So one minute everything is fine and your at uni and life is going good and the next minute you find yourself in hospital, having a major operation and then next you wake up not to feel your legs. It sounds crazy I know. Almost unbelievable. Well I wish I could say it was. But I am currently having to learn to walk again. I didn’t want to blog this for attention or to be noticed or whatever but when something so scary and frustrating happens you might as well write it down and you never know someone else may be able to relate to my story too.
1. The Beginning
I was admitted to hospital on a Sunday evening with severe throat pain, not being able to drink, eat and also looking like a swollen ogre (yes despite my moon face), my jaw had completely locked which made the following process pretty much impossible. A (not so lovely doctor – one who is newly qualified and thinks they know everything) tried to shove a 3 inch needle in my tonsil to drain it but instead managed to tear it, so left me spitting up blood and in more pain. Two more attempts – no success. It was decided I needed IV antibiotics and a drip for dehydration so the nightmare began. Little did I realise what was heading my way.
2. A hell of a night
After a night on IV antibiotics, being pumped with steroids and fluids and so much morphine I had hallucinated I was a fish (literally) no improvements had been made. I laid in bed praying that my body would just kick start and get better. I just wanted my mum and dad but being in Nottingham I was alone except of course those friends who stood by me everyday (who I literally cannot thank enough).
3. The third day
So after being on a drip for 4 days, antibiotics and steroids galore I was still making no improvement. No food, no drink my body was on shutdown but still they didn’t know what was happening. A doctor (another useless one) turned round and said that he believed that it was just an infection caused by stress and I had muscle spasm in my jaw (yeah I know – that’s what I was thinking – he even gave me some muscle gel – idiot). However, it wasn’t until this doctor (my hero) said that he wasn’t impressed with my progress and wanted to send me for a CT scan of my throat, jaw and head so we waited for the scan.
4. The CT Scan
A CT scan is the weirdest thing ever, basically you lie on this long table and you move into this doughnut ring, your attached through IV to this drip that puts some liquid into your blood and then your told you may feel like your wetting yourself but your not. After the ring moves up and down and your told to breathe, hold your breathe etc. Then after about 2 minutes it’s all done and you can leave (well in my case back to the ward) and the results are awaited. It’s like one big long waiting game.
5. The results
So after what was described by a previous doctor as tonsillitis and jaw spasm turned out to be a lot worse. It turned out I had quinsy, a complication of tonsillitis, for every 100,000 people with a sore throat, 96 may develop quinsy.However mine was slightly more serious, the quinsy had inverted meaning it was growing on the inside of my tonsil into my jaw and to make matters worse it was sat right on the main artery in my neck. So the prognosis had been made now for the plan of action. The only option was an operation. They wanted to remove the abscess and the infected tonsil all whilst being careful of the artery. It wasn’t going to be a straight forward operation. Everyone was on tender hooks. I was petrified.
6. The operation
So at 7 O’clock the next morning I was told I was nil by mouth and the operation would be at some point during the early afternoon. So I waited. And waited. At 4 O’ clock a man turned up with a wheelchair and said we are ready for you in theatre now. So off I was whisked. But no it didn’t quite stop there. I was put onto a trolley bed and given blankets and told that someone would be with me shortly. So I waited. Time kept ticking, no one came. All of a sudden I felt really strange. A nurse came over and checked my observations and before I knew it I found myself in being wheeled off to recovery (before the operation had even happened) to be wired up to a sats machine and a drip. My blood pressure had dropped and my pulse had gone through the roof. I just remember laying there hearing noises and movement around me but nothing else. Finally, at around 8.30pm (or so I’ve been told) I was taken to theatre. Ready for the next hurdle. Obviously when you go for surgery your put to sleep so you don’t remember anything but my time in theatre didn’t go straight forward. Because of where the lump was doctors wanted to put a tube down my nose and into my windpipe to breathe for me. They tried to put the tube down my nose but couldn’t as the bridge was too small. So instead i was given muscle relaxant to try and prize my jaw open to get the tube into my windpipe. I remember the tube going into my mouth. I then fell asleep.
7. Recovery
Waking up from an operation is so weird. All I remember is opening my eyes seeing a blonde woman dressed in green overalls sat next to my bed and saying “where am I?”. After that I was so drugged up on Morphine I was out like a light. So after a 2 hour operation (that should usually take 30 mins) and 4 hours in recovery after me not wanting to come round, I was taken back to the ward. The operation had gone well. Thank God. Are things going to start looking up?
8. The day I lost my legs
So when you think the worst is over (or pray it is anyway) something else just has to go wrong. The day before my operation my legs had gone slightly weak (everyone called me Bambi as when I walked it looked like my legs were giving way a bit) this could be expected as I had been in bed for a few days but what wasn’t normal was what happened next. The day after my operation my legs had become so weak I couldn’t walk, to touch them felt strange, I called a nurse to help me walk to the toilet and as I went to stand up my legs just gave way and I was on the floor. Fear. I couldn’t walk. I sat and cried. My body felt like it was lifeless and it just wouldn’t get up. After about 10 minutes and the help of the nurses I managed to get enough strength to get back on to the bed. What was happening. I was so scared. Thoughts were running through my mind: what if I never walk again. What if I’m paralysed. That day I saw several neurologists who kept performing tests to see if I had any neurological problems. It all came back clear. No answers. I have never been so scared in all my life.
9. Going home
So after 5 more days in hospital although my legs had got worse and now walking was impossible my throat had got better and doctors decided that I would actually be better off at home. I was so happy. 9 days in hospital had been enough. However it still didn’t explain why I couldn’t walk. I had seen 5 neurologists who all had performed neurological tests and they had found no evidence of any serious problems. After talking to doctors I decided that going home may be the best thing to start using my legs and hoping they would start working. It still left the main unanswered question – why I had lost the use of my legs in the first place.
10. It gets worse..
Well getting home seems the best thing ever when you have been in hospital. Dad carried me through the front door and it was literally like a sigh of relief. I was so weak and frail. I was like a 90 year old woman. The best way I can describe it is I felt like my body was eating itself. So on waking up the next morning, bang (if it’s even possible) my legs had got worse. Walking was so painful, my knees cracked and the joints in my hands were throbbing. It had got to the stage where I couldn’t sit up without support, hold a glass without shaking and walking was physically impossible. Something still wasn’t right. What if it gets worse? What if I’m paralysed? These irrational thoughts kept running through my mind! I was worried. I was scared. Who wouldn’t be? Deep down I kept thinking, what if they re-admit me. I had to be brave.
11. The doctor brings results
So with being too weak to walk and no progress being made, instead things getting worse, a rash appearing all over my body and face, and having muscle spasms (what can only be described as involuntary fitting of all your body muscles – it looks as if your having an epileptic fit – scary and painful as hell) mum phones for a doctor. The doctor came and performed some tests, she looked at my rash and I explained about my muscles how they had literally wasted away (which was visible to see) and she said: “This is steroids”. I was like what?. She explained how because I had been on such a high dose of steroids, these were all side affects. The condition is called’acute corticosteroid induced myopathy’, which causes the weakness and wasting of muscles. Its an extremely rare condition, which doctors in this country have no clue about. I had my answer. Its frustrating to think that it is all drug induced and that if i hadn’t been given the steroids I would be able to walk but you have to think of the fact that I was given the steroids to stop my airway closing up because of the swelling, so without them I could have died. So you can’t look at it like that. What has happened has happened. But we have an answer.
I know something I have to face is the fact time is only going to heal it. I have to remember that I am lucky, I will walk again and there’s so many people out there who are less fortunate than me. But it’s going to take time and that is one thing that I have to face. For now I’m completely dependent on my family and friends and without them I don’t know where I’d be. My mum (or should I say full time carer), dad, brother, his girl friend, grand parents and friends are my rocks, They are amazing and I don’t think words can say how much I appreciate and love them. Without them I don’t know where id be. They keep me smiling and prevent the tears from falling. So for the time being I’m learning to walk again, and everyday is a few more steps my goal is in 5 weeks ill be skiing down a mountain! CRAZY but determination is key. Unfortunately my wheelchair is my best friend at the moment and does accompany me on outings as distance is not possible just yet. But hopefully not for long. As everyday I’m getting a little stronger.
This whole experience (although far from the end) has changed me. It is said that everything happens for a reason, but I have to say I haven’t quite found my reason yet. It makes you appreciate life though, so many people take the small things in life for granted. Don’t. It could be taken from you at any point. I’m lucky I can get mine back. Love those around you and appreciate those in your life as they are the ones that stand by you.