I really appreciate you and everyone else taking the time to get back to me. Knowing there are others out there who know what I'm going through is a great help.
As for my daughter, we have reached a brick wall that neither of us can get through! I want her to accept that I cant do the things I used to, I cant have a "social life" outside of the few friends I have. I've never been very good at "making friends" and I certainly cant start now! I do go out with friends, I also do my own grocery shop. I do all my own housework, even gardening and cutting the lawn, it takes me 10 times longer but I am determined to do as much as I can while I am still able! What worries me is what will happen when I am unable to do these things - I know I wont be able to rely on my daughter!
A lot of people have talked of medical back-up, i.e. neurologists, physio, therapists etc. I have none of that available to me. I saw a neurologist last September with no plans to meet again! I dont even visit my doctors as they have never come across this illness before and have no idea what I'm going through.
I've had 15 sessions (all that I'm allowed) with a councellor, but I felt really suicidal at the end of it!
I do have hobbies, I like playing simple games on my laptop, reading and knitting. I dont do facebook or twitter because I'm slightly afraid of them (yes I know that sounds stupid), my confidence levels are not far from zero!!!!!!
I used to walk with my rollator round my local park to get out for fresh air and excercise, but twice I got followed by some strange guy so I've had to stop.
I know this all sounds quite negative and I'm sorry but knowing you guys are out there is a huge help and I thank you. x
Kat said:
Joining in on the " I know what you mean and feel about being isolated". Mine is a little different. I do have my son, his father, and my mother here at the house with me. I'm 46. SCA1 progressing at a good clip now. I'm going to add something I feel might help, but please don't take it the wrong way. You aren't crazy , you're not imagining things. But ya know, you have a degenerative "disease/condition" that is robbing you physically, mentally and emotionally. You might want to consider talking to a therapist or something like that who is trained to deal with serious emotional turmoil. At the very least, you can have someone face to face, to vent to that might can help you cope with the massive changes you are going through. As for making yourself do things socially, I agree with everyone else. Now, being totally honest, I have to literally MAKE myself go to the store even. It's too easy to ask someone else to do it because I'm not feeling like it, don't want to "get ready" , they can do it faster and safer.. Honey, I can think up any excuse in the world to get out of doing something that requires me to leave the house. The bad thing about that is.. I KNOW in my head I better get my hinny out of this house and do things before I get to the point I CAN'T. I'm working on it! Everyone says to never have any regrets.... Really? I can't help it! Had I known this was coming in my life, there are SO many things I'd have done and I do regret like hades for not doing them now. So , in my head, I KNOW I need to do whatever I can now, so I don't have any more regrets than I already do. Please talk to us on here. Vent all you want. I'm pretty new here, but I can tell you , there's probably nothing you are feeling, that we haven't already went through, still going through every day, or you may bring up something we haven't talked about or explored yet! There's a ton of Facebook pages that support Ataxians , and you can feel free to add me on FB if you're on that .. ( anyone on here can btw ! ) .. Just pop me an email on this site and I'll gladly add you. We need to support each other as much as possible. As for your daughter, to her, she may either not believe you need her emotionally as you really do, or she may be doing that whole " tough love" thing. Someone mentioned having her go with you to the drs. Excellent idea !!! Have them explain to her what you are dealing with, and drag her tail over here and WE will gladly tell her !!! I hope you get to feeling better soon sweetie. Just know that you have now entered a world of support and we will be here for you!
Kat I'm on facebook. I am interested in the Ataxia sites.
Kat said:
Joining in on the " I know what you mean and feel about being isolated". Mine is a little different. I do have my son, his father, and my mother here at the house with me. I'm 46. SCA1 progressing at a good clip now. I'm going to add something I feel might help, but please don't take it the wrong way. You aren't crazy , you're not imagining things. But ya know, you have a degenerative "disease/condition" that is robbing you physically, mentally and emotionally. You might want to consider talking to a therapist or something like that who is trained to deal with serious emotional turmoil. At the very least, you can have someone face to face, to vent to that might can help you cope with the massive changes you are going through. As for making yourself do things socially, I agree with everyone else. Now, being totally honest, I have to literally MAKE myself go to the store even. It's too easy to ask someone else to do it because I'm not feeling like it, don't want to "get ready" , they can do it faster and safer.. Honey, I can think up any excuse in the world to get out of doing something that requires me to leave the house. The bad thing about that is.. I KNOW in my head I better get my hinny out of this house and do things before I get to the point I CAN'T. I'm working on it! Everyone says to never have any regrets.... Really? I can't help it! Had I known this was coming in my life, there are SO many things I'd have done and I do regret like hades for not doing them now. So , in my head, I KNOW I need to do whatever I can now, so I don't have any more regrets than I already do. Please talk to us on here. Vent all you want. I'm pretty new here, but I can tell you , there's probably nothing you are feeling, that we haven't already went through, still going through every day, or you may bring up something we haven't talked about or explored yet! There's a ton of Facebook pages that support Ataxians , and you can feel free to add me on FB if you're on that .. ( anyone on here can btw ! ) .. Just pop me an email on this site and I'll gladly add you. We need to support each other as much as possible. As for your daughter, to her, she may either not believe you need her emotionally as you really do, or she may be doing that whole " tough love" thing. Someone mentioned having her go with you to the drs. Excellent idea !!! Have them explain to her what you are dealing with, and drag her tail over here and WE will gladly tell her !!! I hope you get to feeling better soon sweetie. Just know that you have now entered a world of support and we will be here for you!
Hi Gniffer, I do know what you mean about your daughter. I finally figured out my grown daughter was "in denial" about my ataxia, and what I could no longer do etc. I attributed that to her love for me, and not wanting me to have ataxia. It finally came to heads one day when we were shopping. This was not a "good" day for me, as I was extremely tired and somewhat dizzy (happens at times). We were going to go into a large shoe store. We parked the car and I told her to go ahead and I'd follow shortly. She said "why was I bringing my cane, as I didn't need it"? Well, I told her in no uncertain terms that, yes, I did need it, as it helps me keep from falling. She finally "got it" and has been much more empathetic and kind since then. If it comes to a point where you can no longer "cut the lawn", you can move to a condo, townhouse or apartment, where outside work is taken care of. Try not to worry about the future, as it really does no good (I'm amazed that you're able to cut the lawn, as I couldn't)! I give you a lot of credit for doing all you do, even if it takes you longer!!! Cut yourself some slack, as you are an amazing person and have many gifts. I'm not on facebook either as I choose not to be (no offense to those that are). I don't want others to know my business. I'm not technically inclined (long learning curve), but who cares? I can send an e-mail and make a call on my IPhone, that's good enough for me...,ha! Glad you found this site to chat on!!! Hugs to you...Rose
I really appreciate you and everyone else taking the time to get back to me. Knowing there are others out there who know what I'm going through is a great help.
As for my daughter, we have reached a brick wall that neither of us can get through! I want her to accept that I cant do the things I used to, I cant have a "social life" outside of the few friends I have. I've never been very good at "making friends" and I certainly cant start now! I do go out with friends, I also do my own grocery shop. I do all my own housework, even gardening and cutting the lawn, it takes me 10 times longer but I am determined to do as much as I can while I am still able! What worries me is what will happen when I am unable to do these things - I know I wont be able to rely on my daughter!
A lot of people have talked of medical back-up, i.e. neurologists, physio, therapists etc. I have none of that available to me. I saw a neurologist last September with no plans to meet again! I dont even visit my doctors as they have never come across this illness before and have no idea what I'm going through.
I've had 15 sessions (all that I'm allowed) with a councellor, but I felt really suicidal at the end of it!
I do have hobbies, I like playing simple games on my laptop, reading and knitting. I dont do facebook or twitter because I'm slightly afraid of them (yes I know that sounds stupid), my confidence levels are not far from zero!!!!!!
I used to walk with my rollator round my local park to get out for fresh air and excercise, but twice I got followed by some strange guy so I've had to stop.
I know this all sounds quite negative and I'm sorry but knowing you guys are out there is a huge help and I thank you. x
You are welcome to send me inbox message privately and contact me via email like 'penpal' if you prefer this to FB and other social networking sites. Not everyone is into logging every sec of their life on Facebook... lol!