Hi, my name is louisa! — Scope | Disability forum
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Hi, my name is louisa!

louisa
louisa Member Posts: 1 Listener
I have Neuro myelitis optica, a disease with similar traits to MS. I have a lot of weakness on the right hand side of my body and can't walk or stand unaided so rely on a crutch and wheelchair.  I am in constant pain, burning feet,  numbness, tingling and pins and needles.  The Optic neuritis part of it has caused me to lose my sight and I am now registered Severely sighted. 
Unrelated to NMO I have Dilated Cardiomyopathy.
I have also suffered with 2 kidney stones in the past 3 years and feel like I constantly have a kidney stent which is very uncomfortable.
I am currently seeing a geneticist and am having tests to check for a Mitochondrial disease.  A muscle biopsy of my thigh has shown signs of the disease but drs are baffled which one.   
At the moment I feel I have no life; all I do is sleep. A normal day is to get up at 7.30 to see my 3 kids go to school then had a bowl of cereals made by my husband then I go back to bed until about 6.00 when my husband will wake me up for food.  The only time I leave the house is to go to hospital appointments.  I am able to stay awake all day.  I do on weekends and school holidays.   My husband is frustrated with looking after me and we argue because he thinks taking me to hospital or making me food is being my carer where as I see it as something a husband would do anyway.  I have no friends I am able to talk to so I am hoping to share my worries and frustrations on here.
Thank you

Comments

  • Alex
    Alex Scope Posts: 1,305 Pioneering
    Hi Louisa,

    Welcome to the community. We're glad you found us.

    Thanks for sharing. You're welcome to share your worries and frustration anytime you'd like here.

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