I won’t sugar coat it. It’s a living hell. I know, because I have been there. In 2008, I contracted an autoimmune disorder known as Guillain-Barre Syndrome (GBS) although my diagnosis was changed to CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) after my symptoms didn’t seem to get better. “They aren’t getting worse” I remember the doctor saying which, in hindsight, is hilarious considering I was already in ICU, on life support, tubes in all places and unable to move.
In Guillain-Barré syndrome, the body’s immune system attacks part of the peripheral nervous system. The syndrome can affect the nerves that control muscle movement as well as those that transmit pain, temperature and touch sensations. This can result in muscle weakness and loss of sensation in the legs and/or arms. It is a rare condition, and while it is more common in adults and in males, people of all ages can be affected.
I had been walking the day before my ICU admission although I was very tired. I was coughing and when the doctor came to check on me, she told Mum she’d come back and listen to my chest in the morning. Mum stayed with me that afternoon (thank God for mother’s intuition!) and I was lucky she did. Whilst lying with me on the bed trying to get me to rest, she noticed my breathing was very laboured. I should have savoured the moment – it would be months until I would be able to breathe by myself again.
Mum kept a diary of my time in ICU which shows the barrage of tests I had on the first day. Full blood count including blood sedimentation rate, two CT scans, an MRI and a lumbar puncture. The lumbar puncture results showed, the next day, that the protein level in my spinal fluid was raised but the white blood cell count wasn’t. This, in addition to the negative nerve conduction test, proved that I had GBS.
It was strange timing for the staff because GBS is widely considered a rare condition but there was a gentleman in the room next to me who had also been diagnosed. He was a much older man and unfortunately, didn’t survive. GBS has no cure but the myelin sheath does re-grow over time. Full recovery is achieved by 80% of affected people, another 15% will have lasting disabilities that range from mild to severe, and about 5% die from complications.
Being in ICU is a funny thing. You are there because you are so sick and “need to rest” but life is a constant buzz. Machines beep continuously. You are watched like a hawk. When you can’t move, you are repositioned every few hours. You are fed through a tube. All of your meds are given through a tube. You are washed in bed. No more than two visitors at a time. Inside voices don’t exist (I think there is a prerequisite for needing to talk at a certain decibel!) And don’t even get me started on the toileting regimen! At a time when all you want to do is sleep to escape the nightmare, you do anything but.
I was started on intravenous IVIg, a type of immunotherapy that fights the misdirected immune system. I’m still not clear exactly how it works but it’s thought to regulate an overactive immune system by linking itself to a protein in blood directed at the nerve.
I remember one of the nurses saying to me that everything would work out the way I wanted it to. My silent response? “Awesome. I can’t wait to die.” It was true, I couldn’t wait to die. Have you ever imagined your life from a bird’s eye view? For months, I was mentally floating above my life, looking down and seeing the remnants of a person who had lost their soul and will to live. I couldn’t blame that girl I saw. She was surviving, not living. The outside world became irrelevant because it didn’t exist. Aside from my parents tag teaming around the clock and telling me small tidbits of what was happening at home, I didn’t care about what I was missing out on.
It’s strange the things that really stick in your mind. I had a wonderful psychologist visit me and, although the conversation was extremely one sided, I liked her visiting because she had the time to sit with me and it broke up the day. She said once, “part of moving forward is knowing where you are heading.” How could I move forward when my path to living a normal life was being disrupted by machines beeping, chronic pain and bed baths? Even the slightest tap or push on my skin set my whole body on fire and I couldn’t let anyone know.
Weeks went by and nothing changed. I wasn’t dying but I wasn’t getting out anytime soon either. Keeping my mind busy felt like I was walking (no pun intended) a tightrope. Life was overflowing but confined to four walls. If I let my mind wander, I would become overwhelmed with dread and fear but unable to do anything about it. Even thinking about it makes me a bit anxious.
Mindset was the first step in my recovery and I realised that the relationship I had with myself was essential to getting the hell out of there! Instead of focusing on everything I didn’t like about my life, I started to think about those that I did. I took the time to really appreciate why I was still alive. How I was talking to myself was directly influencing my happiness. My head had been full of negative self-statements and I began to add “yet” to the end of every negative statement which ran through my head. “I can’t walk…yet”, “I can’t breathe for myself…yet”.I surrounded myself with people who viewed me positively and refused to be treated by a doctor who said I might never walk again.
It took weeks before I had a breakthrough. My breathing had been good overnight and I was being taken off the ventilator. I went from wanting to be off the ventilator to being so scared that it wouldn’t work and I’d die (the irony right there is that I clearly didn’t want to die). From there, the breakthroughs continued. From ICU I was transferred to the ward. I was breathing for myself but they left my tracheotomy in situ just to be sure. I couldn’t move to the rehabilitation hospital until I was able to weight bear, transfer into a wheelchair and no longer be tube fed.
Although it should have been something to celebrate, moving to rehab was one of the hardest things to do. I missed the “safety” of being in hospital and the 1:1 care I had received for months. I remember so clearly being there on day one and being so angry that I used every ounce of strength to throw my walking frame at Mum. I’ve never been good with change! My aim was to be the most difficult patient there was so they’d send me home which didn’t work. The whole place was overwhelming because of the varied level of support services provided. I was on the spinal unit and it wasn’t long before my attitude changed; I was the lucky one because I would get better. It gave me focus and the motivation I needed to really throw myself into getting my life back.
Rehabilitation became my full-time job, seven days a week. Physiotherapy in the morning and occupational therapy in the afternoon. I was in more pain than I had had in weeks and struggled with the mental challenge of re-learning how to do these things again. I will always remember when one of the physios placed my feet on top of hers and together we walked down the hallway one step at a time so I could get accustomed to the movement again. The first time I went to stand, there were four physiotherapists supporting me making sure I wouldn’t fall to the floor. I used cutlery, toothbrush and pens with larger handles so my grip didn’t require precise movement. I had foot braces to prevent foot drop. I had daily gym sessions to work on strengthening my muscles using resistance bands, wrist and ankle weights. I even worked out that I could cheat in OT if I was too tired by moving my head not my arm when I was brushing my teeth or my hair.
Every single person would go out of their way to help me recover. Seeing people care about me, made me try a little more. The re-learning process was tough but having the right help was vital.
Apart from a minor mishap when I fell between the wheelchair and toilet and broke my arm, I tried to make the most of every moment. I made mistakes, I had days when I was exhausted but knew that for every day I stayed in bed, the rehabilitation would take longer because you decondition that quickly. I had self-pity parties and yelled on more than one occasion. I also celebrated so many firsts. Taking my first step, writing my name, washing my hair, using a knife and fork, making a cup of tea and learning to get in an out of a car.
I made a full recovery (apart from not being able to jump but I’m okay with that!) Struggle caused me to want to give up but helpful struggle gave me a purpose. What’s surprising is that looking back, I see the challenges I thought were insurmountable were more easily achieved than I thought they would be. Getting out of ICU was the easy part. Learning to walk again was really tough but I will say this, sometimes we surprise ourselves in what we are able to achieve.