Living with invisible disability and accessing help

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Photo by Anna Tarazevich on Pexels.com

I have NDIS funding, and I’m grateful for it.  But now that I have grab bars in my shower and bathroom, toilet risers, a bed stick, and elbow crutches there isn’t much else NDIS can do for me. 

Some of the things that would help me are not allowed to be claimed, i.e. my gym membership.  I can claim physiotherapy, which unfortunately I’ve never found helpful for my rheumatoid arthritis.  But I can’t claim my (much cheaper and much more helpful than physiotherapy) gym membership.  It’s pretty stupid. 

I’m very self-motivated and determined.  If I am given an exercise program by a physiotherapist, I’m more likely than most to follow it.  Physiotherapy was essential after having three levels of my spine fused (L3-S1) and I needed rehabilitation exercises to regain strength and feeling in my legs, I improved fast and then improvement tapered off. Now its almost been a year, and I have plateaued.  I still have numbness and weakness in my legs, so I continue some of those exercises daily, but I wake every morning with excruciating nerve pain in my buttocks and down the back of my legs.  So I am going back to my physiotherapist for help with that. I also have neck and shoulder issues, but I’ve tried physiotherapy for those before, with little effect.  What helps me is gym, but I can’t claim that.

NDIS funding for house cleaning

I do get support services, which I appreciate immensely.  I’m not capable of keeping my house clean or tidy on my own.  I am constantly nagging my kids, as I feel they are now adults and they have a responsibility to keep not only their rooms clean, but the common areas of the house as well.    

I have a cleaner whom I love.  She comes in with a team of two other girls and does three hours worth of cleaning in one hour.  They are in and out. They don’t waste time, they don’t stand around chatting, they came to clean and clean they do.

This is an unusual experience.

NDIS funding for gardening

I have been looking for someone to mow my lawns for months.  I have posted on quoting sites, I’ve googled and left phone messages, no dice.  Only one person was available but they wanted $80 an hour to mow lawns. That’s outrageous. I will not pay that, even though it’s the NDIS that’s footing the bill.

The NDIS is a finite bucket.  I don’t waste money, whether it’s the government, or rather the taxpayer, who’s paying or whether its me.  There is a lot of rorting of NDIS, people charging exorbitant rates because its “the government” paying.  I have encountered many service providers that have two rates – one if the government is paying which is considerably higher, and one if the person is paying privately.  I understand it to a degree for therapy services, but for a lawn mower man?   I refuse to be a party to that.

I’m still looking for a lawn mower and someone who can keep the weeds down. I have a tiny yard, if I were healthy it would take no more than half an hour a week to mow the grass and keep on top of the weeds.  Very basic.  But I am not healthy. I have someone who is coming to quote next week. I’ve been waiting for two weeks already, he is very busy.  I have talked to over ten other people, either not interested because they have enough work, or they say they are going to come and quote, but never turn up.  Its exhausting.

Why don’t you just hire someone

My point is, I get lots of messages saying “why don’t you hire someone?”

Well, I’d love to.  But its not that easy. 

Another example.  The switch on my ensuite’s “Tastic” (a combined light, heat and fan unit in the ceiling) broke last week. It was stuck in the “On” position. Obviously this wasn’t an NDIS issue, but it illustrates how hard it is to get someone to come and do a job. 

I called seven electricians from google, I listed with two quoting sites. I got two responses, both asked for my number and address so they could take a look, neither turned up, neither answered my repeated follow up phone calls.

Finally, I found someone. After four days of trying, many hours on the phone and $300 later I could turn off the heater and light in my bathroom!  Trying to get that switch fixed took up ALL my energy for those four days.  Very frustrating.

Its not that easy…

I have an NDIS budget for home help.  I could really use someone to help me with the grocery shopping and keeping the house tidy. Because I can’t do much lifting, it would mean me directing the person to move things, put them in various cupboards and drawers, you get the idea.

I advertised on a website for disability help and gave a detailed description. The tasks above, grocery shopping and walking for exercise.  I’m not supposed to walk alone due to exercise anaphylaxis and cholinergic urticaria.  

I tried three people.

The first got tired of tidying up and started not showing up for shifts where cleaning was involved, and only showing up for the tasks she enjoyed. I talked to her about it and told her that was fine, but please tell me which tasks she didn’t enjoy doing and I’d advertise for someone else, and she could continue with the tasks she enjoyed, the walking and the shopping. She assured me that she didn’t’ mind cleaning and tidying…but continued to be sick for those shifts.  It soured the relationship because she let me down on many occasions. I stopped engaging her.

The next lady was almost less able physically than I am.  She was quite delusional about her own capabilities.  She arrived with nice food treats and settled in to have coffee “before we start work”.  She brought things that I was allergic to, and wouldn’t eat anyway, but her intentions were very kind.  She was a lovely lady, she told me most of her clients just “wanted a nice chat”.

I know how lonely chronic illness gets. I know many of us get excommunicated from the world and have no social lives once we reach a certain level of disability.  I totally understand that people would like someone to come over and socialise with them.  I think this is a worthy service that this lady is providing, and I strongly believe this is valid use of NDIS funding. The isolation of invisible disability is a terrible thing and completely underestimated by most people for the devastation it can cause.

But.

I didn’t want a chat.  I wanted home help.  She talked about her kids, her hubby, her previous jobs, what she was making for dinner, the weather yesterday, a movie she watched last night.  She never paused to take breath, let alone allow me to say anything in reply.  It was torturous for me. I hate small talk. And the very last thing I would do is pay someone $30 an hour to provide it.  Her service is valid and she does it very well, but it’s not what I engaged her for.  Even when I did get her out grocery shopping, the constant stream of trivial conversation was exhausting.  I didn’t engage her again.

Third person was very much into the exercise part.  She said a few times that someone as young and healthy as me couldn’t be that disabled, and I’d be amazed at what some exercise would do for my health!  (She had no idea of my exercise history, or that I’ve been a gym junkie my whole life).  She thought because I was obese that obesity was my “real” problem.  Lose that weight and I’d be cured!  I informed her that I used to be lean, I became sick when I was lean and fit and running 5km a day.  She allowed her skepticism to show and I found that offensive. I have enough friends and family selling me this very same fairytale, I don’t need to be paying someone to gaslight me with their ignorant comments.

She was always encouraging me to walk “a bit further” or “a bit faster”.  She’s not a physio or a personal trainer.  This is not her role.  I merely wanted company, someone to be there if I had a bad allergic reaction to call help.  She constantly told me about her other clients and how they attended this wonderful gym that is a 20 minute drive away.  I told her I have my own gym and I’m happy there, but she would NOT let it drop. I really should try it. She could drive me there.  She could introduce me to some of her other clients who’d overcome their “illness” (she meant obesity) to help keep me motivated. 

Best of all she was always late.  Usually half an hour, sometimes 45 minutes.  She told me her other clients didn’t mind. I told her I really needed her to be on time, because I only have four upright hours a day. If I’m expecting her at 10am, I can’t do anything else until she arrives.  She is literally wasting my upright time and energy by arriving late.  I asked if she was running late if she could at least text me to let me know. Then I could plan my time better.

She gave me that “well, you’re only lying around on the couch anyway” look and that was the last straw.  I didn’t engage her again.

I have plenty of other examples.  Its annoying me just thinking about these people.  I may sound high maintenance, and maybe I am, but I write out my needs very specifically.  No matter how clearly I define my needs, the employees seem to have different ideas.  No matter how clearly I explain my invisible illness and limitations of such, they seem to think I just need to try harder.  The people I tried to work with made me feel worse, not better. So I gave up.

I order groceries online when I am organised enough to do so.  I prefer to shop in person, but its not always possible.  I get the Chicklet to help sometimes, I don’t think that’s too much to ask as she is only working very part time hours these days, and she’s not studying anymore. 

The point is, people very often say “just get some help” expecting that getting some help is a very simple thing to do. Its not that easy. Its time consuming. Its exhausting.  And if you do finally find someone who can do the tasks you need, who is willing to do the tasks you need, and at a reasonable rate, they also have to have a compatible personality (for personal support services at least). 

Bottom line? Getting help is not that easy, even when funding is not an issue.

1 COMMENT

  1. You know it strikes me that whenever someone just what they mean is why dont you just be quiet. Or if they say why, it is always followed by you. You never hear why dont I just. Oh no if they had to do it its not just. It is more like let me tell you what I had to do. Its never let me tell you what I just had to do.

    I refuse to listen to the words after why dont, you just, you need, if only you. None of those imply they should do anything.

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