2018: #MyDisabledHouseboundLife

12 August 2018

This is a modified and updated version of my August 2011-June 2015: My Health and Unwellness page.

I’ve been overdue to officially note here the project I’ve had going for a long time now, #MyDisabledHouseboundLife. The hashtag is a PERSONAL MULTIMEDIA PROJECT of mine across Twitter, Instagram, YouTube, and Facebook. I am documenting my experiences as a multi-disabled housebound Nanticoke  & Lenape Native Woman currently Resident in the UK who is alone and isolated with no Carer or social services support.

I am housebound 24/7. My complex health concerns are well-documented, as is my Suicide attempt Christmas 2009 thanks to the NHS here in the UK where I’ve been living for almost 20 years now. My progressive and chronic conditions have further deteriorated from August 2011 through the present. My physical conditions are NOT going to improve or be cured and neither is my neurodiversity.

Society still does not make it easy for anyone who is physically disabled, chronically ill, neurodiverse, or all three like me. It’s even worse for those of us who are Housebound, socially isolated, and struggling on our own.

I firmly believe, based on personal experience as well as social networking with other disabled people, that we simply want to live the best possible life regardless of our circumstances.

Whether or not we actually deserve to do so depends on whom one asks.

At any rate, #MyDisabledHouseboundLife encompasses:

  • Autism (Asperger Syndrome – diagnosed 03 Oct 2013)
  • Severe Clinical Depression (Diagnosed February 2009; possible Bipolar Disorder – TBD)
  • Manic episodes
  • Osteo-arthritis in both knees (surgery needed)
  • Osteo-arthritis in spine
  • Spinal injury (per MRIs -possible surgery needed)
  • Incontinence (bladder and bowel, result of emergency hysterectomy in 2009 )
  • Irritable Bowel Syndrome (IBS)
  • Chronic debilitating pain in spine and knees
  • Fiery biting pains and numbness in feet and toes
  • Leg and Feet spasms; especially when lying down
  • Chronic Insomnia
  • Chronic Fatigue (often bedbound)
  • Anxiety
  • Panic Attacks
  • Meltdowns
  • Agoraphobia
  • Bulimia (since I was 12 and I am now 52, treatment delayed)
  • Obesity (weight gained over past few years, but with limited income and challenging daily living conditions I am at a plateau because I can’t manage very much cooking. I ration cheap microwavable food and takeaways. Three balanced meals daily would be a luxury).
  • Gilbert’s Syndrome (Blood disorder)
  • Visual Impairment (my eyesight is so bad I am entitled to free eye tests on the NHS and always have to get special lenses to cut down on the extreme thickness of my usual ones).

    My eyesight has gotten worse as of 2016 – I now have to have distance and reading glasses. [My last pair of glasses snapped in two and I had to get a home visit from Specsavers].

Factors STILL impacting my health and “wellness” as I write this in August 2018:

  1. I continue to be Housebound. This has been the case for 7 years now.
  2. I do not have a Carer or Support Worker to help with daily living needs, especially hygiene (inaccessible bathtub too high to easily step into with a cheap shower-head attached to faucets), nor can I afford to hire one privately. My Council’s Adult Services group have agreed that I need a Support / Care Plan. Have tried for an home appointment since 02 September ’13 without success..
  3. I am unable to take public transport. due to my limited mobility and chronic pain. As such, I also cannot afford to pay for taxis and where I live is inaccessible for such service (a narrow semi-rural lane that would require me to walk more than 100 metres just to reach near the end of it – which I cannot do on my own… at best I can do up to 20 metres with my walking stick and using walls, railings, and furniture for support indoors).
  4. Being Housebound as I am – I continue have little interaction with anyone outside of the internet. This is due to a number of factors but mainly because I became physically disabled right after moving from London to Wales and never managed to make any friends here. My impaired mobility due to degenerative bone disease / Osteoarthritis has worsened since the initial MRIs were done revealing the damage to  my spine and knees. This is due to the progressive deterioration inherent in m condition but also because of several bad falls, one of which I managed to document on video thanks to keeping my mobile with me at all times. As I’ve said before, it also doesn’t help that I was subject to verbal abuse and being made fun of from strangers on the rare occasions that I used to able to go out with the help of the one friend I no longer have who was willing to help me get out and around as and when I needed it. As a result, I am always very anxious and self-consciousness about attracting unwanted attention in public.
  5. It’s also fair to say that Agoraphobia is now impacting my life as much as my physical and other invisible illnesses. I am literally unable to leave the house without physical, psychological and emotional support and the longer this has gone on the worse it’s gotten.
  6. The cottage I’m renting privately is not only wholly unsuitable for anyone with impaired mobility, it lacks the vital garage / charging space separate from my living space for a Motability scooter which would enable me to work on becoming more independent and getting involved in my community like I used to be prior to becoming severely physically disabled. Also, as with previous residences, it unfortunately was “developed” / “renovated” to a standard incompatible with sensory impairments specific to my Autism (Aspergers). I had a Housing Assessment carried out by my Council in 2013 which confirms this..

    The floors are caving in upstairs (since 2015), but that’s another problem (and one my Landlord doesn’t seem to be too fussed about – I suppose he’ll keep my Deposit when I manage to move on).

    I had been put on the Council’s List for Adapted Housing because of my disabilities and given an A1 classification, having qualified in 2013. Then was moved over to their so-called new Disability Housing List when they changed their system 2-3 years ago.

    Of course there was consistently nothing available.

    I have been dropped from the Housing List due to not being unaable to respond to their paperwork in a timely fashion.
  7. I continue to be ignored by my GP. I had a scary situation with wounds on my stomach that required me to beg for medical intervention from District Nurses — it took having a meltdown on the phone to the treatment I needed at home; treatment that actually lasted for several weeks. My GP and Surgery didn’t care, didn’t do any follow-up with me.

    I am in need a medical intervention even as I write this; but don’t have the strength to argue about me being Housebound again.

    I was dropped by my Primary Mental Health Team in 2014 and my Orthopaedics Specialist in 2016 because of my inability to get to appointments on my own. I cancelled / postponed / rescheduled too much. Not making appointments has always been a problem for me, but now it is particularly acute and especially because of being Housebound with no support whatsoever.
    1. I need to point out the Cwm Taf is the only NHS Trust that I’ve ever encountered that won’t let patients choose what days and times are suitable for US. They send a notice out with their chosen appointment for you and that’s it. I was even told that doctors would have to be consulted because I wanted to change appointments I knew I would have a problem with even while I still had a friend to help get me there. Morning and late afternoon appointments never worked well for me and still don’t. So I am now without any medical treatment and mental health support.
    2. Everyone agrees that I need to continue with Anti-Depressants and have my old prescription (200mg Sertraline daily) looked at as well as Bipolar — and yet I’ve gotten nothing but obstacles put in my way. My situation isn’t helped by having a GP who says “there’s nothing I can do for you” other than correcting my Welsh and making me beg for referrals the couple of times I managed to see him with the help of my ex-friend.
    3. I was due to have another Orthopedics appointment for the latest MRI results on my damaged knees and back but am not allowed to have my results unless I go to see the Specialist in person. I was ultimately dropped because the likelihood of me keeping the appointment under my current circumstances is non-existent.
    4. There is an Autism Support Group for Adults apparently, but again – unless I can go there is no support. And I don’t like strangers and group situations even at the best of times. So my Autism is just one more thing that I am just left to deal with on my own,
    5. There continues to be a lot of resistance to Home Visits and Phone Appointments of any kind by the Authorities and even despite them having already met me in person when I still had support to see them in person,

I continue to be at odds with my environment, people included, in every way.

Despite all this I try to make the most of my professional background working from home as a Journalist and Writer. This is the only solution that will allow me to manage my complex physical and mental health conditions along with the very real & distinct needs that I also have because of being Autistic.

It it worth noting that in 9 years of trying for a permanent role since the last redundancy not one outside employer I have contacted, or who has contacted me without knowing about my disabilities, has wanted to hire someone with my problems even as a distance worker once the truth of my reality was revealed to them.

Disabled Hell:

https://www.youtube.com/watch?v=RS_FUczQZKU&t=21s

Disabled Hell: The Aftermath:

https://www.youtube.com/watch?v=TJCOVR2cseU

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