A look back on the transcription of my neurology appointment .
Learning to live with Hypermobile Ehlers-Danlos Syndrome (hEDS) is not for the faint of heart. Everyone’s journey to diagnosis and beyond is completely individual. I would argue that while we share some similarities in our stories of how we got to our diagnoses…there is a vast difference between those who grow up ‘sick’ and those of us who lived our lives with a set of symptoms without benefit of a diagnosis. Here is my point: if you grow up knowing you have hEDS from the day you are born…that IS your normal. But what happens when you grow up not feeling well but you are still functional (friends, school, jobs) and THEN the syndrome progresses?? My supposition is that those two journeys are distinctly different.
I can’t speak to growing up knowing you have hEDS from a young age but I can share what it was like being diagnosed at age 36 after searching my entire adult life for answers. Initially, there is a honeymoon period after diagnosis where you are just so stinkin’ happy to have a name to put on your symptoms. Someone actually believed you after, what is most often, many years of belittling, doubting docs telling you that all you need is psychiatric care! This ‘diagnosis high’ as I call, can last anywhere from a few days to years. For me it was the latter. I was so relieved and astonished and happy that after 18 LONG years, someone had actually validated my symptoms. But what happens after that??
I was fully functional at the point of diagnosis…I had a job and friends and a life. Did I have pain and skin issues and digestion issues?? Sure, but they didn’t stop my life. Probably, the best gift I was ever given was from the rheumatologist who made the diagnosis. She said, “I think this is what you have, (handed me an article on Benign Joint Hypermobility Syndrome, which was what hEDS was called back in the day) it’s not life-threatening so go out and live your life.” And I did!
Four years later at the age of 40, I was unable to stand or walk for more than a minute. But imagine what might have happened if my doctor told me that this was coming?? She didn’t know if I would be one of the unlucky ones whose symptoms would progress or rather, remain benign. She gave me the gift of four years full of life because she didn’t assume the worst and plant seeds of worry in my already overactive brain!!
When I turned 40 and my body started breaking down, I had my first appointment with Dr. Brad Tinkle, world-renowned geneticist and expert on The Ehlers-Danlos Spectrum disorders. This guy wrote the book on hEDS…literally! I was skeptical as I went into our first appointment and even passive aggressive. History had taught me that best-case scenario, he would be aware of the topic, but have no helpful insights and worst case scenario, he would belittle my symptoms and demean my intelligence with a smug comments that would make Napolean look like Pollyanna.
Lucky for me he was patient and kind, and took over an hour to talk to me about hEDS and what this meant for my future. He told me in no uncertain terms that I needed to learn to pace myself…I could do many of the same things just not in the same way or at the same time. He created a protocol to manage the symptoms including pain, told me to quit travelling 180 days a year and come back same time next year.
As this new reality began to sink in, I went into a deep depression which was novel for me….not something I’m used to feeling. This downturn in my health caught me completely off guard. (I NOW know that being only slightly symptomatic and then having more symptoms pop up suddenly in your 30’s or 40’s is pretty common.) I was pretty ill but was hoping I could find my way back to a better quality of life. On some level, I knew that things were never going to be the way they were.
I started the grieving process for the life I’d already lived. It was as real and profound as any death. I grieved for the career I’d loved and lost. I grieved for the education I’d obtained and now could not use (3 Master’s degrees later!) I lost nearly every friend I’d ever had. And I lost myself. I didn’t recognize this person in the mirror who frankly looked like death on a cracker! What I now know, standing at this point in my journey is that you MUST allow yourself time to grieve the losses of the life you had and learn to live a new life. You must learn to let go and hold on all at the same time. And finally, it’s ok for grief to visit, just don’t let it take up permanent residence!
When you are diagnosed with any chronic condition, I think you have 2 options…
2. learn to fight
I’ll be honest…I floated for a long time…almost paralyzed by this new reality. I couldn’t see how I could loose all the things in my life that I thought mattered most (family, friends, career, mobility) and still have a life worth living. But after some time, and some better living through chemistry, I realized that there was beauty and joy in the world and that I could be a part of it (as long as I could sit!).
Here’s what I did, in no particular order:
1. Researched everything I could get my hands on about hEDS…knowledge is power
2. Researched medications…pharmacists are tremendous resources for info
3. Researched alternative or complimentary therapies
4. Began therapeutic massage, acupuncture, pilates, and physical therapy
5. Changed my hair, clothes, and work schedule to better accommodate my new symptoms
6. Altered my diet
7. Learned to meditate
8. Relied on family and faith…I drew tremendous strength from being ‘re-grounded’ in those relationships
Once the depression started to lift, I began to see the world through a completely different lens. Gratitude filled my spirit because I knew all too well, that things could be worse…a lot worse. It sounds cliché but it was as if the colors in the world where just a little bit brighter and I heard the sounds of the river flowing with greater clarity than Bose could ever dream about! Chronic illness has a way of instantly rearranging your priorities…things that were once super important are now at the bottom of the list.
One of the ways I cope is via humor. Generally speaking, I am a very positive, emotionally even-keeled, person but am known to appreciate irony and a good joke. If ever there was a condition that stood out for it’s comedic opportunities, it’s hEDS!
Think about it…the building material that makes of 80% of the soft tissues in your body is faulty and they can’t fix it or replace it and it’s only going to get worse as you age!! I can’t make this stuff up!! My instagram feed became an outlet for this humor and the realistic hEDS anecdotes that honestly fill my everyday life.
People often say to me questioningly, “So…you have this progressive chronic condition that caused problems in every body system and you live in constant pain…how can you be so positive?” The brutal truth answer: “What’s the alternative? Be miserable?” Not for this girl.
I returned to Dr. Tinkle one year later with local goodies from the town confectioner as a peace offering from my rather curt behavior a year before. At the end of our appointment as he walked me down the hall, he remarked with surprise, “You are a completely different person!” I thought for a moment and replied, “No, I’m not…I’m the same girl I used to be…it’s just that now I’m listened to and believed and am getting compassionate and quality medical care.”
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
Hello May, hello one year diagnoses, hello pieces of the puzzle I knew existed.
In short this is my story and contribution to Ehlers Danlos awareness month for 2017. For now, until the genotyping has been completed, and the source of our major malfunction has been revealed, awareness is the voice we have to lend hope to our struggle.