Managing my illness

I’ve written before about some of the things I do to help manage my autoimmune illness – what medications and supplements I take, what sorts of things I do and don’t eat, and other things. Some people have found this information useful, so I thought I’d do an update.

Here’s a couple of the previous posts: Medication Masterpost (2015), Pills and thrills (2013). Both of these have a bunch of info about the medications and supplements I was taking then, and some recipes and things.

This list of medication doesn’t include the ones I take for my mental health. It’s already pretty personal to share this stuff so I’m drawing the line there, but if you want to know because you think it might be of use to you, you can ask privately.

Morning
– 2 x Panadol – obvious reasons
– 15mg Prednisone – a steroid. Being on it long-term is not ideal, but it’s one of the only reasons I can function at all.
– 50mcg Thyroxine – assists thyroid function because mine doesn’t work properly

During day/as needed
– Ondansetron – for nausea, which I get a lot as a side effect of everything else
– Panadol
– Ibuprofen

Bedtime
– 900mg Gabapentin (3 x 300mg capsules) – a medication for nerve pain. I think it’s used a lot for fibromyalgia? Also happens to be sedating which is useful.
– Codeine – for pain, obviously. Dosage varies depending on the day/how I’m feeling.
– .5 tab Zopiclone – so I can actually sleep

Wednesdays
– 20mg Methotrexate – this is a chemotherapy drug used for a variety of chronic illnesses including rheumatoid and inflammatory arthritis. I’ve only been taking it for a month, so I can’t give a comprehensive review yet. The negative side effects – nausea, fatigue, depression – kicked in straight away but it takes 6-8 weeks to really tell if it is helping. So I guess I can report back next month.
– 1.25mg Vitamin D – higher doses of Vitamin D have been shown to help fatigue and depression

Saturdays
– 10mg Folic acid – this is given to counteract the negative effects of Methotrexate
– 1.25mg Vitamin D

Daily Supplements
– Turmeric 15800 complex – turmeric is a natural anti-inflammatory
– Go Healthy Liver detox – I’m taking this because basically my liver is struggling to cope with filtering all of the medication I’m on. As a result, my hormones are out of balance and that effects my mood and a bunch of other things.
– Clinicians stress support for adrenal fatigue – another kind of long story. Basically, your body makes cortisol and adrenaline in response to stress. My body got stuck in flight or flight mode, which caused me to fatigue that response. It’s probably why I have chronic fatigue at all.
– Vitamin B6 – important for a bunch of body functions like immune stuff, which mine needs help with
– Magnesium – helps with digestion, energy, anxiety, and sleep
– Zinc – helps regular the immune system
– Probiotics – I rotate which ones I take. These are super important, for everyone, not just if you’re sick. There’s a lot of research showing that inflammatory illnesses and things like chronic fatigue are related to what’s happening in your gut. I’m trying to restore my gut flora after it was destroyed by antibiotics.

Monthly +
– Remicade infusion every 6-8 weeks – this is another chemotherapy drug. This one I have to go to the hospital for. I’m being given Remicade only because my illness didn’t respond to any of the other drugs my Rheumatologist has tried (ie the TNF inhibitors). It’s definitely not a first line response, but it’s given for a variety of inflammatory illnesses like Ankylosing Spondylitis and Crohn’s disease.
– Kenacourt injection every 12 weeks – this is prednisone, but as an injection so it has less side effects
– Vitamin B12 injection every 12 weeks

 

FOOD

I’m not going to write out the list of all the things I do and and don’t eat, that’s boring, but I try to follow a fairly anti-inflammatory diet, and there’s a few specific things I know I can’t eat because they’ll make me sick straight away.

One of the things I do that may be of use/interest is my turmeric tea concoction. Apparently turmeric is best eaten with coconut oil or some other kind of fat, as it gets absorbed better that way.

What I do is cut up fresh turmeric and ginger, and put a few slices of each into each compartment of an ice cube tray. Then I add two whole cloves, and some crushed up cinnamon quills (you could use powder). You then pour melted coconut oil into each compartment, and put it in the freezer.

When you want tea, you can pop out a cube, put it in a tea egg or strainer, and add it to a cup with boiling water. Let it steep, and finish by adding whatever milk you usually drink, I use almond milk.

This tea is anti-inflammatory and these ingredients also apparently assist with hormone balance. And it tastes nice too.

Another quick recipe: these oaty biscuits. Can be modified depending on what dried fruit you can/can’t have or want, and is actually delicious.

 

WHAT ELSE?

Yeah, I’m gonna be that person who brings up yoga. I’m not saying do it – I’m just saying it works for me. The key is finding the right class for you. Obviously, mine is very slow and easy. With Ankylosing Spondylitis, my bones will actually fuse together if I don’t keep everything moving, so doing this sort of gentle, low-impact stretching and exercise is really important. I personally find it incredibly beneficial for both my physical and mental wellbeing.