After a really good five months I've been admitted to hospital because of a pain flare. I thought I would explain what's happening with me at the moment and address some thoughts that have been circling around in my head.
First off, my nerve pain has gotten so much better over the past eight months and I, one hundred percent, credit that to my rehabilitation clinic. I'm constantly pushing my limits there but in ways that don't create terrible pain and that's exactly what my body has needed for so long. Of course, I have had bad days but they haven't turned into flares for the past five months and that still amazes me. Early last year I was in a bad condition and was starting to almost give up on the idea of recovery, I truly believed that maybe my body and mind just wouldn't ever recuperate fully. I was told that my body wasn't responding the way the doctors had expected it to and that they didn't really know what else to offer me, so we kept doing a program of intense exercise and strengthening work which would send me into a flare, only to do it all again the next week. Since changing clinics and doctors I have experienced a new way of managing pain. If something didn't work, we would change it, this sounds like the logical solution but in the past it just didn't really happen so I was exited to see what the outcome was. I have been told over and over by doctors that they think I could have a 'normal life' if we find the right treatment. As a patient I don't believe something until I see it now, I have learnt to keep my expectations low, so when I saw this new type of treatment working I was ecstatic. Since then I have made great gains. My walking has improved dramatically, my pain is much lower, barely any dizzy spells or other symptoms that used to bother me on a daily basis.
Recently I have been increasing the amount of walking I do (I'm up to around 50 meters of good walking) and my school attendance is slowly increasing. My medications seem to be doing the job and with new techniques to use, I am coping very well.
On Friday the first of July my knees started to ache and when walking up the stairs I noticed my back, hips and shoulders were also becoming increasingly achey. Later that night my muscles became sore and started to cramp up. I could feel that my body was inflamed. This went on for a few days and on Sunday night the nerve pain, tremors, headache, cramps, aches and pains that I had became scary and agonising. My whole body was continually twitching, shaking and cramping and the pain was horrible. I managed to walk out to my parents bedroom even though I was extremely dizzy and my tremors were hard to control as I walked. I got to sleep in the early hours of the morning but only because of pure exhaustion. My anxiety had skyrocketed as well which made me very tired. When I woke up on Monday morning Mum reminded me that we had planned to go away to the beach as my Aunt and Uncle had recently bought a new house down there. Remembering how horrible I felt the night before, going on a holiday was the last thing I wanted to do. However I went anyway because I wasn't allowed to stay home and I did believe that some relax time would help. The following week was good and my body slowly gained more and more strength back and my pain decreased each day. I would use my crutch to help me walk and a lot of my time was spent sitting down or lying, which is exactly what I needed in order to rest.
We arrived home on Wednesday the sixth of July and I went to rehab on Thursday as usual, I told them about the flare and everyone agreed and told me that I should have gone to hospital on the previous Sunday or even a couple of days before that when I first noticed the symptoms. I knew that they would say that but I felt so guilty asking to be taken to the hospital the day before a holiday. In retrospect, I should have pushed and done what was right for my body, I shouldn't have suffered like I did, but I learnt from that and will know for next time. My physiotherapy and psychology sessions went well that day and I went home feeling really good and in minimal pain.
On Saturday I took my puppy to the dog park, watched her run around and it was great. I was feeling a slight amount of pain but nothing bad. That night my pain and other symptoms got bad again and I told dad that we needed to call my pain doctor and that I needed to go to the hospital in the morning. Sunday the tenth my doctor returned our call and told me to come in. When I got to the hospital we filled out the paperwork and I was put on my regular dose of Ketamine.
For the first twenty-four hours I was dizzy and my head felt fuzzy. After that day I felt much more awake and alert. The Ketamine has different effects on each patient but normally I stay fuzzy for a good three days. Last time I was in the hospital on Ketamine, I had a panic attack, so being able to think clearly and be less anxious is great. My doctors are telling me over and over that I need to come in much earlier into the flares. My pain doctor especially wants me to wait a maximum of forty-eight hours. However, knowing the difference between just a bad pain day and when its a flare up is still quite hard for me to figure out. All of the doctors are telling me that I need to learn how to tell the difference but it's so difficult and the lines are blurry. It feels as if I'm completely responsible for making the pain worse by not going to the hospital earlier but I see that it will take time for me to be able to tell the difference. In my mind I don't want to be overdramatic about a little bit of pain however there is a very fine line between just a bad day and a bad day that turns into a flare. My doctor has told me not to feel like I'm being overdramatic though because we know that if my pain persists for two days or more it is a flare and there is nothing that I can do to stop a flare up other than medical intervention. My nervous system will feed off the pain and create more if I don't go to the hospital. We have been discussing triggers of the flare ups and even trying to educate my parents on how to see the symptoms before I can even feel them. If I get extremely moody, angry, anxious, etc, it could be a sign of a flare up.
But how do we separate what are flare symptoms and whats part of being a teenage girl?
Within one day on the Ketamine my pain had reduced exceptionally and all of my tremors and other symptoms were gone. Since then the past few days have consisted of nurses, needles, doctors, lots of bed rest, Greys Anatomy and a lot of music to calm me down after doctors come and talk about my plan for the next few months. It's extremely overwhelming to think about going into year ten next year at school, trying to apply for special consideration and to sort out which classes I will be able to cope with. This was meant to all be over by the time I was starting high school and now its looking more like my goal will be for this to be managed by the time I get to University. Frustrating and saddening to say the least but I have to deal with it and take any little bit of progress I get. Last year I was told that if I didn't start improving and seeing progression with my pain and walking that we would look at hip replacements, so to be able to delay that for a bit longer is great.
On Saturday, the sixteenth of July, I will get to go home. We are reducing the Ketamine by 1ml every 12 hours and then I will be taken off of it. For this flare we have used a subcutaneous line. The line goes under the skin in my belly and is pretty much just under the surface. The Ketamine is then absorbed through the tissue. It takes longer than an IV line to bring down the pain because it's going into the tissue rather than directly into the vein, however by using a sub-cut line in the long term it helps to preserve my veins. It does hurt a little bit once the fluid builds up because I get and rash and feel quite uncomfortable but its nothing too bad. For now, me and Mum are putting together a timeline for my doctors to try and figure out if there are any patterns or triggers for my flares. I'm exited to go home and even though I missed the first week of school I'm glad that we came into the hospital because the pain would have just continued and would likely have gotten much worse.
Thank you for reading this very long update,