It’s time for another great interview! Today I have the privilege of introducing you to Erika.
Erika: I am a 47 year old Australian woman, with a BA (Hons) in Australian Prehistory, have worked since graduating in 1988, now a senior system technician in IT. Avid reader across a wide range of material, committed bibliophile, love food, my dogs, gardening. Married to another street machiner. Tattooed, fascinated by architecture, buildings, history, associated ephemera. Suicidal depressive, slightly obsessive, with a side dose of Chronic Fatigue Syndrome.
When were you diagnosed? Was there a specific incident/incidences that made you realise you needed help?
There have been members on both sides of my family that have had mental illness or suicide, so if there is a genetic predisposition, I have it. First time round I was a suicidal 18 year old, who had overdosed on pain killers. That lasted several years, no medication, just a psychiatrist. Good friends, the intellectual freedom of university and a determination not to be committed to an institution saw me through. Depression visited intermittently the next decade, along with glandular fever and workaholic behaviour. IT is nuts, once you start working at certain levels. It’s fascinating, it changes rapidly, it’s immersive. I did way too many hours and didn’t notice. Then we got a really awful boss, a true sociopath, and he targeted me. I crashed, big time. I’d had a breakdown from overwork about ten years prior, where I couldn’t stop crying one day and then basically slept for three months. I have no idea how I got through them, or how I fed my animals, but I did. So the boss from hell. I lost it at work, I couldn’t do simple things without getting flustered and crying. That is NOT my standard behaviour. I started drawing blood with my nails, because it gave the pain a physical presence and that was the big warning bell. Plus wanting to drive fast into big solid objects. The responsibility for my animals stopped me, more than anything else, although there was also a measure of wanting to not make anyone clean up my corpse (which apparently is why women tend to opt for less violent methods of suicide).
How do you respond when/if people claim CFS is a “made up disease”?
Wave the official protocols for recognising it at them and point them to the various web sites. Is diabetes a made up disease because you can’t see it the way you can see a broken leg? Really, I don’t have time or energy to try and convince anyone who thinks it isn’t real. This is a multi-system disorder that ravages your life. But because so little is known and there is so much variation, there is no definitive test and no silver bullet solution. What works for one person may not work for another. It often hits people like me, who work hard, don’t turn off, then get an infection and suddenly find they have no reserves and quite a few of their body systems are no longer working as expected….
What stay well strategies do you employ in my daily life?
I work a six hour day, mostly from home. Noise is tiring, having to filter it out and try and concentrate is hard, so I go into the office only one day a week. I’ve had to learn to ask my husband for help with the garden, to learn to pace myself with everything, to let go some of my household standards (the floor is the big one, particularly with dog hair, however I can let it wait now). I have trouble with my memory, so I write lists of what has to be done. So today was get some groceries, renew meds, cook pumpkin for the bullmastiff. She has bad hips, so we have to keep her weight down, and she gets lots of fruit and vegetables to help with that. I take vitamins, minerals and a decoction from the naturopath. CFS tends to mean that your body doesn’t fully absorb nutrients, so that means mega doses. I have morning, lunch time and supper time tablets. I’ve eaten predominantly organic and unprocessed for a long time, and that has probably made a big difference to how well I am compared to some other CFS sufferers.
When I’m tired, I rest. I’ve a mat under my desk at work…. But normally my husband will come home from work and find me asleep on the couch. I must have some still time each day, outside of doing chores, outside of resting. Days that I get some meditation time are generally easier.
I take my anti-depressants, only one coffee per day (but it’s a proper espresso!), no alcohol. I eat sensibly. When I can, a small walk with one of the dogs or a little time in the garden. Regular sessions with a great psychologist.
And my dogs. Just the sound of snoring dogs is peaceful, and one of them is always nearby and touching me.
Summary: meds, supplements, pacing, still time, resting, the dogs, eating healthy.
In what ways is the CFS more difficult than the depression?
With depression, the medication has side-effects, but I still had a fairly normal life. Worked fulltime and overtime, had friends and a social life, a great garden, walked my dogs every day, could read intelligently, edited a dog club journal, worked on my car, visited galleries, could talk to people. Depression, unmedicated, stopped me talking to people, stopped me socialising, dropped a grey fog over me and at the same time, exposed all nerve endings so they were raw to the world, but it didn’t stop me doing other things. CFS means I am unable to do so much that I used to. Because I’m tired, my concentration is shot, it’s tiring being with people, even if I’m sitting in the background. We had family over for breakfast on Christmas day (3 defined hours), and over a month later, I’m still recovering from it. It’s tiring having conversations in real life. You truly realise just how much energy is used doing day to day stuff that would otherwise be automatic. Pretty much everything requires conscious thought and effort. And that includes deciding what I won’t do each day because I’ve only got so much energy.
Additionally, research your conditions. You’re the expert in your life, it helps you recognise what is you and what is the illness. And you may just find keys which help you manage things better.
I’d like to thank Erika for her honesty and giving us a look at what her life is like. The easiest way to defeat stigma is through sharing knowledge and increasing understanding and Erika’s story is amazing and I think we can all identify with her on some level.