Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
Andrea’s Norwegian Dilemma: Let ‘rehab’ make her even sicker or have no income.
The Norwegian health care system makes some patients sicker - sometimes permanently.
Andrea is quite ill and very disabled - she is only well enough to leave her home about once a month.
But Andrea has a Hobson’s Choice: Live at a work place rehab institution for a month or live without income.
Andrea grew up in a small town outside of Oslo (Norway) - small safe neighbourhood - born in 1987 - Andrea is a millenial and looking back it seemed almost absurdly idyllic - so a very nice childhood, not athletic but very active, hiking, swimming, biking, baseball - only child, parents are divorced, but very functional divorce and good environment
Andrea loved school, excellent student, loved reading, always 3 books at a time so there was no gap without a book - worse nightmare in childhood and adolescent, biggest horror she could imagine because she loooooved reading - great teachers, friends - read a lot at home
Mostly fiction, had read all of her mother's books in Norwegian by the time she was 10 or 11, so had to start reading Enlgish books - a lot of sci fi and fantasy, because they came in series with lots of pages - reading a big part of her life until she started getting ill
Didn't get diagnosed with ME (Myalgic Encephalomyelitis) until 2016, but in 2006 at age 19 years, Andrea got a series of infections over 2 months - had never been ill before, never missed a single day of school - after being sick, Andrea tried going to a spin class but couldn't even finish the warm up because lung capacity only 50%
Lung capacity slowly improved over the next year, but a lot of stomach problems and pain emerged - but it took 3 years to discover she had lactose intolerance, a rarity in Scandinavia, probably a result of antibiotics - inflammed easophagus, ulcer , developed asthma - went to study at university in another city, but there was always some health issue popping up, a virus, an infection
More tired and exhausted each semester, but still managing to study full time, work part time, volunteer, working out most of the time - loved the university life - but still had bouts of illness
Was working out 8 times a week, running, strength training - so periods of total functioning - but periods of time of illness and severity increased - really struggling by end of 2010, by early 2011 barely managed school course work - then went to Brazil to study for a year
With the warm climate, reduced work load, afternoons spent on the beach, and she felt really good - in 2012 returned to study in Trondheim - was in the best shape of her life in autumn 2012 - doing her graduate studies, a lot of volunteering, and working - but only lasted about 12 months, in 2013 started struggling
Andrea realized she was making herself sicker by pushing through to do more and saying yes to more things - realized she had to slow down - but actually doing it is a lot harder
By starting something new she would get a boost in motivation, so had a lot on her plate, but it was a lot of fun and enjoyed responsibility and high quality work - but spinning plates and impossible to keep up
Andrea would usually crash at the beginning of summer vacation, and spend all summer recovering until the fall semester, but in 2013 she wasn't recovered, she was still exhausted
Andrea's 'crash' was like a burnout, lack of energy, lack of motivation, getting recurring infections - but the character of her crashes changed in Sept 2013
Andrea went for her usual mornig run, but only got about 500 metres - crawled home and that afternoon had her first migraine - it lasted 5 days and was her first ME-like crash - paralyzed for 5 days, the most pain, where nothing else existed but the pain - that was the start of what became ME
Extremely scary, frightening - never experienced her body compeletely shutting down - but during the migraine, the pain was so overwhelming, she couldn't think / experience emotions - when the migraine was over she felt totally fine and sort of forgot about it - so relieved to feel okay and focused on getting back to every day life until it happened again a month later
Went to her doctor, and Andrea agreed it was probably over working and stress - got a note for her studies and moved back to Oslo to work on her Thesis, and working and volunteering - but then collapsed - couldn't do anything due to physical and cognitive exhaustion
Andrea improved a lot over the next year - went back to finish her Thesis - even though could only work 25% of time - felt hopeful she was over the 'burnout' - because 25% functioning felt so good compared to before when non-functioning - telling herself everything will be fine, return to work and working out
But it wasn't fine - 3 weeks after returning to work she got sick again - went to her doctor to say that she is not recovering like before - he asked if she considered if she may have 'chronic fatigue syndrome' so they started to look into that - also had neck problems so went to a chiropractor and had a severe immunological reaction to that adjustment
Chiropractor warned Andrea she may have a reaction for a few days but it will pass - but Andrea got really sick for almost 2 months of flu like symptoms, painful and swollen and red back - lie in bed screaming from pain - as pain calmed, flu symptoms remained for 2 months
Chiropractor helped with pain, but flu like symptoms stuck and they recognized she had ME - in Norway, ME and CFS (chronic fatigue syndrome) are 2 different illnesses - in Norway, CFS is centered around fatigue without other symptoms - but ME patients fulfill the Canadian Consensus Criteria
Andrea, being a 'nerd', had already researched ME so was not surprised by the diagnosis - she had every symptom - but it was a relief to get official diagnosis - doctor said that most people get back to normal life in 5 - 7 years - and some people do improve and can return to part time work
Andrea had seen a psychologist when she thought she was 'burned out' and had been through that part of the Norwegian health care system, and the psychologists did not believe there was any thing wrong mentally - doctors don't know a lot about ME, but there is not a lot to know - Andrea was lucky that her doctors did not pass judgement and acknowledged she was sick and trying to get better
In Norway the guidelines for CFS and ME recommend patients attend a work related rehab facility - goal is to get patients back to work - also other patients, like from car accidents - it is a requirement to offer the rehab, but legally it cannot be demanded if the rehab causes harm
On paper, they can't make you go to rehab, but in reality it is not that simple - people who are disabled start on a temporary govt benefit - to get permanent disability benefits, you must check all the boxes from the guidelines - the Work and Pension Dept evaluate the applications
A case worker would submit the permanent disability application, but a different dept would then decide - and if the patient has not completed all the guideline boxes, they are denied benefits - the patient has the right to appeal, but it will take 6 - 12 months and the patient receives no benefits - so very sick people may run out of food, medications, shelter while waiting
It is also hard to gather all the documentation needed during the temporary disability period - Andrea's doctors say she is too ill to attend a rehab center - and that it would probably make her sicker, at least temporarily, but some people get worse permanently - the 3 hours to travel to it is too much for Anrdrea's health - Andrea thinks she would survive rehab, but it would make her sicker
Andrea explains that car travel is so draining for some ME patients: vibrations, sound, visual stimulation, sitting up - Andrea is healtier in the summer, so if she took lots of pain meds and could rest for a week after, then she could do a 2 hour drive - but it will make her very ill with post exertional malaise and her doctor doesn't think rehab will help her
Andrea's dilemma: does she go to rehab and get sicker so she can get a report saying she is too sick to work and get long term disability, or does she not go to rehab and risk not having income for up to a year?
Fortunately Andrea has saved enough money to live on for a year, but others with ME are not so fortunate - so legally, sick patients can't be forced to go to rehab, but that is what they are doing
Andrea says the rehab may be helpful for mild ME patients or newly diagosed as it teaches about pacing (your energy) - mild patients with small children like the chance to go to the rehab to recover from the energy requirements at home - but no one believes rehab will 'treat' ME
Andrea says the dept of Work and Rehab needs info to make decisions, but they don't understand what they are asking
Andrea thinks it is a waste of money to send people to rehab for 4 weeks for evaluation - cheaper to have home visits
There are 6 or 7 rehabs in Norway that accept ME patients, but a lot of them are not recommended by the ME Association - but the system is only set up deal with all patients in one way
To deal with loss from being so ill, Andrea has adopted her Mother's motto: 'it does't help to be angry about it' - she hopes she's not sick forever, and she's adjusting and making the best of it - but also asks herself what does she want to do with her life given the situation
Andrea and her partner have bought a home - Andrea says she still has a future, not the one she planned or wanted, but there is a lot of good stuff in it - very fortunate, born in one of wealthiest and happiest countries with good welfare system - suppotive family except Grandmother who thinks a baby will fix things - great supportive friends
Even if there is no cure or treatment, Andrea's health is pretty stable - her functionality improves in the summer, but still mostly house bound - can leaved the house twice a week instead of once a month - Andrea has not given up hope she will improve - she hopes to have a family but not sure how they'll manage it
Andrea thinks the summer helps because it is sunny and warm and that improves circulation - she is hoping in a couple of years to try living in southern Europe for a few months and see how that affects her health - but all their family and friends are in Norway, so that's a consideration too
Our conversation will impact Andrea's energy and health - even though she rested up for the interview - she will not feel good tomorrow
Andrea thinks people who develop ME as slow onset have more time to get used to being sick than people who suddenly developed ME overnight, that would be harder to deal with
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