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Living with Complex Chronic Disease (CCD)

Information about living with Complex Chronic Diseases
CCD Resources

The following information includes factsheets, links to external websites and other materials that may support your understanding and management of your diagnosis.

Review of Migraines

Web Videos

Web Sites

 
Review of Multiple Chemical Sensitivities

Pacing & Self-Management

CCDP Videos

Web Sites

More

 
Review of Interstitial Cystitis

CCDP Videos

Web Sites

More

 
Review of Sleep
 
Self-Management

The following information is meant as a brief introduction to managing the many challenges that come with living with a complex chronic disease.

A core focus of the CCDP is to support the self-management of your condition to promote wellbeing and management of symptoms. 

Brain Fog


Brain fog is a debilitating symptom of complex chronic disease and is part of the diagnostic criteria for ME/CFS and FM. 

Brain fog can be described as the experience of mental fatigue that impacts a person’s daily function. More specifically patients report many deficits in cognitive activity inclusive of difficulties with memory, attention, information processing, word retrieval, foggy thinking, and feeling confused and disoriented.


Other resources:

(Bateman Horne Center presentation)
 
The relationship with a doctor or healthcare provider is a very personal one. It builds on communication and trust. 

Here are some things you can do to help build an effective partnership

Before your visit

  • Take a list of specific questions to your appointment, making sure to list the most important ones first.
  • Familiarize yourself with your medical history, so you can convey it concisely to your healthcare provider. Writing out a brief synopsis to give a new doctor can be helpful and save time.
  • Tracking your symptoms and concerns can be helpful to communicate with your provider.
  • List medications you are taking with their dosages. Tell your doctor about any medication changes.

During  your visit

  • Tape-record your visit (with consent from all present) or bring a pencil and notebook to take notes. You also may bring a trusted friend or relative to take notes for you.
  • Ask for clarification if you don't understand what you have been told or if you still have questions.
  • Ask for explanations of treatment goals and side effects.
  • Many specialists work closely with other team members. Ask if there is anyone else you should meet.
  • Let your doctor know if you are seeing other doctors or health care providers.
  • Share information about any recent medical tests.
  • Let your doctor know how much information you want to recieve and if you have religious or cultural beliefs that affect your treatment.
  • Stand up for yourself or have a friend or family member advocate for you if your concerns are not addressed. Balance assertiveness with friendliness and understanding.

Living with chronic illness can feel like a never-ending journey. Sharing your story and knowing that you are not alone can provide comfort and an empathetic understanding to those living with chronic illness. 


Websites

 

Videos

Fatigue, Fibromyalgia, ME/CFS and Sexual Health


Books

  • Aches, Pains, and Love: A Guide to Dating and Relationships for Those With Chronic Pain and Illness; Kyra Lynne
  • The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness; Miriam Kaufman, Cory Silverberg

Other written Resources

Sexual device manual for persons with disabilities

Positioning Handout


Websites

UBC Sexual Medicine Program

Fatigue, Pain and Sexual Health - Bateman Horne Center

Go ask Alice - Columbia University Health Promotion

Pacing

Pacing is a form of activity management. It is the ability to set your day at a speed that is right for you. This includes managing physical, cognitive and emotional activities. It is taking a balanced, steady approach to activity. Pacing can help to reduce the frequency or the severity of symptoms.

Pacing can help you:

  • Find your safe baseline for activities
  • Build consistency - avoid the push-crash cycle 
  • Maintain function or improve function in a sustainable way
  • Reduce crashing / flare-ups

Crash Management

A crash or a flare up is a common and often demoralizing part ot chronic illness. Please find a fact sheet on crash management here. Further information can be found on the CFIDS website

Pain and the Nervous System

Videos

Books

  • Explain Pain: (Revised and Updated, 2nd Edition);
    David S Butler, G Lorimer Moseley
  • The Pain Survival Guide;
    Dennis C. Turk and Frits Winter
  • Living a Healthy Life with Chronic Pain;
    Sandra M. LeFort, Lisa Webster, Kate Lorig, Halsted Holman, David Sobel, Diana Laurent, Virginia González, Marian Minor
  • Freedom from Pain: Discover Your Body's Power to Overcome Physical Pain;
    Peter A. LevineMaggie Phillips

Websites


 
 

Sleep Management

It is important to review your sleep concerns with your primary care provider to assess underlying causes and review medical interventions available. 

It is important to talk about sleep because disrupted or unrefreshing sleep can impact a lot of symptoms.

Sleep Hygiene

This is a series of healthy habits that can improve your ability to fall asleep and stay asleep. It includes reviewing your daytime and bedtime routines, stress management and relaxation techniques, and sleep schedule. 


Websites

  • The Sleep Foundation is a great resource that provides education on sleep conditions, support strategies and recommendations for sleep products, and links to articles on sleep topics.
  • Kelty’s Key Insomnia Course created by Vancouver Coastal Health. It is a resource that provides a good overview of insomnia, sleep hygiene practices, medications, sleep beliefs, the relaxation response, and the impacts your environment can have on sleep, along with some useful tracking tools and sleep audios. 
  • The Canadian Sleep Society has some general information on sleep, a helpful search tool for sleep centres across Canada, and some resources such as books and podcasts.
  • My sleep well created by Dalhousie University 
    provides strategies for sleep management that spans medications, the relaxation response, and the impacts of our thoughts on sleep. This website has suggestions for apps, and sleep tools.
 


       Videos

        Books

  • Yoga for Fibromyalgia;
    Shoosh Lettick Crotzer 
  • Hope and Help for Chronic Fatigue Syndrome & FM;
    Dr. Allison Bested 

        Article

        Websites



Useful Links

This is a collection of useful websites and resources. 

 


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SOURCE: Living with Complex Chronic Disease (CCD) ( )
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