EDS Awareness month should be about helping each other in whatever means we can. I’ve rounded up a few deals to speak to mind and body in an effort to help you regain a better quality of life!
Hello readers, my name is Sophie,
I have had a liver transplant and I take medication that lowers my immune system to stop my body from rejecting my new liver, because of this I have ongoing health challenges, which puts me in the umbrella of people with chronic illnesses.
I believe that this affects my mental health because life in general can be really challenging and hard to cope with at times, and then if you add into the mix coping with your own health issues as well as daily life it all can become very difficult and spending lots of time in hospital as a child means that I went through lots of very frightening things and because of this I’m quite an anxious person.
Here are some things that I have found that have really help me to cope with everyday anxiety and when things are rather overwhelming.
I know this sounds simple but I prioritise allocating my budget for seeing a psychotherapist once a week.
I know for some people that just isn’t a possibility but there are lots of free counselling services, helplines, reduced rate services, or within your workplace some organisations will provide supervisors who are willing to let you talk, maybe its a person within your spiritual/religious life, maybe it’s an anonymous online service however you do it, you need to have a space where you can just talk about how you are processing everything that is happening to you, without judgement!
Here is a great pdf that explains what counsellors and therapists do - http://www.itsgoodtotalk.org.uk/assets/docs/Key-fact-sheet-1-What-do-counsellors-and-psychotherapists-do_1276789241.pdf
Here are some services where you might be able to gain access to free / reduced cost services. I did them for where I live but I got this huge life just through 5 mins on google so I’m certain there will be something available where you are too!
University services - http://www.bristol.ac.uk/student-counselling/
Womankind - http://www.womankindbristol.org.uk/
Local doctors surgery resources - http://www.oldschoolsurgery.org.uk/counselling.html
Off the Record - http://www.otrbristol.org.uk/
Online - https://www.7cups.com/
No-one knows you better than you so spending time figuring out how to best manage your condition is super important you need to become your own expert! I have learned so much over the years about how I cope day to day things like not overloading myself, remembering to eat and drink at the right time, knowing when to take a break, or when I need to get help.
The NHS have put together a great toolkit for self-care, I would suggest if you are new to this concept working through the booklet, and giving it a good go. You are more powerful than you know!
Mind have also put together a very specific guide for self-care and anxiety which I know affects SO many of us with chronic illness, there’s lots of info on here that’s really well researched and evidenced based so have a look!
I believe this follows on from self-care but if you’re feeling like everything is a little too much write a short list of things you need / want to do today and work through them. These do not need to be mammoth tasks like finish writing you dissertation (ahem I’m writing mine now) but maybe it’s something like read a couple of chapters of a book, or fold some laundry, or text a friend back, whatever you like! ALSO do not feel bad if you don’t get through them if you have only do two things on your list THAT’S GREAT. I make lists on the backs of old envelopes all the time and some days I get through very few and I still feel better that I made the list and had some focus than spent the day feeling more lost.
I get that sometimes you REALLY need motivation even to get to this and you need reward incentives on those days that even doing anything other nothing is hard – so I have something for you, especially those of you who are goal orientated or just LOVE playing games - https://www.superbetter.com/
So this app I find really useful because it allows me to accomplish small things like, drink a glass of water and it makes me feel like I’m really taking self care seriously and it helps me organise my life so again I feel a little bit more in control, which is a big deal especially when you can feel so powerless.
For those of you who are really creative and prefer to put pen to paper – try this - https://thehappinessplanner.com/ I got this for my partner last year (he’s also a human with chronic illness) and it allows him to really focus of things that are going to make him happi(ier) and obviously this is not a magical curative but putting your energy into things that can improve your life can only be a positive step.
Obviously, this is going to be different for different people for some this might be a half an hour run for some this might mean seated Zumba or yoga poses in a seated position or a 5-minute walk round the garden!
Everyone is different and as I have said before you know yourself best, if you can manage a yoga routine and going out for a walk for an hour fantastic! If you can manage to sit up in bed and do 5 mins of stretches that’s fantastic too!
For me I signed up do be a dog walker so I know each day I have the dog I know I must take her out so that’s a guaranteed 30-50-minute walk or I occasionally do yoga with my partner.
Exercise can help improve your sleep. Relieve stress, and reduce fatigue in some people (Sharma, Madaan and Petty, 2006), however always talk to your healthcare professional about what is appropriate for you.
Mind have a fab video that talks about getting moving and explains how it might begin to make us feel a little better, and without scaring you it does point how important it is to try to incorporate a little movement in our day because those with mental health issues may be more susceptible to other condition due to the lower levels of physical activity, so give it a go.
The NHS provides guidance for physical activity and has set up programmes like couch to 5k which have had huge amounts of success with people beginning to become more active
Sharma A, Madaan V, Petty FD. Exercise for Mental Health. Primary Care Companion to The Journal of Clinical Psychiatry. 2006;8(2):106.
Eating regularly and healthily
For me this is a pretty big one, if I haven’t eaten at the right time for me or if I have only eaten junk food I am noticeably more sluggish, I have less energy, and my mood can be really very low.
On days where I try and eat plenty of veg and some fruit and drink plenty of water, I tend to have less fatigue and my bowels are a bit happier, and my skin really looks clearer. On days when I’m very anxious it is really very difficult to regulate when to eat and what to eat, but I find that planning (see tip above) and preparing meals on a good day in bulk so that its easy just to get a box out of the fridge or freezer on a bad day I have helped my future self when I’m having a rough time.
Mind provide a fantastic page providing in depth information on this – http://www.mind.org.uk/information-support/tips-for-everyday-living/food-and-mood/about-food-and-mood/?o=6831#.WPON9lMrKWg with a really fab video which gets you thinking about ways to improve your diet by doing things like reducing caffeine, and eating the rainbow!
The Royal College of Psychiatrists have also identified and acknowledged how eating well and regularly is hugely important and have highlighted that having a stable weight, and having a balanced diet can help with management of mental health issues. It also discusses that some medications can pre-dispose you to weight gain, without shaming anyone who is having issues with their weight. - http://www.rcpsych.ac.uk/healthadvice/problemsdisorders/eatingwellandmentalhealth.aspx
The NHS provide a huge amount of resources and help with thinking about healthy eating too - http://www.nhs.uk/livewell/healthy-eating/Pages/Healthyeating.aspx
This all being said what will suit me and my diet may not suit you, so if you would like to start and you find this information a little too much to take in talk to your doctor, and ask about a referral to a dietician who can help you put together a meal plan that works for you.
So sometimes you can be very diligent with all of these things and things can still be really rubbish and that’s not your fault we all go through particularly bad spells and it can take a lot of hard work to get out of them, remember to ask for help..
All the best
I suppose these are my annotated frustrations from this afternoon's interaction with a physician. I will not divulge their name, specialty, or any information that can be misconstrued as defamation, for that is not my intention. Just my accounts of an interaction that was not necessarily medically accurate. I will also refer to this person as, "the other party" or TOP throughout in an effort to remove myself from any unnecessary negative associations, because that's just not necessary.
Inaccuracy #1 - I was not asked what my symptoms were when TOP walked in the door. I got the perfunctory hand shake/"nice to meet you" and bam "your MRI is absolutely normal." (First of all why start with that, and so emphatically using large hand gestures) "Okay , but the pain in my neck? It's causing strain and headaches." To which the other party responded "Ehlers-Danlos is not know to have chronic pain." To which I of course responded "of course it is." I felt myself getting very angry, and I grabbed the paper I had brought to help mediate our interaction, to try and be as productive as possible, entitled "Neurological and spinal manifestations of the Ehlers-Danlos Syndromes" and began to express my concern for a condition which was explained in the article, and fit the bill for what I was experiencing, as I handed the paper over. TOP took it from my hand and placed it immediately back on the chair next to my purse and said "Ehlers-Danlos does not present with [these] symptoms." I responded "If it does not present itself with [these]symptoms then why is there a paper on it?" TOP mumbled "American Journal of Medical Genetics, no," as they laid the article down.
Inaccuracy #2 - TOP also kept referring to a college friend who had Ehlers-Danlos throughout our interaction, and that he passed young from a vascular issue in his brain. Towards the end of our interaction TOP again referred to this friend, and said "but they have the genes figured out for all of the different types now." I responded "no they do not. They have not found the responsible gene for the hypermobile type." TOP responded "well my friend had type four." I said " they don't use that terminology anymore, there was a new international classification released on the 15th," then mumbled something I had a hard time deciphering.
Let's be honest, sometimes talking to a Dr. is like trying to hit a rubber wall with a with a piece of fly paper. You'll never get your point across, or anywhere for that matter because the other person in the room is not willing to listen. While this most definitely can, and DOES, happen with any random person you encounter, it definitely put me off for a moment. I have had a few great encounters with physicians. To be honest I know there are amazing doctors out there, I just haven't been physically in the presence of any who are interested in the pain, or the symptoms that I am experiencing. I can name people, but that would not take into account the dynamics influencing the other party. I understand the physician walking in the door who has never seen you may or may not have a million things running through their heads that day too. I also never wish to turn any personal documentation, post, opinion into a doctor bashing session. That just is not productive, and who has time to let situations that never gave you a road to journey down in the first place, your precious time or theirs?
I also wish to clarify that I am grateful for every single person/physician who devotes their life's energy to science, medicine, and being proficient in the art of human connection, and healing. I know there are enough caring physicians out there, that I WILL interact with one, or many of them. Physicians are people, sometimes it doesn't work out and that's always okay. I just realized that I am thirty-four and I can count the good experiences on one hand. The thought of hope that one of those encounters is in my future is reassuring. It was just hard for me to hit such a huge psychological wall only eight days after so much amazing and pertinent information has been released, referring to the 2017 International Classification of the Ehlers-Danlos Syndromes. Then my first appointment to be with someone so clearly not up to date on current information regarding Ehlers-Danlos or how it effects the body. There were many other glaring inconsistencies, and I literally almost walked out, but thought TOP deserved my full attention, as I wanted to have theirs.
While I realize the majority of this article is negative. So negative right. It's just an experience, a lesson. So many bad experiences. What key intent am I lacking, am I missing? I feel like I've been working so hard to be aware of my emotional responses and how they effect and aggravate an interaction. I almost feel like I should record my interactions to learn. What do you do in these situations?
Logic - Brush it off, focus on the positive experiences. Go plant sniffing in the garden (serious though).
Brain - &#^@)$(@^$)!_!^$*(#)+#@*@) <---- do you see the accidental bunny?
See there's a silver lining in everything. Don't let poopy situations get you down. Maybe I'm just not good at self-advocating. I know I shut down easily once a conversation starts to go south. My point is your general "don't let one bad apple" bit, there are more apples...you get it right? While you also have to not be the bad apple yourself, sometimes relations won't work out in the first place, and that may lead you down the road you need to be on. Keep looking for those things that nourish your soul. Hitting a wall doesn't mean it's the end by any means. Chronic pain, depression, and multi-systemic disorders are a labyrinth. Hitting one wall means you need to go in another direction to get through.
This freshly released collaboration of research articles, compiling hundreds of pages of research driven encapsulations of the varying manifestations from psychiatric/psychological aspects to chronic fatigue in hypermobile types. I have read and elaborated on nine of these articles, listed below. For the full 2017 EDS International Classification brought to you by the Ehlers-Danlos Society click here!
A highly suggested if not obligatory reading if you have any type of Ehlers-Danlos. In fact these should be emailed by diagnosing physician immediately after diagnoses so that patients can be equally present in their management of symptoms. As someone who was diagnosed 19 years after I first gathered the courage to ask a doctor for help, these studies have greatly helped restore my hope that those being diagnosed, treated, enduring, cared for, and altogether afflicted by the many draining, and multi-systemic, comorbidities are being taken seriously on a larger scale. Hopefully our children will not have to endure symptoms that rearrange our schedules at whim.
EDS is difficult enough to navigate, at least with the knowledge of these articles we as patients have the best tools to help us manage our symptoms until we have more effective options.
Each article is a carefully articulated synopsis of all of the research available, in each respective category. You can check my quick recap below each of the clickable links.
You can click on any of the following titles to be taken directly to their articles from the Ehlers Danlos Society. Thank you Ehlers Danlos Society for facilitating the release of these documents for us, and for creating the amazing "Your Questions Answered" brochure about the 2017 EDS International Classification, which you can also find here.
I implore anyone diagnosed with cEDS, vEDS, hEDS, and any of the rarer or associated Ehlers-Danlos Syndromes, care givers, and loved ones to make time to read through each and every one of these articles. The information is invaluable, and will help you be better prepared as a patient when it comes to providing and receiving the best care available.
Brad Tinkle, Marco Castori, Britta Berglund, Helen Cohen, Rodney Grahame, Hanadi Kazaz, and Howard Levy
One of the laregest of the articles, this is the best intro to hEDS . From clinical description to quality of life and a wide overview of the varying comorbidities, these 22 pages are full of vital information to help you guide your healthcare plan of action.
Jessica M. Bowen, Glenda J. Sobey, Nigel P. Burrows, Marina Colombi, Mark E, Lavallee, Fransiska Malfait, and Clair A. Francomano
A wonderful breakdown, and literary map, of the genetic sequencing that unfolds into the physical and invisible traits of cEDS. Even if you do not have this type, the information here is so useful in understanding the characteristics of COL5A1 and COL5A2 mutations which embody cEDS.
Alan Hakim, Chris O'Callaghan, Inge de Wandele, Lauren Stiles, Alan Pocinki, and Peter Rowe
A great overview of the cardiac involvement within the Ehlers-Danlos Syndromes. I love that this complation takes you from the clinical history to the management and treatment of POTS, OH, and OI.
John Mitakides and Brad Tinkle
Another great overview of the many different manifestations linked to the oral and mandibular regions. TMJ, CCI, TMD, tissue fragility and treatment therapies are explained to great detail.
Antonio Balbuena, Carolina Baeza-Velasco, Andrea Balbuena-Cabre, Guillem Pailhez, Hugo Critchley, Pradeep Chropra, Nuria Mallorqui-Bague, Charissa Frank, and Stephen Porges
I was elated to see that not only was this addressed independently, but that the care and attention to detail in the article were definitely in tact. I absolutely believe the connection between the Ehlers-Danlos Syndromes and depressive, and psychological conditions deserves our full attention. We cannot improve our quality of living, or the way we engage our health management without addressing this. There are three great diagrams which outline the cycles of eating disorders, the "Roles of Mental Health Professionals in the Management of JHS/hEDS," and neuroconnective model used to illustrate how important the implementation of a multidisciplinary team is in symptom management.
Alan Hakim, Inge de Wandele, Chris O'Callaghan, Alan Pocinki, and Peter Rowe
The dreaded CFS, destroyer of motivation and most things fun. Another very common concern across the Ehlers-Danlos Syndromes. A great review of the MANY intricacies of CFS, and how to engage recovery effectively.
Asma Fikree, Gisela Chelimsky, Heidi Collins, Katcha Kovacic, and Qasim Aziz
GI issues are rather universal among the Ehlers-Danlos Syndromes, and I thoroughly appreciate the points they eluded to about the importance of nutrition, and the decreased quality of living amongst those with overlapping GI symptoms. Another imperative read which has explained so much of my youth.
Pradeep Chropra, Brad Tinkle, Claude Hamonet, Isabelle Brock, Anne Gompel, Antonio Balbuena, and Clair Francomano
I was most excited to read this article. Another great collection of undeniably pertinent information when it comes to the mechanics of chronic pain and the methods most effective to manage your pain. There is a great table of the types of pain in hEDS, and a wide range of alternative therapies I hope my MDT will be open to trying. I will say, however I was disappointed that while opiods were illustrated as an ineffective long term treatment option, I felt the issue of pharmacogenetics should have been addressed as well. This may be a personal issue, however I have heard medication intolerances echoed among patients and feel this would have been a great place to address this.
William B. Ericson Jr., and Roger Wolman
For those of you with frequent, or even incessant subluxations, and full dislocations this is a great window into the disconnect you may observe when visiting your orthopedist. There are some valuable pointers on how to make the most of your visits, when pain management is at its' most critical for those greatly affected by severe joint laxity and instability.
Our time is now. If you would like me to provide a brief synopsis of the remaining articles, please leave a comment below.
How I utilized relaxation techniques to help work through episodes of anxiety related to a medical procedure.
GRAPHIC CONTENT WARNING** There is a photo of the injection sites at the very end of this article of my wounds less than 24 hours after the procedure. This is intended to be a visual aid to chronicle and study the healing of these sites. Note also that I am not a doctor, these opinions are my own. Please consult with a physician if you have specific questions or needs. This article does contain some affiliate links, and some other links intended to help connect people with products or items that may help with their well being or recovery if needed.
So this is what I had done yesterday. Bilateral hip MRI with contrast, injected directly into the hip joint through VIR. Want to know more about what Vascular and Interventional Radiology is, click here.
I can't tell you how nervous I became when it hit me that they were going to be injecting fluid into my hip sockets. The literal pivotal point that scares me the most about the possibility of not being able to use my leg. I'd personally rather not touch it, which is why almost exactly 20 years after expressing concern for the first time to a medical professional about the discomforting pain the dislocations of my hip have been causing me, I had it done. I need answers, and I would like to continue to walk, if possible. While that sounds dramatic, that is exactly what is running through my head, exactly what triggers anxiety in me. Exactly how I feel every time shooting and disabling pain runs through the socket of my mobility like a loose cannon ball.
Using tools that have come my way I decided to be proactive the day of my Interventional Radiology (IR) procedure. While it can be difficult and taxing physically and emotionally, I wanted to attempt to use the tools and methods that have worked for me. I am so happy I did, and I really feel like it went well.
Great thing about investing in your general and mental health you pick up tips to help deal with extremes and stressful times. I subscribe to an amazing all inclusive beauty, skincare, wellness subscription box called Beauty Heroes. This last month's Hero was the Osmia Organics Night Body Oil. "A concentrated blend of intentionally sourced essential oils infused into a complex base of skin-strengthening botanical oils," presented here as this glowing bottle of relaxation intended to trigger a neurological response from the intoxicating blends calming your central nervous system preparing your body for rest, thank you Pavlov. This proved to be an amazing relaxation tool in the procedure room.
We've been loving this oil, and seeing great results this the last week using it to wind down for sleep, so I eagerly pumped away at the back of my hand and the back of my hand right before I left the house yesterday, and then covered my hands with my sweater to preserve the integrity of the oil. Made sure my lip doctor sidekick was with me to combat nervous dry lips, and headed out. I didn't quite feel nervous until I they strapped my body to the bed. I quickly slid my available arm out and inhaled as deep as I could, and I was immediately relaxed. So thankful for this glowing bottle right now, and my intuition to use what I have on hand as far as skincare, to help me adjust to a stressful situation. Tools can be as simple as the things that make you feel the most cared for. A luxurious body oil, when connected to an intentional mental cue to relax your nervous system becomes a powerful tool among the chronically ill, depressed, and anxious.
Point is, this is a relaxation technique. We have a responsibility as a patient when we consent to procedures and want answers to treat the human on the other end of the chart, the needle, and the bed in every gauge of medicine with respect. We should be conscious enough of the fact that our energies and states of mind effect everyone involved. These techniques settle your mind and body and prepare you to deal with events. Through the injections I practiced a metered breathing of my discretion. We are all different, you may count to 3 or 7, or sing a song, but find your groove. I asked the doctor if my deep breathing was "disturbing" him, and he said, "no it's great!"
Applied technique, communication, and making other people feel appreciated might not change a good, bad, or unwelcome events, but it changes your experience, which ultimately alters our perceptions and abilities to deal with the stresses of our conditions. Run-on sentence aside, I realize this journey is not complete, and I do not want a legacy of stressful memories, rather meaningful interactions.
I was able to watch the enthusiasm and guided intent of a doctor as he accurately guided instruments into a human body, my body. I learned the shape of my pain yesterday, the ring of Saturn, and it was a stunning sight to be honest. I can't wait to order my MRI's so I can watch the results unfold.
So this is me right now, with my Bauerfeind Sacro-Loc to help keep my PT ice pack in place. Inhaling some relaxation, with my knee (which is feeling the effects of my body trying to break down and remove the excess liquid in my hips) propped up on my Savvy Rest pillow. I had it on a regular pillow, but the organic kapok in these really allows the pillow to mold to your joint reducing pressure and stress to aid in healing.
Also enjoying my Savvy Rest body pillow for much needed lumbar support for the same reason. This pillow also acted as a great blockade last night for my 3 year old. I actually felt safe in bed, and was still able to hug it and alleviated the tension from the angle of my femur.
What you can't tell from this photo is I'm also indulging in a deep healing facial mask, and in constant throbbing pain. It's actually the pink bottle in the photos, another beautiful gift from my amazing friend Kapua of Honua Hawaiian Skincare, the Pa-Akai Cleansing Cream and Mask. Pure and gentle full of the healing properties of salt, oils, and all thing beautiful from the sea. If I'm going to be laid up, I might as well be working, taking care of my skin, and comfortable right?
Although this brace appears to be sitting a little low, I am not using it for support. I set it specifically to cradle the gluteal hamstring muscles which are not engaging to support the front of my body's weight. This belt also has removable pads to help place pressure on specific points of your back to relieve pressure. While great walking around, when I sit on them my legs and rear end begin to go numb. So listen to your body and only direct and place pressure/support where it can handle it. I've also tried to rest my laptop on my left leg instead of my right, and lift my leg from behind my knee to completely alleviate any strain on the front of my hips. You can find a great overview of general hip anatomy right here for those interested.
I am also applying the Copious body serum from Khus Khus Herbal This serum has ashwagandha and CBD oil. CBD, or cannabidiol is a non-psychoactive concentrate extract of hemp. It is "highly analgesic promoting the reduction of pain + inflammation in the body." Ashwagandha has antiinflammatory and muscle relaxing properties and is a large part of Ayurvedic healing. I apply this around the injection sites, and let it sink in. Don't touch the entry points/broken skin for at least 24 to 48 hours or longer if you can bare. These represent an open, however closing, path directly to your hip joint, not touching these greatly reduces the probability of joint infection of the synovial fluid.
Not only is preparing yourself mentally important, but setting up healing time, letting the light in, and doing simple things for yourself have such an impact on your mental well-being. Just setting up the original photo flooded my room with so many great colors and warmth, it's changed the whole mood of the day. Flushing your body with water after should also help you body detox and aid in the excretion of the liquid from your body.
You deserve to be happy and at least mentally healthy through your struggles. My mental health switched gears the minute I decided to do something for myself, and that was skincare for me. I revel in getting something beautiful and healthy for myself once a month, and Beauty Heroes never fails me. If your passion is feeling good from the inside out, give them a peek. It's always okay to treat yourself, you're the only one who knows when you need a pick-me-up.
I definitely still have my moments, my triggers, and my downfalls, but being able to see beauty and learn new ways to communicate has been immensely helpful. If you ever have any questions about techniques, products, please don't hesitate to reach out. If you're interested in the Night Oil from Osmia, click the Beauty Heroes link. You can subscribe, or just purchase the product in the Beauty Heroes, Buy Beauty section. If you do wish to subscribe, you have until the 20th to get in on the Night body oil bundle! I also highly recommend watching the inspirational videos of Beauty Hero's creator Jeannie Jarnot's interview with Osmia creator Dr. Villafranco here.
Do you use any techniques? Was this helpful? Want to contribute your story? Let me know!
GRAPHIC CONTENT BELOW
These are my injection sites R and L at 1:00 p.m., less than 24 hours after procedure. I find it interesting how the bruising on the right hip, the one that causes the most problems decided to pool under where the band aid was, and that my stretchmarks on my right hip and the slight stretch on the thinner skin of my left hip look like zebra stripes. Also the one that actually bruised is the hip that gives me the most grief. My dear friend says the left hip looks like I got bit by a vampire. I presume the lower point of entry on the right is the original site that administered the lidocaine, and the larger entry on the left is the larger needle which administered the contrast fluid. Side note, experiencing slight hand and left thigh tremors at the moment, hypotonia? Definite persistent weakness and numbness down the front of both legs.