August 2011-June 2015: My Health and Unwellness

Lisa J. Ellwood – Updated 3 June 2015

It’s 2015 and Society still does not make it easy for anyone who isn’t “able-bodied”
or neurotypical. I firmly believe, based on personal experience as well as social networking with other people with disabilities including chronic illness, that the majority of disabled people DO want to live the best possible life regardless of our circumstances. It’s common sense, really.

Disabled people want gainful employment at a living wage instead of low-paid unskilled  McJobs for “poverty pimp” employers including charitable organisations meant to help disabled people and profiteering retail giants. Genuine support and resources from government programmes and the private sector are patchy at best and often inconsistent for Users. Working for less than minimum wage at an unskilled job that doesn’t pay the bills is not an option for me – and should not be forced on anyone. The increase in disablism / ableism of the general public, friends and family fueled by rabid “scrounging” “fraud”  misrepresentations and scaremongering in the media also adds to our already considerable burdens.

I am housebound 24/7. My complex health concerns are well-documented, as is my Suicide attempt Christmas 2009. My progressive and chronic conditions have further deteriorated from August 2011 through June 2015. My physical conditions are NOT going to improve or be cured and neither is my Autism (Aspergers). 

  • Asperger Syndrome  (Diagnosed as of 03 Oct ’13)
  • Diagnosed Severe Clinical Depression (possible Bipolar Disorder – TBD)
  • Manic episodes spanning several days
  • Osteo-arthritis in both knees (surgery needed)
  • Osteo-arthritis in spine
  • Spinal injury (per MRIspossible surgery needed)
  • Incontinence (bladder and bowel)
  • Irritable Bowel Syndrome (IBS)
  • Chronic, debilitating pain
  • Insomnia (that often spans 2-3 days)
  • Fatigue
  • Anxiety
  • Panic Attacks
  • Meltdowns
  • Agoraphobia
  • Bulimia (since I was 12 and I am now 47, treatment delayed)
  • Obesity (weight gained over past few years, but with such limited income at the moment I am at a plateay simply because I can’t afford very much in the way of groceries and am rationing cheap food. Three square meals daily would be a luxury).
  • Gilbert’s Syndrome (Blood disorder)

Other factors impacting my health and “wellness”:

As of November 2013:

  1. I do not have a Carer or Support Worker to help with daily living needs, especially hygiene (inaccessible bathtub with shower-head over), nor can I afford to hire one privately. My Council’s Adult Services group have agreed that I need a Support / Care Plan. Waiting for an appointment since 02 September ’13..
  2. I am unable to take public transport. As such, I also cannot afford to pay for taxis or car service.
  3. I 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 real friends hee. My impaired mobility has worsened since the initial MRIs were done revealing the damage to  my spine and knees. It also doesn’t help that I was subject to verbal abuse from strangers on the rare occasions that I used to able to go out without the support of the one friend I do have who is willing to drive for over an hour to help me get to appointments and take care of personal errands. I am always very self-consciousness about attracting unwanted attention in public because I “appear” to be “odd”.
  4. 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. I do want to work on this.
  5. 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. As with previous residences, it unfortunately was “developed” / “renovated” to a standard incompatible with sensory impairments specific to my Aspergers.

As of June 2015:

  1. I continue to be Housebound. This has been the case for 4 years now.
  2. I still do not have a Carer or Support Worker to help with daily living needs, especially hygiene (inaccessible bathtub with shower-head over), nor can I afford to hire one privately.
  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 very little interaction with anyone outside of the internet. I no longer have a friend who is willing to help me get out and around as and when I need it. 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. As I 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. As a result, I am always very self-consciousness about attracting unwanted attention in public because I “appear” to be “odd” because of my disabilities.
  5. Agoraphobia continues to impact 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 I am Housebound the worse this gets.
  6. I continue to be ignored by my GP and have been dropped Primary Mental Health 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.
    3. I am due to have another Orthopedics appointment for the latest MRI results on my damaged knees and back next month. I am not allowed to have my results unless I go to see the Specialist in person. I will be dropped if I don’t keep this appointment. The likelihood of me keeping the appointment under current circumstances – nil.
    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,
  7. I had a Housing Assessment carried out by my Council. The cottage I’m renting privately has been deemed as being wholly unsuitable for anyone with impaired mobility. The floors are caving in upstairs but that’s another problem (and one my Landlord doesn’t seemto be too fussed about – I suppose he’ll keep my Deposit when I manage to move on). Also – as withprevious residences, it unfortunately was “developed” / “renovated” to a standard incompatible with sensory impairments specific to myAspergers.
    1. I have been put on the Council’s List for Adapted Housing because of my disabilities and given an A1 classification, having qualified in 2013.
      Of course there is consistently nothing available.
  8. I continue to be at odds with my environment, people included, in every way.

Despite all this I am keen to make the most of my professional background and skills and be successful & self-sufficient via self-employment working from home. 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 my Aspergers.

It it worth noting that in 6 years of trying 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.

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5 thoughts on “August 2011-June 2015: My Health and Unwellness

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  3. Hmm… For very different reasons, I find my self in much the same position – almost identically, in fact, except no DLA problems (well done with that, btw!).

    I’ve had scooters and powerchairs for the better part of 20 years and, having had to give up driving, I got a new, class 3 scooter (not really worth getting anything else tbh). I’ve used it less than a dozen times in 18 months.

    The one thing that’s blighted my life (with that wonderful thing hindsight), is an unending series of Motability accounts. True, I had scooters and chairs, and occasionally cars, but it’s finally, for almost the first time since 1986, being free of Motability and having the money in my bank instead, that has made the biggest difference to my life.

    For the limited amount I’m able to get out, taxis cost a fraction of my DLA – much less than £100 a month compared to nearly £300 to Motability for a car that would mostly stand in the car park. For the first time I have money for “luxuries” (from a disabled perspective, on benefits, luxuries are what others take for granted!). This week, for example, I’ve bought a new cooker, something that was out of the question in previous years, even though badly needed. And earlier this year I bought a new powerchair. Only a basic one, but still… And, recently, a rigid, ultra-light titanium-framed manual chair for indoor use. Secondhand, but in very good nick (a Quickie Ti), and none of that would have been possible if I’d had a Motability contract.

    So I would urge you, quite seriously, to carefully consider just how much use a scooter would get, realistically, before handing over your hard-won DLA to Motability.

    If you do opt for a scooter, do get as many demos and road tests as you can and – shameless self-promotion! – there’s a huge amount of information on my blog about scooters, buying them, living with them, staying warm and dry http://ronsrants.wordpress.com/ and if there’s anything specific you want to know, feel free to ask.

    One other thing to think about, Motability will fund driving lessons if you ask nicely. I’ve been a biker most of my life but, needing to switch to a car in 1999, Motabiliy paid for my lessons. The downside – you have to have a Motability car before you can apply – I still don’t understand the logic. Better to commit to getting a car after you pass your test, I’d have thought.

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