Hi! So when Naomi asked me to do a guest post for ME/CFS awareness month and EDS, I asked what she wanted me to focus on and she left it up to me, so I thought I’d just tell you a bit of my story.
I am currently 38 years old and I’ve been diagnosed with:
- ME/CFS - Myalgic Encephalopathy/Chronic Fatigue Syndrome
- Ehlers-Danlos Syndrome type III
- I also have some EDS related illnesses including POTS (Postural Orthostatic Tachycardia Syndrome) and Mitral Valve Click Syndrome (Barlow’s Syndrome), NMH (Neurally Mediated Hypotension) and Gastroparesis
- Migraines/severe headaches
- I also have a few mental health issues
ME is a neuro-immune illness and is impacted at the mitochondrial level.
On the 15th of February 1995 I was taken for assessment to the specialist ME/CFS clinic at the Royal Children’s Hospital in Melbourne, Australia.
From grade 6 in 1992 until the end of my first year out of high school, I went up and down significantly with crashes and periods of semi recovery. I was never “great” but I got to a place where I could semi function until I would “crash” again for however many weeks or months.
By 2005 I was looking for an Adult ME/CFS specialist to manage my condition. It took a long time, for me to trust him and him to trust me, but now we have a reasonable working relationship.
It became clear that the pain was not going to go away and that I needed help. From around 2007 onwards I saw a Pain Specialist and I was also diagnosed with Fibromyalgia.
In 2015 I was diagnosed with EDS Type 3 (aka EDS - Hypermobility Type). It also explained the POTS and gastroparesis and other symptoms.
My pain just got worse and worse and worse. My second pain specialist got me into a Pain Clinic. I made it through all 12 weeks. My third pain specialist (who is my current one) is awesome. He listened to me and he knew what EDS was and he didn’t hesitate to give me medications I needed as a trial.
So this brings up a major topic I wanted to discuss… doctors! I’ve been fairly blessed because I’ve been able to find good doctors through referral of others and just pure luck.
Good doctors make a world of difference. I’ve had some crap doctors and doctors I didn’t understand, but when they’re willing to communicate and they’re willing to be there for you, then its so much easier to trust them, be trusted by them and get the help you need. It is also okay to tell them that you’d like to get a second opinion just in case they have other ideas or are more experienced.
At the moment I’m looking at getting a second opinion on what I can do for my ME/CFS so I can see if there are any treatments that I could have that might improve the quality of life.
Even with medications, it doesn’t fix everything, I’m still exhausted every day and ME/CFS sleep is not restorative.
So many people who have ME/CFS have pain; it does not automatically mean you have Fibromyalgia and being hyper-flexible does not always mean you have Ehlers-Danlos Syndrome or Hypermobile Spectrum Disorder.
The reason I advocate for a 'whole person' approach is because these illnesses are a whole of body system and that includes the environments, the triggers for what set off the ME/CFS or the EDS gets worse for some reason. But I've learnt a long time ago that I wanted to live my life and not be identified as 'the sick person' all the time. The fight is to live not just be alive.
If you’ve made it this far and you have questions just ask and I’ll keep an eye on the comments and try to answer whatever Naomi can’t in her brilliant knowledge (seriously guys she’s amazing), but one last thing. I asked my friends what they’d want to know about how to help people in this situation, the easiest suggestion is to just ask and be a good friend.
Always and forever,
Telle (@cracks_in_porcelain on Instagram)