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We want to hear from you: please tell us about your experience of the online community.

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Ami2301

Hi everyone!

As some of you were aware I was admitted to hospital in March due to being very poorly. Almost 21 weeks later I am currently in a specialist neurological rehabilitation centre to potentially learn to walk again. I found out I have a rare condition called Transverse Myelitus which means my spinal cord was inflamed and that is why I lost the ability to sit up, stand and walk. I have been having physio therapy everyday and I am now able to sit up comfortably, my standing is getting stronger too. I am in rehab for a further 2 months to get stronger and to find out what I am capable of.

I was devastated that I couldn't offer support to you all during this time however I had to get better. I have more free time now and I would love to commit to you all again, being a friend.

i look forward to catching up with you all and meeting new people!

All my love and support

Ami

xxxx

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thespiceman

Hello my friend @Ami2301 Great to hear from you . My thoughts are first thank you for letting the community know. Glad you are here. Always a pleasure.

Please thank you for thinking of the community. You are important and please I hope you take it easy. Hope we can be friends when ever your ready to.

Be great to catch up. I am always happy to hear from you.

Take care

@thespiceman

Ami2301

Hey @thespiceman the mystery man!

So good to hear from you! How have you been?

Your butterfly friend

thespiceman

Hello my friend @Ami2301 forgot my other name. Thanks for that. Well made community champion for SCOPE.

So that means supportive of our community with sensitivity and kindness. Help them to assist with their problems and queries.

I have been told doing a great job and am now level 5. Which I am immensely proud of helping the community the way I can.

So my concern is you at the minute I can know this is stressful and anxious not only for you. I feel for you as I can understand that being spent a lot time in hospitals myself. The big issues are trying to cope and that is my big worry for you and your family. Of course but your Mother who I know I recall being very supportive. Hope she is doing OK.

May I add you are not alone. There will members of our community who will be touch and can offer help and advice. Can relate to what you are going through.

Remember small steps and just take your time to do those simple things or tasks. Every day is a new beginning a new day start to recover.

I am always here to listen anytime. All I want is you to get better and recover be strong and keep safe.

Always in prayers.

@thespiceman

Ami2301

Congratulations on your new role @thespiceman!

You truly deserve it!

It has been scary for all of us, my mum thought she was going to lose me but I've fought through it! Exciting news...Ewan and I have set a date for our wedding!

Experiencing all this has taught me so much and I would liketo support those going through terrifying times, offer a hand of support when they need it the most.

If everything arrives on time then next weekend I hopefully will get to spend my first weekend back home!

@Ami2301

thespiceman

Hello my friend @Ami2301 Congratulations to you and Ewan. Wish all the best for a long and happy life together.

Thank you kind comments yes it is a good thing I do try and support every body.

What is important right now is the time you need to recover. yes you want to help others of course you do. I admire you for all of that.

Thinking of others is important but so is you at this precise moment.

Understand you want to share and there will be others in the community. Who will be like yourself. With similar conditions. Willing to support you and hope can give much time to you.

That might be an answer have look on line to see what support there is for you. Relating to your illness.

I suggested this to some one recently in the community. That person found a support group for people like herself. So she can do and get support from a whole host of avenues.

Always here to listen just let you know anytime you wish to. I will always reply. Some times give me a little time today was watching a film.

Like true stories so been watching that. Like true stories concerning peoples ambitions to over come and stories of about people who have fight and struggle to maintain a normal life .. No matter how hard the odds. Disability and illness. Discrimination in this world and fighting to survive.

One type I do watch is true life war stories not into war but these often have little violence more a story.

There is a question who would like to play you if your story could be made in a film. Which actress not familiar with the new ones. That could be a inspirational project to do one day may be, but a book to help and support others. Another suggestion.

In similar circumstances.

I have admired and amazed with your bravery , courage and determination to focus on the well being of yourself.

At the same time thinking of others a quality is all too rare.

So my butterfly friend I remembered please take care always in my prayers you and your family and Ewan.

@thespiceman

thespiceman

Hello @Ami2301 Congratulations to you both. Sending best wishes and prayers for a wonderful amazing life together.

That is good back home. Great to talk to you. Lots of positivity and giving thinking of others that is what I am so proud to have met you.

I know that is excellent to support others though and I do admire you for all that. Just be aware you are important too.

I hope not making a fuss just know been there in hospital spent my time doing all I can for others as you do. Have to sit back and for once worry for me. Just laying and thinking lately have to.

Not because I wished to have to because some of the people have need to help have to take a break. Have serious problems in their lives and I can all but do help and advise.

Had several times to stop and leave for a few days then come back. Remember I am strong but even my mind mentally gets emotional and upset over people. Of our community and do need to leave it. Get involved .

Hope you understand. So please take care need to speak am here anytime my butterfly friend. Talk later

@thespiceman

Ami2301

My good friend @thespiceman

Thank you for your wishes for Ewan and I

It broke my heart when I was in critical care, laying in bed unable to move, I hated not being able to contact you all, that is why I asked Ewan to update you all because I couldn't move. Being in hospital for this amount of time has taught me to put myself first and that's what I have been doing along with building up my strength.

I have physio every weekday here in rehab, along with OT sessions and seeing a psychologist once/twice a week, it's the weekends where I need something to do so I thought it was the right time to come back here

Your butterfly friend

thespiceman

Hello @Ami2301 Thanks for the message and great to hear from you. I wonder how you are you ? I know must apologise sending two posts in succession must be my mind at the minute.

Understand every thing you have said . I am so pleased that treatment and the amazing progress you have made.. I am so glad to hear that everything is going on.

Small steps I know and this is the hardest part. Saying to myself today can only do what I can. What can I manage how can I cope today. Which you will but remember there is no rush.

What is important right now is your recovery your time with Ewan. The time is special and thank you for thinking of me and the community. That is good to know. Yet I am always around. You notice that.

Thank you for greeting the new members by the way, good of you to do that I think that all helps you and helps them. Part of the community.

I myself try to answer many as I can. Some times you are following me or I am following you. That is what we need to be supportive, kind and understanding. Some weekends get up early on here. To answer meets and greets. Queries and be helpful and do what I can. Always a lot to do.

Some days I get stories that tug at me emotionally, I have to try to stop, think and leave too much mentally. So have to come back think and try to help and assist . I get others all about benefits loads on benefits. So I deal with them as I can sympathy, empathy and with sensitivity.

I am always here in fact I never really disappear much. Been watch TV just some series of Programmes called Diners. Drive in's and Dives. Touch of Americana. Gives me ideas and incentives. Cooking techniques.

Have some days the need feel get to the stage can not or do not wish to cook but I then. Have to look at cheats, tips, short cuts.

Weekends are the same for me. Got my music odd bits of housework and jobs. Yet my enjoyment is coming on here. Supporting my friends and being helpful much as I can be.

So if want a friend to listen to I am here as always.

Take care

@thespiceman

bevt2017

Hi @Ami2301

Welcome back sweetie ?

I'm so sorry you have been going through such a horrible time.

I've missed our little chats ?
Talk to you soon
Bev xx

Ami2301

Hi @thespiceman

I'm now using a standing aid called 'Ross Return' where I pull myself to stand up and nurses can manoeuvre me. Another milestone completed! Yay!

When I first met you I knew there was something special about you, you are a real asset to the online community!

Ami

Ami2301

Hi @bevt2017

I've missed you so much!

How have you been?

Its definitely been life changing!

Ami

thespiceman

Hello @Ami2301 Excellent to hear you getting about. This good to know. Keep on moving as they say.

Another milestone and fantastic achievement.

Thank you for kind words.

Hope you have a pleasant day and what ever you are doing make it special.

Forget to say like the new picture you and Ewan .

Take care

@thespiceman

Pippa_Alumni

Great to have you back, @Ami2301! It sounds like you've been through a really difficult time, but I'm so glad to hear that you're doing better now!

Ami2301

Hi @thespiceman

Thank you! Hope you slept well and have a good day too!

I'm not doing anything today so going to try and find a suitable motability car and try to catch up on welcoming new members!

Thank you, I do love the picture of us

Your butterfly friend

Ami2301

Hi @Pippa_Scope

Thank you! It's definitely been challenging! But it's awesome to be back!

Hope you are well!

Ami

thespiceman

Hello @Ami2301 This is great what fun choosing a car. I enjoy my time doing that.

All I can say make sure it is something you can use and is suitable for your disability.

Just a suggestion.

All I know is that I wish you the best and whatever you get a lot of happy times driving.

Your friend

@thespiceman

bevt2017

Hi @Ami2301

Sorry for the late reply, my notifications were turned off.

I've missed you too sweetie ?

I can't believe everything you've been through. The last time we talked you finally had your diagnosis from the nuerologist.

I love the picture by the way, you look so happy.

Hope your mum's ok too.
Bev xx

Ami2301

Hi @thespiceman

My mum will be driving as I can't drive. Just got to wait and see if I am able to transfer into a standard car but if not I will have to have a specialised car which is wheelchair access.

Hope you are having a good day!

Your butterfly friend

Diogenes42

Hi Back,

Pleased to meet you.

I am David

Ami2301

Hi @bevt2017

I know it seems such a long time ago! Turns out I only have the uncoordination of ataxia which my amazing physiotherapist has taught and helped me to control it! I lost the ability to walk because of Trannsverse Myelitus but I'm slowly getting there

Mum is OK thanks

still working hard as ever!

Has much happened since we last spoke?

Ami