Managing Chronic Illness: 04 - Medication And Exercise.

Oh, the catch 22 of exercise. Being fitter will make you healthier, but exercise itself makes you sicker. Is there any greater bane to the chronically ill? Possibly people saying: 'You would be healthier if you exercised more'.

How To Exercise When Chronically Ill:

First, you know better than anyone else what you are capable of. And if anything, most chronically ill people are prone to push themselves TOO hard and make it much worse for themselves. So be realistic about your goals and be realistic about how much you can do.

First, define why you want to exercise. For me, it is about promoting blood flow and keeping myself as physically able as possible. I don't want to get weak joins and I don't want my stamina to drop so low that I can't do things on the days I am well enough to go out. I'd also like to lose weight, but more about that later.

Secondly, once you have decided WHY you are exercising, you must choose exercises that are suitable for you, and suitable for your goals. It might be slow, low impact exercise like slow walking is best for you. Or maybe short bursts of high intensity. You know what is best for me? Swimming. Medium intensity, but most importantly, I can't overheat. Which is my biggest problem with exercise. You know what I don't have easy access to? A pool or the beach. I drive to the beach when I can, but that is much, much less often than I would like.

Thirdly, think outside the box. Can you lift cans of food while watching TV? That's exercise. Can you do leg lifts? Squats? If some parts of your body don't work, how can you isolate and exercise the other parts? What can you do in your living room with a small amount of space. Can you do a dance routine? I promise youtube has hundreds more exercise tutorials on it than you could ever complete if you dedicated your life to trying. You don't need fancy equipment or a trainer and you don't need to exercise the parts of you that don't work well.

Fourthly, did you do ten squats and give up? That's okay. Do ten squats tomorrow. Maybe build up to 11. Then 12. Move slowly. A tiny bit of exercise is still doing you good. Don't beat yourself up because you can't do what a 'healthy' person can. I hate to break this to you, but you aren't healthy.

When Your Doctor Wants You To Lose Weight:

I am going to talk about weight in this blog post, but there will be no fat shaming. And I hope most of you know me well enough that you thought this was a given.

The biggest problem with being overweight and chronically ill, is that doctors, nurses and random people with no right to an opinion will blame many of your symptoms on your weight. It is, of course, more likely that the reverse is true. Being chronically ill makes it almost impossible to eat as well as you want or exercise as much as you want. And in some cases, your illness may be the direct cause of your weight, particularly if you have POS or any kind of inflammation or sleep disorder, along with a lot of mental illnesses.

There are, however, some benefits to weight loss I want to talk about. Two of these, I don't WANT to be true, but however horrible, they are true and until society changes, we are going to have to live with them:

1. It's easier on your joints.

Carrying around a lot of excess weight, regardless of if the weight is part of you, or not (boxes, books etc) is hard on your joints. As is repetitive use of said joints. I know a lot of writers with bad hands and wrists, I know a lot of removalists or warehouse workers with shot backs and I know a good number of overweight people with shot knees. And, of course, if you have bad knees, it's going to be harder to move around and you will gain more weight, and the terrible cycle continues.

2. It's easier to exercise.

There are some amazing overweight athletes and all of my healthy overweight friends can run rings around me. However, it’s a lot easier to exercise when you are carrying less weight. At my heaviest I was over 90kgs and dragging myself up a hill was a nightmare. It still is, but with a 20kg back pack on, I probably wouldn't make it now.

3. It's easier to make doctors take you seriously.

Being fat could kill you. Not because of the fat, but because some asshole doctor is doing to blame your fatal condition on your weight. It happens ALL THE TIME. As in, daily. I have no stats on how many people die per day from treatable conditions that were misdiagnosed because they were overweight, but I do have enough stories just from friends to terrify me. Find a good doctor who isn't a fat-phob, warn people away from the fat-phob doctors you do meet. But also accept that in an ER, your great GP isn't going to save you.

4. I will relieve some psychological pressure.

It doesn't matter how much to love your curves, every time someone makes a negative comment, you probably die a little inside. I wish I could be there to punch every single negative person in the face before they speak, but I can't. And you're still going to be bombarded with skinny models and actors and advertising telling you to be ashamed and that you are only beautiful if you are thin. I know in this context losing weight is essentially 'giving up', conforming to make the bullying stop. And yes, that's exactly what it is. We live in a dystopian hell and sometimes you have to do whatever it takes to survive here. 

Medication Sucks

No one enjoys taking medication. Even addicts don't enjoy it, addicted or not, it something we do to cope. To hopefully make things a tiny bit better—either by keeping us alive or removing some symptom we suffer through.

It can be difficult to balance our medications, they can be dangerous, disruptive, and come with a lot of complicated feelings. Its hard to take pills of any kind without feeling there is something 'wrong' with you, even when logic argues that we need it.

Its up to you to use common sense when it comes to your medication. Logic should trump emotion. Take your pills when you should, and acknowledge your negative feelings about them. Journal about them, if it helps. Here are some other tips:

Question. Your. Medication.

At least once a year, I like to re-assess and re-trial all my medication. Depending on what medication you take, this may be dangerous, impossible or relatively easy. You can book a meeting with a pharmacist in Australia, who will meet with you and go over all your medications looking for potential clashes and interactions. They can also talk to you about side-effects you might be treating as symptoms. Symptoms evolve and change and if you have been taking a lot of medications for a long time, symtoms that are getting worse may be from the medication. EG: I took Panadol almost daily for 20 years. Recently when my headaches just would not ease, I spent a week with NO painkillers, not even Panadol. It was hell. Not going to lie. However, one of the new aspects of the migraines eased up, only to flare again when I tried the Panadol again. I can no longer tolerate Panadol and I have had to adjust my medication schedule accordingly. It used to be I couldn't take nurofen without throwing up, now I handle it just fine.

Likewise, an old migraine medication I took for ten years suddenly started giving me seizures. You change, your symptoms change and your reactions to medications change. Anything you are on long term needs to be re-assessed regularly to weed out illnesses-disguised-as-cures.

Research New And Alternative Medications.

I don't mean alternative therapies. Don't switch your Naltrexone for crystals.

Don't disregard vitamins and herbals just because they are 'simple'. Let's be honest, after years of chronic exhaustion, we would feel stupid if our condition was treatable by something as simple as a vitamin. Iron, or vitamin D, or Vitamin B. However, this is literally a best case scenario. Feeling better from taking a pill with no side effects, no prescription, no long term harm.

I'll tell you something else, a lot of 'hardcore' drugs are just complicated versions of simple things. Medications are just compounds of other things. Most of us know penicillin is derived from mould. All drugs are derived from something and sometimes the only reason a herbal supplement is not an expensive prescription drug is because pharmaceutical companies have not isolated the right compound yet.

Valerian root and turmeric are two fantastic examples. Valerian, when concentrated, is a better sleeping agent than any commercially available sleeping pills. But it also dangerous. So the valerian you get from blackmores is very mild. Because pharmaceutical companies don’t know WHY valerian makes people sleep, they can't turn it into a sleeping pill yet. But they are trying. Meanwhile, Valerian is not taken very seriously by anyone as a sleeping aid, even though we KNOW it is more effective.

Turmeric is the same. With pepper, it is proving very effective at treating certain conditions, just as Indian medicine has been saying for centuries. However, the active compound isn't known, so pharmaceutical companies have been releasing rather misleading studies claiming turmeric has no effect. Really, the specific compound in turmeric they tested had no effect. But in spreading these results, they drive people away from using turmeric and back to their other prescription products.

Remember Health Is The Goal.

Your goal is always to be healthier in the long and short term. We need to stay fit, flexible and strong enough that life doesn't become more difficult for us. But we also don't want to make ourselves sicker trying to overdo it.

Likewise, we want our pills to improve our situation, not make it worse, and that means a lot of trial, error, research and inconvenience, which can often leave us struggling in the short term, but is hopefully beneficial in the long term.

I'm not a big fan of doctors, but I hope you have one you can trust to speak to before you embark on any medication tests or exercise routines. Who knows, they might even have some good ideas.

Next week: Socialization, time management and goal setting!

Things I have learned in the First Three Months of Being Out As Trans:

The first three months of being out as trans have been both a rollercoaster and less eventful than I expected. Mostly, my relationships have not changed. However, I have changed. And I am adjusting to a very different world. In some ways, it is like being transported to an alternative reality.

The most important thing I would say to anyone who is considering coming out as trans is this:

You choose how people treat you.

Literally just tell people what you expect. Don't ask. Don't be apologetic. Don't compromise. This is kinder to the people around you. They don't know what to do, they are looking for you to tell them. So, tell them, and when they get it wrong, tell them that too. And don't be afraid to walk away from people who fight you about it.

If your mother died, and some asshole kept asking you how your mother was every time you saw them, you would cut that fucker out of your life. If people can remember you get older every birthday, or that your relatives have died, or that you got married or divorced, they can remember your gender has changed too. If they say it's too hard to remember, they're lying.

Here's some other important things I have learned:

Bras Are Not Your Fucking Friend, Ladies.

Pretty much from day one of coming out (Jan 12^th, 2018), I put away my bras and either went bare chested or wore binders if I was going out. My posture improved, and I was more comfortable, physically. I wasn't sure how much of that was simply owed to the decrease in dysmorphia… until I had to put a bra back on.

Fucking hell. God damn, ladies. Let me tell you, bras are the fucking enemy. I used to think I could NEVER go bra-less. My breasts are heavy, I'm somewhere between a DD and an E, depending on brand. It used to hurt when they moved and swung. However, that only lasts about two weeks, then the muscles across your chest develop a bit and now I can even run bra-less without any discomfort.

However, the moment I put that bra back on (a nice, sedate T-shirt bra that was always my most comfortable favourite), it all goes to shit. I had INSTANT lower back pain, my posture, which had been fantastic, dropped forward and I could feel how unbalanced I was.

I know ladies all want boobs that are sitting up nicely and look shapely, but girls, GIRLS, I am telling you now, that is not what they are supposed to do. Take it from a dude who used to be beholden to the bra-prison. Go bra-less a month and you will realise how fucking terrible bras are for your back, your posture and your balance.

Yeah, they make your tits look awesome, but they are like high heels—for special, painful occasions only. I am sure none of you are shocked the beauty industry has been LYING TO YOU ALL. And I was a complete convert. No way I thought being bra-less would be possible for big breasts, but I am telling you, everything improves without one. The only people who really benefit from your wearing bras are men who want to oogle your tits and fuck them. Seriously, fuck them all to hell.

The Only Friends I Lost Were Assholes

I was afraid I would lose a lot of friends when I came out. I was worried about some family members too. However, the people I lost fell into two groups:

1. People I knew from my old church who quietly unfriended me.

Great Christianing, assholes. Jesus was friends with criminals and prostitutes, but you better defriend the trans dude, because… what? You don't want to associate with sinners? You know that is the OPPOSITE of what Jesus would do, right? Right? I feel like the only one at that church who even read the bible.

2. Guys who wanted to slam.

Interestingly, the people who fell into this category didn't just defriend me. They all made a point of picking a fight about something unrelated to me being trans and defriending me over that. It was always something completely inane that spontaneously became a problem when I came out. Like, yeah bro, you've been trying to talk me into a date for two years, but suddenly you can't be friends with someone who has pet birds.

It wish all my female friends had some way to get the same effect without coming out as trans so they could clear the fuckboys from their list. 10/10, would recommend.

Men Aren't Constantly Judged

If you're a woman and you decide not to shave, or not to wear bras, or not to wear makeup, you have to make a decision not to care about what other people think. And maybe you're thinking: "But Jake, I honestly don't care what other people think. I am happy being me."

Congratulations. But now I am a dude, I don't have to not care. I can care as much as I want. Because no one else does. There are no comments. No stares. No looks. No asking if I am tired today. No comments that I look sick. No pity. Men don't deal with any of that. There is no policing of my appearance at all.

Sometimes when I feel like shit and none of my clothes match, I feel that faint anxiety that if I go out I have to 'not care' about the looks. Then I remember there will be no looks and I as long as my dick is not actually hanging out of my shorts, no one will notice what I wear. Because I am a dude and there are no standards of any kind. By having a penis, my right to exist is paid for.

People no longer stare at me. I no longer have to wonder 'are they looking at me because I look good or bad?'. Staff ignore me in stores. My life is so peaceful in public now (unless I have to use the bathroom).

Men Are Fragile Fucking Flowers Because They Have No Expectations Put On Them

The downside of men not being judged 24/7 is that they can't handle being judged. They have no concept that women deal with this from birth and a reasonably resilient to it (ya'll suffer a lot of fatigue, I know, but you handle SO MUCH).

Women are expected to meet hundreds of standards that men just… don't. A woman knows to get a job or a partner or friends she must look good, have a good personality, be capable, be emotionally supportive, manage her life and house, etc. Men don't experience that level of expectation and then when they don't have things handed to them, they don't understand why. They exist, they have a penis, other people who exist and have a penis have those things, why don't they?

Women really have NO CONCEPT of how little is expected of men and how much pressure they have internalised, and men really have NO CONCEPT of how much pressure is on women and how many criteria women must meet just to exist.

I thought I knew and understood before I came out as trans, but I had no idea. Its not until you have LIVED with the lack of expectations that you really see the massive difference. And I am not even 100% passing yet.

My perspective on men is actually becoming less favourable now I see how easy they have it. I do know a lot of amazing, sweet, intelligent men and I am starting to recognise, they are the ones who had higher standards put on them growing up. If your parents were strict and made you do housework, look after your siblings, get straight As and be hygienic, go and thank them ASAP—you got a taste of being a woman.

I think its why trans women often don't cope. They're suddenly expected to meet the standards other women are and they can't. Ladies, society doesn't hate you because you're trans (well, it might, but stick with me) it hates you because you're a woman. You just haven't had the benefit of acclimatising to that hate since birth.

Life Is Better As A Man

My life is fantastic since I came out as trans. Haven't washed my jeans in two weeks and they have tomato sauce on them? No worries, I'm a dude now. I have BO and sweat stains? Lots of men do, no worries. Haven't plucked my monobrow? Who cares, I'll see 30 other guys with monobrows at the mall.

And dates, holy shit. Straight ladies, your standards are LOW. I show up on time, pay for your meal and don't grope you or make a joke about your tits and I am a fucking God among men. Literally showing up is enough to impress a straight girl.

Straight men who can't get dates are FAILURES. I can't even stress how easy it is to meet the rock bottom standards of straight ladies. Wipe your asses properly so you don't smell like shit and stop vomiting in their faces? How are ya'll screwing this up?

I have gone from spending an hour and a half preparing for a date to not even wearing clean clothes on a date and I'm still seen as a catch. Maybe I need to start working as a dating coach. Lads, I am offering. Hit me up if ya'll need saving.

Unisex/Disabled Toilets Are The Holy Grail

I have to piss all the goddamn time and suddenly it is a nightmare. Women are not happy when I go in the lady's (and rightfully so, men in the women's bathroom might be dangerous). However, I don't want to risk being beaten or raped in the men's yet. Also, men's bathrooms don't have sanitary napkin bins.

I now have to arrange my face into 'apology' (lady's) or 'I will fucking fight you, just try me' (men's).

There aren't words for the relief I feel when I see a unisex disabled toilet. But for some reason they have pee on the floor 100% of the time.

People Love Me And Still Mis-gender Me.

Sigh. I'm so used to saying 'he' whenever someone says 'she' now that I do it automatically even if someone is not talking about me. Worst offender by far is my mother. I know she loves me, I know she isn't doing it intentionally, and it still annoys the hell out of me.

So, when you mis-gender or me or dead name me, know this:

1. I know you didn't mean to.

2. It annoys the hell out of me and for a moment I want to slap you.

3. I forgive you and love you anyway.

So that's it. This is my three-month report on being a dude. Most of my interpersonal relationships are the same, which makes me love you all so much more. Overall, I am happier, healthier and my posture is better. Go figure.

No Update

No update this week, since I broke my hand and typing is haaaard.

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

 Etc

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

Reading

                - 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.

Summary

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.