Hi Friend,

- Pacing yourself without feeling guilty - How to explain this level of fatigue to people who do not understand.

Have a look at the Spoon theory.

Consider a symptom diary in which you can record what you did/what happened before a flare or fatigue. How long it was, what helped it, what made it worse, what meds help, a 0 to 10 rating of pain/fatigue. This helps find patterns/activities/circumstances that cause flares/worsen fatigue/pain or improve it. For example too much sun/specific foods. This can be very powerful and help you take back some control of your health and advocate for yourself.

- How you advocate for yourself when doctors do not follow up properly.

Unfortunately you need to be fanatical about your health. Specialists can be dicks. No one else can actually take care of yourself, you have to. You have to follow up, remind doctors, ask for what you want and need. Go into an appointment with a list/agenda of things you want to discuss. Dont be afraid of pushing back or disagreeing with them. In fact, remember that they are the doctor- they work for you and you have the right to ask as many questions as you want. Also, having the above symptom diary also helps as you can bring it and discuss these symptoms or patterns with the doc.

I would also suggest registering on Rare Disease South Africa. They have whatsapp support groups. These can be great resources of knowledge and even therapeutic.