I receive a lot of emails and messages with questions from all of you so I thought I’d put together a little FAQ page to hopefully answer the most common ones. I hope this comes in handy! You can view my general About Me page here. I don’t regularly update this, so things may have changed!
What conditions do you have?
I have suffered from Ehlers-Danlos Syndrome for as long as I can remember, and in 2013 I was diagnosed with Postural Orthostatic Tachycardia Syndrome and Histamine Intolerance. The EDS is a connective tissue disorder that causes frequent dislocations, unrelenting chronic pain, gastric issues and extreme exhaustion. The PoTS essentially means that my autonomic nervous system can’t do its job and regulate my body, and the Histamine Intolerance led to me suddenly becoming sick when eating most foods or going near anything that had non-natural substances in them. I’ve also suffered from severe bouts of depression, although these are often either hormonal or reactive after I have a severe flare up.
Update: also ME/CFS. Not that it makes much of a difference to anything, really!
How old are you?
I’m 28. My birthday is in December. I got mistaken for a 16 year old a couple of months ago, so I can pretend to be significantly younger if I need to. Not that I ever really do.
Where do you live?
I live in North West London. At the moment I am renting a flat that is five minutes away from where I grew up so that my parents can help me out. I’m so incredibly grateful for all the support they’ve constantly given me. I wouldn’t be able to live alone without their constant help. I also end up going back to the house way more than I think my brother would like!
Why did you start blogging?
Initially it was a coping mechanism to help me during a particularly difficult EDS flare. I just so happened to be blogging (on an old blog) when I got diagnosed with my other illnesses. I started Instagram in 2014 as a food diary to help me keep on track with the dramatic dietary changes I was making. And things kind of just went from there!
You write a lot about spoons….what on earth are you talking about?!
The spoon theory is an awesome way to describe what life is like when you’re living with disability and chronic illness. I highly recommend checking it out here.
Can you give me a list of the foods that you eat?
I don’t really like discussing the specific details of my diet anymore. I know it’s how I started on Instagram, but I’m not comfortable with that.
Because I have histamine and gastric issues, my diet is really important, so I do have to watch what I eat to keep my stomach and my reactions under control. My whole thing is I’d like to give myself the best possible chance to feel as good as possible, so I cook a lot and I eat really healthily (most of the time). And anyone is going to feel better when they’re eating well than if they live off of fast-food (or, grilled cheese sandwiches…mmm…)
UPDATE: As with a lot of things, sometimes it just needs time to calm down. A few years out and my stomach issues are SO much better (I can eat!) and my reactions are really minimal.
I do have to keep an eye on my diet most of the time, but if I want a pizza or a burger or gelato, I’m going to have it. Being really strict and everything free didn’t make me better (in fact I got worse) and it made me miserable. I’d rather be happy. Life is hard enough as it is! I’ve written a lot about the dangers of the wellness industry and pseudo-scientific diet cure promises. Check out my blog to read more!
I’ve read that you stopped taking medication. Why is this? Are you anti-medication?
Wellness bloggers are not doctors or have any qualifications to recommend anything about medication. And it also shows a significant understanding of health and the real world – a lot of people are dependent on their medication – who the hell are they to tell anyone to stop taking it? There are a lot of legitimate problems with the healthcare system and the pharmaceutical industry that need to be addressed, but saying point-blank that medication is bad and wrong and evil is just ableist and disgusting. They often also have a fundamental misunderstanding of basic science, peddling pseudo-scientific ideas about what can “cure” chronic illness. It’s really dangerous and upsetting because I know how easy it is to fall into that world when you’re sick and desperate for something to make you better.
If you can find medication that works for you and helps you get through the day, take it. You should NEVER feel shamed out of taking your medication and never listen to someone on the internet that knows nothing about you.
I didn’t take medication for a really long time, and a lot of people asked me about it. It was never because I was anti-medication. It was because the medication that I had taken had caused really severe side-effects and made me unwell. But for many, those same pills were life-savers. Our bodies are all different. I wish those meds had worked.
Over the last year my pain levels have become more debilitating (a big part is because I’m working more than I should) and we are experimenting with new pain management medications. I currently am trying a morphine patch and take liquid morphine for the pain when it’s bad. I’m also going to have to look at other things to help with a back injury that was caused by literally doing nothing (yay my body). The morphine helps. Do I want to be taking it? Of course not. But it’s no-one else’s bloody business whether I take it or not, and I’d rather not be in pain, thank you very much.
Unfortunately there are so many of these conditions that still aren’t well understood so there really are very limited options for medication. I had my fair share of problems with doctors, especially when a medication didn’t work for me that did for other people. When there’s so little information and help out there because the science just isn’t there yet, it can be really hard. So all we can do is try, hope our doctors listen to us and find something that works. But even then, I know that even taking super strong doses of super strong drugs only take the edge off. But that’s better than nothing.
What’s your workout routine?
Ha. I wish. I love the way all bloggers on Instagram get invited to ‘work out to earn a brunch’. Just gimme the food, please!
Because of the fluctuations that come with EDS it’s really hard for me to have a specific routine. I do try to get some gentle exercise every day in the form of walking or pilates. I have learned how to modify the exercises to take into account my own limitations. One thing I have really struggled with is dealing with body image issues while struggling to find ways to exercise, and you can read more about this here and here.
UPDATE: I have bi-monthly sessions with a trainer at my flat to specifically work on strengthening the muscles around my joints. Every session we have to adapt to what body part is flaring up, and it’s nothing like what you would think a ‘workout’ would be!
Do you take supplements?
Yes, I do. I’m currently taking Vitamin D (I get my levels tested every few months).
What doctors do you see?
I don’t really see many doctors anymore. I have an excellent local GP who I see if I have anything new pop up (it’s really important to find an understanding one!), I have frequent osteopathy (which has helped me more than most things have in a really long time) with Tim Goullet of the Chelsea Osteopathic Practice at Triyoga on the King’s Road (it’s so much effort getting there!)
I was diagnosed with EDS by Professor Grahame at the Hospital of St. John and Elizabeth (I think he’s retired now), PoTS by Professor Mathias at the Lindo Wing, Histamine Intolerance by Dr Seneviratne at the Lindo Wing and ME/CFS by Dr. Murphy at the Royal Free. When I was younger I had physiotherapy at the specialist hypermobility unit at St John & Elizabeth. I also have a whole heap of other specialists that I’ve seen but I can’t really be bothered to trawl through my medical files for all their names!