How many Ataxians out there are having to rely o... - Ataxia UK

Ataxia UK

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How many Ataxians out there are having to rely on Parents, Off-spring and Friends due to the absence of a Husband, Wife or Partner?

memielou
memielou

I always say that my Ataxia does not and will never stop me doing what I really want to! and it wouldn't but without a constant companion around I do suffer occasionally from lack of motivation. My parents and children are wonderful and do all they can for me (well, all I will 'let' them do) I try not to let on but I get so frustrated with this and hate to ask them to do things for me as Mom&Dad should be enjoying thier retirement, it should be me looking after them now, not the otherway around. And my children are old enough now to be living thier own lives, I don't want to hold them back. I feel so lonely and worthless sometimes but never let on. I'm just having a bad day... sorry to bring you down

30 Replies
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I have had to get on with things on my own since my husband died in June 2012 and I don't live near any of my family. However, I have had help from good friends and have recently got someone new in my life! It is early days but he is fully aware of what my F. A. can lead to and still wants to be with me. I've told him I don't want a carer, just someone who cares - and he does. Life at the moment is very good!!

That is wonderful to hear. I am so happy for you, life is good, most of the time... I hate myself for feeling like this and don't very often. I'm just like you, I don't want a carer either... Thank you for caring enough to reply... just a 'blip' for me, I'll be back 'fighting' again soon :o)

Twiggywinkles I hope you have lots of happy times ahead with

this new person in your life:-)

Memielou, I do have a husband but Ataxia by it's very nature

can still make you feel very alone. Although I can't imagine

what it would be like if he wasn't there, but sometimes your

nearest and dearest aren't the most help.

As it happens, like you I'm not having a 'good day'. I have to

say mine might be self-inflicted :-( With it being Easter I over

indulged on chocolate, and had a couple of glasses of wine.

This was after spending hours weeding in the garden, albeit

slowly. So, the aftermath was predictable really, something

had to give :-)

Never reproach yourself for letting off steam,better out than in :-) xBeryl

Thanks Beryl, hope you feel better soon, even if it is self-inflicted ;o)

I know I don't let off steam often enough, I just can't, not in front of family or friends they think I'm so strong at coping but I'm not. not all the time. I could cope with being on my own all day, all week even if I knew someone was coming home to me, I'd cook and clean every day, no matter how difficult it is, for someone other than just me... to feel useful, to have a purpose... oh. I must snap out of this! I'm sorry

Mel

Mel, this site is here so you can air your feelings to people who

totally understand how you feel, and feel nothing but support for

you.

Even if you have a husband/partner they don't always want to

hear about Ataxia, I know from experience how little this

condition is understood in my own family. They accept that I

have balance and vision problems but can't grasp all the other

things that go hand in hand with a Neurological disorder.

The number of times I've wished I felt well enough to give the

house a good clean are countless. It makes me feel so guilty

that chores are overlooked.

I can understand this feeling you have of wanting to feel useful,

needled,necessary,purposeful. And, how much it means to

have someone come home at the end of the day, not necessarily

to sit and chat, but just to be there.

I'm glad to be able to say I can now see the wood for the trees.

The fog is starting to lift:-)

Definitely no chocolate/wine or other iffy triggers tonight! :-) xB

Thank-you both - I am really happy now. It has been the worst couple of years with both Bob dying and the ataxia getting worse, but I am through all that and everything is so much better with having someone who cares about me, not just making sure I am coping.We are doing things (like going for walks! managed to do over a mile with plenty of stops and much support at the weekend) which I haven't even tried to do for such a long time. He also owns a sports car which is great fun to go out in with the roof off in the sunshine. Got a few strange looks when we parked in a disabled bay and used my blue badge!! Life is all good!

hi,mem,i know how you feel and its quite normal but we all have to make the best of what we have,and i always think to myself their is always someone worse off than me so chin up as the say,

memielou
memielou in reply to modern1

Thank you...feeling a little better today but still a bit tearfull. You say exactly what I would say to someone in my position... wish I could follow my own philosophy, all the time?

modern1
modern1 in reply to memielou

dont worry sweet heart all will get better,i dont know if this will help but a yr after they told me i had c/a,i got myself a dog she was advertised in the corner shop window she is a jack russell and she bhas made such a difference to my life i really mean that so its me and molly forever

Hi Memielou I have got ask you this. During the last four years I have time periods where I have felt

useless or alone and find my main positive feed back is my dog and gardening. It seems like those feelings are common among people with Ataxia people. Is that correct?

memielou
memielou in reply to allenallen

Thank you for commenting, Yes, it does seem to be a common occurrence amongst Atataxians. I am usually very upbeat and positive. These 'black moods' don't affect me very often at all (I don't allow them to!) However, my resistance has been quite low lately (must be my age?!)

It can be very hard to cope being on your own, during the day

it's just me and the cat:-) My husband is self employed, goes

out early in the morning and comes back around 7pm, eats and

shortly after goes to sleep on the sofa. But, at least his presence

is there.

If I'm feeling energetic, I tend to overdo things, just to make the

most of it. Next day of course I'm usually regretting it. Pacing

yourself is difficult.

I'm not so confident being out on my own now. I do it but only

when concentration is isn't a problem. Often it's not what you do

that can be hazardous, it's other people you have to watch out for.

I can't remember what it was like to be out and about and just

carry on with my day to day activities, without having to give

extensive thought to movement, if that makes sense :-) xB

memielou
memielou in reply to wobblybee

Hello Beryl,

I have two cats and unfortunately they aren't very good conversationalists are they? However they can be good knee warmers, but only when they want to be?!

You are also right about, just having the 'presence' of another person, even if they are asleep and snoring! it can make such a difference.

Us Ataxians must often feel alone, it's easy to imagine that you are the only one going through these things, even consultants and neurologists don't have a clue sometimes but reading about other Ataxians makes you realise that you symptoms are not so unusual and other people cope... I can too!

Just a BLIP!! :)

Thanks Beryl

Mel x

I'm in a similar situation .... Maybe worse as never married no kids no partner. My PAs fill in the gaps. I be in dire straits without them 100%. Trouble is, they are hard to find and have a short shelf life. Very stressful when they leave. Almost worth throwing in the towel!

memielou
memielou in reply to PeteW

Don't give up!... we MUST try to stay positive! there are bound to be a few 'BLIPs' every now and then... we have to get over them, the alternative isn't worth thinking about?! And marriage often isn't all it's cracked up to be! It's very difficult to find the right one. Never give up hope, it's all we have? :)

Thank you for your reply... I fully agree with your mantra 'USE IT OR LOSE IT', you are so brave to cope on your own, I too live alone but my family are close so I am lucky, although I hate asking for their help, it's almost like admiting defeat? This 'black cloud' will pass... thanks for your Cheer up, it's good to know we're not alone.

Hello Memielou!...I know the feeling - lonely and frustrating - moreso if you feel housebound. I am fortunate in one way, I am 88 and my 66 year old Son lives with me, and can do anything in the house that I can't - because I tire so quickly and he also cooks and he has a car!!

There is Ataxia Uk, with branches in various parts of the Country, where 'sufferers' meet up and make friends to chat with and exchange ideas etc...The nearest to me is the Manchester Branch - I haven't joined the group yet because of other family matters, but if you are in the Greater M/cr area, you can contact Sue Lowe by email or telephone...email - Jaysuelaura390@sky.com, - Tel: 0161 683 5538

Best wishes - bill.leach82@gmail.com

memielou
memielou in reply to brighouse

Hello Bill? (hope I've got that right?)

Thank you for your reply. Fourtunately I'm not exactly houseboud YET, but sometimes, it seems such an effort to get out of the house, plus where to go is also problematic? I did try my local Ataxia UK group a few years ago, I am usually very positive about my condition and the other members I met here seemed very negative and just brought me down so I stopped going, maybe I should give it another go, maybe I will?

Take care, kind thoughts,

Mel

PAs are personal assistants or careers. If you get good ones they are worth their weight in gold. Direct payments is the scheme that allows for this. Speak to your care manager to get this (or if you are unable to employ them yourself then it'll be done for you)

If anybody hasn't already looked, see AtaxiaUK site for a list of Support

Groups throughout the country.

You can always keep in touch with others by email or telephone, if for

some reason you're unable to get to a meeting:-)

And, who knows, once you get to know people they could visit you:-)

I've recently started Gateshead Newcastle, we meet monthly, topics

are varied and we always have a laugh, very important:-)

Meeting up with others facing the same difficulties can be a revelation.

:-) xB

Carolss
Carolss in reply to wobblybee

Many have mentioned a support grp. I live in los angeles and have never heard of one. If anyone out there , knows of support grp in C alifornia, please let me know.

wobblybee
wobblybee in reply to Carolss

Hi Carol🙂 Log onto ataxia.org and on the home page, click on SUPPORT GROUPS. This takes you to an interactive map where you click on the State you’re interested in. There are 4 support groups listed for California. It’s possible that they are all at Las Vegas for the next few days, at the National Ataxia Foundation Convention. So, try contacting someone next week. 🙂xB

Dear Memeilou, No need to apologize, as ataxia is very frustrating and challenging. We all have times when we feel lonely and vulnerable. My husband is very helpful, and, like you, WHEN I let him help me...,ha! I think it's wonderful that your parents and children are so supportive! We have to keep our attitude as positive as possible, although at times it's difficult with this! We have each other to lean on, and are not alone in our journey!;o)

memielou
memielou in reply to february

Thank you for your positive thoughts :)

After being diagnosed with FA 2 months ago, the one thing i worry about is being alone. As im only 19 and many girls my age are out there worrying about boyfriends and all sorts whilst I worry about my health and being able to walk, but I still cant imagine someone being with me for me, all I see is the disease.

memielou
memielou in reply to tashabmars

Don't you worry about boyfriends Darling, they're not worth it unless you find a good one from the start ;) I was married with two children by the time I was diagnosed with CA, my 'perfect, supa-caring' husband left me and our children shortly afterwards. Years later I married my carer, he left me after 10yrs too! I'm beginning to think I'm jinxed? Ha! :) I'm sure you have many friends, don't loose them and never give up on your dreams. I dream of New Zealand, I WILL get there, one day and you WILL swim on Bondi... Believe it!

Mel x

tashabmars
tashabmars in reply to memielou

They obviously havent got a brain your 2 exs, have they?! A nice caring women like you :) Ive never been really worried about boyfriends and all that but i think i will get more worried the older I get. I want to get all the things i want to do out the way first like swim at Bondi Beach haha :) You will make it to New Zealand, I have freinds who live there and it looks lovely!! x

I know exactly how you feel,I was Diagnosed over just a year ago,I have no partner or husband, I do however have children and a sister and both parents,like you I feel that I should be looking after my parents.My children have there own lives they help when they can,but they all work and want to spend time with there own families, so I try not to bother them, plus I live a distance away. But I miss my independance meeting people with the same condition as me so we can support each other and relate and talk about problems we experience, so yes I know exactly how you feel.Degarmo

We all have bad days. It must be difficult but, although I have a wonderful husband, I feel guilty that he has had to cope with everything I did whilst also coping with prostate cancer. We cannot blame ourselves though; we didn’t ask to have this awful condition. Keep positive memielou.

I moved 260 miles last year to be near my daughter. My husband died two and half years ago, before I was diagnosed although I went to two separate GP’s and they both dismissed my Ataxia. I live on my own with my two dogs and there are times I get really down, I wouldn’t dare tell my daughter as she just quips ‘pull yourself together’

I have met someone but he lives three hours drive away so don’t see him that often, he is fully aware of my condition as I was honest about it from the onset. We are in contact during the day, but I find it difficult to adjust to being on my own again when he goes.

Since moving here I have met some really nice people, I have been upfront and given them a card which explains everything and they have been good, offering to put my bin out, digging the gravel up so I can use my scooter, but it doesn’t stop me from feeling down and getting tearful. I wish I could walk and talk normally.

Jacqui

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