Well, well. Where do I start? Home care.
I pray that none of my dear readers have ever had to deal with ALS or a shock diagnosis like I have had. If you’re reading my blogs though, the chances are that at least one of these applies to you.
You will, therefore, have experienced a moment like I did – when you realize that approved medics and medicine out there on offer in the mainstream aren’t enough to deal with what’s affecting you.
If you want to be your own health care champion you need to get some elbow grease and stuck in yourself. Build a list of ideas for self care and trial, trial, trial until you find what works for you.
The non-Western medicine and holistic treatments might be something worth looking into. I go deep into the topic of holistic self care here.
Also, there are many tests you can perform at home which will help monitor how things are going. Finding those healthcare partners is key.
You don’t want your home to feel like the sterile ward in the local hospital, but having everything at arm’s reach is invaluable – less travel, reduced expenses and stress… it’s a no brainer!
So, how do you become your own healthcare champion?
Home care can be both nerve-wracking and empowering. Start off by implementing the 7 easy hacks for more freedom in your home.
Additionally, if you want to carry out proper medical home care, there is a lot to set up and many different healthcare partners and support networks you need to get enlisted with.
But, once done you get into a rhythm it can simplify your life because you take out a lot of the wasted time and travel you would otherwise have to do to get all your blood and hormone tests and the like.
Empowering, self-driven healthcare
Let’s stop for a second though.
Why would you want to take your healthcare into your own hands? Am I saying that doctors cannot be trusted? Are you worried that you are not qualified to make accurate diagnoses?
Home care is not about taking away from what the fantastic medical profession can do for you; rather it complements and adds to that.
For example, you might just not have the funding to pay for travel to go to a hospital and pay the nurse to take a blood test. If you can do that at home, all the better.
One of the horrible side effects of ALS is no longer being able to work in the profession I had built my career in. Ironically, as my expenses increased my income dropped. I am careful with my money these days; ALS is a greedy creature.
Gone are the mid 19th century and the dark ages of treating a patient. Doctors no longer make decisions without a person’s consent, but that doesn’t mean that you, the patient, always has the full picture.
Home care gives you better access to actual medical records and the results from your (many, many!) tests. Unsurprisingly, I have become pretty invested in my self care and understand so much about ALS.
Combine that with understanding my own body, I can often determine what is good for me, without the help of a doctor.
The full picture
Unfortunately not all doctors and health institutes talk to one another. Of course, I don’t want my medical background shared without my permission.
I find it incredibly frustrating getting a scan done here, a test there and then another doctor not being able to access the data, resulting in delays or misdiagnoses.
Being effective with time and energy
A life-debilitating disease is so time-consuming to deal with. So much effort is invested in managing it. The last thing you want is to have to deal with bureaucracy and red tape too.
Having as much as you can inhouse makes that go away.
Preparing your house for home care
Pull together a list of ideas for self care. Then, do some research into what tests you can perform at home. Decide on your healthcare partners and how you will be interacting with them.
Now you are ready to figure out how you want to make home care work for you.
I have assigned a room in the back of the house, away from where I spend most of my days, to be my ‘medical room’. I store all my medicine here, have syringes, testing kit, fridges to store stuff, vitamins, and equipment. It looks like a doctor’s office/treatment room.
I’m in there daily to get my usual cocktail of pills, as well as carry out the multitude of tests I put myself through. But once I walk out of the room and shut the door behind me I can pretend that that part of my life does not exist.
I go back into the world as a fit person, living in a normal home.
Self care is very important when you have a horrible illness like I do. ALS might be physically debilitating, but it crushes my mind and soul too.
I go through some dark times and need to take good care of my mental health. If you don’t know what I am talking about, take a pause, head to my What is Self Care blog and get up to speed.
You will feel so much better for having self care in your life.
Getting the right tests is easy
Our bodies are these amazing structures that can walk and talk and dance and come up with Einstein-like hypotheses (ok, not the last one in my case!). But they are also finely balanced.
Throw one element off-kilter and the whole thing can come crashing down.
Have you ever twisted your ankle or just hurt your foot? For a couple of days you walk a little funny, trying to keep the weight off that leg… and then you start developing a pain in your hip? Your back begins to ache? All from a tiny pain in your foot?? How are they even related?
It’s obvious, of course, that misaligning your spine and putting more weight on one side of your body is going to take its toll, but what is surprising is how fast it happens.
With ALS that picture plays out in an apocalyptic way. Bits of my body have stopped listening to my brain. I don’t get enough exercise as a given. I am on truckloads of medication and vitamin supplements, each addressing the side effect of the next pill.
It’s crazy. Sometimes I think if I stopped taking all those tablets I might actually feel better!! But of course, I need to get rid of the ALS for that to really happen.
Back to home care.
Lots of testing with a severe illness is inevitable. Find yourself a lab near your home and it just makes things so much easier. You want to be spending the time you have with your loved ones, not bumbling along on some bus for the nth time that month.
You don’t need medical insurance to use Health Labs, or be referred by a doctor. They offer testing for just about everything (the list is super long) and results are typically back in a couple of days.
Deciding what can be done at home versus in a hospital
It’s not always straight forward what you should get tested for by a doctor or at home. Some medical professionals are really open to discussing the options, whereas others are too worried about putting their neck on the line. I would suggest approaching the subject carefully and take it from there.
If you don’t feel that is an option, ring the labs and get more background as to what they do.
You can also risk assess the testing you decide to carry out at home. What I mean by that is, look at the outcome if you don’t manage that aspect of your health correctly.
If, for example, the worst that can happen is that you don’t take enough iron and become anemic and tired, well, it’s uncomfortable but not life-threatening (I caveat, every person is different and I am not qualified to give another person medical advice).
You could intersperse your home testing with check ups at your doctor’s to verify the results and give you confidence in your home care plan too.
Tests that can typically be carried out as home care
Like I said, what works for me might not work for you, but here are the tests I perform at home. This list might be a good starting point for you to look at and research to see whether it is right for you too:
Gut problems can be caused by so many different things. It’s easy to assume that your main illness is the cause of your pain, but you could well be wrong. For a couple of dollars you can carry out a plethora of tests and get some answers.
Aside from medication, my breakfast, lunch and dinner are also packed full of vitamins to keep me ticking along nicely.
They are just as important as the medicine and with some you have to be pretty careful – too much or too little and my system shouts ‘help’!
My joints are in agony a lot of the time. The tiniest change in weather exacerbates the inflammation and swells the extremities of my limbs.
There are so many different types of arthritis and how to treat them, so getting an accurate assessment can speed up relief considerably.
Blood tests are a-plenty when you are ill. Hormone levels are a good indicator of where something might be wrong. Hormone blood tests are quick and simple.
With a bit of practice, you can learn how to take blood yourself, or have someone near you do it for you.
My take-home message is that you can gain more control of your care. I find it empowering. Of all the ideas for self care, anything that makes me feel master of my own destiny is good.
The subject above is complex, so call me now and we can talk it through. Doctors can be helpful or a pain; some are really patronizing.
Having some of my background should give you the confidence to ask questions you would otherwise be nervous ask, letting you create the best home care that works for you.