Hello am new to this forum
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Hello Everyone,
Would like to take some time to reach out and connect to all the carers within this forum. This is my first time on this forum ... well actually first time on any forum so not really sure how it all works (especially since I just wrote half of this post in the subject line LOL).
My name is Vicki and I am a full time carer for my wonderful partner Damien who has had MECFS for 16 years. It seems that Damien is in the small percentage where his MECFS declines over time. In 2020 stepped into being Damien's full time carer as his MECFS moved into the moderate (sometime severe) range.
Over the last year have found the importance of having my own support network of the right kind of people so to keep up and not lose sight of who I am and who Damien is beyond his MECFS. This is the main reason for reaching out here.
It would be wonderful to build a sense of connection and online community with you all since we share common ground. It is so healing to connect with people who understand MECFS and where energy isn't needed to go into explaining or even reasoning our situation.
MECFS is a silent disability and isolation unfortunately comes hand in hand with it, for the people with MECFS as well as their carers and family members. It would be incredible if we could reach out to each other so we know there is somewhere we can go when we need to be heard, laugh, cry, vent, listen or just be.
Understand how very vulerable time is and how difficult it is to find space for things. Personally will attempt to connect in here at least once a week on Wednesday mornings to see what is going on in everyone's life.
Thank you so much for taking the time to read this. Will be wonderful to hear from you.
Keep being incredible
Vicki -
@vicki-murtagh A big hello and welcome here!
No reply from the other carers just highlights how full on lives are when you are looking after someone with such complex needs, and trying to look after yourself too.
But won't they be glad to read your beautiful post.
Best wishes from someone who is just managing to care for herself, and hoping today is a good one, for you and Damien.
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Hello @vicki-murtagh. Welcome to the forum; you’ve come to the right place. Yes it’s the right place to come for connection, understanding, and the sharing of emotions. 🥴
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@vicki-murtagh Welcome Vicki and Damian.
It’s wonderful to have you here. There is a carers corner as well and I’m aware of a couple of other carers reaching out @kalimai @Claudia -
@dot This is only my second time on the forum and have already noticed your vibrancy and light on this platform. It is inspiring to see you reaching out and making a community here despite as you said ... just managing to care for yourself. Thank you for connecting in. May this day bring some joy to you.
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@glimmer thank you so much for welcoming me here. Over the last week have been sitting with the concept of connecting with people who also understand MECFS and who this creates a sense of ease within. Will be wonderful to get to know you more over time. Enjoy your day
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Hello @vicki-murtagh. Yes it’s great to be connected to people who UNDERSTAND and can relate to how tough it gets. Hope it’s a good day for you both.
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@lau_ea_aus that's great that there are a couple of other carers reaching out as well. Did orginially post this in the carer's corner and am comitting to hoping on the carer's corner every Wednesday to share and hopefully respond to posts from other carers. Thanks heaps
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@glimmer Completely ... it is a rest day today. But honestly my gorgeous partner really struggles with rest days on so many levels ... so I need to be more supportive and available for him on these days. Any suggestions of what you do as a part of your resting?
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@vicki-murtagh Well I couldn’t do without my IPad as it enables me to recline, which I have to do on a regular basis during the day to ‘rebalance’. So I play games, watch YouTube, visit this forum, listen to audio books, etc.
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@vicki-murtagh I just read your message. You made my day
Best wishes for your day!
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@Glimmer we actually purchased Damien a drawing tablet for his 40th last year and as I type this he walks into the room with his tablet in his hand to sit and rebalance after fixing up the internet.
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@Vicki-Murtagh Way to go!
