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Understanding me… September 19, 2008

Posted by loz121 in Uncategorized.
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Understanding me is not easy! I have many people ask me various questions about my life when I meet new people and why I can’t do certain stuff. Maybe I don’t explain it well enough, I don’t know but when I talk to new people I go through the same stuff over and over again such as why I need to sleep a lot and why I don’t go out as much or have a job and basically why I am how I am! I can sometimes send them this blog but not many people have time to read it all my posts or basically skim through it and I can understand that if they are busy people but if they don’t read the blog, I wonder why do they want to ask me Qs about it if they have this blog with everything on it! I have a combination of 5 things all at once and it gets incredibly annoying to be like this & coping with it.
I can get upset about it all because I feel other people and my friends are doing what they want with their lives and I can understand that because they are healthy, why should’nt they? then i think what i am doing with MY life because I can’t even summon myself to go in the garden because of a dustbin?? or worry about going out in case I need to use the loo (because i need a disabled toliet with bars that help me get up off the toliet) Every couple of weeks or months, me and my family go through the same thing with me where I get upset about it all and I’m feeling I’m not achieving anything in my life because of those 5 combinations of things. I have a lot of new people call me lazy when I tell them that I need a lot of sleep and etc, I try and laugh it off but sometimes it can hurt my feelings the way some new people say it. I do hate being at home ALL the time which is why I volunteer but it doesn’t help when some new people saying “you need to get out more” because it’s really not as easy as that!!!

The 5 combinations I’m coping with at the moment:

1. Multiple mitochondrial DNA deletions: (a condition I was born with meaning my energy genes don’t work) the reason I went profoundly deaf, need a lot of sleep & get tired a lot, have droopy eyes and fussy eating habits, weight problems, get tired walking long distances as I’ve no energy

2. Cochlear Implants: have had two CI’s separately because I went profoundly deaf at the age of 8 because of Multiple mitochondrial DNA deletions. I now have just one after losing one to a bad ear infection.

3. Raynaud’s syndrome: I get cold more easily than usual so I like to be nice & warm!

4. OCD (obsessive compulsive disorder) and anxiety attacks: I have suffered from both since I was in hopsital in 2003 when I had a routine op and it went downhill after ending up staying in hospital for a month/and worry a lot. I hate it when this happens but i have good and bad days as does anyone.

5. PEG (Percutaneous endoscopic gastrostomy): I was given this in 2007 when I had trouble putting on weight due to Multiple mitochondrial DNA deletionsand get fed 3 nights a week at present. It also ended in me spending 5 weeks on life support due to contracting Pneumonia & Septicaemia. Due to the PEG I have gone from 5 stone to a healthier, curvy 8 stone. (size 8 to size 12-14) and feel more self confident with my body now.

Now all of these are what I am coping with at this one time and you can’t expect me not to be a bit stressed out or depressed or even a bit CRAZY from time to time!!! This is all why I don’t have a job or have trouble with some things. I don’t expect people to change their ways for me. I expect them to understand where I’m coming from and respect WHY I’m like how I am!
I have my ways that I always have been like staying in with the family and don’t like to get drunk which is nothing to do with the combinations. I am just simply like that and like to sit in my chair talk to friends online, or watch a TV/DVD with a cuppa. Take it or leave it, that’s me
!
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Comments»

1. Julie Layne - September 20, 2008

I have a couple of chronic health conditions, too, that are just too much trouble to explain sometimes.

It gets old and yet it’s frustrating when people don’t understand. Sorry it’s that time for you.

Funny, I just looked at your profile info and see that you’re about 20 miles (30 km, more or less?) from where my husband was on business this week! He stayed in Preston. Here I am in Texas, yet, what a small world it is with the Internet.

Hope your weekend looks up!

2. Julie Layne - September 20, 2008

I have a couple of chronic health conditions, too, that are just too much trouble to explain sometimes. It gets old and yet it’s frustrating when people don’t understand. Sorry it’s that time for you.Funny, I just looked at your profile info and see that you’re about 20 miles (30 km, more or less?) from where my husband was on business this week! He stayed in Preston. Here I am in Texas, yet, what a small world it is with the Internet. Hope your weekend looks up!

3. Dave - September 20, 2008

I hear you and feel your frustrations. I have so many people that read one post and ask me “how did you go deaf”?, “How long has your wife had cancer”, “Why did you end up in a coma”?
All previous posts in the past 150 days.
I like your “voice” and relate to your blog. Thank you for sharing.

David

4. Dave - September 20, 2008

I hear you and feel your frustrations. I have so many people that read one post and ask me “how did you go deaf”?, “How long has your wife had cancer”, “Why did you end up in a coma”?All previous posts in the past 150 days.I like your “voice” and relate to your blog. Thank you for sharing.David

5. Vivie - September 22, 2008

I can relate to it somewhat..everybody’s asking about how I did got deaf and everything and when I point them to another source they get bored..

Just ignore them and try to live your life as you see fit!

6. Vivie - September 22, 2008

I can relate to it somewhat..everybody’s asking about how I did got deaf and everything and when I point them to another source they get bored..Just ignore them and try to live your life as you see fit!


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