Life with Chronic Illness
In this section, I'll be sharing resources to assist with daily life and management with chronic illness, but I think it's important to note that there is no one size fits all blueprint to follow that will make life with chronic illness a breeze.
There are a huge range of things that can be done, and it very much varies from person to person what strategies will work as we are all so different. An individualised approach should always be taken, but here's a list of factors that may be included in the process.
On the following tabs of this section you can find resources in more detail on things like implementing pacing, creating a flare up toolkit and symptom or condition specific management.
Managing Chronic Illness;
what it involves
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making adjustments to home environment
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monitoring symptoms
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making changes to hobbies
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getting help from others
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making dietary changes
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pacing activities
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lifestyle changes
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regular medical appointments
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workplace accommodations, career changes or withdrawal from work
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creating flare up toolkits
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frequent rest
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a holistic mind and body approach
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mobility aids
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lots of advance preparation
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trial and error
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physiotherapy
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learning to advocate
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Since being diagnosed with many chronic illnesses, the specialists sent me in lots of different directions to other practitioners that could give me the tools to learn
management strategies for daily life with chronic illness.
The conditions I have been diagnosed with include:
Hypermobile Ehlers Danlos Syndrome (hEDS)
Fibromyalgia
Postural Orthostatic Tachychardia Syndrome (PoTS)
Mast Cell Activation Syndrome (MCAS), Allergies, Asthma, Eczema, Psoriasis
Hidredinitis Suppurativa (HS)
CFS/ME or Chronic Fatigue Syndrome
Chronic Migraine
Atlantoaxial Instability (AAI / Neck Instability)
Gastroparesis (Delayed Gastric Emptying)
IBS (Irritable Bowel Syndrome)
Sciatica
Scoliosis
I want to be clear that this is not medical advice and what works for me, may not work for you. You should always check with a medical practitioner as to whether any new strategies are right for you to try out.
The concepts that I am sharing should enable you to personalise and create your own versions of the strategies that I use, that are tailored to YOU. Explore this section by tapping the buttons below:
A bumper pack guide with a guide to diagnosis, how to create a flare up toolkit, what pacing is and how to implement it - a mega guide with my 8 years of experience since my chronic illnesses have been diagnosed and debilitating
An overview of some of the conditions I have alongside strategies I use to manage them; Ehlers Danlos Syndromes (hEDS), Gastroparesis and Mast Cell Activation Syndrome (MCAS)
From how to move home with chronic illness, to making your kitchen more accessible and useful pillows that help with daily life and pain relief
Some perspective shifts I've learned over the past eight or so years with several debilitating chronic illnesses, and some meditations I've recorded along the way for lots of different circumstances
