Wednesday, January 31, 2018

Managing Chronic Illness: 03 – Sleep and Lifestyle Aids

 Sorry this post is a day late. My neighbour sprayed termite spray all around their house and I am highly allergic. The past four days have been… fun. And by fun, I mean an insane, waking nightmare of hives, burning mouth and throat, migraines and vomiting. Good times!

They're outside smoking as I type this, which I am also allergic to. At what point does this cross over from annoyance to attempted murder? Anyway, on with the post.

The Importance Of Sleep

Quality sleep is important to good mental and physical health, and weight loss. Poor sleepers have a higher risk of heart disease and stroke, they eat more calories, they have reduced insulin sensitivity, putting you at higher risk for type 2 diabetes, they have poor concentration and lower performance, are more likely to suffer depression, have weaker immune systems, suffer increased inflammation and lowers your ability to empathise. Which is terrible news if you are an insomniac like me.

However, reading that list, it becomes very clear why it is VITAL we do everything in our power to get eight hours of quality sleep every single night.

There are several ways to do this and talking to your doctor about prescription and over the counter sleeping aids might be one of them. You should also try and exercise in the morning, get 15 minutes of sun a day, avoid caffeine up to six hours before you plan to go to bed and avoid screens of all kinds for at least an hour before bed.

Make sure you go to bed as pain free as possible, wear comfortable clothes and keep the room at a comfortable temperature.

Mattress Quality

Quality beds are very expensive. I know. However, when calculating the price, remember you will be spending a third of your life using it, and a good quality mattress should last ten years. So always divide the cost by ten, to see how much you are paying a year for high quality sleep. Its probably not as much as you think, when you consider how important sleep really is.

It might be a good idea to start a mattress saving fund and put aside your tax refund, along with a set amount each week. If you've just brought a new mattress, and a good mattress is $10, 000. You need to save $1000 a year for the next ten years so you are ready to buy the next one. $1000 a year is only $83.50 a month and if you put it in a high interest savings account, you'll come out with a little more at the end.

Another tip is to wait for big sales at mattress stores and buy then. You can get as much as 50% off at End of Financial Year Sales. If you keep your receipt, or scan it, as they tend to fade, and show that when you try and sell your mattress, you might even be able to get $1000 back. Which can go into your new mattress fund.

Pillows, Sheets and Hygiene

You (hopefully) spend 8 hours out of every 24 in your bed, on your pillow and sheets. During those eight hours you drool, sweat, cough, fart, shed dead skin cells and wipe snot and eye-goo on everything.

When you think about that, suddenly changing your sheets and pillow case every day feels like a good idea. However, that's not always practical. You SHOULD, however, change your sheets and pillowcase every week.

Did you know, within 12 months, the average volume of a pillow becomes 1/3 dead skin cells? Yep. So, make sure you get a new pillow every 12 months too. Or every six months, if you are prone to sinus infections or lung problems.

Also, remember if you are sick with anything contagious, your bed has become a hotzone. When you recover, everything has to go in the wash, or you could just keep reinfecting yourself.

Lifestyle Aids

Lifestyle aids are any equipment that makes your life easier, pain free and more manageable. Walking frames, wheelchairs, heat packs, ramps, handrails, specialised cooking equipment, glasses, stools, braces and splints, even things like soft socks, specialised bras or underwear, shoes and a hundred other possible things.

Sometimes we, as chronically ill people, refrain from using these tools because we feel we aren't sick enough to deserve them. This is crazy talk. There is no need to 'qualify' for an aid. They are designed to make life easier, so if they make your life easier, you are qualified for one.

Sometimes, people will tell us we aren't qualified. These people are assholes and you don't owe them anything. Practise the words: "I have difficulty with X. This aid makes X a bit easier for me."

Anyone who doesn't apologise and gives you a hard time after that is not deserving of your time, energy or love. Ignore them and move on with your life—hopefully with a bunch of new aids that make things easier for you.

Lifestyle Aids Exercise

This is an exercise to help you determine if you have the best lifestyle aids on offer, if you need more, and what those aids should be.

First, I want you to write a list of all the things you struggle with in day to day life. It helps to think about every room in your house and look at your day planner, in order to ferret out any difficult things you take for granted.

Some examples might be:

- Toileting
- Showering
- Cooking
- Driving
- Getting out of bed
- Shopping
- Walking the dog
- Typing
- Watching TV
- Reading
- Doing Taxes

When you have a long, comprehensive list of things that are challenging, it is time to subhead them with why. EG:

- Toileting
                - Getting up and down
                - Constipation

- Showering
                - Getting fatigued
                - Slipping

                - Trouble focusing/blurry vision

Watching TV
                - Can't hear well

When you have a comprehensive idea of what difficulties you are having with each activity, it is time to start looking for solutions. And I promise there are a lot more solutions out there than you think! If you have a problem, someone has solved it. Most of those really silly seeming ideas on infomercials are designed for disabled people. For example, those egg crackers? Designed for people with one arm. No spill bowls? Designed for people with tremors. And so on.

If you have trouble getting up and down from the toilet, it is worth installing a handrail. If you are having issues with constipation, it may be that a Squatty Potty will solve all your problems. If you get fatigued in the shower, often a plastic chair will help. If you slip over in the bath or shower, simply invest in a cheap anti slip mat. I stopped reading for years until I got a kindle and realised I could make the text as big as I needed. And most digital TVs these days had subtitle options that can be turned on and off with your remote. You may already have the aids you need and not know it!

Asking in groups (facebook groups are plentiful and accessible) for people with similar conditions to you can expose you to a whole wealth of products you didn't previously know about. There are even fonts that make it easier for dyslexic people to read.

When you have at least one solution to all your problems, list them in priority. You might have to list them in order of practicality while you are at it. Newer, more expensive cars have navigation and driving options that would make life MUCH easier for me, but I simply can't afford a new car. Let alone a new fancy car. As much as I would like one, I have to accept I just can’t have one at this time. However, I do have a lot of aids currently on my wish list and I put aside a little money every fortnight, buying them when I have saved up enough.


So, there you have it. Sleep well and use whatever tools and aids make life easier for you. These really apply if you are chronically ill or not. If you have any really cool lifestyle aids you want to share, link them in the comments below and they can be a resource for everyone.

Next week everyone's favourite topics: Medication and Exercise.

Tuesday, January 23, 2018

Managing Chronic Illness: 02 - Food and Fluids

For the next six weeks we're doing something a little different. We're talking about chronic illness, its impacts and how best to manage those impacts and still get shit done.

This is, however, going to be an HONEST look at chronic illness. Be sure you are mentally equipped to handle that before reading further.

This week, we're looking at food and fluids.

Cooking is Hard and Sometimes Dangerous:

Cooking when you are chronically ill can be difficult and sometimes dangerous. People with MS and nerve conditions can give themselves horrific burns without realising. Often, if I try and cook with a migraine, I will zone out and forget the food. This usually results in ruined food, if not an actual house fire. Another thing that happens is if my hands are shaky, I can drop things, resulting in a house full of broken glass, or accidentally slice myself with knives.

Just preparing a meal when chronically ill can result in serious harm or injury—even if you're only reheating something.

This is a pain in the ass, because we all have to eat and if we can't feed ourselves, someone else has to do it for us. Which is humiliating. However, if you are in this situation, rest assured, you are not alone. And you shouldn't be humiliated when you are otherwise being forced to choose between going hungry or your house burning down.

Hello, Allergies and Intolerances!

Many people with chronic illness also end up with food intolerances or allergies. This is because chronic illness usually involves inflammation somewhere. And inflammation somewhere triggers inflammation in other places, like, say, your gut. If a doctor hasn't told you this before, feel free to burn down the whole clinic—may as well rebuild that trash fire from the ground up.

So not only is cooking more difficult for chronically ill people, but we are also often limited by the types of food we can eat. Many chronic illnesses also directly contribute to eating problems, because many chronic illnesses have a gut component. Or else our medication might cause gut problems.

Thing is, it can be hard to find foods that don't make us shit like a confetti cannon. Or just never shit again without weapons grade laxatives.

And if you do find foods that don't turn your bathroom into a horror movie, they might be difficult, or even impossible for you to prepare regularly. And don't even get me started on eating out with friends.

Everyone has different, sometimes illogical, food issues:

You know that friend you have who is convinced if you just tried THEIR diet, you would be as healthy as them? Set that person on fire. Get new friends. And if you have been that friend, set yourself on fire and stop doing that shit.

Veganism works great for you? Fantastic. I have low iron, can't eat any legumes or many iron rich foods, can't have iron supplements without throwing up, and they can't get a line on me to do infusions because I have shitty veins. I have to eat red meat twice a day. TWICE A DAY. And I ain't that morally phased by cannibalism either, so hit me up with your bullshit advice again, I dare you.

However, if you're vegan and you come to my house, you can bet your ass I am going to have an awesome vegan meal waiting for you. Because it works for you, and I am happy for you.

If you're frustrated, because you can eat one brand of cheese and not another almost identical brand, its probably not in your head. Just eat the cheese you can eat and stop worrying about looking like a liar. Its your fucking health and anyone who thinks you're making it up for attention just doesn't realise how fucking frustrating it is. Or humiliating. Or time consuming. Or they just haven't had to share a bathroom with you.

Food Is Medicine:

Why am I telling you all this stuff you already know? Mostly so you know, I know how hard it is. Because I am about to get mean again.

Despite the difficulties, you must think of food as medication. You must take it as seriously as a prescription. Which means you must stop eating foods that aren't good for you, just because they make you feel good at the time. That's like taking recreational drugs instead of your meds.

Trust me, I KNOW what it feels like to wake up and know the only good thing that is going to happen to you that day is a packet of Tim Tams. I know what its like when you've woken up and you're going to be in pain for sixteen hours, get nothing done, then go to sleep to prepare for the next sixteen hours of pain. I know how horrific it is, when that bar of chocolate is the only part of the day that isn't going to suck.

However, if you want to get to days where you can do things, where the entire day doesn't suck, where the best part of the day ISN'T shitty food, then you have to give up eating the shitty food. Food is an abusive partner. You can't be in a great relationship without leaving the bad one.

We all have different intolerances, but, and this is a big but, WE ALL HAVE THE SAME NUTRITINAL NEEDS. I mean, not exactly, but we all need protein, we all need vitamins, we all need fibre, we all need calcium and salt, etc. Just because its HARD for you to eat something, doesn't mean you don't need it. And, if you want to admit it or not, the lack of it in your diet is probably contributing to you feeling like shit. So, if you find a way to get on top of it, you will feel less shit.

This is going to mean educating yourself on what the human body needs. Please choose to learn from sources that aren't f-ing stupid. Peer reviewed sources that aren't being paid by the food industry, please. I recommend the CSIRO (and their meal/diet books). If that all sounds like too much, find a good dietician instead.

You Are Mostly Fluid:

When I was sixteen, a girl the same age as me, who went to a neighbouring high school, died of dehydration. Or, more specifically, she died of kidney failure which was caused by dehydration. She was not sick, or camping, or isolated in any way. Actually, she just spent a hot weekend partying and drank a lot of alcohol and no water or soda.

When I lived up the top end (Far North Queensland), the older generations, particularly the drovers and people who walked outdoors, lived by a golden rule: 'Don't sleep until you've peed.'

If you couldn't pee before getting into bed, you had to keep drinking until you could. Why? Stops you dying of dehydration or suffering organ damage. Because when you are dehydrated, your body holds on to fluid, recycling it over and over, making it more and more toxic. When you start drinking, it flushes out all that toxic water as urine, rehydrating with the new, clean water. It takes a long time for you pee to become really toxic. Which is why you can keep drinking it to stay alive. But eventually the compounds the pee is supposed to flush out will build up in your body and do a lot of harm.

So, this is why we are told to drink two litres of water a day. It rinses through our body, cleaning out bad stuff, that is then expelled in our pee. That is the function of kidneys and urine. Water also allows us to pass faeces. Obviously dry faeces aren't going anywhere. And it is expelled when we breath and sweat.

Most of us don't drink water though—we drink water with stuff in it. Soft drink, juice, coffee, milk, etc. Hopefully this isn't news to you, but most juice has the same, if not more sugar than soft drink. And soft drink is bad for a whole variety of reasons, not least of all because the gas causes your stomach to stretch and a stretched stomach makes it harder to feel full, so you over eat. I am going to talk about caffeine in another post, but I'm not a huge fan of that either.

If possible, I am a big fan of just drinking water, or home-made juice. Since a huge portion of your sugar intake is probably coming from your fluids, I want you to ask yourself if you really NEED to be drinking soda/juice/flavoured milk or if you just WANT to, because it's comforting and you like it.

Fluids are also medicine. Don't ignore it just because you don't have to chew it.

How to Manage Food and Fluids:

Firstly, you need to know what you can and can't eat. This is a pain in the ass and, to the best of my knowledge, can only really be done with trial and error. A dietician will be able to help you with an exclusion diet. Which is about as fun as being sent to prison for a fun, three-month retreat.

Once you know what you can and can't eat, the next step is making it accessible to yourself. This is when shit either falls apart, or a new, magic time in your life begins. So, how do you make healthy, home cooked meals accessible?

Planning. It all comes down to planning and preparation. You need 3-4 dinner/lunches you can bulk cook and freeze, and you need at least one breakfast you can pre-prepare, or make instantly without too much effort. A good example for breakfast is overnight oats (google for easy recipes) or toast.

Lunches and dinners are going to be soups, stews, casseroles, things you can pre-prepare, leave in the freezer, and then whack into a slow cooker, sauces, etc. Many days the only thing I can safely eat is things that can be stuck in the oven and left there until a timer goes off. So, home made pasties, pies and sausage rolls are great.

Plan what you are going to eat and when you are going to eat it. Three meals a day? Five? One? Whatever works for you is fine, just be realistic and do it with your BEST HEALTH in mind, not what is convenient.

Write a list of the ingredients you need for a week. Buy them. Shopping online is good, I like having groceries delivered. Now, if you have meat and fresh veg, you will have a limited time to prepare it. Set aside a whole day, preferably with someone to help you, where you are going to prepare all your meals for the week, then put them in the freezer/fridge.

Then, simply heat and eat.

Final Ass-kicking:

I know cooking your own healthy food is more effort than ordering a pizza. I know its not as tasty as a pizza. I know you want sugar and fat and cheese to make yourself feel better. But it is not making you feel better. Its making you sicker. We both know it, its time we were both honest about it.

This blog series is not about feeling good. Its about doing the hard work so we can inch toward good health and actually have lives worth living. Would you rather eat junk, accomplish nothing you dreamed about, and die? Or would you rather suffer a little more now, so in the future you have the chance of achieving your goals before you die? Because we're all going to die. Its just a matter of when and what we do before then.

I know it seems super impossible and like it won't make a difference. Maybe it won't, I'm not going to lie. Maybe you could eat the healthiest diet in the world and still never be well enough to spend a half day off the couch. But its better to try and fail. Because its not really failing, its just finding another thing that doesn't work.

Maybe the first healthy diet you try will make you sicker (I did green smoothies for months, HUGE mistake, my iron levels bottomed out and it took me a year to recover). Maybe what you think of as healthy is not healthy for you. Maybe you can keep tweaking and eventually you will find something that works. Maybe it will work well enough you can get on top of something else. And then that will allow you isolate another symptom, and so on and so forth.

That is how I did it. I'm still sick, I'm still a work in progress, but I'm getting there. Its taken over ten years of effort, but I am so happy have progressed. Those ten years were going to pass either way, and if I had done nothing I would probably be dead, or in a care facility with a nurse changing my diaper.

You can get on top of this too. It's time to dig up.