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How's everyone holding up

Firefly123Firefly123 Member Posts: 525 Pioneering
edited April 2020 in Coffee lounge
Hi how's everyone holding up. I'm finding the days seem to be blending together. My young adults are out of sorts as so many changes to their routines. Just taking each day as it comes x
Meant to post this in the coffee lounge. 
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Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Firefly123, thank you for checking in with everyone. I too am finding that days are blurring into one.

    For me routine has been key. How are you doing today?
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  • Firefly123Firefly123 Member Posts: 525 Pioneering
    @Chloe_Scope I'm just taking each day as it comes. My young adults are not dealing so well all stuck at home together with no routines it only takes one to set all 3 off. 
    I think it's going to last a long. While yet so just need to get through how we can x
  • April2018momApril2018mom Posts: 2,869 Member
    Not happy.
    My family’s medical appointments have all been cancelled. One child was booked for a speaking valve evaluation appointment to see if it would work or not. She was scheduled for her routine vaccinations and another assessment appointment with a local zero to nineteen team for my area. I had also pushed for a Portage initial appointment for her as I know that she will need lots of intervention and therapy. Cancelled.  
    And DS had a spina bifida clinic day appointment with his care team too, also cancelled. This is the very important one when I meet a bunch of doctors and consultants and discuss the future as well.
    We also typically make some long term plans and then they order any essential equipment on his behalf. His urologist also does a urodynamic test to see what his bladder is doing. I also see the hospital therapists and we carefully evaluate his overall development and progress. That annual appointment was tomorrow. I had some other non routine appointments in addition. Again I was told they had postponed them or cancelled altogether. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    @Chloe_Scope I'm just taking each day as it comes. My young adults are not dealing so well all stuck at home together with no routines it only takes one to set all 3 off. 
    I think it's going to last a long. While yet so just need to get through how we can x
    I can imagine it can have a big impact on everyone in the house. I hope you have a good day and can keep preoccupied. 
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  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Some days are better than others. Today was a quieter one.Even the dogs are like why are you's all still here 😂 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited April 2020
    Hello @Firefly123   Sorry to hear that your suffering.

    On my own every day so days do blur means some humorous times.

    Is this Saturday or Sunday have to check diary.

    Had when a car went out thought roads very quiet and shopping bought a lot.

    Came home switched on TV where's my programme realised was Sunday . Bought the same shopping tins and produce as well.

    Turned up for appointment early and a day early.

    Learnt this so use diary have no senior moments.

    Ideas for you all.

    Make and create food sauces and for freezer. Together helps makes things such as Beef burgers, Meatballs and do an assembly line.

    Other ones are Pancakes the older children young adults do cooking classes minor skills all young adults should know basic cooking lessons and skills.

    How to make simple sauces offer to supervise all times say make us evening meal or lunch does help.

    Can help ask me happy to do so, does help self esteem . Recipes and anything like that.

    I used to have Italian friends all the children making Meatballs and sauces young sort of age learning to bake making simple Pastas and meals.

    I used to have friends children to care for while Mothers at work did a lot of routines and plans to keep them occupied.

    Do a rota of routines task such as house work chores and offer rewards incentives.

    Puzzles books Arrow words Word Searches help.

    Music therapy dancing and keeping fit does not have to be hard, stretches and Tai Chi help me mornings.

    Crafts and art classes lots of time together use board games or learn teach them chess.

    Lots of my time being here.  Using forum helps.

    Always here to chat talk how can I help many times a day a week, so please if I can be a shoulder please do.

    To reassure you not alone many members of our communities and families suffering.

    We need to be patient tolerant and kind to each other.

    Any problems happy to be supportive.

    Please take care, safe and keep in touch.

    @thespiceman




    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Thank you @thespiceman some very good idea:s.

    I managed to get a few pancake mixes ect and one is addicted to cookies 🥠 has a real problem if he doesn't have any so we made some..
    Now only if I could make chicken nuggets like mcdonald's. 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Firefly123 You can bake them Chicken Nuggets whatever part of the Chicken that is lol..

    Did not know Chicken had nuggets?

    Looking for take out easy meals children adults have lots , contact me lot healthily easy freezer friendly and make them together.

    Chicken Nuggets this one do .

    For you a recipe little introduction to mild spices.

    Need Chicken Breast diced used 500g pack.

    Natural Yoghurt 150 ml.  or Greek.

    Breadcrumbs 100g 

    Tikka Masala paste  3tbsp

    Onion Garlic Powder.


    METHOD

    Chicken to a bowl with curry paste and yoghurts coat cover two hours plus fridge.

    Blitz up bread food processor any to make breadcrumb season Onion Garlic Powder.  To taste.

    Oven 200 plus heat up. Cover Chicken in to Bread Crumbs coat on  to baking sheet oiled .

    Cooked till crispy.

    For twenty minutes. adjust timings.


    @thespiceman

    .


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Thank you @thespiceman
    I hope you are keeping well x
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Firefly123   Thank you for kind words . Coping OK what is important is you and the family or loved ones.

    Not me the members like yourself come first I always thoughts thinking of those in my heart and prayers.

    I live on my own used to it but do have mental health with any of it and learnt to adapt.

    Those who of our community struggling may be having symptoms of anxiety so please if you think you may need some advice.

    Contact me.

    Happy to offer advice, help and information.

    One other being with any families strains and stress can occur so please ask me ways to deal or cope with.

    We all in this together and as a community we need to be patient tolerant and kind to each other.

    Here for recipes well being and health friendly advice chat talk ask me anything .

    Part of our role as Community Champion. Pleasure to help tag me in.

    Please take care and safe .


    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Hi @thespiceman you do matter and are as important as anyone in the community.

    Some days can be more stressful than others. We just have to get though it as best we can ☺ x
  • April2018momApril2018mom Posts: 2,869 Member
    I will admit that I have been struggling emotionally. I am a sociable person by nature. How is everyone this week? 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Some days are better than others. Today was a quieter one.Even the dogs are like why are you's all still here 😂 
    My dogs have been loving it @Firefly123!! More snuggles and attention!  :D

    I will admit that I have been struggling emotionally. I am a sociable person by nature. How is everyone this week? 
    Sorry you've been struggling this week. I've been really tired so have been watching films on an evening and relaxing. How are you doing @April2018mom?
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  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Hi, @April2018mom sorry to hear your struggling it does get a bit emotional. Virtual hugs.
    @Chloe_Scope it is rather tiring doing not a lot the days just blend together.

    Stay safe ladies x
  • 66Mustang66Mustang Community Co-Production Group Posts: 4,690 Disability Gamechanger
    I have heard before that not doing a lot actually makes you more tired. I tend to agree with that!
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    It feels like it to me I need to try and be a bit more active. As my muscles are so painful at times I can't move but they seem to ease with the weather. 
  • deb74deb74 Member Posts: 754 Pioneering
    I have had that dreaded virus and have been having an ME relapse for the last 7 days I am hoping it won't last much longer. I am getting fed up with it!
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    So sorry to hear that @deb74 wishing you a speedy recovery. x
  • deb74deb74 Member Posts: 754 Pioneering
    Feeling a bit better today. I managed to take the dog for a decent walk this morning and I am hoping that the relapse is coming to an end!
  • April2018momApril2018mom Posts: 2,869 Member
    Feeling hopeful about this lockdown now. I heard someone on the radio this afternoon (wholly unconfirmed reports) say that they are considering easing up on some of the restrictions. Who knows what will occur though? 
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    @deb74 glad to hear you're feeling better ☺ 

    @April2018mom I don't think they will while our death toll is so high. I would love to get out the house some day soon. Its definitely a very trying time for us all... Half the time I don't even know what day it is ☺ 
  • deb74deb74 Member Posts: 754 Pioneering
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Getting cabin fever as been so long since I've been out and be a good while yet but our health is more important and staying safe ☺ 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,955

    Scope community team

    How is everyone? 

    @Deb74 are you managing okay? Sorry to hear about your flare up.
    Senior Community Partner
    Scope

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  • Brumboy68Brumboy68 Member Posts: 77 Courageous
    I've only just joined so I'm a newbie. I'm used to being out and about shopping using public transport. So boring having to stay in. How many box sets can you really watch. Been trying to sort wardrobes out and found a box of videos of auf wiesdesehen pet full series videos who remembers them . What a fab series that was. Apologies to anyone under forty five who won't have a clue what I'm in about. Goggke if you don't . One of the funniest series ever. Shame I don't have the video player anymore.


  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Hi @Brumboy68 welcome. Ah yes I remember that show it was funny. I also had a few uncles that worked abroad on construction sites. Always reminded me of them. Yes  this not allowed out at all and having young adults tell me all day long how boring it is. ☺ 
  • Brumboy68Brumboy68 Member Posts: 77 Courageous
    Safer indoors anyway if I fit the last place I want to end up is in hospital under the current circumstances. You can understand why there are only a few people attending a and e  because they are too scared too go.





  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Yes that's true I'm high risk so definitely the hospital is the last place I want to be. 
    We all just have to ride it out as best we can. 
  • deb74deb74 Member Posts: 754 Pioneering
    Hi Adrian_Scope. I feel a lot better today thanks!
  • myztogenmyztogen Member Posts: 5 Listener
    I found life alot easier when the sun 🌞 was out.  I find when its dark and rainy, my pain increases.  As has been said, its difficult to remember what day it is as every day blends into one.  
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,955

    Scope community team

    I hope the weather's a bit brighter where you are today @myztogen. While working helps me keep some structure to the day itself, I can definitely relate to the feeling of the week as a whole blending into one.
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    How's everyone today? :)
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  • myztogenmyztogen Member Posts: 5 Listener
    Life is ok.  I'm experiencing a fair amount of pain which is a very lonely trip.  I have my twin brother and nieces who look after and help me.  Thank you for asking.  I hope you and everyone else are well 🙏.  X
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Sorry to hear you are in pain @myztogen. It's never nice to be in pain. Is there anything that you find helps? Glad to hear you have that support. :)

    Here is a thread about managing pain during lockdown which you might find helpful.
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  • myztogenmyztogen Member Posts: 5 Listener
    Thank you.  I appreciate your support x
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Got 3 of us not well at the moment just a throat infections but it's rather exhausting. x
  • April2018momApril2018mom Posts: 2,869 Member
    Sorry to read that @Firefly123. You are in my prayers. 
  • deb74deb74 Member Posts: 754 Pioneering
    Hi everyone. Two weeks after it started that damn ME relapse is finally over!!! 
  • myztogenmyztogen Member Posts: 5 Listener
    I had a bad night with pain last night.  I have been up since 4am.  My pain exists around my Above knee amputation.  ( I am an ex Royal Marine).  In addition to my leg I cannot use all my right hand, and have lower back pain.  I take Fentanyl as well as other pain meds,which create their own problems.  Although I have my twin brother and nieces who live with me, its a very lonely trip.
  • neuromum4neuromum4 Member Posts: 67 Courageous
    Hi everyone, seems many of us are having a bit difficult time right now.
    Battling poor health, family and everything else.
    I myself have been have a rough few days ended up in A &E with chest pain and breathlessness.
    I am home now. My neurological symptoms are up and down and I have been in bed for 2 days with pain and numbness.
    My children however have taken over (eldest 2) to allow me to rest bless them. The little ones come and lay with me and we talk.
    Being in bed not able to move and being housebound is normal for me.
    The little children are very worried about covid 19 and I have reassured them.
    I think the children have been great in all this. 👏
  • wheelchairWonderlandwheelchairWonderland Member Posts: 26 Connected
    Hello everyone I hope that you are all ok I am new to this community would be nice to have some friends 
  • lulu1949lulu1949 Member Posts: 62 Courageous
    🙏🏻My thoughts and prayers are with everyone at this dreadful lockdown time x
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    Hi everyone it is more difficult In these uncertain times. We need to look after our. Mental health and wellbeing as well as our. Health. I have been doing some things to try and break up the day. Painting writing talking to family. Keep safe all ☺ 
  • myztogenmyztogen Member Posts: 5 Listener
    Welcome Wheelchair wonderland.
  • wheelchairWonderlandwheelchairWonderland Member Posts: 26 Connected
    Thanks so much 
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