I'm luckly enoth to still be able to work p/t, my work has always seemed to be understanding,theyve talked to my o/h and have had many letters from doctors explaining my condition, After struggling at work for weeks and a couple of falls the last few days, i went to see my doc who gave me a couple of weeks to re charge my battries, ive just had a phone call from my personnel manager, to see why i,m of because i looked all right to him the other day. dont they get it. so why bother! sorry end of rant
Sounds very frustrating Jason and can understand how you feel. Having a job does give some sort of personal satisfaction but of course you have to way the benefits of that against the feeling of inadequacy.
It never ceases to amaze me how people, even close family, forget the 'situation' - I know everyone has their own agenda but... we have to 'take care' and be single minded about every movement - to be frank though, even we forget at times and suffer the consequences.
I hope you make the right decision for you. Very best wishes, Patsy :)
Even when they do 'get it' they soon forget - they have other things to think about.
Thanks for ranting. :) It helps to see others with the same struggles, and from the sounds of it there are many! I stopped working last November. I kept thinking & telling myself it was just a 'break'. Time to start treatment and give myself a way to get 'back on my feet'. Well, as I'm beginning to learn like Patsy said, we forget. It isn't something that is going to go away. I also had my boss who keeps checking in with me to see how things are going, other coworkers asking when I will be back. I finally had to be honest with myself and with them that this wasn't going away, and things aren't getting better. I know that at home my husband and my kids even forget. They quickly will realize and make up for it, but it is hard especially when many of the symptoms aren't ones other people can see. Hang in there! Your not alone!
Hi jason though i'd chime in too keep that chin up, I agree with other's here on the empathy side of things! Think it's hard when people say "you look fine to me" or the other one" you looked fine last time I saw you so why are you off ill?" I gave up years ago trying to explain yup just because I looked fine you didn't see the constant battle with trips, shakes of tumbles creeping up on me or just because I look perfectly normal you A Dr has signed me off for my personal safety and my health as fatigue doubled with ataxia only worsens my problems untill i'm rested and somewhat recharged Schools used to accuse my mum and Dr of mollycoddling me untill high school they saw the full of crash out effect of what ill health can do. Gawd some days I wish I had a recharge plug to put the oomph back in me lol.
I hope was an oversight from your manager who had a momentary *forgot the situation mode* and maybe when see Dr again explain I think my workplace needs a gentle reminder on ataxia issues as caused issues when I was last signed off. Putting it bluntly there will always be people who can conveniently forget and assume we are being lazy or pretending to be having a bad spell.
Invisable illnesses! Let me tell ya your not alone! I know for me I don't even waste my time getting angrey or staying angey anymore. People just don't think unless things effect them. So II comend you for being able to work Jason!
I've been told that having Ataxia we have to work 10x's harder than others that don't have Ataxia, But look at it this way, your helping other people become more aware and be more censitive good bad or indiferent rigtht? Keep going!!!!!!!! If they get it great, if not there loss! Try not to let it bother you.
Lack of empathy is just ignorance I think! Some people just don't want to know or feel what its like having ataxia especially employers. Some employers are more interested in profit making and nothing else.
I can relate to Michaels comment ..mentally difficult working with those without challenges.
Before I retired, I didnt know I had ataxia - although I was aware that I struggled and, on reflection, I am glad I didnt know.
I am sure my dedication and efforts made up for any inadequacies. I dont know how I stayed awake after 3pm!!! I used to walk [drag myself] to the rail station at 5pm and sleep on the train for the 30 minute journey home. Then I had to climb the steps from platform to road [two flights] and walk another 20 minutes.
Every afternoon when I 'nap', I think of those days.
Even as a child, I needed more sleep than my siblings and was always anxious to get to bed. My sister called me goody two shoes lol
Patsy