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How to Cope with Family Gatherings When No One Understands Your Illness

family dinner

The holiday season can be filled with moments of love and joy, but it also can be stressful for those of us living with chronic illness. This is especially true if your family doesn’t understand what you are going through day to day. If you are worried about managing the holiday season with your family this year, here are five do’s and don’ts to help you navigate family gatherings when feeling misunderstood.

  1. Let people know what to expect. If you don’t tell your loved ones what you need, they won’t be able to help give it to you. A close friend of mine keeps a live Google Document with a current health status, a list of foods she can eat, and a couple tips on how to best support her. Try making a guide like this of your own and share it with you family before you get together – more often than not, when people know how to support you, they will.
  2. When it comes to food, make something you know you’ll enjoy. One of the most challenging things about navigating the holiday season with a chronic illness is sorting out dietary restrictions. Before you get together with your family, spend some spoons on preparing a dish you know you can eat and will enjoy. This ensures that you aren’t left out of the family meal. If you aren’t able to make something for yourself, ask a friend to help you prepare before you connect with your family.
  3. Find an ally. Whether this is someone in or out of your family, find someone you can touch base with through the day. Family gatherings can induce anxiety for those of us battling illness and having a friend or ally checking in with you can make a real difference.
  4. Decide on a safe space to rest before you arrive. This is a big one. Make sure you have somewhere quiet and calming that you can retreat to. This might be a guest room, a study, even your car. If you have somewhere safe and comfortable to rest, you may have more stamina for the day.
  5. Try not to over-extend yourself. Family gatherings are exhausting even for able-bodied folks! Try not to give more of yourself than it is healthy to give. Does it make sense for you to come in before a meal and hang for an hour before going home? Do it! Even if they don’t understand your day to day life, most families want to love and support each other. By making choices that take care of YOU, you’ll be able to better invest in moments of positivity throughout the gathering.

Every family is different, and every illness experience is different – some are shaped by more toxic support relationships than others. But if you can communicate clear expectations, find support where and when you need it most, and be able to take yourself out of the situation when you need to – you’ll be able to manage your next family gathering with grace, positivity, and strength.

Blog post written by Allie Cashel, expert patient featured in the book Lyme Disease, medical myopia and the hidden global pandemic. Available from Hammersmith Health Books. 

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Are you One of the Billion Migraine Sufferers?

woman-migraine

There are one billion people in the world like me (and most likely like you too, since you are reading this blog): people who suffer from migraine. Although you already knew it was so common, you still probably feel (as I do!) that you are the only person in the world who suffers this much, and in a way no-one else can understand.

This is called the paradox of living with chronic pain disease. It is so much easier with flu: during the flu season most people around you are also sneezing, coughing and moaning, at workplaces or at home in bed. It helps to know that you are not alone. It makes suffering tolerable. When ill, you may enjoy being pampered by healthy family members. You may even update your Instagram with a photo of you on a couch in front of the TV with a blanket and a bowl of chicken soup. Post #sickasapuppy and empathetic faces, thumbs and hearts will fill the screen.

During migraine attack, there is no-one but you and the pain inside your head. The excruciating pain grabs all your attention, unplugs your power cords, shoots you with a taser, holds you to ransom. It allows no people in sight. Pillow adjustments by the loving spouse make no difference. Selfies do not even cross your mind. The only thing you care about is to get rid of the pain. You count the minutes.

Migraine is one of the most severe and disabling neuropathic pains one can experience. That is a solid fact. When, where and how migraine affects people varies considerably between people, and also within each individual. A billion people means several billion variations of migraine attacks. Not every attack is identical, nor are the triggers always the same. The pain-free periods between the attacks also differ. For the lucky ones, it is 24 months; for the unlucky ones, it is 24 hours.

A billion people is a massive peer group. That said, it is still only you who knows your migraine and only you can find the best ways to live a good and meaningful life with this disease. Despite this disease.

You don’t have to figure out everything by yourself, though. So much scientific evidence, and understanding of good practices, has emerged during recent years on effective ways to treat migraine attacks – as well as prolong pain-free periods – that all the tools you need for your own toolbox are already out there. You just need some easily digestible information, some perseverance, some help from skillful healthcare professionals…  and some support from the billion peers, of course.

Written by Dr. Helena Miranda, pain physician, chronic pain sufferer (including migraine), and author of the new book Rethinking Pain – How to live well with chronic pain.

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Natural Health Worldwide’s Registrar system – improving access.

For those of you who have read my previous Blog*, you will understand that the philosophy behind NHW is to connect patients from all around the world with doctors and health care practitioners, also from all around the world. So, a patient in Scotland may connect with a practitioner from Croatia.

Appointments are booked through the website, consultations are carried out by Skype, ‘phone call or email and then patients use NHW’s 5-star rating system to give feedback on their experience. This feedback is public and so informs not only the practitioner where they might improve but also the wider patient population of what their peers think of the practitioner in question. NHW puts the patient back in control of their own healthcare. This really is the path to a patient centred future**

The feedback from some patients has been very humbling. One practitioner recently received this email from a patient:

“Thank you so much for giving me your time and advice. I do appreciate it. It’s like a tangled ball of wool is being straightened out into some order and clarity. The detail in your notes is quite remarkable. You haven’t forgotten one thing we discussed.”

Excluding costs of tests, this patient has so far spent £30.

Dr Sarah Myhill (author of Sustainable Medicine, Diagnosis & Treatment for CFS/ME, Prevent & Cure Diabetes and The PK Cookbook) is the founder of this site and is also an NHW practitioner herself. This site is her gift to the patient community, and in particular, a gift to the ‘forgotten patient community’, those whom, like the patient above, have often been left to their own devices at a time when they feel at their most vulnerable. This site truly is a gift – Dr Myhill has funded the site’s development and its marketing and has simultaneously divested herself of any financial interest in the site.

And now we have a new exciting development – the NHW Consultant-Registrar system. One reason why Dr Myhill wanted to launch NHW was to cater for all those thousands of patients who have approached her for help in the past but who sadly she was unable to accommodate, simply because of time pressure. The NHW Consultant-Registrar is a further mechanism for reaching out to these patients.

This is how it works:

  • An NHW patient is consulting with an NHW practitioner
  • The patient and practitioner encounter a health issue on which the practitioner has little or no experience or perhaps just feels on shaky ground
  • By mutual consent between the patient and practitioner, the practitioner [the registrar] consults with Dr Myhill [the consultant] about this issue
  • Dr Myhill gives her views to the practitioner FREE OF CHARGE
  • The practitioner gets back to the patient with this advice and they can then carry on with their shared journey of discovery and improving health

As an example, one NHW practitioner recently was taking an initial medical history of a new NHW patient and had identified the following possible areas of concern:

  • Adrenal fatigue
  • Possible thyroid issues
  • Mitochondrial dysfunction
  • Potential workplace poisoning event

Both patient and practitioner agreed to pursue all avenues of concern. However, the practitioner felt that he needed guidance on the potential mitochondrial and workplace poisoning issues. So, by mutual consent, he consulted with Dr Myhill.

The upshot is that, as of now:

  1. The practitioner is helping the patient with her adrenal and thyroid issues
  2. Dr Myhill has referred the patient for a Mitochondrial Function Profile test and also a Comprehensive Toxic Urine test and will interpret both of those tests for the patient

So, this patient now has a ‘health-team’ supporting her and so far, excluding the cost of tests, she has spent £20. Also, in the process, the practitioner consolidates their base of understanding and often learns new techniques and skills. It really is a WIN-WIN.

In summary then, NHW has the aim of bringing high quality, affordable and supported healthcare to those forgotten patients who need it the most, and also to the population in general, with the ‘bolt on’ option of consulting, free or charge, with Dr Myhill via an NHW practitioner.

This really is a patient-centred future for healthcare, with access to health practitioners and lab tests all available at the click of a button, with that button being firmly placed at the end of the PATIENT’S finger.

 

Craig Robinson

 

Please see here for NHW’s Home page – naturalhealthworldwide.com

Please see here for the list of NHW Registrars – https://naturalhealthworldwide.com/news_content.php?chanel=14

References –

*My previous Blog on NHW can be found here – https://www.hammersmithbooks.co.uk/2017/06/22/natural-health-worldwide-changing-healthcare/

**My Blog on Sustainable Medicine can be found here – https://www.hammersmithbooks.co.uk/2015/07/23/sustainable-medicine/