OK?

[lindilu]

Does anyone else have days when they don't feel fine-I'm sick of tellling folk I feel ok when I could do with a good cry.I used to be so independant-now i'm not, I can't work,drive or even live like I did.Sorry,I'm really down with myself!

[jurgen]

Hello "lind",

how well do I understand you!!!!!!!!!!!!!!!!!

it´s very British, I think, not to tell people "that you could

do with a good cry".

But, do others really want to know ?

Regards

[scorpio]

Hi, i feel EXACTLY like you do too!!

I supose we have to just get on with it, though not much consolation is it when we are so independant.I live on my own and this STINKS!!

Anyway,keep your chin up,we are still the same inside.take care.xx

[wildone]

Yes, it really gets on my nerves. Especially since it's rare for anyone to ask it and be looking for a genuine answer. If I'm feeling touchy I normally respond with "I'm absolutely fantastic" or something along those lines. But it's exhausting pretending to be okay all of the time.

[Hidden]

lindiu I know exactly how you feel I always say to people "I am fine thanks" no matter how I feel after all if we told the truth about how we feel all the time people would go away thinking " miserable git I won't talk to them again" so we would feel more isolated and depressed so on a bad day I just hold it in and think of tomorrow

[wobblybee]

Hi Lindilu!

It's like being on a rollercoaster isn't it? Emotions can be up or down at the drop

of a hat! Sometimes a good cry is a good thing. If it feels like a natural release,

do it. Putting on a good front can be very exhausting, we all like 'other people'

to think we're fine and coping well. It's good that we have access to this site, and

can let off steam to others' who know exactly how we feel!

[wibbly]

seems that we are in the same boat ! I am so frightened that if the tears start, they will not stop !! I no longer reply with "I'm fine", I just tell the truth, most people (those that actually listen) can't handle that !

[cclive35]

thats spooky as i can relate to that

[silkwood]

I think the mental health around this disease is important.It is like you are in a constant bereavement waving good bye to past skills and independence.I know how you feel.

[jurgen in reply to silkwood]

Right you are.

That´s why I force myself to have as many contacts

as possible

Kind regards

[dleif55]

I feel the same as you,,,

Regards Daphne

[Fifa Volunteer]

Hello Lindilou

I feel the same as you, I just want to cry, I'm so fed up with it all.

Never mind continue to put on a brave face.

Take care

Regards

Fifa

[Hidden]

i usually say im fine when im not if i feel like a cry i try to watch a sad film or read a book and blame them for the tears its hard to adapt when you used to been independent and you have to ask people for help its hard to adapt i find this sight a great help even just reading past blogs

[Bpurce]

I feel like saying I'm v unwell but where would that get me

Live fo the future!!!

[glosman]

Hi, I have had ataxia for over 30 years & have found that pretty regularly now I have days which I find a real struggle & would love to curl up in a ball & lock the world out. I dont think many people truly understand how ataxia can affect your mood & just make you feel rotten!! One thing that I have found does help is taking Vitamin D3 which is available from health shops it is known as the sunshine pill & apparently is a natural antidepressant. It does work for me so maybe give it a try??

[Cally151090]

I feel the same! It's so. Tiring telling people I'm ok when I'm not but easier to say that than go into everything xxx

[wobblybee]

Re telling people how you feel, act, and what's causing it. I went to my Hairdressers

recently, for the first time in 2yrs! You're probably thinking, good grief it must have

been down to her feet, not quite but I could tuck it under my arm. I was feeling pretty

washed out and staggered in leaning on my stick. To cut a long story short, she

enquired, I unloaded, holding nothing back. Previously, I had considered her to be

quite a shallow person, how wrong can you be. She had never heard of Ataxia, big

surprise! It turned out to be the most relaxing experience I've had at the Hairdressers,

and embarrassingly I didn't have enough for a decent tip!

[lindilu]

thanks everyone- I'm glad you're here??

[mikebo]

My wife has just started the ataxia journey(7 years). Definitely ups and downs. Gets especially annoyed/upset when has to go through her symptoms with the latest consultant or technician conducting some horrible test. Really agree with vitamin D comment though I'm noticing she can fall asleep more during the day, but she's amazingly determined to adapt and keep doing as much as she can.

[Lanarkian]

How I share these feelings. I find myself saying that my health has ups and downs, especially my energy. I find many enquirers want to know if I am 'are all better now' so I tell them that my condition is permanent but that I do have good days too. I have an old school friend from Primary school days and I find a chat with her is a great help on my down days. Somehow things get back into perspective. When I have had to cancel things because it is a bad day for me I find that it is now accepted at face value, and I get intouch on a better day and re-arrange meetings etc..

I have found support from a local small charity group which offers support to people with long term conditions and it has been very good for me to have some sharing sessions there. It lets me blow the top off the sense I want to have a good cry.

I hope that others can find a means of support to help in the down phases of coping with long term conditions, adverse effects of medications and the day to day limitations we all have to cope with. I have days with lots of sleep, 'leave me alone' too but they are a bit less frequent now.

My greatest frustration is when my speech is difficult and I say words which are not what I mean to say - it is very much the worst scenario and worse in front of strangers/comparative strangers who do not know that this is part of my neurological condition.

[wobblybee]

I used to feel very fatigued during the day, and just had to sleep, it's not so

frequent now. Saying words you don't mean to say is so embarrassing, also

losing your train of thought when having a conversation!

[jurgen]

Hello "lind",

you forgot to tag your question.

Is it ok by you if our Admins, Harry, tagged it ?

*******************

Tags are like helpful labels that allow you to find useful posts quickly. They appear at the bottom of questions and posts. When you write a post you should add relevant tags to your own posts and questions by typing them in the tag box. By clicking on a tag you will be able to find all the questions and posts that have the same tag, making browsing much easier.

*****************

Regards

[twinkle2508]

hi all, i have just had a blood test, to see wether i need to take vitaman D, but do take spinach, as this is said to increase your mood, so why not try some food with spinach in!!!!!!!!!!!!!!!!!! works for my moods

helen x