or a similar meeting style weight loss programme may be a good way of keeping you on track. By agreeing to stick to a structured plan, you will soon find the weight is easier to control and the group support can aid motivation.

 

Low impact exercise has been proven effective in helping fatigue. Taking a stroll, brisk walking, cycling, swimming, using free weights, and low impact aerobics are all recommended exercises for weight loss. It is essential that before undergoing any new diet/exercise routine, a Doctor has given the go ahead.

 

Processed foods:

 

Try to avoid heavily processed foods, which can make you feel pretty awful after a while!

 

Drink water:

 

It's good for everyone!

 

Travel:

 

The Blue Badge Scheme is for people who are unable to walk or have restricted mobility. It allows you to park in more convenient areas. Seek advice from your local council.

In the United Kingdom, those with a Blue Badge are usually eligible for a bus pass or discounted travel on public transport. The best place to find more information is from the City Council in your area. National Rail also has a Disabled Persons Railcard.

 

Before you travel:

 

Visit the Rhematologist/ GP: (This is more relevant to long haul travel) it is vital that you are safe to travel to your desired location.

 

Someone with low immunity could be extremely vulnerable to picking up infections and getting ill in some countries. Travelling by air may also be a risk if you have respiratory and joint problems and you will need to take precautions. You may require immunisations and might need to take new medications beforehand.

 

Research:

 

When travelling abroad, be sure to find out about local health facilities available at the destination. Is there a hospital/chemist nearby?

 

Sun exposure:

 

Sun sensitivity is a symptom of lupus and too much UV exposure can trigger a flare. You can get the highest sun protection available from your doctor as most stores stop at factor 30.

 

Plan in advance:

 

When you have lupus, you learn to plan, pace and be prepared to make changes if you have a bad day. Think about the way you will be travelling, the time involved and the end destination. Will you need to bring items to improve your comfort or aid mobility? Will you be travelling through time zones? If so, this may influence how much medication you will need to supply. It is useful to get a letter from the GP explaining why you are travelling with so much medication; this can make things much easier if questioned at the airport. Always carry a copy of your medical history and list all medication incase of an emergency.

 

Travel insurance:

 

I would never recommend traveling without insurance if you have lupus. Healthcare abroad is not free but may be necessary. Unfortunately people with pre-existing medical conditions can struggle to find travel insurance cover. Here are some companies to try.

 

Freedom Travel 01223 454290

 

J&M Insurance Services 020 7446 7626

 

Bishopscourt 0870 777 9339

 

Post Office 0800 169 9999

 

Insurance Choice 0844 55 77 703

 

Go Travel Insurance Services 0870 152 5840

Please contact Lupus UK for further suggestions, regarding Travel Insurance.

 

Medication and Treatment:

 

With Lupus, medication is a way of life and it is crucial that all medication is taken as directed by the Rheumatologist.

You may find it hard to adjust to taking pills on a regular basis and so a pillbox with times and days will help you maintain a routine.

It's also common for a patient's medication to vary over time and during a flare up it is usual for certain medication to increase.

 

Due to the impact Lupus has on multiple organ systems, plus physical and emotion impact, a Lupus sufferer can expect to receive treatment beyond Rheumatology.

It is normal to be referred to other specialists within different departments of the hospital including:

 

Respiratory

Neurology

Physiotherapy

Dermatology

The Phlebotomist

 

Smoking:

 

Plain and simple.. DON'T SMOKE!

 

Smoking with Lupus is a very dangerous combination. It can cause complications with circlatory disorders, lung and heart disorders and can encourage flare ups.

 

As smoking impairs circulation, people with Raynauds Phenomenon will see their condition worsen.

 

Counselling:

 

Patients can easily feel isolated, depressed or anxious from time to time. This is a normal part of living with a chronic illness but bear in mind that it can also be a side effect of certain medication and treatment.

 

Patients will come to rely on the support of their friends, family, colleagues and health professionals. Talking through an illness can help patients deal with their condition and discuss any fears. A Rheumatologist will provide a certain amount of emotional support and simply talking about your progress during clinic visits will be helpful.

 

However, you may find that seeing a Councillor or Therapist will be one of the best investments you can make in helping to manage Lupus.