Help wanted. Hours must be flexible, pay poor. This job will interfere with your social life. Those with a morbid fear of doctors need not apply.
The sheer amount of time that I spend ferrying myself or the kids to and from hospital appointments is insane. With long-term conditions like Ehlers-Danlos syndrome, Charcot Marie Tooth Disease, Postural Orthostatic Tachycardia syndrome and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome it’s all about management. And management is all about being seen in loads of different hospital departments by a range of therapists and doctors all with the aim of helping you – well manage you – because no one has a magic pill to make all of this better. Orthotics, OT, physio, respiratory physio, cardiology, rheumatology, neuromuscular, fatigue clinic, ophthalmology, orthopaedics, urology, gastroenterology (and I’ve probably forgotten a department)! What this means for us is that at least once a week, sometimes more we trot off to one of the hospitals notes in hand.
Because there are three of us regularly seen being organised is a must. The kids each have their own file with all doctors letters, school reports, emails, telephone calls and minutes from meeting are stored in one place. Any diary’s I have been keeping to help keep track or symptoms are here too. At appointments I take a slimmed down version of the above with the latest letters from the different professionals copied and ready to share.
I think that I’ve picked up a few tips over the years. Here are a few pointers if you are just starting out as a professional patient or if you have been in the role for a while but are feeling a little overwhelmed and need to get back on track.
My Top Tips
1. You are your own best advocate.
Always, always remember this. It is top of the list for good reason. You know your self best and if you are advocating for your children you definitely know them best. Always trust your gut. You need to work with professionals to access the right services and treatments but you need to have a handle on the whole picture, particularly if you are seen in many different departments or hospitals.
2. Go into an appointment armed with information and questions.
Be prepared. Ask them to explain something in more detail if you are unsure. Ask to see you scans and get them to explain them. Ask them why they have come to their decisions about your care. In my experience most professionals enjoy this kind of interaction with their patients. If they are confident in the decisions that they are making then they are usually more than happy to take the time to explain or discuss things with you.
3. Research your disease or condition until you feel like an expert.
Read, read, read and when you think that you know everything read some more. You can be your own best advocate when you are empowered with the up to date information and research in your condition.
4. If you feel like you know more than your doctor, it’s time to find a new doctor.
Never be afraid to get a second opinion. You need to trust your doctor with your care and have a relationship based on mutual trust and respect.
5. Find support, whether through online communities, in-person support groups or therapy. You don’t have to go through this alone.
I have found some amazing support both at support groups run by charities and online. In the early stages after diagnosis meeting someone face to face with my condition helped me to put things into perspective. Always be wary of negativity online or falling into the “my symptoms are much worse than yours” trap, i have never understood why some people think chronic illness if a competition! Don’t be put off there are some really good groups out there you just have to find them.
6. Ask for help when you need it, it’s a sign of strength, not weakness.
I tell myself this everyday but putting these words into practice have always been hard for me. I am learning to communicate how I feel before I crash, instead of after. It’s much better for everyone.
7. Don’t ever let anyone tell you it’s “all in your head.”
It’s not, its real. Who are they to judge what is happening in your body just because they haven’t found the genetic markers for your condition. People with MS were told that it was all in their heads for years until the brain imaging was developed to identify the cause. Just because you might be having a good day doesn’t mean that you are cured. It also doesn’t mean that you shouldn’t enjoy your good days for fear of being judged.
For decades I knew that my body wasn’t right, I knew that there was something going on with me that no one had been able to explain, I was “full of things no body ever died of” as my Nan would so eloquently put it. I persevered and 26 years after symptoms started I had hEDS diagnosed. Don’t give up.
8. Educate the ones you love about your condition so they can understand how to help you.
Teach the people you love and trust about your condition, point them in the direction of places that they can go to learn more. And let them help you.
9. Be persistent with doctor’s offices, medical billing, and insurance companies.
Hospital letters and referrals get lost in the system, messages don’t get passed on, test result sit in someones inbox for weeks waiting to be actioned. It’s just how it is. You need to become a squeaky wheel, follow-up with emails and telephone calls just to keep all the cogs turning. It’s a pain that we have to do this to get answers, however, inaction can create serious financial distress in the long run, delayed referrals or test results.
10. Exercise in whatever shape or form you can.
Chair yoga, gentle stretching, walking, Pilates. It can help you to heal faster and teach you to listen to your body. I have learnt so much about the posture and alignment of my body through the practice of Pilates. Find something you can do, no matter how small and do it everyday. You’ll be amazed at how quickly your ability to do more increases if you are consistent.
11. Lastly, your disease does not need to define you. Find things that still make you happy.
You are more than your condition. A mum, a dad, a sister, a brother, an aunt, and uncle, someone’s child. You may be a great writer, artist, mathematician, a computer whizz or be able to talk the hind legs off a donkey. We all have strengths and we need to learn to recognise them and play to them. Focus on the good, always.
What do you love to do? Celebrate your strengths, let me know in the comments.
Hi Sarah, I’m a mom to a 13 year old zebra. I found your blog a few days ago when I saw the letter you wrote to teachers on how to recognize pain in children in school. I then went to the blog and I have to tell you, I feel a kinship to you. I live in the US, so I don’t know how things differ (specifically) in how this all works there vs here. I do not have EDS (as far as I know) I am however hypermobile. My husband (undiagnosed) and my oldest both have hEDS and my youngest daughter is also very hypermobile. We are two years into this crazy journey with my daughter, although her diagnosis happened a year ago. She has a few co-morbidities (IBS, Endometriosis, Hypertension, Migraines, and we’re about to see Cardiology for a work up for POTS – there is definitely Dysautonomia, just need to figure out exactly what). She’s also started having ringing in one of her ears and tingling in the side of her face so we’re seeing the ENT at our Children’s Hospital next week. She has pain every day for at least 2 years. I relate to your life. We are at Children’s Hospital at least once a week but sometimes more. So, here is my question to you, how do you learn to pace? My daughters Cognitive Behavioral Therapist says that she can do an activity until she is 2 points above her baseline pain. This is so vague/abstract to me. Our psychologist teaches not to ask our children about their pain, they’ll let you know if it’s that bad, there’s no reason to bring it up and screw up what might possibly be just another day. It’s obvious to me at this point that my daughter has about 4-6 hours a day where she might be able to be productive – maybe. As it turns out I have several acquaintances that I’m friends with through social media who also have EDS, but they still work and just don’t seem to have it as bad, or be in as much pain (not comparing, just stating how it appears). I know EDS affects everyone differently but why is it that my daughter hurts everywhere and can’t go to school, but these people carry on. I want us to appear to have a “normal life” too, I’m just starting to really wonder how you do that. I’m sorry if this is all over the place. I have embraced my role as my daughter’s advocate and try to educate myself as much as I can on all of her conditions and try to make things bearable for her. If you have any advice you can share on how you learned how to pace your children I would greatly appreciate it.
Thank you, I’m a fan!
Heidi AKA Emi’s mom
Nice to meet you 🙂
Pacing is the hardest thing I have ever had to master in my life. When I went into hospital on a pain rehab programme for three weeks and the therapists kept talking about pacing, pacing, pacing I honestly didn’t know how I would ever manage it with three young children and a very busy husband at home. Some of the concepts just seemed completely alien to me but I started slowly and gradually over time have made simple changes that make pacing just part of my daily life. For me as an adult planning was key so that I didn’t waste un-necessary energy on things – be that extra trips up stairs during the day to planning several meals in advance and ordering all the shopping I’d need at home to save me having to nip to the shop because I’d forgotten something. I conserved my energy whenever I could, sitting to chat to someone instead of standing for example (even on the good days). I was classic boom buster trying to cram things into a short space of time but instead I learnt to spread the same amount of stuff out over the day and because of that I would get to the end of the day in a little less pain. I also move regularly because sitting in one position when you hurt can make you hurt more. It’s a balancing act between not doing too much or too little. Learning this takes time and I’m an adult who can recognise the signs in my body and I still get it wrong and end up in tears because I’ve pushed a little too much and the pain is overwhelming but it has been the best way to manage my pain.
Managing this for the kids has been harder still. In our house they all know where they can go to get the stuff they need to help them when they are in pain – wheat bags, ice, epsom salts in a bath, the blankets to curl up on the sofa. We acknowledge that there pain is real – always – but help them to distract from it too. I don’t ask them every two minutes how they are but can usually see in there faces if they are struggling even if they say they are fine. I wrote an article on managing pain in kids – http://mystripylife.com/2016/10/childhood-pain-eds-cmt-invisible-illness/
All this baseline stuff is a good guide but Monday for example can be totally different to Tuesday for me. The way I approach it is to find what works on a normal day and then see if you can keep that going consistently for a bit. If you can, great, do a little more. If not do a little less until you can. There will always be bad days, don’t beat yourself up over it. One of my kids goes to school part time to manage her symptoms and allow her to have a life. We don’t get it right always as she always wants to be in on the action but it has been the best way to manage her fatigue and pain. She has laying down rest breaks at school and does her physio in school too so that she doesn’t have to do it at home when she is tired. She chills out regularly throughout the day to give her body chance to rest and doesn’t do any one activity for too long. She also has a wheelchair for longer walks or high pain days. She is in a much better place now than she was a few years ago. This was how it was – http://mystripylife.com/2015/12/eds-cmt-meltdowns-fatigue/ Another one of mine managed quite well until he was 12 then got more and more pain and tiredness and has developed ME/cfs and PoTS on top of hEDS. Maybe the ME wouldn’t have triggered if he had been managed better, who knows! Pacing for him is on a whole other level as even having a conversation at dinner time or a noisy environment can tire him out for the whole day. He doesn’t go to school at all and accesses learning online.
Stretching regularly and building strength so that the muscles can support the joints where the ligaments can’t can really help but it takes time to get there and is something that needs to be ongoing. When you are stronger pacing is easier.
Emi is so lucky to have you in her corner. Always, always remember that you know her best, the experts can give advice but don’t live with hEDS.
We have been through the whole testing for PoTS here too – if you have any questions fire away, I hope that helps with pacing a little – I think that I need to write a post on this!!
A zebra mum is definitely a force to be reckoned with 😉 Hugs S x
Spot on Sarah! Great post – sometimes it is tricky just remembering which hospital the appointment is at and as my dad says, “which ology?”. As for feeling like I know more than the doctors about all things EDS, don’t get me started!! “Of course, you were a nurse so you know all about it” errr…no! My speciality was Head & Neck cancer and palliative care!! Hope the kids have enjoyed the Easter hols and kept well. It is just a shame the weather has been so lousy! C x
I absolutely love the holidays. No school runs for the little two for two… whole… weeks. All half terms would be two weeks if I was in charge and I think you need at least three at Christmas – that holiday is far too busy!! And only two hospital appointments – bonus. Navigating Me/cfs has been an even bigger minefield that EDS, if that’s possible?!? I didn’t know you were a nurse. I get the same as I was a teacher but being part of the system as a parent is a VERY different experience. Load of love, S x