A Nowhere man

[HardToLetGo]

A NOWHERE Man
This disease of dementia is the worst of diseases, with so many twists and turns, so unpredictable, and just when you think you have seen it all or felt it all, along comes another wave of what
dementia dishes out. And by this I mean??
Just lately I have not felt that well, I have been quiet, withdrawn and sullen, and as everyone who knows me this is totally opposite to who I am. I have spoken before about feeling lost but this is
different, I have been feeling as if I am not really here, does that sound really weird?? No?? Well I can tell you is does to me. I can see and hear all that’s going on around me, but it all sounds like a distant echo and I can’t seem to catch what’s being said properly, so frustrating. My spatial awareness is also much worse and this means I am shuffling or look as if I have had a drink when I
haven’t.
Is this my blood pressure? Or is it because I am too tired? I have always advocated that some use their illness as an easy excuse and as a GO TOO every time something’s wrong but I have never done
that. Some mornings I feel as if someone has put net curtains in front of my eyes and it’s so hard to see clearly. Now this is quite worrying because it’s the way I felt in the early stages of my dementia, also my words don’t come out as they should and I sound like I am stuttering which is also something that happened in the early days. All these things just to serve my fears that things are
getting worse, but yet, some days I can speak, see, walk properly and be my normal self, so as you see there is no rhyme of reason to this disease for any of us with dementia. There is a very old saying in the “Dementia World” that states “When you have met one person with dementia, you have met ONE PERSON with dementia” and that’s why it’s so important that people understand it’s not all the same, it doesn’t play to the rules. If you get a cold or the flu we all know the symptoms’, but within dementia the symptoms are so very diverse I would be here all day explaining them all to you.
The Beatles once sang “He`s a real nowhere man, sitting in his nowhere land, making all his nowhere plans for nobody” and as sad as that sounds, that`s what it feels like sometimes living with
this awful disease.
The loneliness can be crippling and yet we have so many around us who love and care for us, that’s when the guilt monster comes to visit and you feel so guilty feeling like this and know you shouldn’t, and yet, try as you might to shake those feelings, you just can`t . These kind of feelings can last for days or just a few hours, nobody ever knows, but as I wake each day knowing I have this terminal disease, it’s never that far away from my thoughts, I still hope it’s just a blip and normal service will be resumed as soon as possible as they say. But we have to carry on don’t we??
Surely the easiest thing would be to give up and let nature take its course, wouldn’t it??
But that’s not for me; I am a fighter and always will be, I will fight till the end, whenever that may come.

Hi Norms
Fight on, my Mum battling just now too and we have alot of joy but I know it is hard for her as you have described and I also hear her account which chimes with yours. Thanks for sharing, keep on keeping on and keep posting ?

 

[Husky610]

Good morning Norms,

I am as yet undiagnosed but initially experienced trouble with walking and balance was frightened of going down the stairs struggled with my shower as I had just moved to a new home, I became increasingly more depressed and was having pins and needles and a black cloud feeling coming over me. In the end I felt so desperate I tried taking my own life. I was then admitted onto a mental health ward for my safety and have since built myself up from there. While in Hospital they gave me a diagnosis of somatization the manifestation of psychological distress by the presentation of physical symptoms.

Following that ive encountered short term memory loss but because my Mri scan and Ct scan had no abnormalities I'm adjudged just to be suffering from depression. However I really struggle now with spatial awareness as you do, parking my car is no long an easy thing to do nor is clutch control also i do struggle with my sight blurriness on occasion , I recently got new glasses earlier in the year so that should be fine and dandy.

Also my sense of touch can be not there I'd say its between 95-and 100 per cent but its noticeable to me that its not right, I get twitches also in different parts of my body in recent days around my lips.

Anyway like you I was a very sociable person now I'm subdued also and as I keep saying to my partner just feel I have changed to a different person. Unfortunately I know getting a diagnosis can be extremely hard so i'm stuck in limbo land and I do have 100 per cent days where im ok .

Reading your post was like a light bulb moment for me and something I will be forwarding on to my partner.

Many thanks

Peter

 

[Izzy]

Welcome to the forum @Husky610.

 

[Husky610]

Welcome to the forum @Husky610.

Thanks Izzy

 

[EmilyS]

Thank you so much to the above people living with dementia for sharing your experiences.

Your contributions are so valuable and helpful to us carers.
And, I’m really sorry you are having to endure such difficulties.

Norrms, if you ever feel you could elaborate on/describe the feeling of loneliness, I would be very interested.

Mum says she is lonely frequently but I suspect it’s more to do with a feeling of disconnect..?

 

[Norrms]

Thank you all

 

[Norrms]

Thank you xxxxxx