So no-one ever told you life was gonna ME this way (clap clap clap clap)

I saw the doctor today, for routine paperwork mostly. My regular doctor wasn’t available so I saw a locum. Seeing someone new really highlighted for me some major failings in the way ME is handled by the medical industry/community/whatever you want to call it, in NZ and quite possibly the world.

Today I asked for a referral to see an occupational therapist (OT), because last night I learned that it was something recommended for GPs to do for people with ME. She asked me if I’ve seen an OT before. I nearly cried. “I’ve never seen anyone.”

Until I asked for it this afternoon, I had never had a referral to any kind of service or agency that could help me with this.



Not. One.

I have been sick for 14 years, and no doctor has given me so much as a pamphlet or web address with information to help me manage my symptoms or explain what is going on with my body. I was given my diagnosis and told “you could try some alternative medicines. They tend to have more success with these sorts of things than we do” and sent home to do my own research. In 2006 there was very little of use online.

I use a walking stick to walk, after a trip to the mall had me stumbling so badly I nearly fell off an escalator (my husband caught me, luckily). I bought my sticks myself. They don’t cost much, so I’m not too worried about that. It’s been well over a year since I’ve been able to walk 200m in one go without a problem, with or without a stick.

I also use a wheelchair for more demanding events, where possible. For things like the trip to Akaroa last year, it’s great, as it helps me to participate in things that should be too much effort for my body. I was given my wheelchairs by members of the local community after I asked for one on Facebook. I asked because I could not afford to buy one myself.

I really need an electric wheelchair or a light and portable mobility scooter, or electric hubs for my manual chair, because I can’t use my wheelchair on a street, as I don’t have the arm strength or stamina to propel the chair beyond a smooth and even indoor environment. I cannot afford an electric wheelchair or mobility scooter and certainly not the beautiful $6,000 wheels I saw last year.

I spent 3 months, about $100 all up (which was pretty good value), and WAY too much energy trying to modify my bathroom (without permanently modifying my bathroom) so I could bathe without assistance, and more than twice per week. I worked out how to do it, and I love the result, but I had to do it on my own. I found a way to turn my bath tap into a hand held shower without losing the tap side of things. I also put an old metal stool in the shower so I have options. The stool doesn’t work very well, but it’s an option and I can’t afford an actual shower chair.

In NZ a ministry of health OT can access mobility aides and devices to help their patients live independent lives. These are usually free or heavily subsidised. They also make reccomendations to the medical team about practical supports (e.g. home help) that would help each person, and can often arrange these themselves.

An OT could have sourced all of these for me, and more, but no-one has ever mentioned (before last night) that this might be available to me, useful to me, or something I should look into. I’ve heard other people with ME, mostly more severe cases or with other compounding conditions, talk about their OT, but because I never hear anyone that isn’t desperately ill mentioning it, I assumed you needed to be far worse than I am at the moment.

My symptoms and history are so text-book ME/CFS that I have never been referred to a neurologist or spinal specialist or endocrinologist or any other specialist who might have been able to give me advice*. My blood tests are such a picture of health that they don’t give any clues about where else to look. There has been no thorough digging through my medical history and life story to see if a different, more treatable condition might be the problem, I have had just the initial elimination of the obvious, generalised checks for signs that something else is wrong, then the obligatory if-it-still-hurts-in-6-months-come-back, and off you go with your shiny new diagnosis**. No-one has suggested a medication or treatment that might help ease my symptoms.***

I spent the best part of a decade (until I could no longer work and threw myself into finding out why) just trying to live with the symptoms I had, not knowing what I should get checked out, and what was just a sign I needed to stop doing stuff. I didn’t realise my migraines weren’t migraines because no one told me that my symptoms might change, or that things like word stuff and new-and-improved brain stuff (TM) might come along if I pushed too hard.

No-one told me that this could be degenerative if I fought it or ignored it too long.

No medical professional**** ever suggested I get counselling to help me come to terms with the life sentence I have been handed. Not one of them thought “hmmm, this person with a history of suicidal ideation might need some professional support with the idea that everything she thought her life would be is suddenly gone.”

I was never referred to a social worker to talk about my wellbeing or my needs, or those of my family unit.

I feel very alone and un-heard when my primary health care providers have never once asked “How are you coping? Would you like to speak to someone about how this is affecting you? Do you know about the supports and services that are available to you?”

Every bit of the extensive knowledge I have acquired about ME/CFS has come from my own research or from speaking to people in the ME community. It’s exhausting.

I would have received more guidance if I were being arrested.

* or PTSD for that matter, so it’s a mixed blessing.

** At least my initial doctor believed me that something was wrong and didn’t dismiss it as simply depression related, hysteria, or hyperchondria.

*** One doctor, who didn’t believe I had ME because of my mental health history, suggested Vit D3 suppliments as an alternative to anti depressants… for my controlled depression… I had read a bit about vitamin d3 and ME/CFS so knew it might help and couldn’t hurt, so I agreed to try it. It did happen to be helpful for the ME, but not my depression.

**** My WINZ case manager did. She’s not even a social worker, but she did more for me in that regard than anyone else.

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