Friedreich’s Ataxia News Forums Forums Living With FA How do you cope with everyday life having FA?

  • How do you cope with everyday life having FA?

    Posted by victoria on March 17, 2023 at 12:54 am

    I don’t and I’m a pretty negative person I wish I could be positive and confident and just happy. Sometimes I really wish I could just some how leave, i hate that my husband and our girls have to watch me detirerate, things seem come and go in stags my chocking started to become noticeable 2010( it càme years before obviously but not enough for people question it) it would get annoying and then nothing then start again alttle worse ( ànd so ón) around the time of COVID-19 lock it got so bad we had to turn to getting thickener for a while (a box of 12 $150 every 3 months) then it was fine for awhile so we stopped ordering maybe à month or so ago it’s worse than ever now, my bladder is also going down this urgency is really getting to me. How do you deal with it?

     

    katie replied 1 year ago 4 Members · 6 Replies
  • 6 Replies
  • matt-lafleur

    Member
    March 20, 2023 at 3:10 pm

    I feel this so much, Victoria. Even though our circumstances aren’t exactly the same, we both are diagnosed with FA so your frustration is incredibly familiar to me. I think that connection is what keeps me going. For a long time, it seemed like my FA was only my problem. I wasn’t in contact with many others, diagnosed with the same disorder. That is one of the beautiful things about social media. Suddenly, I am able to connect to others with SA all over the world and it seems that I’m not as alone as I thought. So that is what I encourage you to do. The progression of FA sucks entirely. But I have found that it’s a lot easier to deal with when you are connected to others in the same boat. So I encourage you to be a part of things like the forums over here. There are also plenty of groups across social media, especially on Facebook. And lastly, I would encourage you to become a part of FARA at curefa.org . Feeling in solidarity doesn’t do anything to the symptoms that we have to face, but the solidarity makes us feel a lot better. We are never alone! Please reach out to me on here if you ever need anything!

  • karina-jeronimides

    Member
    March 22, 2023 at 5:20 pm

    When on Facebook, I love reading the FA group messages, but they also depress me.  I love it when I can help someone out, but otherwise, it gets me down to read how others are so miserable and the tons of issues that we must or will have to deal with.  It kills me to think that soon I will lose my independence and be forced to live in an institution where I will be forgotten.

    What helps me is to stay focused on accomplishing the million of specific challenges that make up my day.  Today they were: getting out of bed, transferring to the toilet without falling, washing, cleaning and dressing myself, cleaning the bathroom, the kitchen, taking care of my huge hemorrhoid, making and eating lunch, gulping down water in a refrained and strategic fashion so as not to choke or spit it out, picking up the 20 tiny pills that had dropped on the floor last night (takes forever on a power chair, and it’s both physically challenging and technologically tricky), opening the door for my PT, doing my PT, watching her go, ordering things I destroyed with my tractor-chair, getting meds into my pill packs, preparing my classes, answering work emails… it’s exhausting and yes, it sucks, but if I spend time thinking about how crappy it is to clean poop one week, and be constipated the next, or on wearing diapers, or to not be able to swallow, and many other things then I will get depressed.

    To be happy, I ignore that I am sick and just do things slowly and as best I can. Be proud of your little victories;).  My ex is difficult, and my daughters love me from a distance [one is in college].  I know kids have a hard time with a disability.  [The girls were with me exclusively until 14/12 – the best ages.] My mom and sister are totally absent, unless I reach out.  People are busy and everyone thinks their problems are worse and that you wouldn’t understand them. And you probably won’t.

    So, you’ve got to remember to never take others’ behavior personally.  Just don’t judge, or assume, try not to analyze things too much.  And when you are sad, just take a nap or eat.  Your body is probably stressed out or tired.  Be good to it, love it for doing so many things that are just beyond its ability.  It’s not its fault things are so hard! Above all be nice to your body, love it because nobody else will get how amazing you are for living in a world that is so harsh, so incomprehensive, so utterly absurd.  You rock.  Pity can only bring you down.  Do not ever think that your family sees you with pity. Instead think that your family sees this amazing woman facing a plethora of adversities. You are a warrior, teaching your kids how to survive adversities.  You are teaching your kids that it’s human to cry [allow that to happen], to be angry, and not to give up.    A little like Sisyphus.

  • isabelle-desmarais

    Member
    March 23, 2023 at 10:00 am

    Hi Victoria, I understand your concern and frustration. As a mom with FA (16, 23 years-old), it makes me sad and feel unfair the fact you don’t have your daughters anymore.  Maybe you can not fight in justice but you can get in touch with her. . Overall, my reading of your post, I feel a lot of loneliness and isolation. Do you have access to local group with disabled people,  and access to physical help at home, to make it easier?  I encourage you to do so.  Remember: you’re not alone, at least we (FA community) are here. 🙂

    • karina-jeronimides

      Member
      March 26, 2023 at 5:25 pm

      Hi Isabelle,

       

      Your reply has really depressed me. I see my daughters, we also text and call.  i have an aide twice per week to help me get ready for work. i just had lunch with  handicapped friends.  My students are adorable.  And yes, this disability is tough.  I have many odds against me.  But i rejoice in still being able to live alone and take care of myself and in working.  Help is expensive! i am trying to save to make my kitchen more accessible. I do not want my older daughter to quit college or my younger one to give up private school on my account.  Besides facebook, this was my only link to the FA  “family”.  But after this post, I am never reading or responding to these posts again.  This will be my last attempt at communicating with a none sense family that pities me, and that brings me no comfort or no actual  help. Pity is the ultimate insult.

  • isabelle-desmarais

    Member
    March 23, 2023 at 10:04 am

    Sorry, my mom concerns were about Karina post.

  • isabelle-desmarais

    Member
    March 26, 2023 at 6:15 pm

    Hi Karina,

    I am sorry, I didn’t want to depressed you. English is not my mother tongue language. Perhaps I didn’t choose the right words. I know FA is hard.  I see you are fully activated by your work, friends, daughters, day to day life.

    I also hate to feel the pity of others. That never was my intention or feeling in my post.

    Isabelle

  • katie

    Member
    March 30, 2023 at 11:26 pm

    Bladder meds can be life changing. Try until you find the right one… We are all different and it doesn’t come naturally to all of us to think positive and focus on what we have but it sounds like you have people in your life to be grateful for. If you’re having trouble feeling that, you might benefit from an antidepressant or just therapy. Good luck.

    i rarely respond to these things and don’t find my connection online but we all do need to find it somewhere. i find mine in my family, my boyfriend, my dog and my hope for the future.

    the first medication for friedreich’s was just approved by the FDA. i don’t expect it to be a cure but this feels like real progress i’ve been waiting for for decades.

    ps-i’m pretty sure karina misunderstood isabelle’s message, nothing offensive was said.

Log in to reply.