Christmas Day: It is forever full of surprises
Christmas Day is forever full of surprises. When you’re little, it’s the right kind of surprises – “What has Santa brought?” “What presents will I get from family?” “How much fun are we going to [...]
In Adapting, Carers, Disability, Ehlers-Danlos Syndrome, Emotional Impacts, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Self-Care
Posted You, me & my connective tissues
Oh, the things I never thought I would have to explain. I’m 28, and I hobble into the physio rooms using a walking stick and the wall, trying for the life of me to pretend that everything is [...]
By Brittany App
In Adapting, Chronic Illness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Identity, Loeys-Dietz Syndrome, Marfan Syndrome, MCAD, POTS, Thought Management
Posted Do-re-mi-eds-pots-mcad-ocd medical dic-tion-ary
What alphabet do you use? The medical abbreviations that are common in the lives of a person with a chronic illness? You know, the do-re-mi-eds-pots-mcad-ocd medical dictionary? Do they define [...]
In Adapting, ADL, Disability, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Self-Care, Therapy Options
Posted What if my OT doesn’t understand hypermobility?
All occupational therapists have similar core skills, the ones taught in university. Where we end up after university determines the solidifying of our core skills and the development of skills [...]
In Adapting, ADL, Chronic Illness, Disability, Dressing, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pacing, Pain Management, Self-Care, Therapy Options
Posted When is the right time to see an occupational therapist?
People often hold off seeing health professionals until things are really, really bad. They think “Oh, I’ll just see if I can cope a little longer on my own”. When it comes to Occupational [...]
In Adapting, ADL, Chronic Illness, Disability, Dressing, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Therapy Options
Posted Why see an Occupational Therapist?
So why would you see an Occupational therapist? There are many reasons why! Occupational Therapists (OTs) are trained allied health professionals who work in a range of settings, from hospitals [...]
By Brittany App
In Adapting, ADL, Anxiety, Disability, Ehlers-Danlos Syndrome, Emotional Impacts, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Medical Experiences, Mental Health, Self-Care, Service animals
Posted My Service Dog; My Lifeline
Service dog. What flashes in your mind when hearing those words? A blind man with a vision dog, a veteran who is an amputee? While these are two valid types of work of service dogs, there are [...]
A J-tube isn’t going to stop me nursing!
Just like anyone who isn’t unwell, each day for me is different. On most days I snooze my alarm a few times, like most, before finally waking up for work. Before I even move I think about [...]
In Adapting, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pacing, Self-Care, Thought Management
Posted Perfectionism vs. Chronic Condition
When I was diagnosed in London by the wonderful Prof. Rodney Grahame, I distinctly remember him saying that hypermobility conditions are striking down young, highly motivated women in their [...]
In Adapting, Chronic Illness, Disability, Emotional Impacts, Grief, Identity, Independence, Mental Health, Pacing
Posted Hypermobility: The condition that takes away…
Hypermobility is a stealer. It steals so much from those who live with it, making it feel like the label should more appropriately be “Hypermobility: The condition that takes away more than [...]