Hi Patsy, I realize the situation the other day was crummy to say the least! Anyone, ataxia or not, would feel the same way! I don't think you need treatment as we all feel the way's you listed at times. Ataxia is frustrating and challenging, as well as physically and mentally exhausting. You are a very kind and sensitive person. These are wonderful characteristics to possess. This site is comforting for us all because it's a safe place to vent the positive and negative. We understand the ins and outs of ataxia, and can be supportive of each other!
No, you haven't lost you sense of humor, so important (Cicina made sure of that...,LOL!!). Just do the best you can and remember, you are loved! ;o)
I wish I had come here sooner Rose... I spent 3 days feeling sorry for myself instead of turning to this forum .. it was when I read about needing help of family and friends that it came to me xx
Hi all,
I'm not paranoid! I just have a heightened sense of awareness. Either that or 'they' really are out to get me!
Kidding aside, I think a serious issue has been raised here. Those that have read some of my other posts may well know that I had a hard time accepting that I had a 'condition' and then adjusting to said condition. It is true too that I have had, as Patsy had, times when I felt guilty, hurt, suspicious of others or quite happily emotional (almost overwhelmingly) when folk have shown sensitivity and kindness.
The biggest problem I have related to my ataxia and other health issues is that, on first or even second look, I can appear somewhat healthy and fit (apart from the few pounds I have gained!). To some even having two walking sticks to help when I do walk a little and using a mobility scooter is not enough evidence to show I need such aids. Ataxia is a somewhat invisible condition that not many know or care about and it is all too easy for those we meet to take us as frauds or not understand that although we may look well we are, in fact, not. All this leads to a strange type of self awareness and self criticism that (I believe) can lead to a type of paranoia and have other negative affects.
All I can advise anyone that has these feelings is that they are, sadly, part and parcel of having any serious condition or illness. I'm not trying to defend the callous, uncaring, ignorant or unbelieving people that can make or lives a living nightmare. Nor am I saying "pull yourself together!". What I would try to get across though is that it is normal to have these feelings like paranoia from time to time. However, do try to be positive, go out and enjoy the sunshine and seek help if you really feel you need it. Remember that help does not have to be medical or professional. Being involved in activities at a local social or community centre could help, going shopping with a Friend or family member if possible may alleviate the problems associated with crowds and having a cup of tea and a chat with a friend may be all we need to ease the negativity.
Stay strong all, try to be positive and don't let the little things get you down. :)
Michael.
Thanks Michael, I can relate to all that except the last sentence but take your point. I do have an 86 year old friend who was recently widowed and she walks about the same pace as me. She has been away since Saturday and I have missed her.
I do hate it when people who have upset me, try to be friends again like nothing has happened. They cant possibly know how hard it is to get over the hurt but I do try.
xx
Isn't it great that having ataxia we have a place to talk things over with one another? I think we are lucky to have this and one another! :0) Patsy your not alone. And yes laughter is contagious so is a smile. :0)
your writing how i usually feel., even around family they're usually the worst
lorraine
For me it is especially around family Lorraine. When my adrenaline kicks in, I find myself 'overriding' my ataxia but... this is when I have had my worst falls so I have to suddenly start being careful and THAT is when I feel like I am 'putting on an act'
Patsy
Thanks everyone .. its good to know you are there.
Do you blurt things out or even 'refuse to reply' ? Then worry about whether or not to apologise.. this agonising decision can prevent me from moving on and I can get deeper into 'social anxiety' .. it is worse when Ken [hubby] is at work of course but sometimes, he finds it best to not answer me when I am like that... he even sings or whistles [I hate whistling] to stop himself from saying the wrong thing.. .
Patsy xx
Patsy my husband likes to whistle , he'll just do the first couple of bars of a tune,
repeatedly and at a certain pitch that drives me to distraction! Carols in the
middle of summer are not my favourite either.
I think less before I speak these days, as you say 'I blurt things out'. Maybe
it's just a case of knowing your own mind a bit better, and speaking instinctively.
At one time I found I was saying sorry a lot, now I stick to my guns! xB
Patsy said:
Thanks everyone .. its good to know you are there.
Do you blurt things out or even 'refuse to reply' ? Then worry about whether or not to apologise.. this agonising decision can prevent me from moving on and I can get deeper into 'social anxiety' .. it is worse when Ken [hubby] is at work of course but sometimes, he finds it best to not answer me when I am like that... he even sings or whistles [I hate whistling] to stop himself from saying the wrong thing.. .
Patsy xx
A big thank you Beryl.. so good to have someone who experiences same thing [yes even the carols any time of year!]
.. I feel a whole lot better for reading that.
Patsy x
Hi Steve, I have been on Zoloft and found them very good. I didn't know then that ataxia could be the cause.I had been feeling depressed and thoughts of suicide for years. I get teary now and then but not like I was. I have managed to live to 65 so I consider myself lucky.The good Lord will take me when he is ready not the other way round.
s wayman said:
Gee Patsy. Me to. I wonder what others are saying about me especially at a store. It gets even worse when someone calls in to the police stating a drunk man just got into a car and you get pulled over 2 blocks away. When you pass all the tests, they still dont believe you.
Worst thing is I am clean, shaven, trim and some might say a good catch. but ataxic. Really hard to explain to others. They just do not get it.
I guess the word is agoraphobic or fear of public. well xxxx them all and keep on going. Im trying zoloft presently.
regards, steve
Getting new 'assessment' for equipment on Thursday and hoping I will be issued with a walker .. I'm thinking this will give more confidence to go out as I feel very vulnerable with my two sticks. If I fall over, not only can I not get up again until someone finds me but I could break bones again and that sets me back even further.
Patsy
Hi Patsy, I hope you get your walker. I use mine all the now around the house. You won't know yourself. Good luck and be safe.
Patsy said:
Getting new 'assessment' for equipment on Thursday and hoping I will be issued with a walker .. I'm thinking this will give more confidence to go out as I feel very vulnerable with my two sticks. If I fall over, not only can I not get up again until someone finds me but I could break bones again and that sets me back even further.
Patsy
Hi Patsy!
Good luck re assessment, put your worst foot forward, I'm sure you know what I
mean! It seems to pay letting them see you at your worst.xB
Patsy said:
Getting new 'assessment' for equipment on Thursday and hoping I will be issued with a walker .. I'm thinking this will give more confidence to go out as I feel very vulnerable with my two sticks. If I fall over, not only can I not get up again until someone finds me but I could break bones again and that sets me back even further.
Patsy
yes, thanks Beryl. I'm a bit anxious about getting it wrong!
Hope all go well
Keep us updated with progress
Alan
Very nice lady has just been here and interesting to hear what is NOT available to me but bit disappointed, to say the least.
I was hoping for a walker with seat but these are not available, only a walking frame with or without wheels.
More disappointing was the fact that I cant get appointment anywhere to get advice on what to buy. She told me to go over to the care home and ask or the shops where they sell them could advise me. great! Even try on ebay or ask my group if anyone has one spare.
Unless Ken stops his self employed work, we cannot get any more benefits [just lower rate attendance allowance]. At 72, he needs his work to keep his mind occupied and spirits up.
Because I have been referred to your London clinic, I cant seem to get any medical care here [locally] s
o have emailed them to ask,
Is there anyway I could get me referred to Colchester Hospital neuro physio?Ho hum
Oh Patsy, how frustrating! It really isn't good enough that you can't get advice on what to buy.
Would a neurophysio be able to say what type would best suit your particular condition? Sorry,
just realised this must be what your last question related to! I totally understand how important
it is that Ken keep himself occupied, a relative of mine is around the same age and still works
for the same reason. xB
p.s. My health centre have been able to refer me to a neurophysio.
Yes I had neuro physio in Ipswich before I moved here but that was because I was already on their referral list from before I got myself referred to Accredited Ataxia Centre in London. My new GP refuses to refer me and tells me I must ask my neurologist in London. I have now emailed her and will report back here when I get a reply.
I did have appointment with neurologist in London for July but... I emailed to ask if I could discuss my exercise routine with someone whilst there. The response was no but.. I could cancel my appointment with neurologist and have appointment with therapy department instead in October. As I am more concerned about managing my condition than learning how it is progressing, I opted for therapy appointment. I have now received 'holding' letter from therapy department saying they haven't got any appointments available at the moment but hope to be able to offer me one in 2 or 3 months time. Oh the joys!!
HANG ON TO YOUR NEUROPHYSIO BERYL .. the best of all therapists.
Patsy
Hi Patsy!
Re rollators with seats
Obviously I don't know what your specific requirements are but I found some reasonable ones
with seats on Complete Care Shop site. xB
Patsy said:
Very nice lady has just been here and interesting to hear what is NOT available to me but bit disappointed, to say the least.I was hoping for a walker with seat but these are not available, only a walking frame with or without wheels.More disappointing was the fact that I cant get appointment anywhere to get advice on what to buy. She told me to go over to the care home and ask or the shops where they sell them could advise me. great! Even try on ebay or ask my group if anyone has one spare.Unless Ken stops his self employed work, we cannot get any more benefits [just lower rate attendance allowance]. At 72, he needs his work to keep his mind occupied and spirits up.Because I have been referred to your London clinic, I cant seem to get any medical care here [locally] so have emailed them to ask,Is there anyway I could get me referred to Colchester Hospital neuro physio?Ho hum