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Hi, my name is Anya and I'm new here. A bit about me

Kismet_anya
Kismet_anya Member Posts: 12 Connected
edited December 2019 in Start here and say hello!
I'm 27, married with two children. I became disabled after a car accident and Dr's say it flared up already underlying conditions. I have Postural orthostatic tachycardia syndrome, cholinergic urticaria, sulphite intolerance, functional neurological disorder, slipped disc, incontinent and wheelchair bound.

They also suspect mast cell activation syndrome and ehlers danlos syndrome. But it's been a battle to find out what's going wrong with me, when I became paralysed they just told me to go home without equipment.

Its very lonely at the moment, I don't leave the house unless I have an appointment and sleep most of the time so I would love to make friends. The people I called friends don't want to hear about illness all the time and it's not like I have much else to talk about because it's my life at the moment. I have my husband but he had to give up work to care for me and its more like a carer/client relationship at the moment and I just feel like a burden to him.

I love to read, especially fantasy and Sci fi, when my pain allows it I love crochet and have just started to cross stitch, I have a few sewing projects from years ago too, we also like to watch TV shows together like stranger things, big mouth, the oa, the walking dead, game of thrones and true crime documentaries (about murderers). I also love rainbows and love wearing brightly coloured clothes. 
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Comments

  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    edited December 2019
    Hi @Kismet_anya
    A very warm welcome to the scope online community. I'm. Tammy and I'm one of the volunteer community champions here on site to help and support you in the best way possible. I've glad you've joined us as it's nice to meet new people. I hope you find the site helpful and feel free to message me anytime and I'll get back to as soon as possible. 
    Tammy 
  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    I'm just going to read your post so I can get a better picture of what's going on so I can support you to the best of my ability.

  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    @Kismet_anya I believe you find out who your real friends are. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,270 Disability Gamechanger
    Hi @Kismet_anya & welcome to the community 'tho I'm sorry to read about the numerous problems that brought you here. You will find this both a friendly & supportive place, however, so I'm pleased you've joined us all.
    Altho' you don't have a diagnosis of Ehlers-Danlos Syndrome, both PoTS & Mast cell activation disorder (MCAD) can be found with EDS. I have the hypermobile type of EDS & possibly MCAD (says she having rhinitis problems for nearly 2 days now; sick of sneezing!) 'tho I haven't sought a diagnosis for the latter, + neurological problems.
    You may be interested to look at our UK EDS website: https://www.ehlers-danlos.org/. One of the most informative parts of the website is the GPs EDS Toolkit: https://www.rcgp.org.uk/eds which 'might' help rule EDS in, or out.
    I'm delighted to see that you enjoy reading. My son started reading fantasy & sci-fi about 6 years ago, & quite a lot of his books seem to have taken up permanent residence in my spare bedroom, which was supposed to be my library! At least he lets me borrow them. I mainly like crime fiction, but I like other genres too & poetry. I used to knit, but could never get the hang of crochet, which is something my daughter-in-law does very well. You might also like Scope's 'Coffee lounge' section, where books, music, & hobbies are discussed + much more! See: https://community.scope.org.uk/categories/coffee-lounge
    I look forward to seeing you around, & please join in any discussion you wish, or just chat here. I'm usually around, as is Tammy, & some other lovely people here, whom I'm sure you'll soon get to know. Near the top of this page on the right is a link to either 'All group' or 'Recent discussions' which will show you other parts of Scope.




  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,270 Disability Gamechanger
    Hi @Kismet_anya - I hope you're managing to have a look around this site. If you look to the right near the top of the page, you'll see links to 'All groups' & 'Recent discussions,' where you can see other messages from people who've joined.
    How are you doing?
  • emmarenshaw
    emmarenshaw Member Posts: 711 Pioneering
    Hello @Kismet_anya welcome to the community. Let us know if you need anything or have any questions at all. I love reading as well. I love Sci fi and fantasy, adventures and regency. Just anything and everything really. It’s great to meet another book lover.
  • Connie00
    Connie00 Member Posts: 252 Pioneering
    Hello @Kismet_anya


    My Name is Connie00

    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    A very warm welcome to the Community. Thank you for reaching out to us , I am very sorry to hear your Plight. its very hard having your mobility taken away so abruptly. I can sympathise with you, 

    I myself was diagnosed with FND as well as a string of other conditions she I have total empathy for you, 

    please take a look around our community and feel free to join in, our members might learn things from you or you may pick up tips from them,

    @Connie00 B)
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Hi @Kismet_anya and welcome to the community.
    You sound like you've got great taste in TV (and books!) What are you reading at the moment?
    Community Manager
    Scope

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  • Kismet_anya
    Kismet_anya Member Posts: 12 Connected
    Hi @Adrian_Scope I'm trying to stick mainly to stand alone books at the moment rather than letting myself get sucked into long series. I'm currently reading the night circus by Erin Morgenstern and before this i read the stand by Stephen King which was so long it may as well have been a series (I think it is my favourite book) ? 
  • Kismet_anya
    Kismet_anya Member Posts: 12 Connected
    I'm going to try and get back to everyone, it's been a manic few days with a visit to London st Thomas hospital yesterday which meant getting up at 4am for patient transport. I saw a top dermatologist who specialises in urticaria and he said he is unsure between two diagnoses at the moment, one of which is mast cell activation syndrome. It looks like I am one step closer in my fight towards the truth of what is actually going wrong. Half way through he bought a colleague in and she gasped a few times when he asked me to show how hypermobile I am. He encouraged me to continue fighting for the ehlers danlos diagnosis because it could be the root cause of many of my problems including my weight which is now 34kg and becoming serious. All in all a very productive few days. 
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Hi there,
    I am 49 years old and I have spina bifida.  I don’t have children and I alone with my dog. I had lived a active life, drove, worked and never relied on walking aids but three years ago I noticed I started trip and fall a lot, but just thought I was being clumsy but then I started to loose sensation in my legs.  I went to the my consultant and had scans on my spine which showed I had cysts pressing on the nerves in my spinal cord.  Unfortunately because the cyst are in spinal cord and due to my spina bifida that couldn’t operate and I was told the news that within 3 months to 3 years that I will be wheelchair bound. Two years on I am now I’m struggling to even stand for long enough to make a meal, so I think it’s not long until I will be fully wheelchair bound. I’m fiercely independent and nothing worried or scared me, but now the thought of living alone in wheelchair scares me every minute of every day. I have carers coming to me but I hate it.  It’s also the unknown and since coming on this forum I have had mixed messages. A lot of people have given up. I don’t want to give up! I just want to connect with people in a similar position to me who are there to say life still goes on and you can have a social life and active life and people that are able to offer advice and steer me to groups, organisations and help, which is out there for me.
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    I’m glad to hear it’s been productive @Kismet_anya. It’s good that you feel you’re making progress. Keep us
    up-to-date and let us know if there’s anything we can do to support you.  :)
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @Kismet_anya and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  How are you today?  You sound as though you are kept busy with your hobbies.  I enjoy reading also.  What kinds of things do you crochet?  I enjoy knitting although I'm not an expert.   I look forward to seeing you on the Community and reading future posts from you.  I hope you enjoy your time with us.  If there is anything we can help/support you with then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @Rifi7 and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I too have Spina Bifida, but I'm sorry to hear about your health struggles and can understand that things have become difficult for you.  Like you, I was quite independent and drove, worked and did a lot for myself up until 4 years ago and then my health deteriorated after my hip replacement and now I rely on my husband a lot for care.  So I can appreciate how daunting this must feel.  Of course you must never give up and you are quite right to think so.  I agree it must be very difficult for you coping on your own.  Have you thought about contacting Social Work to see if an O.T. can come and assess your needs to give you some help at home?  They maybe able to suggest some aids around the home especially in the kitchen if you are finding it hard to stand to prepare meals.  Some people use perch stools in the kitchen.  I myself use my wheelchair at times, although I walk with crutches too, but use my wheelchair in the kitchen for cooking.  You are quite right to want to stay on your feet for as long as possible as I have that attitude too, but find that I need to use my wheelchair outside now.  You can still have quite an active life both on your feet and using a wheelchair also and can get out and about.  I go to a knitting group and Tai Chi and find them quite rewarding and empowering.  Do you have any hobbies or interests which could lead you into any clubs or groups in your area?  

    Some of our previous discussions have featured Social Prescribing which maybe of benefit to you to help you get out and about and meet people.  When I moved to our present home I didn't know anyone in the area and was put in touch with a Community Link Worker who was able to point me in the right direction of clubs/activities in my area.  I found her through Social Work and it is similar to Social Prescribing, but they get called all different names depending on the area you live in so maybe worth a thought to help you.  I am also include the link to Shine for people with Spina Bifida if you want to take a look:-

    https://www.shinecharity.org.uk/

    It maybe worth giving them a call to see if they can provide any support for you too.  Where I live the Scottish Spina Bifida Asssociation can provide support workers to visit you in your home to gauge your needs and provide you with information.  Also they have days out for people with Spina Bifida to come together and can also accompany you to hospital visits, etc, so it maybe that Shine could offer the same kind of services.

    This Community is also a fabulous way to connect with people and there are some other members on here with Spina Bifida too so please feel free to chat to us anytime.  I have been a member for over a year now and it has really changed my life and I have made so many lovely friends here and I am sure you will too.  It can while away a wee hour or two just chatting on here and everyone is very supportive of each other.  I am sure there will be other members on here who will have other ideas too to help you and if I can think of anything else then I will post.  I am glad that you are getting some support from your carers and I can appreciate that this situation is not ideal for you as you sound very independent, but sometimes these people can be a real asset to you life and can even become your friend.  That is great your wee dog keeps you company also as pets can be very therapeutic and a lovely support as well.

    Please keep in touch and let us know how you are getting on.  I am happy to be of help to you anytime, as others will be too, so please if you need anything at all then just ask.  All the best.  :smiley:


    Winner of the Scope New Volunteer Award 2019.   :)
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,270 Disability Gamechanger
    Hi @Rifi7 -  I feel that Ails has given great insight in to how she's now dealing with SB, & also thoughts & links as to what may help you. I've seen you posting elsewhere in the forum too & do have some appreciation of what you're going through.
    I've mentioned to you that I was a physio, what I haven't said was that when I was about 20 I met this locum Staff Health Dr because of my lower back & sacro-iliac pain. He said he thought I had this rare disorder, when he asked to further examine me, but couldn't remember its name. He also said I'd be in a wheelchair by the time I was 40. Now I thought that's not going to be me, & didn't tell anyone about his prognosis. Now ladies don't divulge there age, but I'm now just a tad older; researched & found it was Ehlers-Danlos Syndrome combined with neurological problems.
    Now it might be amusing to say, if it wasn't, is that the neuropathic pain I have just happens to be in that area of my anatomy upon which a person normally sits, so I can't use a wheelchair. Part of me wishes I could, as this would make some aspects of my life easier, like going out socially. Like Ails, I use elbow crutches; my only option to help my mobility if having to go to Drs appointments, etc.  
    I didn't 'give in' to my disorder, I fought it .....through exercise, relaxation & other modalities.  I still do. Like yourself I've looked at other options like CBD. Just trying to say, that only you will know if, & when, you might use a wheelchair, which may actually help you to maintain your independence. It's not 'giving in,' but exploring what may possibly help. It's difficult learning to adapt if you've had a problem all your life, or only for a while. It's always wise to keep your options open, & keep learning.
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Hi Anya,
    It was really nice to get our reply. Sometimes it can feel your all alone. I rarely see anyone in my area in a wheelchair. I would just like to sit and have a coffee and chat with another person whose living this life. Living alone you can feel sometimes alone with your thoughts and everything just gets amplified in the night time. I live in a borough which council is struggling with social services. I had a social worker and OT come out February and I am still awaiting for the adaptions to be done. I’ve been unable to get out of flat independently as I am now struggling to balance so getting around is becoming more and more difficult. I have told the OT on numerous occasions that I’m struggling and not sure how long I can continue in my flat without having a serious accident. It’s making feel pretty low and the OT and Social Services the mental anguish this can cause. The OT is coming tomorrow so I will address it with her again, but the longer the flat doesn’t get adapted the more I think I might be better off in a assisted living flat, but apparently I’m to young to go in one of the them. I feel I between a rock and hard place! Sometimes I feel that my life has been turned upside down and not sure how to fix it. 
    You mentioned about Community Link Worker but we don’t have them in this borough. I don’t even have a Social Worker.  The only organisation I know that offers support is Enfield Disability Action, but they are inundated and couldn’t even give me a date for an appointment. As I have said it would be nice to sit and chat or go for a coffee with someone who is my shoes.
    I am grateful to yourself and people on this site and I find it of some comfort to be able to express my worries.
    THANK YOU!
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    How can you chat one to one on this site? Does all the conversations need to posted online?
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,270 Disability Gamechanger
    Hi @Rifi7 - You need to have I 'think' had 25 posts before you can send someone a private message. Those that have more than this can, however, contact you.
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,270 Disability Gamechanger
    @Rifi7 - I believe it's 'Ails' post that you are thinking about, as she also has SB. Perhaps it might be an idea to ask the Scope team to see if they can help you too. I'll ask my friend @thespiceman to also come & chat as he has a great understanding about the mental health problems that many here face, as well as other knowledge that may be helpful.

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