Month Five with Dermatomyositis

It is now October  – four months since I was diagnosed with Dermatomyositis. I’m going into my fifth month off work. October 1st was originally the day I was planning to go back to work.

Four months have flown by. I can’t believe that I originally thought I would be well enough to work by now. The immune-therapy drug, Imuran, that I take, is still kicking in and leaving me with unbelievable fatigue. Add that to the general feelings of muscle weakness that leave me struggling to lift myself from a seated position or walk more than the length of my flat, the nausea and heartburn from the steroids that wakes me up in the night, the additional burden of antibiotics for latent TB risk and for a rare lung infection sometimes seen in immune-compromised patients and I have a lot to deal with.

It’s not all bad – progress is being made. The disease, according to my GP at least, is getting under control. My liver function is back to normal despite the Imuran; my CK levels are very low which is great; my white cell count is high, so there might be an infection going on somewhere but we are waiting and watching. I’ve seen friends and colleagues get struck down with colds and flu, but despite my lowered immunity, I have remained healthy. I also have kept my hair, so far.

I’ve been resting more. Giving in to my body’s need for sleep. I’ve just about stopped myself from saying “but I can’t do this when I go back to work”. I know things will need to change again and adjust when I do go back to work, but I should stop worrying about that for now. I can take my time. I can give my body space and energy to recover.

I see my specialist at the end of this month. I also see my career coach at work where we will discuss when I can come back to work. I don’t think I will be well enough to go back on November 1st, which is the current plan. I am still just so exhausted. I have a consultation with a nutritionist later this month too, to see if there are any other things I can be doing to help recovery.

So, what’s been helping?

I have been obsessively focused on improving what I put into my body since getting sick. I am eating fresh, whole foods. I’m taking lots of supplements with things like magnesium and zinc, and other good things in them. I’m drinking more water. I’ve cut out wheat and milk (both believed to be inflammatory and particularly problematic for those with an autoimmune disease). I drink kombucha, and kefir, and eat big bowls of veg for dinner.

I have learned to admit now when I need help. I can’t walk around like I used to and the wheelchair meant I had an enjoyable, pain-free day.

I’ve navigated snake oil and false hope peddled by the likes of people like Goop, Medical Medium, and so-called Dr. Myers. There is no miracle cure. There is no silver bullet.

I wish I was able to lose weight, but the steroids seem to prevent that for now. My puffy face is getting less puffy as the steroids decrease, which is good for my self-esteem. I’m getting a facial therapy called RF Lift which is helping remove the swelling from my face and has definitely helped add some definition back. Now I just need to get rid of this double chin and I’ll be happy again…

Friends and the lovely J have continued to be supportive and encouraging. J pushed me around in a wheelchair at the Melbourne Show recently and will be doing the same next weekend when we go to our annual gaming expo in the city. I have learned to admit now when I need help. I can’t walk around like I used to and the wheelchair meant I had an enjoyable, pain-free day.

I’m enjoying floatation therapy too – once or twice a month I’ve been soaking in a pod in Thornbury and it really helps with pain. I am super lucky that my pain is mild – headaches now and then and mostly just a dull ache in my joints that doesn’t require painkillers and responds well to heat therapy and magnesium.

I am doing my best every day to get out of bed, stay positive. I don’t always manage to leave the house and that’s ok. I don’t always manage to shower, or shave my legs, or wash my hair, or brush my teeth, and that’s ok.

I’m starting to be able to leave the house again after a couple of weeks of being really exhausted and housebound. So, things do pass. Things do get better. I may even try swimming again soon.

What hasn’t helped?

I am the main blocker of my own wellness. I am learning to rest. I am learning to give my body space to recover. I am doing my best every day to get out of bed, stay positive. I don’t always manage to leave the house and that’s ok. I don’t always manage to shower, or shave my legs, or wash my hair, or brush my teeth, and that’s ok.

Worrying about money and bills doesn’t help – I’m trying to do that less. My income will go back to normal eventually. I’m fine until it does, I just need to adjust my spending on frivolous things and not keep going for retail therapy.

Worrying about work doesn’t help. I don’t know what I will be able to do when I get better. I don’t know if I will need to go part-time or switch to a less stressful position. I can’t know that yet so I should stop thinking about it. I will make the decision at the right time, and it will be the right decision for me at that time.

Feeling like I am missing out doesn’t help. I got a bit jealous of J and some friends having fun nights out at trivia without me recently. But, I can’t begrudge others their happiness. I have great friends who make adjustments for me and help me have fun with them within my limits. They are awesome and I love them all.

What comes next?

Who knows?! Today I am going to rest and try not to feel too nauseous. I went for a walk. I took the bins out. These were small victories.

Tomorrow I am going to try and leave the house for a beauty appointment.

This weekend I will see if I have some energy to check out a gluten-free expo in town.

That’s as far ahead as I can think for now. Simple goals. One day at a time.

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