Isolation

General
1

I just want to share a little of what I'm going through.

I am 58, widowed and live on my own. I have a son who lives and works in China and a daughter who lives about a mile from me but " has a life of her own"! I dont have any other family close to me.

My CA started just after my husband died in 2000 but I wasn't diagnosed until 2011. I have had 6 sessions with a physio and 2 sessions with a speech therapist. Since then I've been left alone!

My daughter tells me I'm the strongest person she knows and that I need to get out more and have a social life - she has her own life to live and can't be responsible for my social life. She tells me I make her feel guilty and that I have to stop being dependant on her. Needless to say this hascaused me a lot of heartache and I have become a lot more insular, I have no-one to call on for help, probably because I feel I would be a "burden" to people.

I'm not as disbled as some of you I read about - I manage to do most things myself (which is just as well considering), but there are times when it would be nice to share now and again!

To cap it all I've just had my ESA stopped because the DWP tells me "I have enough money to live on"!

So not only do I live in forced isolation - I now have to cut back and think twice about everything I do!

I'm not looking for sympathy or advice - I know there is nothing anyone can do to alleviate what I'm going through, I just wanted to vent a bit! Thank you for reading this. x

2

I live in a similar situation. I'm 43.. I never had chance to have kids so live on my own. .well without any other humans... my dogs are my babies!!

I think they are the reason I'm still going to be honest! They really are the best therapy, better than anything I've ever had on the NHS!!

Have you thought about having a pet for company? doesn't have to be a large dog or a young puppy or even a dog if you're not fond of going walks.. many cat rescue's out there too?

There's a load of older dogs too in rescue and if you foster, often the rescue centre will cover the vet's bills for a pet with a medical condition who is 8yrs old or over... so you'd get the company without having to worry about vets bills and Insurance?

Kati

3

Hi,

Sorry that you feel isolated,i think everyone can feel like that sometimes.

I'm also 58 as well as being Ataxic I'm also deaf which is like a double whammy.

Good idea of Kati's about getting a pet for company.

Take care

Joan

4

Sorry to hear your plight Gniffer it's a shame people 'don't get it' isn't it.

My wife and pets pull me thru, I'd be lost without them.

The NHS has been great to me, but it's a post code lottery, it really is.

I've had more therapy (voice, balance, diet, occupational health) than old nick, the support in the Retford area is brilliant.

My consultant is Hadjivassiliou (sp) a leading light in ataxia at Sheffield, good man, the ataxia nurse there is a mind of information.

I still work but get DLA and a blue badge and free road tax.

Non of the above would be possible without my wifes help and support, so I get a feeling I know where you're at.

I too recommend a doggy or two, someone to talk to when you're on a downer.

I would try to take your daughter to your apts relating to ataxia so she can be made aware of how you need everyday help, the difficulties you face, and the support you need.

Last of all, we are all here to try our best to advise, help and generally support one another.

Cheer up duck

DBW

My wife and I thrive on the support of our two dogs, African Grey, and cat.

5

That is very understandable that you feel so isolated. As coordinator of a local support group, I hear this quite often.

You have made the first important step of joining this forum which is the best I know but you could also subscribe to Ataxia UK and find a local support group or even start your own.

We [my husband and myself] have very limited income but have moved into a rented apartment for over 55's.

Here we have the opportunity to maintain privacy and independence as well as socialising with other residents.

You might consider such a move.

I wish you all the best and hope you will post on here again. Patsy

CA/70/Colchester

6

Hi Gniffer (and all),

There is not much I can add that has not already been covered.

I think that the idea of having a pet is a good one if you think it is suitable and the idea of asking your daughter to attend, with you, an ataxia appointment may well 'open her eyes' somewhat.

This forum (LWA) has been great for me as it gives a chance to talk with others with the same or similar health issues, gives a chance to communicate with the outside world when I cannot get out and offers (sometimes much needed) support or advice.

And! Yes, we all need to vent sometimes - do not worry about that!

Kind regards,

M.

7

Gniffer - as usual by the time I read a posting the earlier responders have already provided great advice. That is one of the great things about joining this group. All I can add is to invite your daughter and son to join. You may feel isolated but you are not alone.

8

Hi,
I suffer from CA, diagnosed in 2011. It has progressed so moving with a walker indoors and wheel chair outside. I do feel isolated at times as my friends and relatives are not interested to visit me as before. Being a strong person I try to come out of the situation quickly fearing depression will catch me! As suggested a pet will elevate your moods. We ataxians have to force strength into us to battle the ailment for we are choice less in the matter. Good luck stay strong.

9

As I was told forcabily recently

58 is young!

Use this site at lwa

You’re bound to find someone worse off!

Remember your an ataxian

And we are all in the same boat

But we’re a friendly bunch who do care!

Look after yourself

Regards

Barney

10

I know the Isolation feeling. But you said your not as disabled as some of us. Just hearing that. You need to force your self to do things. Nice things. There is so much to do. After my divorce I wasn't this bad. I didn't mind going to place by myself. Well I guess I did. But did it anyways. Because I knew I was getting more disabled. 58 is young! And who knows you might get worse and then it will be to late. Just my opinion!

11

I understand issolation too well. I too have to force myself to get involved with other's but it sure does help me out. I don't know if you have checked out on line meetings or phone meetings but her is a few thoughts so you can talk with other's: http://christianfoodaddicts.weebly.com/other-phone-meetings.html

Here is another link to making friends outreaching in 3 ways. http://www.foodaddictsanonymous.org/meetings

I attend FA which is a bit diffrent but it is about food basicley and how it can represent other things in your life that are not food.

It helps me stay away from refined sugars which aren't good for my health anyway so I can relate somewhat. I take what I want and leave the rest. :0)

If these aren't for you there are other programs out there that you can get involved in. Think about what do you like to do and google it. There are face to face meetings that you may not know about. Phone meetings, clubs etc. Scrapbook? Humor? T.V. programs? Etc.The list can be endless! Enjoy

Hope one of these help or at least can give you and idea of something to try out! :0)

12

This site is wonderful for friendship and support! The people on here have different types of ataxia and are dealing with different stages and degrees of symptoms. We understand what it's like, so we are here for each other, which is comforting, as well as helpful! Maybe you'll feel "less alone" if you chat on this site (and the UK site). The advice people have given is great! I don't remember if anyone mentioned this, but is there a hobby you enjoy (making cards, knitting, crocheting, needlework, quilt making, reading books, etc..)? If so, maybe you could start a monthly group of people that have the same interest. You could meet in your home and maybe rotate homes. Or maybe you could find an established group to join. Do you belong to a church, as there are many groups that meet there for various reasons. If not, you may consider that...,best to you...;o)

13

Great idea you gave me Rose.

Brainstorming here! What about starting a group here or a chat weekly here about something! :0)



rose said:

This site is wonderful for friendship and support! The people on here have different types of ataxia and are dealing with different stages and degrees of symptoms. We understand what it's like, so we are here for each other, which is comforting, as well as helpful! Maybe you'll feel "less alone" if you chat on this site (and the UK site). The advice people have given is great! I don't remember if anyone mentioned this, but is there a hobby you enjoy (making cards, knitting, crocheting, needlework, quilt making, reading books, etc..)? If so, maybe you could start a monthly group of people that have the same interest. You could meet in your home and maybe rotate homes. Or maybe you could find an established group to join. Do you belong to a church, as there are many groups that meet there for various reasons. If not, you may consider that...,best to you...;o)

14

I go out on my scooter whatever the weather.I quuite like being on my own now as talking to others is such an effort.

Social occasions are ok but I like pottering along the hedgerows to see the seasons changing.My old hobbies require a llot of effort and are not suitable for CA.They were walking and gardening and socialising.

15

Jeannie I think that is a great idea!

Jeannie Ball said:

Great idea you gave me Rose.

Brainstorming here! What about starting a group here or a chat weekly here about something! :0)



rose said:

This site is wonderful for friendship and support! The people on here have different types of ataxia and are dealing with different stages and degrees of symptoms. We understand what it's like, so we are here for each other, which is comforting, as well as helpful! Maybe you'll feel "less alone" if you chat on this site (and the UK site). The advice people have given is great! I don't remember if anyone mentioned this, but is there a hobby you enjoy (making cards, knitting, crocheting, needlework, quilt making, reading books, etc..)? If so, maybe you could start a monthly group of people that have the same interest. You could meet in your home and maybe rotate homes. Or maybe you could find an established group to join. Do you belong to a church, as there are many groups that meet there for various reasons. If not, you may consider that...,best to you...;o)

16

Gniffer,

This is a common problem for SO many of us here, including me. I have to force myself to commit to do things. Even going to the grocery store.

One place I've found some community is church. Many churches have activities outside of the Sunday morning services. This site is a huge help for me as well.

Thank you for your transparency. Please know, you are not alone. Keep talking to us!

17

Hi Gniffer, I'm 58 also (soon to be 59 in February), and my 1st husband died in 1996. I remarried 6 years ago. I also have a son (31) whose married with 2 children (my grandchildren), Luke, 2 1/2 and Elle, 5 months. My daughter (28) is single. We have these things in common, as well as ataxia...,oh joy...,ha! I was diagnosed 10 years ago, although I think it started before that, as I recall some incidences when things were not "right". Anyway, I'd love to chat with you anytime, if you'd like! Take care..., Rose ;o)

18

I have ATAXIA MSA and feel isolated from friends and family. But I Depend on my family I'm not able to drive Trying to move to warm climate.This is very hard. And I'm 53 divorced

19

I understand your isolation. I think it is a common thread that runs through all of us. Everyone has given good suggestions. I know it is important to have verbal communication too. If you have a cell phone, try calling up relatives or old friends. Everyone loves to hear from friends from the past. I've had to force myself to socialize in unfamiliar ways. At first it was uncomfortable, but now I look forward to doing what's new. I say just take one small step, and make it an easy one. You will feel so liberated when you do. About your daughter, I have a daughter too. Kids are so busy today. Recently a friend told me in a loving way that I talk too much about my illness, and it can drive people away. Maybe try different conversations with your daughter. It might help. Ahbee

20

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