An Introduction
Oh all of a sudden I'm really rather nervous. I'm Sall. I've been a carer for as long as I can remember in one way or another including as a child. I've been deaf since birth and today I suddenly felt the need to write a blog about how I find life as a Deaf Carer. I've previously discussed both issues on my craft blog when I've been frustrated and used craft to aid me through but now I feel the need to really write about it, be totally honest about everything from emotions to facts. I'm going to start with an introduction about me and my interests, a little about my Caree who will take various name forms from Nan to Caree depending on if I'm writing rationally or emotionally and of course my deafness.
A small disclaimer first, I'm using the term deaf because I found people didn't understand hard of hearing, hearing impaired and so I went for deaf, I shall continue to use that but appreciate it is offensive to a profoundly deaf person because I haven't been raised in the sign language community. I have no intention of offending, it's just a term that people recognise. The repercussions of not fitting into the deaf community nor the hearing community is something I will explore in future posts along with anything else that comes up.
About Me
Name Sall {Sallie}
DOB 1981
Location Devon
Interests: Reading, Crafting, History
How long have I been deaf: Since Birth
How long have I been a carer: I was a young child in primary school, around 5 or 6 years of age when I first remember doing things that are considered caring.
Cause of being deaf
I'm very lucky in that I know what causes my deafness. I have a genetic defect that is known as Preauricular Sinus.
What is Preauricular Sinus
Preauricular sinus is a pit usually on the helix of the ear. They can be single or bilateral. The incidence of this condition is very low making it a rare genetic defect and it took almost thirty years for a full diagnosis for me. The highest incidence of Preauricular Sinus is around 4-10% in Asia and Africa. Outside of those with Asian, African or African American decent the occurrence is extremely low with only 0.0 - 0.6% of Caucasian's having the condition and the majority of those having a singular Preauricular sinus pit, with less than 0.1% having a bilateral case as I do it makes me very much in the minority.
Is it just Preauricular Sinus Pits?
No the condition has associated conditions such as Subcondylar impaction of the third molar, renal malformations, renal hypoplasia, renal agenesis, hearing loss, branchiogenic fistulas, commisural lip pits, external ear anomalies, facial and ear bone deformations, cleft palate, spina bifida, imperforate anus, reduplication of the duodenum, undescended testes and umbilical hernias and a proneness to allergies.
Do I have all these conditions
Quite simply no: I have Temporomandibular Joint Dysfunction Syndrome, Partially impacted wisdom teeth {but not to the extent they need to be removed}, Sinus problems, Hyperacusis, Tinnitus, bilateral sensorineural hearing loss, Eustachian Tube Dysfunction, The semicircular canals and the vestibule are damaged making my balance very dodgy, rather like constantly walking on a balance beam. I have regular inner and ear canal infections and have lost count of the number of times my ear drum has burst, I have to be careful with these as the membrane surrounding the face can spread the infection to my eyes, because I'm a lipreader I have very regular eye tests and new glasses. The Preauricular sinus can become infected although as I've grown I can recognise the triggers such as potatoes but also having never had it treated I've learnt to tolerate them very well despite the smell. I have kidney infections quite often and as the pain is only located on one side of the back it's suspected I may have renal agenesis with only one Kidney.
Can I wear hearing aids?
Well firstly I want it to make it clear than hearing aids will not restore or add to any hearing, it just makes what you can hear a little clearer. However the fluctuating size of the preauricular sinus pits and the regular infections makes hearing aids impossible.
I also have Hyperacusis whereby, in my case, I can't hear the noise but it hurts, it's like something scratching at my eardrum. For that sensation to be magnified with a hearing aid would be unbearable.
How do I communicate?
Mostly with lipreading or with finger spelling. I love old fashioned letter writing and texting or emails. I can and do use relay but find that not everywhere will accept a relay call.
About my Caree
Name Nan or Caree
Dob 1932
Disability Physical impairment from Pelvic TB, blind in one eye, poor vision in the other, Arthritis, prone to skin infections, cellulitis and a heart condition.
Location Devon
What does caring involve for me?
Well for me it involves a lot of things, I jokingly said to a friend a few months ago can I update my CV to cover all the jobs I do as a carer. The list is something like this:
- Shower/bather
- Nurse {Application of medicinal creams, drops}
- Dresser
- Hairdresser
- Chef
- Decorator
- Cleaner
- Personal Shopper
- Shopper
- Accountant
- Dr {I have to be able to recognise deterioration of various conditions, and new illnesses/conditions}
- Ophthalmologist {I cannot test sight but I do need to recognise deterioration of eye conditions}
- Pharmacist {administering, storing and using medication}
- Events organiser {I need to ensure the Carees social needs are met}
- Health and Safety officer {I need to be able to safely use equipment and make sure rooms are safe}
- Maintenance worker {maintaining equipment}
- Entertainer {making sure that my Caree is entertained}
- Manual handling officer {with equipment not always available I often end up lifting what I shouldn't}
- Dishwasher
- Gardener {although I try to avoid doing all that myself}
- Chaperone
- Blind awareness
- Physical disability awareness
Comments
Post a Comment