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Hi, my name is JenLeigh1953!

Hello
I have just joined the community, although have known about the good work that you do for many years.  Scope's advice helped me get back to study and work many years ago!  Unfortunately, after many years of mild/moderate pain and disability, my health has degenerated and I have other co-morbid conditions to cope with.  I have had ME, Fibromyalgia, Chronic pain and Spondylosis for many years.  I have now been told I probably have EDS and have recently been diagnosed with cervical and spinal stenosis and heart conditions.  Life is much harder now and I am house and sometimes bed-bound.  Like many of you, I suspect, Covid has added even more difficulties to those you have been trying to deal with, not least, trying to get some food into our houses via online deliveries that so many of us have been using for years.  The NHS and supermarkets have not factored in that our pre-existing needs are still there!  Some of us (although listed as NOT extremely vulnerable) are still vulnerable, in as much that we may not physically be able to shop and have been that way well before Covid existed.  

I hope that you all have the best Christmas that you can in this difficult year and that better times will arrive in 2021.  

Replies

  • Cher_ScopeCher_Scope Posts: 3,741

    Scope community team

    Hello @JenLeigh1953 and it's great that you have joined our community :)

    I'm chuffed to hear that Scope helped you get back to study and work some time ago.  What did you study?

    It sounds like you have a heck of a lot on your plate; will you be having it confirmed if you have Ehlers-Danlos syndrome?  (EDS)  Bearing in mind all the conditions your body is dealing with, you are doing a great job and I'm sure you have learnt a lot from your lived experiences.   Infact you might want to take a look at our Invisible Impairments discussions board to see if anything resonates with you, or if you could offer others advice.  

    You are right, the challenges of covid-19 have particularly hit disabled people hard.  We are talking about how we are all coping on this thread if you'd like to join in.  

    I hope you have a lovely Christmas and if you need any company, there is always someone around here!  Take care and hopefully speak soon.
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  • Ross_ScopeRoss_Scope Posts: 3,636

    Scope community team

    Hi @JenLeigh1953

    Thank you for joining, I hope you're well. Sounds as though you're going through a lot right now, I hope you're coping with it :) 

    Shopping has been a massive issue throughout the pandemic, and I'm aware that some supermarkets have responded better than others, but I hope lessons have been learnt this year and that the needs of disabled people will be considered more in the future.

    Merry Christmas!
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  • chiariedschiarieds Community Co-Production Group Posts: 8,614 Disability Gamechanger
    Hi @JenLeigh1953 - welcome to the community, & it's great to meet a 'possible' fellow EDSer.....I have the hypermobile type of Ehlers-Danlos Syndrome + neurological problems, & certainly share the chronic pain you suffer. Myself & son were diagnosed by a geneticist who specialised in connective tissue disorders such as EDS, Marfan Syndrome, etc. Sadly retired, or I would recommend him. Were you seen by a rheumatologist, or another specialist?
    Have you considered joining the EDS Support group, for a look around & more info? Please see: https://www.ehlers-danlos.org/
    There is in particular much good info with this GP's tool kit: https://www.rcgp.org.uk/eds       Whilst parts are not as up to date as I'd like, you might still find it helpful.
    I do share your thoughts that many disabled people, altho not considered vulnerable, many, myself included, just can't physically get out to shop, & that this was way before the pandemic.
    It might have been difficult to implement, but after those considered 'clinically extremely vulnerable,' those that couldn't actually go to a shop, whether it be due to physical/mental health problems, should also have seen some priority with their online shopping.
    I also wish you a lovely Christmas, & we're all hoping for a better New Year. :)
  • lisathomas50lisathomas50 Member Posts: 4,154 Disability Gamechanger
    Hi  my name is lisa  welcome and enjoy 
  • janer1967janer1967 Member Posts: 10,162 Disability Gamechanger
    Hi and welcome from me too 

    I agree about your problems online shopping did you register as a disabled person with your supermarket as they open slots for you and some even let you phone an order in for next day delivery I think its morrisons 


  • lisathomas50lisathomas50 Member Posts: 4,154 Disability Gamechanger
    Ihi I had the same problem but my local councilor got help for me for shopping as there are lots of volunteers  doing shopping for people  and you should be able to get priority slots due to your condition 

    Your local council if you phone them will be able to help and advise
  • Tori_ScopeTori_Scope Posts: 4,587

    Scope community team

    I hope you've been having an enjoyable Christmas @JenLeigh1953 :) How are you getting on today? 

    Have you been able to take a look at the resources the others have posted above? 
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