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Living Well

 
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 Living and working with a chronic condition

Learning you have a chronic disease can be frightening. Depending on what it is and the treatment options available, you may feel panicked or sad at best. Sometimes you have to focus on the basics before you can start thinking about working and other stresses. Sleep, continence, mental health and relationships are all things that can affect your day to day life. But learning about your condition, talking with others about it, and doing your best to manage it can help you live a less fearful and more expansive life.

Staying well at work

Video: living and working with a chronic condition

 

Emotional support

Having a chronic health condition doesn’t have to mean a constant emotional upheaval, but being diagnosed with a long-term condition inevitably has a significant emotional impact. In the same way that you can treat and manage the physical symptoms, there is help and support to deal with the emotional aspects, including:

  • Help from a health professional. There are many practical techniques that can make a real difference to the way you feel. 
  • Peer support - sometimes talking to someone who knows what you're going through can be incredibly helpful. 

 

Managing your emotional wellbeing

Help lines like Samaritans and Mind as well as your patient group or society can provide confidential non-judgemental emotional support, 24 hours a day for people who are experiencing feelings of distress or despair. Whatever you're going through, whether it's big or small, don't bottle it up. If you're worried about something, stressed out, feel upset, depressed  or confused, or just want to talk to someone, it can really help to talk to someone who understands.You can call the helplines of your particulat patient group or use more general helplines.


Mind
Mind helps people take control of their mental health. They provide high-quality information and advice, and campaig to promote and protect good mental health for everyone.

Samaritans
Samaritans provides confidential non-judgemental emotional support, 24 hours a day for people who are experiencing feelings of distress or despair. Whatever you're going through, whether it's big or small, don't bottle it up. Samaritans are there for you if you're worried about something, feel upset or confused, or just want to talk to someone.

Managing stress

The fact that a condition is fluctuating, that it can come and go, get worse and get better, can cause a huge strain on a persons mental health. Getting a diagnosis in the first place is a big deal and the feeling of grief and loss about the way they expected their life to be can be enormous. This can effect all aspects of life including work. Stress is a major player in someone's sense of wellbeing. There are professionals who can help to tease out problems using talking therapies and other methods to help you see that you aren't losing it, or going crazy if you have memory or thinking problems, or of you feel depressed.

Living with the effects of MS and other chronic conditions

Shrinking the monster
A workbook to help you shrink the 'monster' of a chronic health condition.

Equal opportunities
AboutEqualOpportunities was formed to offer a unique reference point on understanding equal rights and discrimination policy. In an ideal world, everybody would be offered equal opportunities without having to ask and nobody would be discriminated against for any reason. Unfortunately, it's not an ideal world so we have set up EqualOpportunites to offer information and advice about this important subject.
 

Stress in the workplace

Expert Patients Programme CIC Online
Expert Patients Programme CIC Online courses to help you manage your health: follow the link to find out more about an innovative approach to dealing with the day-to-day issues when living with a long-term illness. Places may be FREE in your area. For more information see the Expert Patients Programme CIC website.
 

Beating the blues CBT

Beating the Blues is available free from the NHS. If you think that it could help treat your depression you should ask your GP or health care worker who should be able to arrange for you to use the program.
If your GP is unable to arrange access for you then they should seek help from your Primary Care Trust (PCT) who are required to make the program available as recommended by the National Institute for Health and Clinical Excellence (NICE)
 

 

Emotions and Intimacy

Relationships can be a nightmare at times for any of us, but they can also be an amazing addition to your life.  Whether single and dating, newly coupled-up or in a long-term partnership, it's important to recognise that people with chronic health conditions can face additional emotional and physical problems, but with a few adjustments many of these can be overcome.

Changes to your concentration levels or muddled thinking, for example, can affect how you communicate with your partner. Coping with the challenges associated with a long-term condition can add to you or your partner's stress levels, and complicate your relationship.  A whole range of emotions can be involved - guilt, fear, anger and so on, and any number of misunderstandings can result from not talking to each other about how you feel.
 

 Communication and honesty is key.  Knowing what is going on with each other can help, as can avoiding hiding things or keeping them to yourself.  People with MS and their partners often report that the condition creates both physical and emotional barriers and their relationship can suffer as a result.  Discussing your fears can help to prevent you from feeling isolated and withdrawing from your partner even further.  Getting some counselling, together or alone, could make a real difference.    

 
Diet
 
Some people feel that they can’t ‘do’ much about their condition. If a treatment doesn’t seem to be working, or there are few treatments available, it can be incredibly frustrating to feel you have to ‘sit back’ and let changes happen to your body. However, many people find it helpful to focus on aspects of health that can be controlled and changed, such as diet or exercise. With a healthy diet, some people feel their symptoms improve, though others aren’t sure if dietary changes are making any difference – as with many things with MS, there are very few concrete answers and lots of maybes. However, most people find that at least their sense of general wellbeing improves with a healthier lifestyle.

There are several diets for different health conditions, each claiming to be benficial to that particular condition. Everyone is different of course, but one fact is always true, a healthy balanced diet contains a variety of foods including plenty of fruit and vegetables, plenty of starchy foods such as wholegrain bread, pasta and rice, some protein-rich foods such as meat, fish, eggs and lentils and some dairy foods. It should also be low in fat (especially saturated fat), salt and sugar.

The eatwell website

 
Your body image
 
You don’t have to be a keen social observer to notice that there is a pressure in our society to be toned and slim. The requirement to eat a healthy, balanced diet may be difficult for many people, not just those with a chronic health condition. It is your body, and ultimately your decision what you put in it. Balancing a healthy diet with personal issues regarding body image is not always easy, and this can add to the difficulty of managing your diet. Seeking advice from an expert may help, whether it be a nutritionist, counsellor or psychologist, or even somebody who combines these skills. Other sources of help could be organisations or charities which specialise in eating issues, or support groups, whether local or online. You can ask your GP if you feel you need further support or a referral to a health professional.
 
Exercise
 
Everyone benefits from being physically fit, including people with a chronic health condition. However your condition affects you, there are exercises that can help you to stay as healthy and fit as possible and to improve some of your symptoms and their effects.

It is not always easy to find the time or the energy, but exercising regularly will keep your body working to its full potential. To make it easier, it is important to find exercise that suits you – something you enjoy and find worthwhile. While one person enjoys classic sports, another may prefer t’ai chi or yoga. All kinds of physical movement can be of benefit. Even gardening, cleaning and walking the dog use your muscles and help you to stay fit.

Physiotherapy can also be particularly useful, to help you find exercises that meet your specific needs and abilities. A physiotherapist may suggest exercises that concentrate on a particular area of the body that you wish to improve, or help you manage a specific symptom.
 

Free swimming

More than 20 million people can swim for free in England as part of the Government’s free swimming programme, almost 300 local councils are providing swimming free of charge for people 60 and over. More than 200 of those also offer free swimming to 16s and under.

Find out where you can swim for free

 


Complementary and alternative medicine (CAMs)
 
This is a catch-all term for anything that doesn’t come under the banner of ‘conventional’ medicine. This may include treatments that are not yet licensed or are 'unproven'. Many people use or have used complementary or alternative medicine. For some, there may not be a satisfactory conventional therapy available, or the therapy they are using might not be as effective as they would like. Other therapies can be used alongside conventional healthcare and accepted as 'complementing' it, or provided as an 'alternative' to conventional healthcare. Many people follow the complementary approach and use these therapies in combination with conventional medicine. CAMs can include things like yoga, t’ai chi, massage, reiki, oxygen therapy, acupuncture and so on. Some people choose to look closely at ways of managing their diet in a complementary way.
 
What works?
 
While there is little clinical evidence that these kinds of treatments improve symptoms, there is a large body of anecdotal evidence (what people say) that people with MS find such treatments beneficial. It is best to check with a health professional before starting any course of treatment. Some people feel CAMs help with symptoms, and others feel that they might not alleviate symptoms but may add to a general sense of well-being. They may also reduce stress levels or provide a social outlet. Others decide that traditional medicine is not for them and go down the natural route wholeheartedly. Many people want to explore the options to get the best of all worlds.