1. Community
  2. Health promotion
  3. Other Conditions and General Health

I Have Ehler's Danlos Syndrome, And I Need Advice.

Posted , 3 users are following.

samuel19820
samuel19820

So, to start off I have EDS, and I have two options. One could ruin any chance for me to walk by the end on next year and the other leaves my mother without care for six to nine weeks. My mother has MS. She can no longer care for herself. But now I am faced with a problem I knew was coming, only I didn't know it would get here this fast.

It is hard for me to understand, but my doctor said, the short version of the story is this: I have one year to get a surgery done on my ankles, or they start collapsing. Not that they aren't now, but they would do so in such a way that walking would become impossible. And, too much damage means they become unrepairable. But this isn't even a one and done surgery. I am projected to need it every five years.

My mother cannot take care of herself. I have tried my hardest to make sure she doesn't have too. She's got it really bad, and I only learned two months ago that I will be needing surgery, and I found out, last week, that I have a projected deadline. She's not willing to get a nurse to visit and, if I go through with the surgeries, no one will be able to care for her.

I am 18 and I might lose my ability to walk before I am 21. I don't know what to do or say at this point. my next doctor's appointment is next month. I asked for a month to think about it. I don't want to let my mom down, but I don't want to be wheelchair bound. I'm scared and I feel so alone. I feel like I am picking mom's happiness or mine and it doesn't seem fair. please don't give me a lecture on how life isn't always fair. EDS is only one of many issues I have. My life never seems fair.

0 likes, 5 replies

5 Replies

  • rose92947
    rose92947 samuel19820

    Posted

    Wheelchair bound you become a liability and both you and your mum needing help, it's a case of lesser evil, something has gotta give, your mum must accept outside help whilst you get yourself sorted, in time you'll see its the only sensible action

    Life is never fair and at just 18 my heart goes out to you, stay strong because what appears impossible today given time you'll look back and be glad you took the journey, there's always a light at the end of a very dark long tunnel, I have been there

    • samuel19820
      samuel19820 rose92947

      Posted

      Thank you. I guess I really don't have a choice, Thank you for helping, you guys are really nice.

  • Beverley_01
    Beverley_01 samuel19820

    Posted

    Hi Samuel,

    I am guessing your mum does not know about the surgery option and that you are still in a bit of shock from what options have been given to you.

    My mum did not want carers coming in to help her either but, she ended up needing them after a fall and actually didn't mind them coming in after her initial reservations.

    As Rose says, if you end up in a wheelchair you will not be able to help your mum at that point. Are you in the UK? were you in the young carers organization? Maybe they could still offer you support to work out what to do.

    I am guessing that there isn't extended family living near by that could help? If there is, could they maybe help out, it would only be for a few weeks.

    Above all., Don't feel guilty for caring about your own health. To care for mum, you need to look after yourself too.

    Beverley

    • samuel19820
      samuel19820 Beverley_01

      Posted

      I live in the US. I just looked for places to as what to do. Your right, Mom doesn't know, hopefully, if I tell her she'll let me hire someone. What Rose said makes a lot of sense, and so do you. Thank you for all you help.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.