Senja Norha: “I can exercise and be active again”

Senja Norha is a retired police officer and a service dog user. Senja has suffered from back and mobility problems all her life. With an undefined EDS diagnosis and a degenerative spine disorder, Senja has become acquainted with Lymed pressure garments since 2013. Senja uses Lymed Sense long-sleeved shirt, long-legged pants and a sleeve glove.

438316961_43974“My life with pain has begun when I was around ten years old. I remember experiencing constant problems in my back area. I exercised a lot and did all kinds of sports, but at age 14 I had to cut off my first sport because of pain, gymnastics. All my teenage years and adult life I have tried to keep myself moving as much as possible; I did freestyle, downhill skiing, water skiing and trampoline gymnastics.

Pain was present all the time. Despite of it, I graduated into a profession. I got through the fitness tests and I became a police officer. I noticed that I was on sick leave a lot because of my back: I got a bag of basic painkillers and they said to me “back problems are what they are.” I often had to go to the emergency room to get injections to ease my pain. Soon I found myself working reduced-time. I took this as a possibility to finally rehabilitate myself fully for working life.

In 2006, everything stopped for me. I was in great physical shape because of my part-time working schedule, but suddenly I could not get out of the bed anymore. I went to see the doctor and received very little – even if any – help. I was extremely frustrated: I even asked for a mental health assessment from my doctor. I was convinced that since no one found a physical reason for my pain, it must be psychological.

They did not send me to evaluation, but they finally sent me to a physiatrist who found serious degeneration in my back and ossification of vertebrae. I was diagnosed with degenerative spine disorder and hypermobility. I always thought that the hypermobility was normal, and everyone has it. Professionals questioned whether I could even rehabilitate myself back to work. I wanted to work, so I committed to it fully.

My health, however, deteriorated: I could not hold my grip, I had difficulties lifting and carrying. I got frustrated easily. I realized that in the future I will probably need a service dog to support my daily living. I had just acquired Aino, a golden retriever, as a non-working dog. With the encouragement of my doctors, I started to train Aino to be a service dog for myself. Years later, I was with Aino at a service dog event and I was randomly asked when I received my diagnosis of EDS. I was blown away and asked them to explain it to me in detail. What on earth was this?

I started to read more about it, and even though I did not have a confirmed EDS diagnosis, my symptoms matched – apart from the genetic inheritance. This was the start of my occupational therapy and physiotherapy, and we tried to figure out what kind of aids I could use to help my daily living. Later that year, my father called me complaining about the same types of hypermobility symptoms as I already had been diagnosed with. Maybe this is genetically inherited after all..? Nonetheless, I had been using pain clinic services for many years now and I did not have any suitable painkillers to use. The next step in pain management would have been opioids, but I did not want to use them because of my profession. In addition to this, my body could not take the pain medication any longer.

I was attending Assistive Technology Fair in 2013 when I became acquainted with pressure garments. I started asking around how I could get my hands on them. I immediately realized that external pressure could help me survive every day, especially with my problematic hypermobility. I already used aids and assistive technologies where ever I could.

That same year I got my first pressure garments. I was amazed – I felt one with myself, and I did not need to waste energy to “control my body”, so to say. It felt like Christmas! My garments were custom-made to fit my body’s dimensions and my muscles – standard sized products did not fit me. It took some time to get used to the products, but soon I noticed that I was able to do things I had already discarded as impossible for me to do. I was able to go for a walk! During the night the garments recovered me from my daily activities, prevented dislocations and luxations and during the day I felt almost painless. I was active! Finally, because I wore the garments all the time, I was granted another set of them. This made washing and wearing easier. My garments helped me more than e.g. resting splints, with which I could not sleep well.

At this stage I was already put on time-limited retirement, wanting to return to my profession I loved. I was hopeful, because my rehabilitation seemed to be successful. Unfortunately, the degeneration progressed and got worse, so this was no longer possible for me. I was deemed disabled, unable to return to work, in 2015.

It has been a long and difficult journey of many years; I’ve fought many fights over my rights to feel better and get well. With the use of pressure garments, my ability to function has improved considerably and my balance is so much stronger nowadays. I use pressure garments to manage my everyday life.

I struggle each year to get reimbursement for my pressure garments. Care paths are complicated and situations change constantly. However, one thing is certain: I need my pressure garments for my daily living and to be a functional, active person.”

 

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