Overwhelmed with worry

peterbee

Hello
I'm peterbee,  I have cerebellar ataxia which affects my balance and ability to walk.  I have had this condition for some years but in the last 2/3 months it has progressed quickly and every day I am a little more unable to walk.  At present I am managing very uncertainly with a stick.  I know this will progress and am unsure of the future. I am 65 and my wife is 73.  Apart from anything else I am  upset about the burden this puts on my wife.

I am writing this partly because setting it down somehow is helpful, rather than keeping it in my head and also because I think I need some practical advice on how as a new person to all this I make contact on the agencies which are out there to help people.  At which point should I contact social services?  How disabled do you have to be before they want to know?  Is this too soon? Or do I have to be totally housebound before they will assist?


At this moment I don't really know what else to write.  I just would like some help in coming to terms with this thing and would appreciate any advice from someone who is more experienced.Thanks

CockneyRebel

Hi peterbee and welcome

Have you discussed your concerns with your GP ?
they should be able to refer you to the right people

You can ring the Scope helpline for better info and assistance

CR

steve51

Hi @peterbee

Welcome to our online family/website.

I had a Stroke in my “Cerebellum”

This like you has greatly effected both my Balance & Ability to Walk.

I can offer you my services in anyway if that would help????

peterbee

Hi Steve51
Thanks for responding.  As I have said this is so new to me I feel overwhelmed with fear and worry, and let me say, anger over my situation.  The doctor has prescribed antidepressants (but they won't start working for a couple of weeks).

How long have you had your condition? Do you go out? How far can you walk?  Do you always need (or want) a companion when you go out?  Have you had your house modified to help you get around?  At what stage is it worth contacting social services?

Importantly - have you accepted the situation? does the depression and fear lift eventually and does one become reconciled to this?

I'm sorry if I seem a bit panicky but that is my situation at the moment.  Again, thanks for responding

Pippa_Alumni

Welcome to the community, @peterbee! Great to see that you've been chatting with Steve, just let us know if there's anything specific we can help you out with.

steve51

Hi @peterbee

That’s no probs, I’m here to help & support you in anyway!!!!

Don’t feel overwhelmed with “worry & fear” We are all here for you.

It’s great to talk to you today please please get anything off your “chest”

This will make you feel better “believe me”

Through anything at me that’s what I‘m here for !!!!!

1. I had my Stroke in 1998.
2. I have just had major stomach surgery so I’m currently bed bound.
3. I can’t walk at all due to my Chronic Pain.
4. I only stay local so I tend to be ok on my own.
5. Yes I have got a stairlift to go up & down my stairs.
There is also a selection off grab rails in my bathroom.
6. Yes you can contact Social Svs “asap”
Do you own your own property??????
7. Yes accepting things is a massive step forward to be honest .
8. You need to focus on the “here & now” as it is the only thing that we can “influence”
9. Yes once you have accepted the new you everything will be much easier.

Please don’t feel panicky!!!!

I’m here to help & support you in anyway ??????

peterbee

Did you get me reply?  It seems to disappear from the screen whenever I get the end!  Anyway, briefly thanks for responding and taking the time to read my post carefully,  I'll mulll over what you say and get back.  Youre problems seem much **** than mine.

steve51

Hi @peterbee

Many thanks !!!!

I’m currently only getting your messages through here.

I can sort it so we use our walls to communicate if that would be better?????

My problems are long standing so you do get used to them in time!!!!!

Pease please digest what I have sent you!!!!!

I hope that it helps????

Please please let me know if I can help you further????

I’m here most of the time so I will get back to you “ASAP”

peterbee

Steve51
Thanks once more for the reply.  What do you mean about using "walls to communicate".  I am certainly pondering on what you have said.  You have had your problems for a long time; mine have just arrived.  I need to try to get some of your acceptance and wisdom!

Matilda

@peterbee

I suggest you ask the benefits experts in Ask a benefits advisor category on here.  You might have to wait a few days for a response.

Also you could phone Age UK helpline.

Do you get Attendance Allowance for yourself or does your wife get Carers Allowance for you?

Chaoskay

@peterbee
I'm not sure where you're based, but in Lancashire we have The Magdalene Project which is a free counselling service (they ask for a small donation, but it's not obligatory).  I wonder if they have anything like that in your area?  Look out for posters in health centres or local libraries for organisations that provide services like this perhaps?
Although it doesn't immediately help your physical difficulties, it may help you to accept and deal with the changes in your life.  
I'm so sorry things have become  difficult for you.  Wishing you strength to deal with things and try not to feel guilty about the burden you feel you're putting on others.  None of this is your fault and you're trying your best to cope. 

peterbee

Thanks for  this.  I'm in South London.  I've been told about a agency called IATPS which I will check out.  Anybody know anything about it - they have a presence all over the country

Chaoskay

I've not heard of that organisation, but someone else on here might know of them.  I had counselling to help me accept my auto-immune issues, it was really good as it helped me realise I was going through a kind of bereavement process.  I found it easier to accept that I would never be medication free etc -  but life in its new form would carry on.  I just had to let go of the past a little and not be bitter, which is how I felt.  
Anyway, it helped me so much, I do hope you find support too and best of luck. 

peterbee

Hi Chaoskay  (just worked out where the name comes from, I think)

Just to let you know that I've had no success in contacting IAPTS but have made contact with a CBT counsellor whom I hope to be seeing in the New Year
Thanks for your help

Peterbee

Chaoskay

Where do you know the name from out of curiosity?  I'm glad you've got in touch with someone as regards CBT at least.  It's a good start

peterbee

Well, isn't "chaos + kay" ?  Tell me if I'm wrong, and where it does come from.

peterbee

I should have said "isn't it"

Chaoskay

Ah, of course it is.
It's been a nickname for many a year.  Chaos by name, chaos by nature. 

peterbee

Well, good for you.  Out of chaos came the universe, they say