Whilst I am sharing resources to assist with management, there is no one size fits all blueprint to follow that will make life with chronic illness a breeze. There are a huge range o things that can be done, and it 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
making adjustments to home environment
making changes to hobbies
getting help from others
making dietary changes
regular medical appointments
workplace accommodations, career changes or withdrawal from work
creating flare up toolkits
a holistic mind and body approach
lots of advance preparation
trial and error
learning to advocate
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)
Postural Orthostatic Tachychardia Syndrome (PoTS)
Mast Cell Activation Syndrome (MCAS), Allergies, Asthma, Eczema, Psoriasis
CFS/ME or Chronic Fatigue Syndrome
Atlantoaxial Instability (AAI / Neck Instability)
Gastroparesis (Delayed Gastric Emptying)
IBS (Irritable Bowel Syndrome)
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:
Discover the importance of creating a flare up toolkit consisting of all of the strategies that can help you during a symptom flare up
Pacing is a strategy I've learned to assist with chronic fatigue that commonly occurs with many chronic illnesses. Here is a guide on what pacing is and how to implement it into your routine.
One of the overarching conditions that I have is EDS. On this page you can find information on what EDS and HSD are, how they can affect us, common misconceptions and how to manage the conditions, also with further resources.
I've more recently been diagnosed with this condition and this page is the useful information that has been shared with me by other people in the community with this condition. You can find the strategies that typically help people with gastroparesis in this section
One of the most debilitating conditions that has zero NICE or NHS guidelines is Mast Cell Activation Syndrome, so I've put together an in depth page with as many resources as possible to inform and educate about what it is and possible management strategies
To gain independence on a daily basis, being able to prepare food and drink in the kitchen is important. But a lot of the time, this isn't very accessible and simply preparing a meal can be a huge task. I've come up with strategies to make my kitchen more accessible, and these strategies have helped me enormously to be more independent.
Pillows are such an important strategy in my flare up toolkit that I've dedicated a page to demonstrate how they help me, what makes them beneficial and how they could help with your symptoms
On this page you can find strategies for moving home with chronic illness, which is such a stressful process in itself (even if you are completely healthy), so with chronic illness in the mix it can be challenging and I've created this resource based on my experience moving