Before you start reading the newest blog a few people told me on Sunday at Bowls they try to keep a check out each day for updates.  On the right hand side you can see a box that allows you to become a member or follower and you will receive a notification, probably email when a new blog has been posted.   Saves you missing any or going looking for any.

 

 

LET THE BOWLS BEGIN

Leah's MUFTI BOWLS fundraising day.

On Saturday the 27th of October as I was sitting in my lounge room contemplating the day ahead of me.  I was feeling overwhelmed by my community's generosity and I seriously wondered how I could get through the day without having an emotional tear in front of the aforementioned public mass. 
It may be the day I let my guard down in public and to be honest it scared me in some weird way.  For so many months I have tried to stay strong, positive and happy in public and although I have confessed in my Blog that I do have breakdowns, to actually let it happen would be huge for me.

Sunday morning I awoke early at 6am and took my medication and lied back down to get a couple more hours sleep.  I tossed, turned and dozed and my stomach was like a little group of butterflies looking for an exit.  I was so looking forward to seeing everyone but, firstly, I know how tired I get and was worried I wouldn't make it through the day, and secondly, I still couldn't believe that this many people would be there for me and how I would be coping with the amount of attention I would have to face.

As we drove up to the bowling club there were blue balloons afloat, a representation of the blue Transverse Myelitis Symbol and there was already a crowd gathering. My folks came out and met me as they always do with support on hand to help us come in with stuff and it took me about half way up the ramp before I had to stop and have a cry before I entered the hall.
It was a good initial release before I went in and said hello to everyone. I was greeted by a few relatives I had not seen for a long while who rushed to the door. I then saw My Aunty Beryl and Aunty Connie who are the Matriarchs of the Mott family on my mothers side. They are like grandmothers to me and always keep in touch via phone and cards to check on my progress.  One in her late 80's and one in 90's I was so happy to see that Helen had bought them, as I look up to them with the utmost respect.
I had family there that had travelled from Brisbane, the Gold Coast and local friends aplenty.  I even admit there were a few faces I did not recognise.

My cousin Kylie greeted my and placed a blue ribbon she had hand made for everyone, the symbol for Transverse Myelistis and we all wore them proudly as to promote awareness.  What a wonderful touch to the day.  Thanks Kylie.
Wow the crowd was growing and everyone was so happy and having so much fun.  They were purchasing raffle tickets off Celeste. They were buying numbers on the 100's board and registering their teams for the main event, “Mufti Bowls”.
For all of you who took part in bowling thank you so much I hope you had fun as this was the main money raiser for the day and thank you to the bowling club for waiving the green fees. There were some classy moves happening, some butt cracks showing and definitely people who had done this before. The greens were host to some of Mullums finest bowlers, with some costumes to shame a race day.  The winning team were proud owners of a few bottles for the cellar.
As I sat and watched the action, I wished I could be out there enjoying the fun and rolling a few bowls but I was surrounded by people who were there supporting me in this new struggle.

 

 

One of my emotional moments of the day was when my friend Karen, whom I spent almost 5 weeks in rehab with, arrived in her wheel chair to show her support with her husband.  Karen had a brain aneurysm and her family were told they may lose her.  When she joined me in rehab she was unable to sit straight in a wheel chair without being tied up straight. She could not use her right arm at all. I am proud to say that she was an important part of my journey and we had moments in rehab that only "inmates" should know about.  We had good times and shared many tears and bad times but we joked about how one day we would both be able to go out on walking sticks together.  We did that on Saturday and we spoke between ourselves how proud we were of each other. So she sat with me and looked on and we decided next year WE would  have a go.
So the fun on the greens came to an end and a yummy bbq feast was had and our bellies were full with food and drinks.  Cheeks became pinker and the laughter became louder and as the day went on I felt less emotional and I began to laugh and laugh at the crazy, wonderful amazing people I have in my life.
The raffles began and much to my happiness my nephew Cameron aged 3 was the first drawn ticket. Well if there wasn't excitement in the house before there was now. Seriously you would think he had won a fighter jet not just a game. 
As prizes were drawn I once again started to get emotional as the generous people that won starting coming over and handing me or my children their prizes.  I couldn't believe they were doing that.  That was their winnings and they had come to support me and win some raffles and have fun but some of them went home empty handed and my boot was full.  I truly cried when I drew the hundreds board and I was so beside myself that I had drawn my brothers mother- in -law who has shown me a lot of recent support.  I thought to myself what good Karma for her but when she walked over and handed me the envelope with the hundred dollars she had won, wow!!  My tears could no longer stay restrained and she broke me.  Julia and Tony I thank you.  That was an amazing gesture and the other gesture we share between us.

Well, I then wondered what the four ladies were doing standing near Celeste once the raffles were drawn and as the crowd was asked to remain quiet, those butterflies started their journey to release once again.  They were the Mullumbimby Quota Ladies and they were there to present me with a cheque for $500.  That was it... I was officially toast and the tears flowed rivers.  As I hugged each of them, they told me that it was an absolute pleasure and I was completely lost for words.
Much as I was a few days before when I found out I had another anonymous donor of $500.  If you are reading this, you know who you and your family are and I thank you from the very bottom of my heart. I sincerely would like to have said a few words but the microphone was broken and I was unable to shout.
I will do this by other means.

There are a few people I wanted to thank for a day in my journey I will never forget.

Celeste Lees, my neighbour and the brains behind the fundraiser.
Nikki Ward for the idea of Mufti Bowls.
Tracey Devine, my neighbour and raffle gatherer extraordinaire.
Any business or person who donated prizes I thank you.
The bowling Club of Mullumbimby for waiving the green fees to make the fundraising money
The Quota club of Mullumbimby for their donation.
My anonymous donor of $500 thank you to a wonderful family you know who you are.
My brother Anthony for the official photography of the day. I will share these on my blog as soon as I have them available
For all the people that helped in anyway with Celeste setting up on the day and before.
The members of the bowling club for helping the not so talented bowlers on the day strut their stuff.
To Mullumbimby Refrigeration for the supply and fitting of the air conditioner. Photos to come.

And to all of you who attended and made the day the success that it was. Without you there the funds would not have been raised. I thank you a million times over.

We reached our goal and beyond.  My air conditioner will be installed in the next day or two and the surplus funds will be going toward something I have been desperately needing in the form of a recliner lounge.  I promise photos of what this community achieved to make my home more comfortable for me and my illness.
So as the day drew to and end and the crowds dwindled, Celeste was still cleaning up.  She finally left and I sat with the remaining few people before parting ways and heading home.  I was totally exhausted but my mind would not stop.  My body was asleep but my eyes were open.  I am normally asleep by 8.30 of a night but at 11.00 I was still counting sheep and finally slumber arrived.
Another day in my Journey was over and I went to sleep thinking to myself...... With all that is wrong in the world, and all the anger and hatred and devastation I was the luckiest person alive to be surrounded by love, family, friends and a community that knows no bounds when it comes to supporting and helping one of its own.

 

 

 

 

 

 

 

 





The Week that was.....

This week bought a line up of appointments for me. I had been on a waiting list for 6 months to get into the Chronic Pain Clinic in Lismore and I had that appointment on Tuesday. Over the last 8 months since diagnosis I have been on numerous tablets daily for pain and nerves and other symptoms for Transverse Myelitis. Some of them make me nauseous and sometimes I will vomit. Others make me tired which does not help when a major symptom of this illness is fatigue. It is a catch 22 because if I do not take the medications I am unable to walk around on my stick and do what I can do now. At the pain clinic on Tuesday we spent a few hours going over all my symptoms, when they are worse, when they are good. What works, what does not work. Nothing was left unturned. Although I smile most days especially in public I have bouts of depression. Those days I stay home or I avoid stopping and talking to people in public so I maintain my “happy” nature and do not cry in public. So to add to the mix an antidepressant has been a suggested that is also used to treat neuropathic pain. Hopeful it will help with the down moods as well as assist with the other medication for nerve pain. After everything was discussed to length the final doctor I seen was one of the most courteous, understanding and lovely men I have ever seen. He came up with a new plan of attack for medications, doses, when I take them and made changes to some of the current ones to help with the nauseousness etc. I was happy with what he suggested as I want to take the least amount of medications as I can, without compromising my care. Having an upcoming 3 month Neurology check up at Gold Coast Southport hospital with the Neurologist I was under in hospital the Pain specialist suggested taking his report and seeing if my Neuro approved. Thursday I went to my appointment at Gold Coast and firstly she was happy with the Pain clinics adjustments and signed off to approve the appropriate changes. The first thing she told me was that she could not believe how wonderful I looked. After the usual Neurologist examinations of my body, she said the sensory loss had not improved at all and all effected areas of my body were still at the same level they were on discharge. My leg leg and abdomen remain numb to heat, cold and pain. It is a very strange feeling being able to feel touch but not sense what it is. Sometimes it is an annoying sensation and other times it just frustrates me because I want to feel cool on me when I am hot or vice versa. She said there was still a chance up to 2 years that this may restore but it was unknown if, or to what level any sensation would return and if it will is something that they can't predict. The changes to my right leg movement had improved over a three month period but very minimal compared to the first 6 months and she said to be honest she is still surprised I was able to walk in on my walking stick, that whilst in hospital she thought I would not walk and she said the plasma exchange was my life saver. She made me tear up when she said “Leah you still have the same smile and positivity you had when you were in hospital and that is what is getting you through”. See I told her that I lost it some days and didn't feel the least bit positive and that I whinged at home some days. She said that was normal and the bad days are a positive part of healing. Being able to let the frustration out is important. She has scheduled an MRI of brain and spine in 3 months before I see her again. Transverse Myelitis is in the MS family and after an attack of Transverse Myelitis you are at risk of developing MS. I don't think of it most days but now and then it worries me that it may develop. My neurologist said my progress will be slow and I must not let it get me down. Keep doing what I am doing and see how and if the spinal cord heals over time. They don't clear you of MS until after 2 years so we will just not stress and remain positive that nothing will develop. I saw my local doctor whom I see every fortnight for monitoring and she was happy with the weeks appointments and plans. So that week is behind me and it is Saturday afternoon. I am sitting in my lounge room writing this and my stomach is fluttering at the thought of tomorrows fundraiser. How I am I going to get through the day with so many people to thank that care so deeply. I am afraid that at some point I will get overwhelmed and my emotional side will come out and leave me vulnerable to the thing I have been trying to hide for so long.....my weakness. I have spent the afternoon cutting they boys hair the best I can and now I its time to get them some dinner. So I will share my MUFTI BOWLS DAY adventure with you after the event.

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.

From Then until Today....

I was released from Rehabilitation on the 10^th May and and returned home to a very different life. Certain things I could now manage, I used a shower chair and that solved that problem. I also discovered that the shower chair was the right height to be able to sit a the kitchen bench and cook dinner. I could dress myself and move around slowly but I was and still am frustrated with the things I cannot do. Nothing more frustrating sitting on the couch looking at chores that need to be done and you want to do that you just can't. I needed to try and get as much normality back in my life as possible so under doctors instructions I returned to work the following week on the promise I would not work more than 3 days a week, which I still do. Prior to my illness I worked full time to support me and the boys. While I was in hospital Michael had made the boys get into their morning routine, even get their own lunches ready in preparation for my return home to make my life easier. I try to cope the best with the pain, fatigue and other symptoms the best I can and the first outing I had with the Brunswick Heads coop to have mothers day lunch with the family. I felt like I was back in the land of the living yet it was very different. I have constant pain and discomfort and symptoms aplenty from the illness itself, fatigue a major factor at the moment also. By early evening I am exhausted and go to bed on school nights with the children but am usually awake then getting uncomfortable in bed by 10-11 and have a couple of awake hours sometimes where my mind just wanders from thought to thought. A couple of times it was suggested to me by friends that they should do a fundraiser to help me out with things I needed. Having always been a self sufficient person who has always worked I said no until one day I was caught in a weak moment and agreed. My neighbour Celeste began the process and within a matter of days had overwhelming support from this amazing community I live it. People were ordering chocolates to sell and bookings were being made for a Mufti Bowls Day at our local bowling club. See her main aim is due to the fact that I can't regulate my body temperature due to the damaged nerves within the body and the sensory loss I am struggling to stay comfortable on dreadful hot days and this just enhances all the other symptoms. They are aiming to raise funds to install an air conditioner to help me cope. With the help of a few other ladies and my other neighbour Tracey raffles were being organised I have spent a few days at home emotional and overwhelmed completely at their efforts and the support the community is showing. I know that I lived in a great place but when this town needs to jump into action to support one of its own, boy! So on Sunday the 28^th October is Leah's Mufti Bowls Day and I am not quite sure how I will get through it. I hope I can keep my emotions under control that day. Last night as I told the three boys it was bedtime the usual routine began and I made my way to my room, one brings in my laptop, one boils the kettle and makes my cup of tea all without a request from me. They tuck me in and turn out my light and as they all head to their bedrooms they call out from all angles “I love you mum, goodnight” and I reply. I tear up most nights, my children now tuck me in and they are so amazingly caring and loving toward me. I am blessed to have them and I don't know what my life would be without them. That is our weekday night routine. Today I had an appointment I have waited 6 months for and it was at the Chronic Pain Clinic in Lismore an experience I wasn't looking forward to but I feel like I have some more hope tonight. They were fantastic and so understanding and helpful. They are changing the way and times I take some of meds to regulate the pain, switching some that make me sick and adding some to enhance and works with the others. At current I take up to 16 tablets a day and I was still in pain?????????? Transverse Myelitis they say, that is what it does. But...this doctor said we can try to help with this new plan of attack. On Thursday I see My Neurologist back at Gold Coast Southport hospital for my 6 month check up and I will know more about their plan of attack. I am hoping by the end of the week I will have some new information to work with. The one thing that is worrying and concerning me is that my physiotherapist has told me that there is probably no point continuing outpatient therapy as they have achieved their goals and really it is up to how far the spinal cord will heal now as to how much more improvement if any I will get. I at first took it as though “Oh no this is it I am not going to get any better” but no that is not right I will fight on and continue the physiotherapist routine I just need to stay strong and do it on my own at home now. So with the generosity and love and support flowing around me I am feeling truly blessed to be part of a community that so genuinely cares about me. I am looking forward to Sunday and can't wait to catch up with a few people I have not seen for a long time, some since before I got sick. Thank you Mullumbimby, Thank you. I will continue after seeing my Neurologist on Thursday.

Delay

Hi guys sorry for missing tonights continuation i have a huge day tomorrow i have a 4-5 hour appointment at the Chronic Pain Clinic in Lismore where i hope to finally understand my pain and how best to cope and manage it.  I need to get some sleep and fill out a huge questionairre to take so i will do the next blog tomorrow night where i left off from last night. 

Day After Onset, Diagnoses and Treatment

I woke up the next morning in the ER and went to sit up in bed when I realised I was unable to. What a sleep and I am not better.  As I ran my fingers over my body I realised that no sensation had come back and my stomach sank. At around lunch time the Neurologists arrived and informed me they would do an MRI scan, so I was taken to the hideous machine and my spine was scanned as they guessed at that stage it could be a tumour pressing on the spine. After the MRI I was returned to my bed in the ER and told they would come and do a Lumbar Puncture. I was scared at the thought of it and it is a test I would not want again. The Lumbar Puncture came back normal and I was then told to lie completely flat on my back for 4 hours to stop spinal fluid leakage and a migraine. I did as told and during this time they informed me that the MRI showed no tumours or anything was pressing on the discs etc that could cause paralysis. As they scratched their heads I was told I would later be returned to the MRI for another scan of the thoracic cord, spinal column. At this stage I had not seen my boys for nearly 2 days and I wondered if they were worried about me, upset and how I wasn't there to tell them I was ok, a mothers instinct I guess. It got late and on the Friday night I was admitted to the Neurology Ward 8C at Gold Coast Hospital. The next morning I was put back in the MRI machine and that is when they discovered the lesion in my spine that had damaged my spinal column. The lesion was causing the paralysis and the term was Transverse Myelitis. As I asked the nurse what that was her reply was simply I don't know, never seen it. Another nurse then was asked and could not provide me the diagnosis. I had internet literature and whilst reading realised I was facing a life changing illness but to what degree I did not know. See there are three categories they say.

1. They patient will make no recovery and be in a wheel chair
2. The patient will make partial recovery but be left will illness and some disability
3. The patient may go on to make a full recover.

It was Saturday and my Neurologists was not back til Monday morning so I spent the weekend wondering which category I was in and how my life would be hell if it were the first, no so bad the second and great if the third. They immediately told me that they were going to start 3 days of methyl pred intravenously and that should give me some movement back once the swelling round the spinal column had gone down. It didn't and I still could not wiggle my toes. So they decided to try for two more days which would make 5 and that is maximum dose that could be given. Each morning I would wake and try will my strength to move something and in my mind it was happening but looking at my legs it wasn't, I have never been more frustated in my life. My boys visit and lift my spirits and I wait til they leave with their dad before I break down for my crying moment so they did not see me. After 5 days I had still regained no function and my neurologists told me I was like going to fall into the first category, no recovery,  as I hadn't showed any improvement. Now I am scared and the thoughts that went through my mind of how I would care for me and my children. What about my job, what about driving what about everything. No I wasn't going to be in that category too many people were praying and showing support and their prayers had to work. The next morning on rounds my neurologist who was treating her first Transverse Myelitis told me I was a bit of a case study at the hospital as the statistics are one in a million people. From that day I had bunches of student doctors prodding and poking me and using me as a case study for their final exams, they seized the opportunity as they may never see another case in their career. I didn't mind if it helped them toward becoming a Neurologist like I needed so bad right now. My doctor approached me about trialling a new treatment for this called plasma exchange to see if it helped and being desperate I agreed.. I was sent to the OR and had a permacath placed in my juggler vein that came out on my chest. Each day I was hooked up to a dyalasis machine for 2-3 hours for each exchange to replace my immune system which they thought was causing the disease. After day 5 I was sat up in bed for breakfast and my toes moved. My physiotherapist who called round each day excited me when she said excitedly “see, see its not dead, the legs not dead”. I cried. It had now been the 2 most excruiating weeks of my life away from boys in hospital who visited every second day as they had a 1 ½ hour drive each way and school and the burden was too much. Their dad had come down to Brisbane to stay with them at my house and transport them back and forth to the hospital and provide me with the support I needed. My parents came every second day, my in-laws a few times a week and between I had relatives and friends. Flowers came endlessly and I was overwhelmed at how many people in the community were on my side. My doctor then told me she wanted to plasma exchange me another 7 times that would be a total of 12. The girls in the dyalasis unit lifted my sprits as did all the nurses at that hospital to me they were amazing. I dreaded the thought of another 7 days in hospital that would be three weeks.  It was then she dropped the bombshell and told me I had to have it every second day. That was another 2 weeks. As she left my room I felt like I was suffocating, my breaths were short and I could not stop the tears from flowing I just wanted my boys. It unfortunately was a day I had no visits planned and I was alone. I drew the curtains and cried all day on and off on my bed between the sessions of feeling like I was suffocating and at one stage considered checking myself out. I did not care if I ever walked again I just wanted my children and home. They sent a hospital psychiatry lady around who sat with me for an hour and chatted and in the end asked if she could borrow my tissues, yup I had made her cry. So on we went and after 12 plasma exchanges, gruelling physio and 4 weeks later I could get myself from chair to bed to shower chair. I was so clever. The physio was always trying to help me stand and the feeling of not be able to do something you daily take for granted that our body just does is horrible. As I tried this many times I would sweat and get nauseous as though I had run a race and one day while watching my parents faces as I tried to stand up from a chair it was gut wrenching. They looked helpless like they wanted to grab me but unlike a child taking their first steps this time there was nothing they could do, Their faces too are now embedded in memory. The sound of my father in law trying to be brave and not cry when he saw me.....horrible, my mother in law being ever so strong horrible and my Aunty that had flown up from Melbourne standing there smiling telling me you can do it sweetheart, you have so many people praying for you. My brother and his pregnant wife would visit with their son and he would be so concerned what they were doing to Aunty Leah and I looked at her belly with a new bub inside and remembered the excitement and anticipation of my boys births and how I wanted to be home with them. Michael and my sons remained strong and stoic and to this day I am so proud of my young men and how they coped. So after 4 weeks they broke the news they were sending me to rehabilitation to try and help with regaining some function. I still had limited bowel and bladder control, I had not regained any sensory functions and the pain was starting to set in. It burns, It tingles, it goes numb and it aches. I was sent to Murwillumbah Rehabilitation centre an amazing place I thought I might spend a few nights learning how to cope at home with limited movement. Nope I had to stay there for 4 weeks, that would make a total of eight weeks hospitalised and how could I possible spend the same time I had just done again in a new hospital with new people I hadn't got to know. Once again the tears and depression set and I had a day behind the curtain. I underwent physio twice daily and within 2 weeks was able to shuffle, waddle, swing whatever you would call it on a walking frame. Gee I was clever,  but as some of the function began to come back the pain from the damaged nerves all over my body just got worse. Another 2 weeks on and I left Murwillumbah Rehabilitation on a walking stick and took with me a few friends I have made for life. I am still in the current state 7 months later, my progress is slow, if any lately and the sensory loss has never returned meaning I am numb to hot or cold making it impossible to regulate my body temperature and I don't feel pain in certain areas which they say is dangerous. I have bowel and bladder issues but most the time am able to control my functions with no problem. I use the toilet about 20 times a day as my bladder retains approx 200ml each time I go and I can only hold about 500ml before busting so that doesn't leave room for a long time between. My lady parts still have an odd sensation and I have just had injections into my wrists to help the pain from the carpel tunnel I have developed as a symptom since being home. I arrived home to my new very different life 3 days before mothers day in May which was the best present I could have hoped for to 3 amazingly strong and independent boys who to this day help me and protect me like the day I collapsed. Caelan, Joshua and Abel, I can only hope this experience has made you stronger and more independent young men and as you get older  you will have an understanding of how easily your world can change at the drop of a hat. Tomorrow I will continue from last week when I found out my physio had called his part done and I found out the community I live in was organising a fundraiser for me. This will amaze you.

Leah Ryan - Living with and Raising Awareness of Transverse Myelitis

I have heard Transverse Myelitis referred to as the hidden illness for two reasons

1. It can attack with no warning and suddenly
2. There are many aspects to this illness apart from the physically visible that patients suffer that others never know
   
   

My Day of Onset

On Sunday March 10^th 2012 my parents were moving out of their home into their new van they had bought a few days earlier as they had just retired and were getting ready to travel Australia and have the holiday they had dreamed and talked of for as long as I can remember. I woke up and had a “sore back” you know the kind that makes you think I did something the day before that maybe had given it a little tweak. As the day went on it stayed annoying and mid afternoon I noticed a change of sensation on my stomach. When I ran my fingers over my stomach it felt kind of numb. I then noticed later that evening that my right leg had the same sensation. Anyway on with the day and tomorrow I would wake up and all would be ok. For the next few days I just had a sore back. On the morning of Wednesday the 14^th March I collapsed without warning whilst making my childrens sandwiches for school. It was as though somebody had snuck up behind and stabbed me repeatedly between the shoulder blades. As I was screaming I began sweating from the pain and not being able to catch my breath. My darling boys 13,11 and 9 and i live alone (their father resides in Brisbane) and they rushed into the kitchen to see their mother hunched over the kitchen bench in a state they didn't quite know how to handle. Over a couple of minutes as the pain intensified I felt as though my legs were becoming weak and I asked one of my sons to get me a chair which he did and I sat in the hope the pain would ease off. It didn't so I thought I would lie on the lounge to try and get some relief. As I stood to head into the lounge room my legs collapsed from beneath me and I noticed I could not feel anything below my bra line. I was paralysed. My son rang my parents and my mother in law who raced to my home to find me on the floor unable to move or function. They called the ambulance and as the doors shut and they pulled out my drive I could see the faces of my three boys standing and watching as their mum who was fine half an hour ago leaving with drips in her arm and crying in pain. The sight of their faces is embedded in my memory. That day I was taken to our local hospital in Mullumbimby where they told me I would need to go to Tweed Heads another ambulance trip that would take me further from home and my boys. At Tweed Heads hospital I had a CT scan and xray of my spine and nothing was found. I had numerous blood tests and nothing showed as abnormal. Between bouts of vomitting and doctors and nurses deciding what to do next I realised that when I got out of bed that morning I fell to the floor. I laughed at myself for being so silly but that was my first sign of paralysis setting in I was to find out later. By this time it was mid afternoon and I asked the nurse for a pan as I needed to urinate. They rolled me, placed the pan and left me to take care of business. After twenty minutes of straining and trying I could not for the life of me excrete any urine. I informed the nurse and the chaos began. Before I knew it I had a cathetar inserted and a finger up my bottom to test for clenching reflexes. When they discovered they paralysis involved the bowel and bladder they contacted Gold Coast Southport Hospital Neurology where they said I needed to be admitted immediately. Another ambulance trip and another hour further from home I arrived to be subjected to more blood tests and monitoring. At this stage the night was late and they settled me in a bed in the ER for the night until they could access the MRI machines the next morning and do a lumbar puncture. My mind was exhausted my body was paralysed and all I could think of was what lie ahead of me and my boys at home. Their world had just taken a change but they didn't know it yet neither did I. Tomorrow would bring a new day of tests to determine a diagnosis. All I knew was something was wrong and maybe after a sleep I would have the feeling back. I was wrong.  I just started my blog tonight and i am doing a few days catch up to bring me up to current day.  Tomorrow i will start from Diagnosis to first lines of treatment.