I have been negative about my condition for about three days now.I feel very restless and although I have plenty to do I feel I am stuck in limbo land.
I used to do a lot of gardening but just managed last year and adapted with my wallker.
Now its so cold even though the sun is out.I squash everything and all things outside or even in the greenhouse requires mobility.Even sitting in the sun reading Gardening Magazines is no go as I end up full of ideas I can no longer do.
Somedays I get fed up with being positive and adjusting and want to rant and howl.
I know I should change my reading material and find something more edifying.Has anyone got any suggestions about changing all their old hobbies and trying something new.
I did enjoy going out on my scooter but this year seem to get frozen in the cold wind and take ages thawing out.It takes me ages to get ready with scarfs,gloves and coats.
This CA thing makes me feel useless and I freeze up even more in the cold.
I try to be positive and look forward but sometimes like now I am restless and fed up with adjustments.
I am not whingeing just ranting.
It is making the adjustment between adapted activities and not being able to doing my old hobbies.
Yep cold weather is pants.. for every reason that you say AND.. makes you even more tired than usual.
This sounds a bit drastic but we moved to a retirement apartment and as much as I loved gardening - it is now a relief to the the gardener and cleaning windows to maintenance man. We do have veranda where I can grow things in tubs and pots and amuse the grandchildren.
I can sit on my recliner doing knitting or crochet and watch the wildlife and birds.
I have my netbook on the arm with all my special friends here online.
This may paint a cosy picture .. obviously it isnt perfect and I do get stir crazy at times but.. I can honestly say I dont miss the garden.
Hi Marie, So sorry you're feeling low and unable to do something you used to love doing...,gardening! The cold affects me also, as well as the heat (humidity). You sound as though you're very talented and could maybe channel that into something different artistically. I make greeting cards with bits and pieces of all kinds of stuff. Seeing how you love flowers, you could make some for cards. You could use material, buttons, felt and different types of paper, the options are endless! You can sit while doing these type of projects. I'm sure you'll get out on your scooter again when the weather warms up. It's alright to "rant", as I understand! I think it's easy to get "restless" with ataxia! Just a thought...,;o)
Hi Marie - I try to keep a positive outlook, but, hey, we’re all human. Extreme temps. suck the little energy that I have out of me.
It’s been too long of a winter; and even though it’s technically Spring, it’s been way too cold out.
Maybe you can put gardening on the back-burner for now, and put your energy toward something else that uses your creativity in helping you to grow or develop something inside where it’s warmer.
Hello Marie, I am in the same boat. I used to spend hours in the garden.Now I'm lucky to spend even half an hour The only way I can do it is on my Knee's or sitting on the ground.To get up I use my walker. If I over do anything I can hardly get around the next day.In the winter (or rainy weather) I am house bound as I can't use my scooter in the rain.I know it's hard to stay positive all the time.I often rant,asking God would he please stop all this as I don't know how much longer I can put up with it.I put on a brave face when my son comes around as I don't want him to worry any more then he does now. I wish you all the best and remember you are not alone.
I understand how you are feeling. I can't even gather my thought enough to follow through with doing much of anything.
I've always been a reader, so getting an e-reader (iPad) has been a God send for me! I don't have to even go to the store or wait for the book to arrive in the mail.
I also started doing ancestry research. That's been a lot of fun. I used ancestry.com, but I'm sure there are other resources available to do the same thing online.
Can you imagine what having this ataxia would be like if we didn't have computers and internet to give each other support and do research? How did people connect with others who could understand? I have to imagine it was even more lonely.
Thanks for your suggestions.I have plenty to do as I have lots of unfinished bits of handicraft to do and a lovely conservatory to sit in the sun.Its just that I would feel guilty .
The sun is shining outside and in the past I would wrap up warm and go for a walk or go in the greenhouse and do things.
I am having to make the adjustment from doing things and sitting in the sun enjoying myself and not feeling guilty.
I expect lots of you have been through this.It is a bit like watching daytime tv.There is a time and place for everything.
I know my attitude must change .I do like reading but again I would feel restless.
My husband and others without Ataxia do not understand.They think there is an easy solution.
It is pleasing to know that this cold wind we are having makes those of us with Ataxia feel worse.
I have a choice.Yesterday we went for a short ride in the car.That means my husband spends less time on the wet room.
Which do I need most/The mental uplift briefly or a wet room I can use every morning.Funds are very limited and so there is no money to pay someone to do it.
It's a Catch 22 situation.
I like the idea I soon will be able to go out on my scooter and enjoy going out.I have been out this year as I exercise the dog.Last spring I remember going all over the place.This year I feel thwarted by the weather and advancing Ataxia.
It is making that adjustment I am finding so difficult.
Hello! I’m really new on this site, but I wanted to offer another option. I’m a new sca patient, but a longtime gardener and a Cooperative Extension ag agent. Have you thought about getting an indoor grow light stand? You also mentioned you have a greenhouse. I’m jealous ! If you can start seeds and/or propagate plants, you can distribute them to lots of needy organizations like community gardens and town beautification projects. If you call your local extension agent, they can hook you up with the local master gardener group. They could possibly even supply you with seeds and materials in exchange for you starting the transplants. Good luck and don’t give up on gardening!
Thanks for your suggestions.My father was a propagator so its in the blood.
In the past ie last year I germinated the seeds on a heated windowsill propagator then when they were big enough I pricked them out and put them in the greenhouse.I only squashed a few then.This year with the intention tremor and increasing poor mobility I am finding it so difficult that part of me wants to give up.In the past I always used seeds etc as therapy.
It is making that adjustment between activity and sedentary things I am finding hard.
Louise,
Welcome to the. Group! i know you’ll find kind supportive people here.
Just a gentle reminder; this is an international group, so “Local Extension” would only apply to US residence. I use the Colorado Ext website. Quite helpful!
Again, welcome!
Julie
Louise said:
Hello! I'm really new on this site, but I wanted to offer another option. I'm a new sca patient, but a longtime gardener and a Cooperative Extension ag agent. Have you thought about getting an indoor grow light stand? You also mentioned you have a greenhouse. I'm jealous ! If you can start seeds and/or propagate plants, you can distribute them to lots of needy organizations like community gardens and town beautification projects. If you call your local extension agent, they can hook you up with the local master gardener group. They could possibly even supply you with seeds and materials in exchange for you starting the transplants. Good luck and don't give up on gardening!
WHEN MY DR TOLD ME THAT I HAD ATAXIT, HE TOLD ME DONT WORRY YOU WILL LIVE A LONG AND NOEMAL LIFE.
I AM 60 AND I HAVE TO HAVE HELP COME IN 4 HR A DAY, 7 DAYS A WEEK, I CANT EVEN GIVE MY SELF A SHOWER. CLEAN MY HOUSE, WASH, I HAVE NOT BEEN IN A STORE IN 4 YEARS.
No it is not a normal life. (what is a normal life any way?) Why don't you get a scooter? It would get you out and about at least.How do you manage getting around the house? Ithink I was born with Ataxia and now I have C.I.D.P. but I can shower myself but some days I have to sit on a stool.I have Home help once aweek. I am 65 and I won';t let these diseases get the better of me. Some times I do have bad days when I get sick of it and rant and ask God to please put a end to this,.I have had enough. So chin up, these is always someone worse off than you. cheers.
I think that “normal” is how you define it; and your life and priorities will be much different than someone else’s. If you’re able, some socialization might help give you some balance.
1110lee said:
WHEN MY DR TOLD ME THAT I HAD ATAXIT, HE TOLD ME DONT WORRY YOU WILL LIVE A LONG AND NOEMAL LIFE.
I AM 60 AND I HAVE TO HAVE HELP COME IN 4 HR A DAY, 7 DAYS A WEEK, I CANT EVEN GIVE MY SELF A SHOWER. CLEAN MY HOUSE, WASH, I HAVE NOT BEEN IN A STORE IN 4 YEARS.
It is not normal. We all have to go through a bit of grieving our past abilities and lives. It’s good and normal to want our “normal” lives back.
I understand your anger and frustration. I am so grateful for this website and the friends I’ve made here. I was thinking just yesterday how much harder it must have been for those stuck at home before there was the Internet and this support group.
I’m glad you are here.
1110lee said:
WHEN MY DR TOLD ME THAT I HAD ATAXIT, HE TOLD ME DONT WORRY YOU WILL LIVE A LONG AND NOEMAL LIFE.
I AM 60 AND I HAVE TO HAVE HELP COME IN 4 HR A DAY, 7 DAYS A WEEK, I CANT EVEN GIVE MY SELF A SHOWER. CLEAN MY HOUSE, WASH, I HAVE NOT BEEN IN A STORE IN 4 YEARS.