Tag: ehlers-danlos
Posted on October 18, 2019
by Chronically Jenni
117 Comments
‘You look so well’ It’s a phrase I absolutely dread hearing. The last time I remember hearing it was at my mum’s 60th birthday. Earlier in the day friends and neighbours may have spotted me leaving the house with my walker to get on… Continue Reading “Friday Thoughts: Invisible Disabilities Week”
Category: UncategorizedTags: chronic illness, chronically ill, disability, eds, ehlers-danlos, friday thoughts, Illness, invisible, invisible disabilities, invisible disabilities week, invisible illness, pain, pots, spoonie
Posted on September 29, 2019
by Chronically Jenni
4 Comments
September is coming to a close. This month has brought the feeling of new beginnings as little ones head back to school and an autumnal chill fills the air. I know for sure that I’ve already curled up in a blanket and lit a… Continue Reading “Pain Awareness Month: A Letter to Pain”
Category: Illness, UncategorizedTags: chronic illness, chronic pain, csf leak, eds, ehlers-danlos, ehlers-danlos syndrome, letter, letter to pain, pain, pain awareness month, pots, september
Posted on September 28, 2019
by Chronically Jenni
2 Comments
It’s strange to think, as I sit here in bed in my most comfortable tracksuit with a bloated tummy and sore head, that this time last week I was sat down for a 3-course dinner in a beautiful cathedral, which looked like it had… Continue Reading “Friday Thoughts: The National Diversity Awards”
Category: Illness, UncategorizedTags: awards, chronic illness, disability, diversity, eds, ehlers-danlos, ehlers-danlos syndrome, hsd, hypermobility, Illness, liverpool, national diversity awards, paul sesay, pots, role model, sally phillips, spoonie, vlogger, zebra
Posted on September 20, 2019
by Chronically Jenni
79 Comments
Over the past few years, I have found so many amazing products and hacks to help me with different aspects of my connective tissue disorder (Ehlers Danlos Syndrome). Some of these things are quite specific to EDS but others would be helpful for a… Continue Reading “My EDS Survival Kit (Part 1)”
Category: Illness, UncategorizedTags: chronic fatigue, chronic illness, chronic pain, eds, eds hacks, eds products, eds survival kit, ehlers-danlos, ehlers-danlos syndrome, living with ehlers danlos syndrome
Posted on August 24, 2019
by Chronically Jenni
7 Comments
If I’d have had to write my final university project two years ago, when I was part of the class of 2017, I couldn’t tell you what I’d have written about, since going back to university I always knew that I wanted my project… Continue Reading “All That You Can’t See: Living with Ehlers Danlos Syndrome”
Category: Illness, UncategorizedTags: all that you can't see, awareness, chronic fatigue, chronic illness, chronic pain, chronically ill, docudrama, documentary, eds awareness, ehlers-danlos, ehlers-danlos syndrome, living with eds, living with ehlers danlos syndrome, project, radio, university, zebra
Posted on August 23, 2019
by Chronically Jenni
25 Comments
Recently I’ve had a lot of questions from friends, colleagues and spoonie’s alike about my mobility aids. From how I started using them and accepting them as part of my life to why I do, or don’t, need them from one day to the… Continue Reading “Friday Thoughts: Different Aids for Different Days”
Category: Illness, UncategorizedTags: babe with a mobility aid, chronic illness, chronically ill, different aids for different days, disability, disabled, eds, ehlers-danlos, ehlers-danlos syndrome, hsd, mobility aid, mobility aids, pots, spoonie, walker, walking stick, wheelchair, zebra
Posted on August 21, 2019
by Chronically Jenni
24 Comments
Very Busy Week Last Week! Went back to the gym, had 2 hospital appointments (Neurology at Queens & my year follow up from rehab at RNOH) and went on a date day to Thorpe Park and discovered their Ride Access Pass. I also went shopping… Continue Reading “Chronic Illness Weekly: Back to the Gym, Hospital Appointments & Thorpe Park”
Category: Illness, UncategorizedTags: accessibility, Accessible, appointments, chronic fatigue, chronic illness, chronic pain, eds, ehlers-danlos, ehlers-danlos syndrome, gym, haul, hospital, hospital appointments, pots, Ride Access Pass, RNOH, shopping, Thorpe Park
Posted on December 22, 2017
by Chronically Jenni
1 Comment
Happy December Everyone Sorry I’ve been super quiet on here but a lot has been going on! If you’ve missed it you can see what I’ve been getting up to every day throughout December over on my Youtube channel where this year I’ve got… Continue Reading “Spoonie Vlogmas!”
Category: Illness, UncategorizedTags: christmas, December, eds, ehlers-danlos, ehlers-danlos syndrome, heds, hsd, living with pots, postural orthostatic tachycardia syndrome, pots, spoonie, Vlogmas, zebra
Posted on November 6, 2017
by Chronically Jenni
29 Comments
Dysautonomia Awareness Month may be over but Dysautonomia is something people have to live with every day of the year. I made a video last month with 4 other lovely ladies who were all brave enough to share their story about Living with POTS.… Continue Reading “Dysautonomia Awareness Month & Recent Vlogs”
Category: Illness, UncategorizedTags: adventures, adventures with EDS, awareness month, chronic, chronic illness, chronic pain, dysautonomia, eds, ehlers-danlos, ehlers-danlos syndrome, Illness, living with pots, postural orthostatic tachycardia syndrome, pots, video, vlog, vlogger
Posted on November 1, 2017
by Chronically Jenni
2 Comments
Firstly, an apology that I’ve been so incredibly quiet on here lately. I’ve been so focused on getting some great videos out there for you guys that I have neglected my blog a little. But as I’ve said it I often so much easier… Continue Reading “My Invisible Journey – One Chronic Year On!”
Category: Illness, UncategorizedTags: blood patch, chronic fatigue, chronic illness, chronic migraine, chronic pain, csf leak, disability, eds, ehlers-danlos, ehlers-danlos syndrome, Illness, invisible, pain, postural orthostatic tachycardia syndrome, pots, vlog, youtube