June 9, 2021 | By Elly Knaggs
Message from the International Autoimmune Encephalitis Society Team:
The staff at IAES is proud to present Part II in the blog series by AE Warrior Elly Knaggs. Following Part I of her AE blog series this past February, Elly decided to submit a press release about her struggle and to help raise AE awareness! Please find links below to this press release and Part I in her amazing and inspiring story!
Doctor’s thought a Queensland mum was having a pandemic breakdown. They were wrong:
IAES Blog Part 1:
https://autoimmune-encephalitis.org/magical-demon-of-a-brain/
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INTRODUCTION
It’s been about five months since my last blog entry. Medical progress has been slow. But….positive progress on many fronts has been made! I submitted a press release regarding AE and my first blog and the story has received national press coverage here in Australia! I’ve been stable on my current medications and I refuse to back off or wean off the meds for fear of returning symptoms.
WHAT LIFE IS LIKE FOR ME
It’s funny how quickly life can change with a disease of the brain such as AE. One minute you think you are working and recovering and the next minute you seem to be falling down the rabbit hole again.
Let me back-track and begin where were left off:
Since my last blog (Part I) I had been granted the opportunity to work two days a week as a hairdresser. The challenges I faced during those first few weeks were hell. I had lost the ability to mix hair colour, understand hair colour formulas, read hair colour cards and perform colour corrections. Each afternoon I would have seizures, brain fog, mental exhaustion, physical exhaustion and mental breakdowns from how exhausted I was. I wanted to give up. I felt immense stress about something I had been so talented at. This really tore me down. However, each week I managed to regain the skills I had lost. The afternoons were becoming easier on my body and mind. After six weeks, I was able to manage three staff members and function as I once did as a hairdresser. But was I really? In my world I was managing. I was gliding through life and feeling so confident. I even took up volunteering one day a week at a nursing home. If you remember, I am a nurse and the goal has always been to get back to nursing. However, to the outside world and to many people, my improvements were not how I perceived them to be. Sadly, I was not improving at all. In fact, in many respects, I was no better then when I began my AE journey. That is what I think is most sad about Autoimmune Encephailitis; your brain no longer works as it once did and self perception sometimes changes dramatically. I was told I was being irrational in the salon. My memory was dreadfull and I had a huge fit at work. Sadly, the lady who owned the salon had to let me go. This was a huge shock and I was devastated. It took me several days to realize she was right with her decision. I am still too early in my treatment and recovery to even think of taking on such tasks like working in the environment I was in. I still have much time ahead of me to allow further healing. To be honest, it was the reality check I needed. I need to give my brain time to rest and to heal. Time and patience are my friends and that is what this disease takes!
I was diagnosed with frontal lobe brain damage due to AE. The symptoms and issues I was having and still do have may explain why I could not see what was happening in the work place.
Being diagnosed with frontal lobe brain damage knocked me back mentally. I felt that my world was crashing down. And I felt if only the medical profession had believed me for the four months they left me with an inflamed brain, would I have brain damage? But I know I cannot dwell on what was and what was not. I can move forward in a positive way and try and use my brain and increase my daily activities! “use it or lose it” as the saying goes!!
On another positive note, the neuropsychiatrist assured me that with the right medications, frontal lobe damage can be helped. Of course, brain damage will always be brain damage but the brain is amazing and can create new pathways with the right therapy and medications. This process may take months or years. I, also, know that during this time and process I’ll need to manage the body changes and side effects different therapies and medications may cause or induce.
At times, I feel the medical system, both with their help and lack of help has played a big part in this. I am now at a point where I feel my conversations with friends and family are consumed by medical terminology. I can no longer hold normal conversations. At times, I no longer want to leave the house. I no longer want to keep friendships as I feel I am burdening people. I guess that’s what happens when you dive down the rabbit hole of a chronic illness and the mental aspects that can follow. I have now found a new respect for others suffering the same challenges. While I sometimes dwell in my sorrow, I do see a positive bright light sometimes. Yet at other times it is hard to see the light through the storm. I am looking towards new beginnings. I am thinking of buying a push bike and hopefully finding new friends to enjoy fresh air and exercise with.
NEW SPECIALIST
I have a new specialist on the list of doctors I see. I have welcomed aneuropsychiatrist to my team.At one time I rolled my eyes at and refused to think about neuropsychiatry. After all I had spent 11 months refusing mental health referrals. Little did I know neuropsychiatrists help deal with the psychiatric and physical conditions relating to brain illness’ such as AE, encephalitis, Parkinson’s, MS, trauma, strokes and movement disorders. This specialty works well within the grey areas of neurology and psychiatry and helps to ‘marry’ the two for the benefit of the patients.
The neuropsychologist helps me work with and through my limitations and issues I have due to the frontal lobe damage. Frontal lobe damage is where the executive functioning happens in the brain. I am told this area of the brain helps to control, emotions, sleep patterns, involuntary movement and my ability or inability to organize my thoughts and life. For example, sometimes I have the emotional stability of a 16 year old that is being unreasonable. At times I loose my ability to judge a situation or I can act irrationally. I can become aggressive and/or agitated. This can happen when I am tired, over stimulated, am in an unfamiliar place or I have to process alot of information such as at a doctor’s visit. At times my body jerks due to the frontal lobe damage. This can happen during the day or night. And my sleep patterns can vary to wanting to sleep all the time or not at all.
This doctor helps via therapy and medications. Of course the meds come with side effects and they may work for some and may not for others. Anti seizure medication is what has been helpful for me.
WHAT’S NEXT AND THE NEVER ENDING SEARCH FOR ANSWERS
At times I wonder. How did we get here? Nobody knows. What is wrong with me? Nobody knows. If we cannot find how we got here? How can you fix me? I feel the medications I am on are simply masking something more sinister. I have spent incredible amounts of money, time and energy on my health and trying to get better. Maybe I should be focusing and trying to accept where I am, how far I have come and positive ways to get better mentally and physically. Let me ask you, if you were me what would you do? Would you accept this or forever search? I feel as though I never want to give up and I will always search for answers to help figure out AE!
The doctors are baffled as to why I cannot wean off the medication without all the neurological symptoms returning. I have asked all these questions many times. The bottom line is awareness and research needs to happen to be able to more fully answer the questions for me and for all with AE. We simply need to move forward and help to find the answers as to why the body is attacking the brain.
THE FUTURE
As for my dream to become a nurse, I feel at times it is slowly slipping from my fingertips. Right now, I cannot work in a high functioning job such as nursing due to the damage my brain has incurred. So, I will put all things into perspective. Nursing is not my top priority yet. Getting well is. And in time I hope to pursue nursing and hope never to give up on that dream!
To be continued……………….
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