Thursday 25^th October.

You know when you have a true friend........Yesterday afternoon I was on bed for my afternoon rest usually round the 3-4pm because I am fatigued and the pain in my lower body becomes worse. My front door opens my friend Wajan enters drops her stuff and comes and plonks on my bed beside me for a chat. For the last few blogs people say I was making you teary today I want to make you laugh because part of being sick and fighting an illness like this is to keep your spirits up and as they say laughter is the best medicine. I do admit that at times it is hard to laugh to even muster a smile and over the last 6 months I have found it hard to laugh, it doesn't come natural like it used to I need to make myself, but the after effects are well worth it. People always tell me they love how I always have a smile on my face. I have learnt recently there is no point in sulking although sometimes I do that at home, that is where my release happens not in public. So back in March on the 14^th when I collapsed on the Wednesday my friend Wajan had offered to take me to Melbourne to see my relatives for my 40^th Birthday and we were due to leave on the Friday the 16^th. We never got to go. See I hate flying to the point I hyperventilate almost. We joked about the lengths I would go to, to get out of flying. I even considered going and getting some valium. Well when I ended up in hospital the jokes began about the lengths I had gone to, to get out of it. The nurses often told me they couldn't believe I was still laughing considering my diagnosis. One day whilst lying in my bed approximately 3 days after being admitted to hospital I got an email from Wajan telling me she was going shopping and had attached a copy of a few items and if I needed anything she could get them. I opened the email and was lying in my bed laughing (not realising) loudly. A couple of nurses came over to see what was so funny and I showed them the Aldi catalogue she had sent with pictures of wheel chairs, toilet chairs, pickup hand , attachments and many disability aides. They way it was done is the humour we share but people are often thinking we are quite horrible and mean to each other. The nurses didn't quite know what to say and quickly left my bedside but I was glad she was still treating me with same sense of humour we used. It was a couple of days later I got a picture message from her of another mate in a drivable chair you know those ones you see old and disabled people driving round in with the little flag on the back. They sent it and told me to make my way (at this point I couldn't even roll over in bed unaided) downstairs to the hospital entrance at midnight and they were driving it from Mullumbimby (1.5hrs drive) to escape me from the hospital and do a few hours round Cavil Avenue ( a nightclub strip on the Gold Coast) and they would have me back before morning so the nurses didn't realise I was gone. I laughed til tears rolled down my cheeks. See I was facing the fact I may need that device but the humour did not offend me it kept me feeling normal. Through all the horrible moments in hospital on ward 8C, I had some very funny moments with nurses and the other patients who actually got upset with ward 8A (jokingly) when they stole me to their ward when I was undergoing my plasma exchange. A few weeks ago Wajan and I finally got to go on the trip to Melbourne we had delayed since I got sick. Well the jokes began again about flying but you see this time I had the valium hahaha for my muscle spasms and I would be fine to fly. I tell you getting through Melbourne airport with 4 bags me in a wheel chair and Wajan trying to push me with all the bags was hilarious. We banged into walls, got caught in the lift door and had many people looking at us as we cacked up at our dramas through the airport. We had a lovely time and she took care of me like I was a child of her own, except I was 40. Friday week ago I had to go and get injections in my hands, she offered to take me as my hands would go numb and I was not able to drive afterwards. Whilst getting the injections the doctor told me I was highly evolved, I glanced at Wajan and I could see the jealousy in her eyes (insert cheeky smile here). I was missing some thing in my wrist and when the doctor told me this, Wajan commented in a state of laughter “how can you say she is highly evolved she can't even walk on her own two legs. I laughed she laughed and they doctor looked at her as though she was being mean about my disability, but this is our humour. As we left the room I tried to waddle out to the waiting room unable to grip my walking stick and I looked like a turtle trying to brush against the walls, maintain my balance and get to the front desk. The room was full of patients and as I told the nurse at the desk I was highly evolved, she made the same comment quite loudly in the waiting room and the look from the waiting patients was hilarious. I told her if she spoke to me that way again I would knock both her feet out from under her with my stick. Her response, go ahead and try you won't be able to do that without falling on your arse and once again the looks round the room cacked me up. I told her she was mean and she told me to get my disabled bum to the car all the while people looked on secretly above their magazines at the horrible friend she was and they way she was treating and speaking to me making fun of my disabilities. We left the surgery and began laughing uncontrollably while driving home. See the situation is what it is and for me being able to laugh and make light of the situation is funny. It is important when faced with these moments in life, through pain and illness to find the most of your situation and not let it beat you. I want to be able to provide support and help people find the best in their situations through my awareness raising. As they say laughter is the best medicine. I am currently about to get ready to go for my 6 month check up at Gold Coast hospital. I am nervous as I know how slow my progress has been since I seen them 3 months ago but with me I am taking the medical report from Tuesdays Pain Clinic with recommendations and together I hope to come home with a new plan of attack for my pain because without it I think I will have more endurance to get this plan of mine happening. I started a facebook page a few months ago for people with Transverse Myelitis and to date I have had 8 members join. As I have told you before the statistics are 1 in 1 million people but if anyone out there is reading this blog with TM please come and join our sight, it is a wonderful place to vent, laugh and talk even about very sensitive issues with other people facing the same situation and to talk to people WHO UNDERSTAND. We are trying to organise a meeting in person and one member has made a suggestion for the last weekend in November which highly excites me, to have online support from people who have the illness is great but to be able to meet and see yourself in the mirror illness wise would be amazing. These are all steps to getting somewhere with my project and it has me excited. I wanted to dedicate this blog to my Aunty who passed away 2 ½ years ago with cancer, see when I have a bad day and I feel like I can't smile or I am losing the plot I think of her and they way I only ever saw her with a smile. After reading her diary of her journey I have drawn strength from her entries and all the while in hospital I had her photo in my top drawer, when I felt I couldn't go on I would look at it and think of what she would do to cope and I would get through the day. She was an amazing women who unlike me faced a terminal illness but she taught me some very valuable lessons. Keep fighting, be strong and never give up.