Thread: Hello everyone
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Old 27-08-17, 01:18 AM   #12
LECS
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Join Date: Jul 2012
Location: Shrewsbury
Posts: 210
Default Re: Hello everyone

Quote:
Originally Posted by Ange<3 View Post
Thanks lily.I'm just really unsure how to think or feel at the moment I'm just sort of numb. Did it take you a while to get your head around it? How old are you now if you don't mind me asking? My dad was not in my life much as I was younger. He was quite a drinker so I know he suffered a lot with the huntingtons but I'm unsure if he would of had an easier time if he hadn't of drunk so much and he's the only person ive actually known with the condition x
Quote:
Originally Posted by Ange<3 View Post
Thanks lily.I'm just really unsure how to think or feel at the moment I'm just sort of numb. Did it take you a while to get your head around it? How old are you now if you don't mind me asking? My dad was not in my life much as I was younger. He was quite a drinker so I know he suffered a lot with the huntingtons but I'm unsure if he would of had an easier time if he hadn't of drunk so much and he's the only person ive actually known with the condition x
Hi Ange, of course you feel numb. No it didn't for me because I always knew I was different, I wasn't surprised when I found out I was positive, I just always knew. You mention you have memory difficulties and mood swings and it's a bit of a joke at work if I had my time again I would seek support from my workplace. I covered everything up and I moved from job to job, I temped for years, a couple of days, maybe a week then a different workplace. I blamed myself for having the condition and felt at fault because I wasn't as able as I pretended to be, which was an enormous feat to pull off on a daily basis. I'd always write copious notes of everything and repeat back everything that was asked to make doubly sure because of my poor memory and processing skills. It was something I did, long before I knew why. I did it because I needed to, in order to manage every job. You will need support and understanding from everyone. Perhaps those people you plan to tell could be educated by telling them about the condition and how it affects you. One thing I have always done right from the word go is live in the moment the very second, I only concern myself with what I need to think about now and not think about anything that might affect me next day, next week, next year. I still do it now. Whilst I worked I kept everything a secret and when I did seek help I found people who should have understood didn't and some didn't get it so the more it happened the more I found myself withdrawing. I listened to a professional speaking on the TV the other day about people who suffer with OCD and how it's very treatable once the person realises that something bad will not happen if they don't perform the ritual. It got me thinking about my own compulsions, I believe that anyone that does not believe like I do is wrong and so if I tried to stop my rituals I would be failing myself, it's not connected to something bad happening to someone else so it's not like the OCD he was referring to. The difficulty I've found is when you have a condition others try to tell you how you are feeling and why and often they are nowhere close to how it actually is. I have struggled with people laughing at me over the years and I struggle now with what I say being joked about but if I think really hard and consider where they are looking at it from, I can just about see that it might cause humour but because I don't like getting it wrong I'm overly sensitive. I don't drink Ange because I have zero tolerance of alcohol I used to be able to manage a little but even a few slips causes me to feel very drunk and uncoordinated so I no longer touch it. I think if I was talking to my 26 year old self I would say not to pretend, find something that I could do which caused me the least stress and not push myself unrealistically, to involve myself in things that gave me enjoyment and to seek distraction from thinking about the condition, to insist on support and be kind to self. Because I'm in the know so to speak I also believe that anyone who has HD or might have or cares for someone who does or who is a child of should be treated with the atmost of care and anything that they need should not need to be validated or verified and people should be going out of their way to help at every juncture but as my Gary tells me they don't because they couldn't possibly know what those with HD do because if they did then they would. I feel 29 was my noticeable year, although everything before 29 is questionable my family cite 29 as my beginning and I'm now 50, I have no idea about 51 not even 50 and half, I am where I am and I still have a massive job to do. Find the good in the moment and crack on. I'm sending you a huge hug and thinking of you. Lily
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