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
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.