Coffee with Esther (September 2022)

An Interview with Lynne Gordon and Jennifer Lamb

Hi All, 

I hope you have had an amazing summer. The weather has been very kind to a lot of us.  For some, this has meant it’s either been too hot, or too cold. 

The Virtual Coffee Breaks have continued throughout the summer and are gathering a fabulous group of regulars. So I thought it would be a great idea for you to get to know some of the loyal people that attend nearly every week. I invited Lynne Gordon and Jennifer Lamb to a virtual interview last week. 

It was a great video call which took a few hours to get the answers, as we were having a lot of fun. And what with our memories, we kept going off the beaten track from the questions. However, thankfully I recorded it so I could share their answers with you. I hope you enjoy it as much as I did asking the questions. 

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Hi, ladies, and thank you for taking part in this interview about Myelopathy.org Support Group‘s Virtual Coffee Breaks. 

Would you like to tell us a bit about yourself please?

Hi, I’m Lynne Gordon. I am from Scotland UK and 47 years old, and a very proud mum of two. 

Hi, I’m Jennifer Lamb. I am from England, 56, and single!

When and why did you join Myelopathy.org’s Support Group on Facebook? 

Lynne:

I joined the Support Group in May 2019. I was diagnosed with Degenerative Cervical Myelopathy (DCM) that month. The Neurosurgeon said I could have the operation, and to go home and Google the condition! I did, and once I got through the “cats and dogs with myelopathy” information, I found Myelopathy.org’s website. Through the website I then found the Support Group on Facebook. I underwent the operation in the same year. 

Jennifer:

I joined the Support Group in April 2022. It was after I noticed the word “Myelopathy’” coming up a lot in one of my diagnostic letters after my surgery in December 2021.  I have had previous surgeries in the past, (C5/C6) 23 years ago, and lumbar spine surgeries in 1997. I have had a lot of problems in the past. After researching the word Myelopathy online, I found the website Myelopathy.org. This site was a light bulb moment, and after reading through the website, I noticed they offered a Support Group on Facebook. I loved the fact the website and Support Group page are run by people with Myelopathy and professionals.

Isn’t it strange that most of us are told to go home and “Google it”, whereas normally, the surgeons and professionals tell us not to Google it! 

What would you say is the worst symptom of DCM?

Lynne:

I don’t know if I have one particular symptom as I tend to have a lot of symptoms at once. At the beginning there was a lot of neck pain and upper body pain, but now it seems to be all over, and my body feels totally different. The worst part of DCM is the unpredictability of the symptoms at any part of the day. Sometimes I can do stuff, and the next, I cannot, as it hurts too much. 

Jennifer:

I echo that Lynne. It’s the overall picture. The most irritating part is the constant pain and how that affects you mentally and physically. So one day the pain is in your hands and shoulders,  then the next it’s cutting off the circulation in your left foot. It also changes hour-to-hour too. You can be sailing along quite nicely and then the next minute, for some reason, the pain goes from manageable to chronic without any notice. I say a lot “I would love an hour without pain throughout my body”, to get over it, just to give me a break. (I think all of us have asked for that one hour, to give us all a break.) I get frustrated when I can’t say the words right from my head to my mouth. 

Both of the ladies agreed, if they are having a “good day” they tend to push themselves a little more, even though they know all about “pacing”. But it’s difficult to do when you live with a family who doesn’t have the condition, and don’t totally understand. Even if you live on your own, you tend to push yourself then end up taking four steps backwards.

The one thing that annoys both ladies about the DCM condition, is that people think once you have had the surgery, you should be able to get back to being yourself afterwards. People do not understand the condition. 

Why do you attend the Virtual Coffee Breaks so regularly? 

(Both Lynne and Jennifer answered this question identically.)

They join in because it’s the bit of the week when they can talk to people who understand where they are coming from. Plus it’s not all doom and gloom. It’s fun and a few laughs are had. It’s not always all about Myelopathy. We also discuss each other’s lifestyles, friends and families too. If they can help one other person out, it gives them a sense of achievement too. They also like the Virtual Coffee Breaks, because sometimes, you can read someone’s question on the Support Group, start reading the comments, and get lost with it. Whereas with the coffee breaks it is much easier to explain things face-to-face and to get others’ opinions and advice.

Both also said they don’t know anyone locally to them that has Myelopathy. So this gives them both a chance to catch up with some familiar people, chat, and become friends. 

Jennifer also stated, it’s great to pop it into your diary and know you have something to look forward to. It’s a safe space. 

Jennifer read my first blog and it was a “wow” moment, because she felt as if she was reading about herself. She then read about Lynne and again, and realised we are all very different, but essentially the same. And that made her interact more. She felt she was not alone anymore. 

Lynne stated the only other time you talk about Myelopathy is with professionals or a nurse. There are no local support groups. This is the only place she knows where she can talk openly, and get the support she needs. Plus it’s called a “Coffee Break”. The label “Support Group” is not great. Lynne said if it was labeled a “Support Group” she would never have attended, but because it was a “Coffee Break”, she logged in, and loved it. It’s not ALL Myelopathy. Lynne even attended when she went on holiday to Portugal! She had a lovely view from her hotel and we all felt we were there with her. Thank you Lynne. 

Why would you recommend the “Coffee Breaks” to anyone who hasn’t yet attended a Virtual Coffee Break?

Lynne:

Just try it. You have nothing to lose. You don’t have to share your story, you can just sit and listen. And you are made to feel welcome straight away. 

Jennifer:

Again I echo that. Just give it a go. You can be anywhere in the world. I am mostly in my car when I join in. I’m normally about to go in for a health appointment, or just coming out. But I pop on through my mobile phone. It’s simple. I’m no techno person, so I love that it’s so easy to join. Esther pops the link for the virtual room the night before. It’s at the top of the announcements section of the Support Group page. One click and you’re in…

Would you change anything about the Virtual Coffee Breaks?

Lynne and Jennifer both answered with: Don’t change it! Don’t change the way you do it. 

So now you know a little bit more about Lynne and Jennifer. I would like to personally thank them both for taking part in this month’s blog. And now realising why I love hosting these wonderful Virtual Coffee Breaks, we look forward to seeing you soon at the next one. 

Dates for the Virtual Coffee Breaks via the Support Group page on Facebook.

  • 15th September 6pm BST
  • 6th October at 11am BST
  • 13th October at 2pm BST
  • 20th October at 6pm BST
  • 3rd November at 11am GMT
  • 10th November at 2pm GMT
  • 17th November at 6pm GMT
  • 1st December at 11am GMT
  • 8th December at 2pm GMT
  • 15th December at  6pm GMT = Christmas Jumper Party! 

Then closed for Christmas but we will start again in the New Year on 5th January at 11am GMT. 

I hope to see you all soon!

Esther
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Note: This interview has been edited for length and clarity.

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