Ok people here I go.......... On this day I am asking for your support. I usually have positive thoughts about how I am feeling, not today. I am deorating for Christmas and my eyes have been full of built up tears even as I chat. In other words I am getting close to a melt down. It is as if reality has just kicked me in the face. I realized in my mind while decorating that It looks as if I will not be of much help next year. I have this pit in my soul that has just hit me hard for the very first time. It's as if all my control of vision, walking and movement of my eyes has worsen way to quickly for me. I have this overwhemed feeling and don't have a clue what will make it go away.
Please understand people I in no way want sympathy. I want solutions as I am angry at this moment for not having a solution. After I let my body get relief from a good cry I will again get my thoughts back to a normal way I'm sure. For now please just let me vent.
I'm sure this will not be the only time this is going to hit me hard. I do know that this is my very first melt down. I feel that I am not alone with these feelings chatting with my support group. I have one room cleaned and decorated and realized I was finished and totally exausted. I kept telling myself that I need to keep going. Guess what? For today at this moment the Christmas decorations are lying all over and I could care less. This in no way is what I would ever do.
I have my home done and organized before the day is over. It is so unbelieveable what this Ataxia is doing ro me and my life style.
I now have come to the conclusion that my life is heading for a major change and accepting this change is a must no matter how upset I get at times.
Well after about two hours away from my computer I gave in to a reaaly hard spell with crying and crying somemore and you what "FEEL SO MUCH BETTER".
My friend stopped over and we had a very nice visit. I can breath better and I feel the weight has lifted. She made my day by stopping in. It is amazing what visits with friends or family will do for your mood.
Please understand people that I totally know some of you have it so much worse. But that still does not stop those who are just diagnosed to have a bad day here and there.
My bad day is over now, time to pick up the spirit and chalk this day off as a moment delt with and it's over and done with.
By the way folks, I had a wonderful Thanksgiving and hope you also had the same. Now...................let's get ready for Christmas and celebrate all that is coming.
Enjoy your holiday coming and thanks so much for letting me vent. I am over it now and have myself back on track.
You all take care and be blessed
I wont sympathise Vickie but I really do empathise xx
I have been using the keyboard for more than 50 years and since retirement it has been my means of communication - what would we do without our online friends.
My husband is very understanding but I dont like to vent to him like I do online.
Personally, I find crying very exhausting but I know for some people it does help - many hugs and festive greetings to all.
Patsy..........I see that you are an early riser yourself. I have very hard times tring to sleep through the nights also. Appreciated your understanding me having to vent Patsy.
How long have you had your Ataxia? I was happy to hear your husband is supportive through this. We are really blessed to be so fortunate for such wonderful men in our lives.
Have a great day Patsy and take care
I found slowing all movements down helped and I do pilates floor exercises. Here's a very simple trick.. lie on floor (or mat/rug or your bed) facing up, so you know your entire body has support and don't have to worry about balancing or falling.
Very slowly start with fingers.. wiggle them, if you have a tremor try flexing them instead so can see a definite difference you have controlled, try same with eyes closed, feel the feedback, rather than watching your hands.. try lifting a hand off floor just a little way off floor, hold it there a few secs put it back.. do same with eyes closed, do each hand and each foot. first looking then not. .. if you can lift an arm or leg in air higher than like fully outstretched try that, or ask someone to help you, do with eyes closed and FEEL the difference. .. try doing it at least once a day just for about 10-15mins.
The purpose of the exercise for those who like to know the science behind things.. is Ataxia affects your sense of Proprioception - that is your bodies sense of where it is in space... the Nystagmus in your eyes could be making this worse which is what is throwing your balance off.. the idea is to re-train your brain to compensate using sensory tricks... give it a go and let me know how you get on.. try it for a month???
Feel free to message me about this or any other issues
Kati - 'Ataxia affects your sense of Proprioception - that is your bodies sense of where it is in space.' That is maybe why I keep walking (or stumbling as is) into walls! :)
Vickie! Rant away! Sometimes it is for the best that we 'unload' our frustration.
I know where you are coming from in not wanting sympathy. Sometimes, sympathy given is more like inconsiderate, fallacious and uncaring throw away commentry. I could give example though I think it unneeded here.
As for crying, I tend to 'deal' with my issues differently. It is not unknown for me to become very quite and moody when my problems get me down. This usually only lasts a short while as I try to regain positivity though. Needless to say, most folk see when that is happening and try to either keep my spirits up or know to keep well away!
I see you say 'I have very hard times tring to sleep through the nights also'. Me too! I changed my matress to an air pocketed one with a thick memory foam topping and this has helped some. :)
Change is often the hardest thing for any person! I know that I have had to make changes as I go regards my 'differing' abilities. I know it can be difficult to change but I think you are right in saying that change has to be accepted - wether we see it as good or bad.
I'm happy to hear you had a good 'Thanks giving' and wish you a happy christmas to come.
Thanks for your response Vickie.
I have probably had CA from birth but cant be sure - only reflection do I realise that - I have always been unbalanced!!
I was diagnosed in my late 50's - getting slower made my lack of balance more obvious.
I followed Kati's advice about 'retraining' and getting wii fit [now wii fit plus] and I feel reasonably confident.
Yes I do rise early - I pace myself and rest in the afternoons most of the time.
Hope to hear more from you.
Take care, Patsy x
I get those days too but I have been trying hypnotherapy to change the thinking. I think I had a lot of isms before I was diagnosed.I am trying to come to terms with change as all my hobbies involved mobility.So I have to change something to reduce the frustration.I am trying to find new things i enjoy but it is very hardwhen you have used my hobbies to get over the problems.I have had many a good cry but it is more frustration rather than depression.Sometimes we do have days like that and our emotions are so up and down.I don't like people assuming my cognitive abilities are impaired and so far they haven't been but my speech leadspeople to sometimes think that.It is hard work sometimes to speak and move but I try..Glad you had a good thanksgiving and are feeling more optimistic.