Chronic Pain, Disability, Disability Awareness, Ehlers-Danlos Syndrome, health

Ehlers Danlos Syndrome From an Outsider’s Perspective – My Granny

Today marks 4 weeks since the start of this blog series and today’s post is written by someone extremely special to me, my Grandmother.

I have always had an extremely close bond with my Granny. When I was little, I loved being treated to a meal out with my Granny because she would always let me have a dessert when my parents wouldn’t because of my allergy. I have so many memories of us together, including making picnics consisting of mostly mango jam sandwiches and eating them on the beach in between rock pooling, fish and chips and birthday cake at Cobo Bay, shopping trips together and late evenings playing canasta and accusing each other of cheating.

As I grew up, my Grandparents were always involved, they came to my school speech days, my Granny taught me my times tables, she helped me learn how to write good essays and how to revise effectively, I would always call my Grandparents straight away if I needed help or advice, whether it was academic related or personal.

Now as a fully-fledged adult, I still call my Granny most evenings. The only difference is that our calls are less advice orientated now and more catch ups and jokes with the occasional reassurance when one of us is worried about something. I always look forward to my trips to Guernsey where I get a whole week with her and my Grandad, we stay up late and eat cereal for dinner, we go on trips along memory lane and reminisce about all our family memories, we play canasta and we laugh until we cry (a lot).

I am so grateful to have such a close relationship with my Grandparents and I think the below post reflects our relationship pretty perfectly.

Name:

Pamela Cann

How do you know me?

I’m your grandmother and I’ve known you all your life from the moment your father phoned to tell us you’d been born and we flew over to England to meet you whilst you were still in hospital.

Had you heard of Ehlers Danlos before I was diagnosed?

No. Although we had always been concerned about your bouts of ill health, until your EDS diagnosis we hadn’t realised that there was a connection.

What is your understanding of what Ehlers Danlos is?

It is a connective tissue disorder which affects the whole body although not everyone has the same symptoms and it is difficult to get a correct diagnosis. It is a little like being double jointed and flexible taken to extremes. You never know where the pain will be next, how bad it will be, when it will strike or how long it will last. You do know that the pain will never go away but will vary in degrees of severity.

What do you think an invisible illness is?

An invisible illness, physical or mental, is one with no obvious external signs and yet many of the everyday tasks and activities most people take for granted are hard or impossible to achieve and cause pain and exhaustion.

What is your understanding of how Ehlers Danlos affects me?

Although you do everything in your power to lead a normal life there are many times when pain and exhaustion overwhelm you. I have seen how your knee suddenly gives way and you fall to the floor. I’ll never forget our trip to Liverpool to see your father’s memorial brick on the Everton wall and whilst I visited the Beatles Museum, you and your mother spent the morning in A&E. Nor will I forget the train trip home with you in your pyjamas, on crutches! I know how you worry about the effect EDS is having on your heart. You love cooking and are an excellent baker so I know that you are in pain and exhausted when you order take-aways night after night. I see the pain and sadness in your eyes when I speak to you online and you are curled up under a blanket.

What is it like having a family member with Ehlers Danlos?

You are not defined by EDS so you are Lauren, a much-loved family member. However, we accept that some days are not as good as others and that you cannot always summon up the energy to do all you would like to – although you never use EDS as an excuse it does affect your stamina and your ability to do many things. However, you are always caring and family is important to you. We appreciate how you have always invited us to all the important events in your life – Speech Days, School Leavers’ Dinner, your Graduation ceremony – indeed the whole Graduation weekend!! I loved the Surprise Afternoon Tea you invited me to at Egerton House in London to say thank you for the support we’d given you through University – you’d even organised a nut-free tea for you and a dairy-free tea for me!!! Both Grandad and I loved being included in your 21st Birthday week-end in London and we always look forward to your trips to Guernsey. We’ve really missed being able to see you this year.

What is the hardest part of having a family member with Ehlers Danlos?

Not being able to take the pain away for you.

Seeing you struggle on knowing there’s no end in sight.

Worrying about your future, especially as we are getting older.

What is the best part of having a family member with Ehlers Danlos?

EDS is part of who you are but, hard as it is, you haven’t allowed it to dominate your life. You are still essentially chatty, caring and loving. We share an enthusiasm for fashion, especially shoes, even though EDS limits the styles you are able to wear. We both love handbags, although, because of your life-threatening peanut allergy, you always have to choose ones large enough to hold your Epipen.

Grandad and I have all the lovely gifts you have made for us throughout your life from the hand painted puffin from Oatlands Craft Centre to the message you wrote in the sand at Pembroke Bay, photographed and turned into a framed picture for us. Your gifts are always so thoughtful and your cards so amusing. You are always honest but tactful – I love it that when we go shopping together you always say ‘comme ci, comme ca’ when I ask your opinion of something you don’t think suits me. I’m really pleased that you are now more open with everyone about how you are feeling as I think keeping it to yourself did cause you some friendship issues at school when not everyone understood or made allowances for your bad days.

What do you wish people knew about Ehlers Danlos?

I wish they knew how apparently healthy young people can be exhausted and in pain. I wish they knew that being able to do something one day doesn’t mean you can do it the next – then they wouldn’t be so quick to judge apparently healthy people, especially young people, when they need help, for example a blue parking badge, taking the lift instead of the stairs, sitting down in a limited seating area, needing a wheelchair at an airport etc.

What would you say to people who don’t know anyone with a Chronic illness?

Keep an open mind and don’t be judgemental when you meet or see someone behaving in a way that you consider wrong.

Be helpful if you can, be understanding, be kind but always treat someone as a person and not an illness.

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