A Blog About My Progress And Life After Having Septicaemia In January 2014
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No Children
I won’t be able to have a child of my own. I can get pregnant but with my medical history and lower immune system it wouldn’t be a good idea. I have made peace with this.
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There are two main ways that people interact with wheelchair users:
1. They jump back from a few feet away like disability is contagious and mumbling sorry as they do so
2. They don’t respect your personal space. Chatting to you in a patronising tone and making a fuss
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My last post looking like this..
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TW : Dental Work
Yesterday I had the metal plate fixed to the roof of my mouth
In March they will be cutting the roof of my mouth and then the middle of this metal contraption will be turned twice a day to further stretch my jaw alignment
It’s very difficult to eat. I had sushi last night and it kept getting stuck under my plate. My tongue just dislodges it. It’s just different to get used to
The doctor said this would happen.
I basically have a lot less room in my mouth to chew
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DENTAL JOURNEY UPDATE
I am going to be having my jaw surgery on the 30th March
This is a big one.
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Evolving Speech
I have become reliant on catchphrases to communicate. I got into this habit because with my catchphrases I am much more likely to be understood. I am trying to break this habit and expand my vocabulary.
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When a carer comes in and says “do you need anything or are you okay” that’s code for “I don’t want to be here so I hope you don’t want me to help you because I don’t want to help you”
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Eating Habits
I have always had a weird relationship with food and eating. I used to suffer terribly with anorexia and when I am depressed or upset that is always the first sign. I used to be able to not eat for days at a time and still live my life. Since my most recent head injury I can’t do that. If I miss a meal within about 10 minutes my energy levels and my mood plummet. As my appetite goes when upset I get more upset then I eat less, it’s a vicious circle. This happens a lot when I am busy during the day for example when I come home from hairdressers. If I haven’t eaten since breakfast and it’s lunchtime before I eat again my mood and energy levels plummet. Luckily my parents know the signs and leave me alone until I eat something. The effects are almost instant and I am a totally different person.
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Every year I have an inspirational person on my tree, this year it’s the immensely brilliant Terry Pratchett
❤️🎄❤️
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DENTAL JOURNEY UPDATE
I now have metal caps on my molars
Next stage in stretching my teeth before jaw surgery not until February 10
So my diet won’t be changing before then 😁
My anaesthetic assessment for my gall stone is tomorrow so hopefully everything sorted before February
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Letting Go
I am getting better at letting go of things that annoy me.
For example, today someone said something that annoyed me and after a few minutes of going over it in my head and talking about it with my father I moved on and thought about something else and the stress and anxiety disappeared.
Until a few weeks ago that would have been on my mind for hours or even days. I would go over and over it. Not healthy but I was stuck in the pattern.
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DENTAL JOURNEY UPDATE
PREP NOT PRE OP
My teeth alignment needs to be stretched a bit before the operation so today I got rubber bands on my teeth. On the 25th they are going to remove them and add metal discs to my teeth
They need to make a mental plate that will realign my teeth further before my jaw surgery. They were talking about the 5th December to fix the plate but it’s uncomfortable and my jaw surgery could be in January so they don’t want to put it on too early.
They will know more on the 25th but this all needed to happen before they do the pre op.
I said about my gall stone. He said for him it doesn’t change the prep but the jaw surgery might be delayed because they want me to be as healthy as possible.
My diet won’t be affected until at least December, probably after Christmas.
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DENTAL UPDATE I had some news about my teeth
I had a letter with two appointments in, the 15th and 25th November. To me two appointments 10 days apart means surgery.
Of course I will tell them about my gall stone but if they are happy to give ahead I am hoping they will just do it
I have been waiting so long!
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I have a local shop about 100 yards from where I live. I go in there often. Every. Single. Time I go in there I have at least one person ask me if I need help or if I am okay. A few times just when I am moving along the pavement. The tone is like a small child got lost. I swear some of them have never seen an electric wheelchair before. It’s incredibly frustrating.
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DISABILITY DISCRIMINATION
I am very upset. I feel very left out.
I wasn’t invited to a sleepover at an indoor activity centre where I have stayed many times before because the organisers assumed I couldn’t manage.
They didn’t ask. I found out about the sleepover by accident. I went today thinking that it was just a day thing.
I returned to this organisation after I had sepsis and things are very different for me after sepsis.
I have really struggled with feeling a valued and contributing member. I am very different physically now from before sepsis.
When I was asked to help today I thought yes finally I am part of the team!
I was mistaken.
💔♿️💔
#disabilityinclusion #DisabilityTwitter
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