Radio interview

https://www.abc.net.au/radio/hobart/programs/statewideweekends/air:-medical-matters-may-12/9754390?fbclid=IwAR0DHDo-zKHumi8oswiMATd_tg8dyvxjrJLv3P4KQVZAANsPNLweQHKRSzQ

11.38 minute interview with myself and Juliette on local abc for the international day of awareness for ME/CFS, 2018.

2018

I had a good year. 

I’m still very much chronically fatigued, slow and exercise intolerant. To stay in my safe zone, I need to keep my heart rate below 110, which I reach pretty easily due to my higher-than-normal standing heart rate. My little beeping heart monitor is my leash. But my activity range expanded this year, and my trajectory is currently very pleasing. This year I was able to do 2400 steps per day on average, compared to about 1700 last year. Here is my good-looking graph. 

My daily step count (weekly average) is a very good representation of how well I feel, because I always potter around more when I can, and go for slow walks, verses schlomping on the couch, or conking out having long naps that I wake up from feeling gross and groggy. 1700 is about my miserable line. Above that I feel ok, can be cheerful, content, happy. Below that life is a lot harder, I feel sick and despondent, fed up, frustrated, incompetent and scared. A “good attitude” can only take you so far when you feel like you’ve had the flu for six months on end. 

This year I also began to be able to do some gentle floor-based yoga and real life qigong (and I still do a lot of imaginary qigong to try calm down my easily-wired nervous system).. I really, really like being able to move my body. It’s a marvelous thing. Plus I regained the ability to take myself on short drives (under ten minutes) to beautiful nearby places like the waterworks, and do small shopping trips in south Hobart, socialize more, play piano and be less grumpy and noise intolerant. I was so wobbly when I first went to the salad bowl that I had to sit on the floor at the checkout, and go straight to bed when I got home, rather than carry my groceries in. But I don’t need to do that anymore. I’m very lucky. I still got a lot of help from my mum and others, with laundry, more strenuous cleaning tasks and shopping. This enables me to use my energy on other, more enjoyable things, and not make myself sick from overexerting myself vacuuming. I'm very grateful. I’ve been able to do most of my own cooking. I don’t need to sit down in the shower at the moment. And I was even recently able to take out the wheelie bins. Watch out world! 

Being a bit more physically independent has taken away some of the mental and emotional burden of having to organize a network of other people to do essential things for me like buying groceries, or communicate my limitations to everyone, such as apologizing to random tradies why I can’t go down the stairs to look at the hot water cylinder, or receptionists at the doctors that I’m happier lying on the floor than sitting on a chair. That was quite exhausting.

I attribute my improvement both to extreme heart-rate monitor pacing, and to the low-dose, off-label use of a drug called naltrexone, which I researched myself and asked my integrative doctor for a prescription for in March. It’s used in normal doses for drug addiction, as it blocks endorphin receptors so addicts don’t get high. But at about 1/25th of a dose it can do something to your immune system (“modulate”, whatever that means), and has been known to help some people with autoimmune conditions. I'm very lucky to be one of the ones it helps. It gives weight to the idea that CFS is, at least in some cases, or in part, an autoimmune disease. But nobody knows that yet. For the first six months it gave me hectic, stressful nightmares, but then I accidentally increased the dose by 0.5ml, and they counter-intuitively calmed down, phewph! I also feel it has caused my body to be a bit more forgiving when I accidentally overdo things, so I’m living less on a knife edge. Although I still have to be extremely cautious in my energy expenditure, there’s a bit more leeway. And I know my sick body better now, and can notice more subtle signals that I've done too much. Being slow, gentle, and always mistrustful of my body is my new normal. However  I’ve mostly slept well this year, and I live mostly without pain. Again, I’m a very lucky sick person.

The previous couple of years my share house was quite unsettled with heaps of people coming and going, but this year I’ve had 4 very excellent, generous, funny, caring, stable housemates and it’s been really wonderful. It’s been a nice house to be sick in, with winter sun and a wild, alive garden and our beautiful old mountain right there, under the sky. Friends attended another working bee to help keep the garden under control.  Again, I’m a super lucky sick person, to have a home at all, let alone such a nice one, in a time of housing shortages and rising homelessness in our city. I was also successful in appealing for the disability pension about six months ago, so I’m way less financially stressed than when I was on newstart. Again I feel so fortunate and relieved, as it’s really hard to get, especially with this invisible, poorly understood illness. 

I also think the longer the time since I’ve been able to do the things that previously brought me most joy, like bike riding and body surfing, the less painfully I miss them. I’d still not hesitate to regain those abilities, and to spend my summer time frolicking in scoparia and waratah-clad hills, and camping away from screens for days on end (I spend too much time on a screen). But I’m able to be pretty content, grateful and in-wonder, just sitting or lying in the one spot for hours at the waterworks, or in the bush out the back of my house. The world is immeasurably beautiful. And the changing seasons keep bringing new, very delightful things.

My housemates took me camping to Fortescue Bay in August, and did all the things for me like carrying the stuff and setting up the tent and cooking. Unfortunately it was still too much for my body and I crashed out really badly for more than a month after. Hence the miserable, lonely, crushed-hopes August, visible on my graph. It wasn’t worth it. But, lovely people brought me soup and children’s books again and I survived.

This year, as even more of my friends had new babies, I did some coming to peace with the likelihood I’ll never have biological kids, which is a thing that happens to many women, not always by choice, and for many different reasons. I’m less worried about being single than I was before I got sick. Sometimes I’m lonely, but more often I really enjoy no-people time. I’ve been pining for a dog to keep me company, and over the last week been practicing looking after a 16 year old pup. Although she’s very gentle and sweet and slow, the walking and pooing and weeing and cleaning up accidents is probably still a bit much for me on my own. 

In summary I am a very lucky lucky lucky fortunate fortunate fortunate broken record, and it’s been a good year, despite loss, despite an uncertain future, despite the third year of a life-changing chronic illness. I’ve got a bit better, I’ve had great people around me and I got to see waratahs in December on the mountain. Chronic illness has given me more gratitude I think. I try not to think about things that could overwhelm my capacity in the future, or my vulnerability to life not going smoothly. Just one thing at a time. I guess, a further insight that ‘hope’ is not about desperately hoping that unwanted things won’t happen to you, because that’s uncontrollable, but gently hoping that you’ll be okay, even if they do, and that life will have beautiful bits anyway. 2018 has been like that.

Thank you all xxx