Last Post - Two Years Ago: It's been two years... - Ataxia UK

Ataxia UK

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Last Post - Two Years Ago

13 Replies

It's been two years since my last post - possibly more.

Suffice to say time does pass quick when your memory is not working 100% and even simple things like brewing a cup of tea is writing it down beforehand so I do not forget to boil the water, ha ha.

But in the two years - or more - I've seen all sorts of different Consultants/Professors etc... but still no miracle cure :-)

Ohh, I have moved from my house to a Bungalow- wet room & and all that jazz, I love it.

I'm contented with my life - such as it is. I don't see any Dr's or Consultants/Professor's now, think they've given up on me ha, ha.

The Occupational Therapist's provided me with everything I need ( smashing ladies) Hospital Bed is a beauty.

I bought myself a Powerchair - not been far on it though. Worried I might forget where I live ha, ha, ha. I do have one of those medical thingy things in my wallet with contact numbers just in case though.

The Ataxia continues to make life difficult. I have cleaners come in every fortnight and my laundry/ironing is all done for me (which I pay to have done).

I still manage to order shopping online, it takes a long time but I get it done :-)

I sleep for the country, always tired, missed some good TV shows through falling asleep ha, ha

Don't have to worry about forgetting to pay bills! Bank sorts all that out for me...

So I'm content, just get on with life & be happy - some days I do feel bloody fed-up though.

:-) :-) :-)

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13 Replies

WoW you are great

tedjohnson profile image
tedjohnson

Hi. Matador rn

Welcome back. I have missed your ,laughs, and it is really good to hear you are in the land of the living

Keep wobbling and writing

Cheers. Ted

in reply totedjohnson

Hello Ted, long time huh? Good to know you are still around & keeping in touch with people friend.

Stay safe & be healthy

february profile image
february

Dear Matelot RN, I'm glad your back on this site, as I've missed your positivity! You are truly an inspiration to all, even though I KNOW how frustrating and challenging our ataxia is! You sound like you're doing well, I'm so glad! Welcome back, my friend!!! My best to you..., ;o)

in reply tofebruary

Well Hellooooo february :-)

I do remember you (I had to sit a while and think a lot, a big lot really ha, ha)

Two years, a lot has past under the bridge in that time........

Really good to know that yourself and Ted are doing okay :-)

I'm was thinking about making a "Bucket List", but I can't think of anything that I want to do that would or could be better than the life I've experienced :-)

Suffice to say, I've accepted what is what is.

Every day is a new challenge.....

wibblywobbly profile image
wibblywobbly

hi matelot, really pleased to see you back on here. Glad you've got your sense of humour still😉 . Sounds like things are pretty well organized for you, no need to worry just enjoy yourself

in reply towibblywobbly

Hello wibblywobbly😀

Long time huh?

Glad you're doing okay😀

Take every day one at a time & still enjoy playing games with the cutlery at meal times ha ha ha.

Take care

ddmagee1 profile image
ddmagee1

Matelot-RN. You sure have a good attitude, that is serving you well, in the face of debilitating Ataxia! I'm relatively new to this forum, and I am enjoying communicating with fellow Ataxians. Because Ataxia is somewhat of a rarity, I suppose, I've only known of a couple people that have had it. My CA is at the point now, where it affects most everything I do. I moved from my beloved home to a condo. I couldn't keep up with housekeeping, the yard etc. The condo. Is much better suited for me. I have help with cleaning, sometimes. My only problem is that I don't have the best of neighbors. This was difficult at first, but now I've adjusted better. I, also, have a power chair, that makes all the difference in the world for me. Having a good sense of humour and trying to stay positive, in the midst of losing mobility, keeps me going! Thank you for sharing, with your uplifting commentary! Wishing you the best!

in reply toddmagee1

Hello damagee,

I live in a Bungalow which is all on on level (no stairs).

Yes the powerchairs give a lot of freedom - but alas with my fading memory I have to be careful how far I go in case I forget the way home😂😂😂

I also have cleaners come into my home once a fortnight, they do a good job.

You take care

ddmagee1 profile image
ddmagee1 in reply to

Matelot-RN You take care, too! I'm going to have to have cleaners come in and help me too, soon. It's getting to be hard for me, what with balance and coordination problems! It doesn't help that I have severe arthritis too!

stjamesangel profile image
stjamesangel

Hi Matelot-RN, it seems your getting on with everything so well. Your very organised. I do my ironing but it takes ages! I iron about 6 things then have to sit down. I may do some more the next day but my ironing board is out for a few days. I find I am tired more than I used to be and miss a few programs (through nodding off). At least you sound happy and you've cheered me up and knowing I'm not the only one who forgets helps.

Angela

in reply tostjamesangel

Hello Angela,

I do put on a brave face most of the time. But what the heck, no good sitting back & crying huh?

Aye, I do get days when I'm so fed up with it all - but not many😜

Sleep? I'm the world's best sleeper😂😂😂 and I can yawn the backside off a bull😂😂😂

Look after yourself

stjamesangel profile image
stjamesangel

Hahaha I wish I had your outlook xxx

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