Many symptoms or manifestations of EDS can be ‘treated’ to lessen their severity or halt their progress, (rarely cured).

Since diagnosis i have been engaging in more targeted treatments and therapies. These treatments have all meant that in the past 6 months I have regained a lot of my muscle and have gained close to 15kg! (I lost most of my muscle and got to a BMI of 16.5 due to malnutrition from intestinal failure).

I am also fortunate enough to have been given access to a wide range of assistive technology (AT)that I am beginning to use and is helping greatly (more on these later).

Some of the treatments I participated in and AT I utilised this week are:

2x Clinical Pilates

2x Physio

1x Swimming

2x Occupational Therapy

1x Psychology

1x GP

Daily Tube feeding and Medication

Home Physio

Home Assistance

Meditation

Leg Braces (AFO’s)

HR monitor, BP monitor, BSL monitor and many other AT.

I also excitingly and (with much trepidation) got to test drive some possibilities of future AT like powered wheelchairs, and Bionic Arms.

Additionally one ‘treatment’ that I participate in is work. Yes work! Being employed and contributing to society to me is as essential as some of my other treatments. It gives me an external sense of purpose, helps me be connected to others, helps me give back to the community, allows me to be present and accountable, and it keeps my brain busy on constructive things.

Working does mean that I do need extra assistance and have to be very careful with fatigue management to ensure that I am still able to engage with my family and do my other treatments.

Last but in no way least!! My other big ‘treatment’ is family, friends and connections. Being loved and loving others. A basic human right and need but without which my mental health and my ability to cope with the rest of it would not be possible.

Yes I struggle with time management and fitting it all in and not ‘burning the midnight oil’. I am learning not to push so hard (yes this still needs ALOT of work 😜) so feel free to tell me to slow down, to ask have you done too much….. just be prepared for sass in return or perhaps a sincere query into how your doing too….. because we all need to be reminded at times to take care of ourselves and to love ourselves 😜❤️❤️