A while ago I saw a petition on the website of HandicapNL calling for rehabilitation programs to be expanded with the transition from rehabilitation center to life at home. A justified demand, because that transition is very big. Too big. So I wholeheartedly support this petition! But it also made me jealous, because when I got sick, the reaction was: “You have to learn to live with it”. And I was outside again.

When I got sick and my GP couldn't find anything in my blood, my problem had to be inside my head. But the psychological screening test also showed nothing special and then my GP didn't know what to do anymore. With some insistence I got a referral to an ME specialist. I shouldn't expect too much from that, because “it is a diagnosis of exclusion”. Many doctors think so. Wrongly.

World collapsed

After an extensive history and various tests, the conclusion of the ME specialist was: “This is a classic example of CFS/ME*.” I was told that about 10 medications may relieve some symptoms in some patients. That is a matter of trial and error, because no one can predict what will work and what will not. More is not possible. ME/CFS is a lifelong condition that greatly impacts the quality of your life. With a final “you have to learn to live with it” I stood outside. In tears, because my world had just collapsed.

I had to figure out EVERYTHING, really EVERYTHING, myself!

Jealous

This experience is the reason why I am jealous of people with, for example, a stroke or spinal cord injury, because they receive months of rehabilitation. They naturally receive advice on aids. They receive support in discovering what they can and cannot do anymore. They receive tips on how to do things differently or more efficiently. They receive help with the initial processing of their completely changed lives. Again, they too don't get enough help, but at least they get support!

My “rehabilitation” consisted of the statement “You have to learn to live with it”. I had to figure out EVERYTHING, really EVERYTHING, myself!

Top sport

First I arranged domestic help, a (social) benefit assistance and Special Assistance (because of my expensive diet). When that was done, the indication for domestic help was already expiring, so I had to arrange the extension first. All this took 15 months.

That was 15 months of pure top sport, because everything was equally urgent. But because I was seriously ill, I could only pick up one thing at a time. After this I first had to recover for half a year before I could continue, because I was completely exhausted.

At the rehabilitation center they assume that I am ill because of wrong thoughts

To swim or to drown

In the meantime, I was forced to figure out how to rearrange my life. Through trial and error I have found out by doing and learning what works for me and what doesn't. Sometimes I get complimented for that, but it wasn't heroic at all. It was simply “swimming or drowning”. I managed to keep myself above water with a lot of tricks, but many of my fellow sufferers don't make it.

Treatments

Then I started looking for treatments that could help me. Via-via I heard that physiotherapy could help fight chronic pain. The physiotherapist specialising in fibromyalgia said that maintaining your fitness level works well against chronic pain. But fitness training turned out to be impossible for me, because my heart rate has to stay below 114 beats per minute. So we stopped.

Rehabilitation center

I thought it was absurd that I had to figure out everything myself and came up with the bright idea of ​​knocking on the door of a rehabilitation center. Coincidentally, there was one in my hometown. I was made very welcome, but on further questioning it turned out that they regard “CFS” as a psychosomatic disorder. That means that they assume that I am ill because of wrong thoughts and thus have become out of shape. All this in spite of the vast amount of scientific evidence that ME is a complex multi-system disease. I thanked.

Fortunately, an independent occupational therapist was able to help me. I received useful tips on how I could make my home, and especially my kitchen and wardrobe, more efficient. My energy level is so low that every bit of savings is valuable.

What is needed, are rehabilitation programs for all those people with conditions for which there is currently no offer.

Aids

After more than two years I appeared to have deteriorated. That's why I wanted to explore the possibilities of aids. A number of things are not reimbursed, such as a shower stool and a saddle stool in the kitchen, so I bought these myself. But I also wanted a wheelchair, so I had to turn to the Social Support Law (SSL) again. I wrote my own personal plan to be able to describe exactly what I needed. Coincidentally, at that time I was undergoing multidisciplinary treatment (which, by the way, seriously deteriorated me) and the occupational therapist was willing to support my application. Neither the occupational therapist nor the SSL gave me any advice. Internet and TNS Revalidation Service were my mainstays.

Administrative support

My financial administration continued to be difficult. In good times I barely managed it all. In bad periods, the pile of mail kept growing to unhealthy heights. I wanted help with this, so I turned to the SSL for the third time. This time in vain. I tried my best for two years to get administrative support, but I couldn't get it. Because you can't see from me that I'm seriously ill and I can explain well what I need, people overestimate me. So my administration remains problematic, with all the consequences that entails.

Lonely

I look back on a very lonely and long journey full of unnecessary bumps and potholes. If I had received good support, the most important things could have been arranged within six months. That would have saved months of wasted energy and unnecessary waiting, frustration and despair. It also saved me a lot of stress and – not unimportantly – a lot of money. In fact, it probably could have prevented further deterioration of my health!

Wish

If people like me were given a suitable rehabilitation program, it would make a big difference. For those people themselves, but also for society. Because if you would support people well, you would give them a chance to get better. In any case, you prevent people from deteriorating further.

I – and many with me – have to draw on reserves they hardly have anyway. Reserves that we desperately need for daily life and for the emotional processing of what has happened to us.

What is needed are rehabilitation programs for all those people with disabilities for which there is currently no offer. For all people, who now have to reinvent the wheel for themselves, because they have no other choice.

The sad thing is that the knowledge is all around and for the taking. But it is precisely the services that are supposed to help us that – strangely enough – do not have this knowledge. Apparently that is their disability: they don't know how to see beyond their noses. And until that changes, unfortunately people like me are on their own…

* What is ME?

Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS), is a complex multi-system disease that often results in significant disability. Many people with ME are largely housebound or even bedridden.

People with ME are more functionally impaired than people with depression, MS or end-stage renal disease (Komaroff, 1996). They have a lower quality of life than people with cancer, rheumatism or diabetes (Hvidberg, 2015).

The most common symptoms are:
• exhausted fatigued and very slow recovery after exercise.
• disturbed sleep, waking up not rested.
• concentration and memory problems (“brain fog”).
• dizziness or weakness when standing or sitting.
• hypersensitive to stimuli: light, sound, smell, food.
• (very) susceptible to infections.
• chronic pain in muscles and/or joints.

ME was already recognised as a neurological disorder by the World Health Organization in 1969 (!). In the Netherlands, the “CFS Guideline” from 2013 is still leading, despite the advice of the Health Council from 2018. This guideline only recommends (often harmful for ME patients) psychosomatic treatment.

This column was published on September 9, 2021 on WijRollen.nl.