MERRY CHRISTMAS AND GOODBYE TO 2012

During the last nine months since the onset of my illness, I have realised there are three things in my life that I have found the most importance in. Family, Friends and Believing. I have the most amazing, caring and supportive family. I am blessed with Friends that I can call on at the drop of a hat and the list from which I could call is endless. The last one is Believing. I need to believe I will get well, I need to believe my boys will grow up to be amazing young men, fathers and husbands. I need to believe I will not give up on anyone or anything important in my life.

Monday night last week was the 10^th of December and I had the best night out. The comedy fundraiser that Ellen Briggs organised was one hell of a hoot. I arrived and the crowd started gathering. I was extremely happy to see the usual gang of supporters. There were other people I was grateful to see and there were people I did not know. I didn't get to speak with everyone there on the night, but I took several moments to look around and make a mental note of those present so I can thank them when I see them. The Mullumbimby Golf Club ended up being filled with people that appeared to be having an awesome night. I know I sure did. We laughed, had a drink, laughed, chatted, laughed and laughed some more. It was just what the doctor had ordered and I encourage anyone out there to try laughter as medicine. It is true what they say, “laughter is the best medicine”.

Accompanying Ellen on the night were funny people, Alex Onion, Fiona Crandell and one of the funniest men I have ever seen, Lindsay Webb. Lindsay travelled down from Brisbane. He was telling this hilarious story about a lady in the crowd at his show in Geelong and how he made her glass eye pop out because she was laughing so hard. I was laughing so hard I was sure I was about to become the next victim he would talk about at his next show. Not for popping my eyeball but for wetting my pants in public. He is a comedian that travels the world and also holds the world record for the longest off the cuff stand up comedy act, something like 38 hours straight and if you ever get the chance to see him on stage, go and treat yourself. Thanks Lindsay for coming to make my night so much fun. Ellen and Alex Briggs, thank you again for your time and for organising this night. I am eternally grateful to you and the community once again. It will certainly help give my kids a happy Christmas.

 

 

On that note, Christmas is fast approaching and ever since I was little I have always enjoyed this time of year. To me, Christmas is not about the religious aspect but rather the time to celebrate family. When we were younger our Christmas day was a massive gathering of all the Aunts and Uncles and Cousins. We would have the annual cricket match with fun and the expected tantrums when one of us kids got out. There would be presents, laughter, full bellies and of course the joy of being around the people that mean the most to me in this world. As families grew bigger and the cousins started having their own families the annual day became a thing of the past. It is now a precious memory I think of every year at this time. I decided a few weeks ago, that after the year I have had I am going to have one fabulous day this Christmas. I won't let anything take away the fun and joy I am planning to have. I want to have fun, and laugh and be with my family and create a day of memories for my children like I remember from my childhood. I think after this year, I deserve a day of what I want and the day I consider a celebration of family, to be great.

As the year draws to a close I think back over it and realise that I feel I lost a year of my life and that makes me angry and sad. It seemed to just go by and when I think back to March when I collapsed I remember being in hospital and thinking that by the end of the year this will be all over and a past memory. Well! Its not a distant memory it is far from it. The challenges I am yet to face will go on for a long time but I am doing ok now and I am ready for the fight. I want to make as much improvement as possible and to do that my focus must be to remain positive and strong. I will spend the New Year surrounding myself with people like minded and I will provide support to any of my fellow TM people that need help. There are so many people much worse off than me and my heart goes out to anyone suffering with an illness or without family this Christmas. To all my fellow TM Family, I wish you a Merry Christmas but more importantly a Happy New Year. Together we will battle this bastard and keep each other strong and focused.

To my Friends, I am blessed to have found you and have you in my life. I hope the New Year is kind to you and full of joy.

To all my Family that have been there for me this year, I thank you and I love you. I would not have made it through this far without your love and continued support and encouragement. They say you can choose your friends but not your family, but as far as I am concerned I got the best of both worlds.

I am scheduled for my next MRI Brain and Spine in the second week of January to look for any new lesions which would indicate MS. They will also look at the initial lesion to see if it has recovered and if there is still hope that the nerves will regenerate or if that area is now a “dead” non recoverable area. I try not to think about it, but the nerves creep up now and then. It is in the hands of the universe now and if the news is not good I will deal with it, but if it is positive then I will have more to be grateful for in life. Time will tell and life goes on, so onward and upward I say.

I will write my next blog after Christmas.  I wish you all the best for a safe and happy Christmas and New Year.  Thank you all for your continued support.

Love Leah



 

 

 
 
 
 
 
 
 

A CATCH UP ON THE LAST FEW WEEKS....

I know some of you have noticed I haven't done a blog for a couple of weeks because I have had a few people ask me where the next one was. That makes me happy because it means I am getting awareness out there and seeing people's interest drives me forward.

As per my previous blogs (for those regular followers or local people) you would be aware of my previous fundraiser to raise money for the installation of my air conditioner. I must say it is awesome. The last few days have been scorchers for me with the inability to regulate my body temperature and that air conditioner has been a life saver. Since my last blog the community once again came to my rescue when the local Mullumbimby Truck Show committee donated a cleaner for me, for 6 months on a fortnightly basis after the funds raised from the recent Show were split between charities. This show of generosity is a godsend and I am so grateful. It has taken a weight of my shoulders to know the jobs I can't get to will be done on a regular basis and won't need to stress myself about them. Thank you to The Ward and Johnston Families who are on the committee, for thinking of me and this awesome donation. But......it doesn't end there. There is a lovely lady in our local community who happens to be a comedian and all you locals will know who I am talking about. Ellen Briggs has generously offered her time and contacted a few of her comedian friends to put together a comedy night to raise funds to help my boys and I. On Monday the 10^th December at the Mullumbimby Golf Club they are holding a night I am so looking forward too. A night to laugh and laugh and laugh a bit more, which is just what the doctor has ordered. As I have mentioned in previous blogs I find it hard to laugh these days and in the weeks since my last blog the illness and the stress of everything took its toll. I ended up depressed, crying all the time and pretty much in a bad place. I have seen my doctor and she feels that given my circumstances it is completely normal that someone facing a long term illness, trying to raise three boys and keep on top of working what hours I can, the time to crash was inevitable. It was instant relief to have her say this is “normal” and I agreed to some sessions with a psychologist to get my head back on track and in a positive frame of mind again. At first I felt odd about this but after one session I realised it was exactly what I have been needing. Someone that doesn't judge, that I can be completely open with and that can guide me to keep my head above water. For a couple of weeks it was sink or swim and I have chosen to swim. I will no longer be negative, I will no longer let the depression get on top of me and I will live my life and make choices that are right for me and not for the sake of pleasing other people. I have been told for a while now that I am a “yes” person and I will now be taught the strategies to say “no.” I know some things in my life need to change and they will change once I get my head in the right place to make those changes. It will be hard but I will get there and I will beat this hideous disease and I will go on to live a happy and fulfilling life.

To the new members of my Australian facebook support page I welcome you. Starting that page is the best thing I have done so far regarding the illness and it has been an amazing adventure getting to know each of you in the group. There is now 13 of us in Oz in the group and everyone is such great support to each other and at any time we can cheer each other up and make each other laugh or cry together. But the most amazing thing that has come out of it is the new friendships formed and we are all excited about a proposed meeting weekend next year. We are aiming for around September next year and that is my new little project. We will need to make it as hassle free as possible and as affordable as we can, as some of us will need to fly or drive and find accommodation. When most of us are on limited income it is hard. I intend to contact some spinal associations etc and see if we can come up with any funding even if minimal to help our event, in the event of awareness.

A PURPLE BUTTERLY IS ONE OF MY FAVOURITE THINGS, FOR THOSE OF YOU HAVE NOT NOTICED...THESE ARE THE REASONS WHY THEY ARE AND I FEEL IT IS FITTING TO SHARE WHY WITH THIS BLOG.

 

Purple is the color of good judgment. It is the color of people seeking spiritual fulfillment. It is said if you surround yourself with purple you will have peace of mind.
The butterfly is the symbol of metamorphosis and transformation.
The symbol of new life, letting go of old cycles and finding your true inner expression.
The butterfly calls you to expand your awareness, spread your wings and call forth your inner joy.
Allowing the wind to carry you forward to your goals and dreams. A time of self-discovery rebirth. The butterfly shows you the beauty within.


Wednesday 14
I woke this morning and the moment my eyes opened I knew it was going to be a bad
day. I had that feeling when my eyes struggle to stay open and it feels like my head is full
of fog. As I sat on the toilet I actually closed my eyes and drifted off for a moment.
Lucky I didn't fall in. Not having to work I was relieved and made myself a cup of tea. I
sat in my new recliner while the children got ready for school. I fought to keep my eyes
open and I had only been up for a ½ hour. I HATE THESE DAYS. It feels like you are
not even part of the world and you are miles away. No matter what you do you just can't
fight the fatigue. I said by to the children and as I got up to go to the shower I started
having spasms. When I have a day of spasms, which usually comes with the day of
fatigue and exaggerated symptoms I struggle. My body goes stiff from the waist down
and I can't stop the spasm. Eventually it eases and I am unable to move again. They hurt,
they burn and they leave you scared you will fall . I had a shower and my legs were
burning and paining. I could tell today the pain killers were not going to help. I had
organised to go and have coffee at mum and dads and visit with an old family friend and
a friend that used to work with my mother. Both people are and have been wonderful to
me and I am proud to call them my friends as I have gotten older. I would normally go
and lay down and rest but I really needed to see these people. I have not seen them since
I got sick and they were wanting to see me and show me their support. I went and had a
lovely time catching up. Jenny is the most lovely lady and was always a wonderful
supportive person to my mother. I never worried about her when Jenny was around. Ray
the other visitor is a long term friend of my parents. He was friends with them before I
was born and I spent most my childhood life growing up with Ray around and he has
stayed a close friend. He was down visiting from Darwin, he does not live there, rather he
is there for a time whilst on his trip around Australia. Today reminded me of where my
own parents should be now. They talked and organised with Ray for years where they
would meet up and travel together whilst on their trip around Australia. BUT NO, my
folks were still here and as I told you before, they haven't yet got to go. I collapsed two
days after they moved into their brand new van and they are still where they parked that
week. They won't go and it breaks my heart all the time. I know from a parents point of
view I couldn't do it either. Go leave a sick child that is. The truth is I am not a child but I
still would be lost without them. They have had plenty of people in the community tell
them to go have a few weeks away in their van for a small trip and that they would be
here to support and look after me, but nope. I can't blame them at the moment as they
have a new grandson and they don't want to “run away “ on him. They say they will go
when the time is ready.
So after sleeping and dozing on and off all the day, I got to the stage when the boys went
to bed that I couldn't fight it any more and I went off to sleep. It is now 12pm, midnight
and I am awake. I hate this. I will struggle now to sleep for the nest couple of hours,
I will eventually go back off to sleep and then when morning comes I will be tired.
Anyway we will see what tomorrow brings.

The next day I woke up and I am having a weak day with my legs today. Pain is still
worse than usual in my mid thoracic and legs but I have therapy today so I usually get
relief from that thank goodness.

It is Saturday the 17 th and we went to a Wedding Reception for Sally and Jeremy in
Ballina at the Shaws Bay Hotel. I had a 2 hour afternoon nap so I could make it through
the reception without yawning my head off and being irritable because I was tired. I
sat and watched people at the reception having a good time, dancing and laughing and
although I was enjoying myself, I realised something that has bothered me for quite some
time now. I don't feel attractive anymore. I went to some effort today, even wore a dress
and got a bit fancied up different to my normal daily attire and as I sat there it was like
a wave came over me, I hate it, I hate the fact that even though I had put in effort I still
didn't feel nice or attractive. It could be the aide, it could be the weight gain, it could be
many things and I need to work out what it is to start to make myself feel better. Quite a
few relatives told me how lovely I looked but it didn't matter, I still did not in any way
feel even nice or anywhere near attractive. I am soul searching after tonight to find where
this and other things are coming from.

Apart from the outward appearance I feel useless, even though I know I am not. I look
after myself, my children and I work three days a week. I am on a mission to work out
where this comes from also.

I feel like I have come to a point in my illness and life in general where I need to do some
changing and reassessing certain areas of my life. I can't go on the way I am something
needs to change to make my life easier, happier and more manageable.

I feel like I am just wearing myself out on the wrong things and that something is missing from my life.

I've been contemplating for a few days and today ( Monday 19 th ) I realised I need to
admit I feel depressed. I almost fell asleep at work today. I feel tired, sad, lonely, alone
and emotional, and that is even with all the support. I had that feeling wash over me
tonight while I was cooking dinner that I was suffocating, like the days I had in hospital. I
felt like I wanted to run outside into a big wide open space so I couldn't suffocate. A few
deep breaths and I started to calm down. Then I heard “mum, what is for dinner it smells
so good” from the other room and there it is. My one constant in life, my children in the
other room relying on me. God I love my boys and I feel like I am letting them down
as a mother at the moment because I am always sick and I am always tired. If I could
afford it I would give up the job I love to stay home and rest and be as strong as I could
for them, but that is not an option financially. So I must admit this past week I have been
struggling, no point hiding it anymore, and the hundreds of other people out there with
TM know how I feel. They truly get it. I feel for every person with this dreadful illness
because you are going through horrible stuff. I know and I get it. We need to find out
more so people don't have to live like this. I know we are not terminal and I know there
are many hideous illnesses out there but TM is still to be discovered to its full extent.

I have finished dinner and am in the lounge room for an hour or so before I go to bed. My
youngest Abel is here beside me, he is never far away. Caelan and Josh are out jumping
on the trampoline and I know they just see mum with bad legs. They don't get the full
extent of the illness so one day they will be able to read this and realise what I was going
through and hopefully not think that i ever ignored them, or couldn't be bothered with
them or was too lazy to do anything with them. I just can't. And as I just wrote that Abel
out of the blue looked up and said “I love you Mum”. That is why I keep fighting, right
there. I must go now the young man has made me cry.

Awareness on its way.....

After a lovely article in the Byron News (a small local paper) letting everyone know about what a success the bowls day was, I sat contemplating the fact that I needed to talk to someone and I needed to do an article somehow to let people know about the onset of symptoms and the line of procedures I have learnt to assist with preventing permanent paralysis.

I have done some researching since being diagnosed and discovered the sooner the diagnosis, the sooner you begin treatment, the less likely you are to suffer permanent paralysis. Of course this is not always the case and everyone is different. If I can help one person recognise symptoms or help one doctor that may read this, be more aware of Transverse Myelitis and be able to diagnose someone quickly enough, then my job is done.

It wasn't until after diagnosis when I asked the nurses on duty exactly what Transverse Myelitis was and they didn't know, that I started to realise how rare and how little was known about it. At each change of nursing shifts the nurses inform each other other of the patient's update and care needed and each new nurse that would get me would ask the other nurse what Transverse Myelitis was. This was baffling me and in those early days I did not have a computer to use and one day I asked the nurse if she could get me something about the illness to read. It was a Sunday that day. She went out and printed a fact sheet out for me off the staff computer and bought it in. When she handed it to me she told me not to get too scared and panic, that my neurologist could explain more tomorrow, on Monday morning, when she returned to work. As I read the sheet my heart was racing I felt panicky and confused. Had the nurses or someone known about it I would have been able to ask more questions but there was nobody that could answer my questions until the next day and that seemed like a long time to wait when I felt so panicked with the sheet telling me a third of people never walk again.

The boys bought in my laptop once I was up to it and I began using it mainly to keep in contact with the outside world but to also research more about this disease. I tried to find people online with the illness and at the time struggled to find anyone in Australia with the illness.

I joined a facebook worldwide page for Transverse Myelitis sufferers and asked many times if there were any Australian members and nobody came forward. I kept asking until after I was discharged and one day a lady saw it and said there was a member she knew that lived on the Central Coast. I started my own facebook page for Australian sufferers and bang Susi from the Central Coast whose daughter was diagnosed with TM joined right away and put me in touch with a couple of others. They joined and I am glad to say that as to date we have 10 members and are in the process of starting chats about a get together in the not so distant future. If we can organise a weekend get together to meet and chat and get to know each other in person I believe we can do some awareness raising together.

Since I started this blog 12 members are now on board. A couple of days ago one member Susi sent me an old Northern Star Article (That is our major local paper) and in it was a story from a few years ago when a brave woman carried her son through flood waters to get him to hospital because he was gravely ill. The weather was so bad that the westpac rescue helicopter could not land. The article told the story that the lady suffered from Transverse Myelitis and on a normal day struggled to walk. OMG there was someone living with this hideous thing right under my nose. I went jittery with excitement but frustration of how I could find her. After work yesterday afternoon, I was really fatigued and had almost fallen asleep twice in the office. We had staff on holidays and I had worked a long day Monday and by Tuesday afternoon I was toast. Lucky I had Wednesday off. I stopped at Woolworths on the way home to get a couple of things for dinner and my mobile rang. It was Joshua, my middle son and he excitedly squealed into the phone, “mum, mum, there is someone in Mullumbimby with Transverse Myelitis”. I asked him how he knew that and he told me because she just rang and wants you to call her back. Yes, she had fallen in my lap. It was the lady from the Northern Star paper and after seeing my article in The Echo (small local paper) thanking the community for their support regarding the air conditioning fund raiser she also became excited and had to find me. She found me in the phone book and when I returned her call and spoke with her, it was amazing. She has had TM for 10 years and is at the same level still that I am at. She uses a walking stick and does not drive. We will meet up one day shortly for coffee and a good old chat. I can't wait.

I have told you how excruciating it was being away from my children and family and stuck in hospital for 2 months. It shows that awareness has come a way but has a long way to go. Back when the lady I just told you about was struck down (in almost the same way I was) she spent 9 months in hospital and it took a couple of months for her to be diagnosed. She got flown from Lismore to Brisbane and back then, nothing was known about it so she received hardly any of the treatment I did.

I have spoken with a lady from a National magazine that will be running a story for me to help raise awareness and that is in progress so I can't say anything more than that at present. All I can say is what I have said before. If what I have tried to do as far as setting up a support page, setting up this blog, talking to papers and this magazine helps one person recognise symptoms in time to get treatment and prevent them going through what we previous sufferers have and prevent them being in a wheelchair, then my job will be done and I will be a happy lady.

I must apologise to anyone locally that I have not stopped and talked with the last couple of weeks. The truth is some days, I just can't do it for many reasons. Either the pain is bad, I am tired and need to get home or I am too emotional and so on. It is never about you, it is never that I don't have time for you , it is just some days I can't stop. The reason I mention it now is because I have had a couple of weeks where I have been quite unwell. I have been trying to get medication sorted out and have trialled several options now, some that made me troppo, some that made me a space cadet, some that did nothing and left me in extreme pain and fatigue and some that work for pain but leave me nauseous and with other side effects. I just sticking with what I know now even though the pain does not completely go, I have less side effects and that is what I need to be able to cope.

I sometimes wonder if I will live the rest of my life like this, although most days I try to not too. It is just hard some days not to wonder. I have days when I think, no I will get better but sometimes it is just hard to do. I must admit when I have bad pain days I have thought maybe I would have been better off regaining no function, I would have no pain, I wouldn't have to take all this medication and I wouldn't be so fatigued and boring. Then I stop that thought and realise that is stupid, because although I hate the way I have to live, I can look after my children independently, I can shower and dress myself and I can go to work a few days a week, I can drive myself around town and I can live without a carer. I try to enjoy each day even when I am in pain because I have to live with the thought for the next 2 years that I may progress to MS and possible then end up in a wheelchair. Funnily enough, for the worrier that I am I don't stress about that possibility. I don't know why, because I always stress over the most stupid things everyday. I think it is my guardian angel telling me it won't happen and everything will end up ok. That is what I like to believe anyway. I have attached a few photos below from the Mufti Bowls days.

I wanted to dedicate this page to a little girl called Bella. She was three and was diagnosed with Transverse Myelitis when she was 6 months old. She got a cold like she always does (with TM our immune systems are suppressed and we are at risk of infection and illness). She got quite ill and in hospital she slipped into a coma. She did not come out of the coma and passed away on Monday the 12^th a few days ago at 10.43am. As Susi from TM Australia said after 2.5 years the most amazing thing happened, Bella took her first steps by herself in the pool the Thursday before.

There was one positive to this sad story and that is that the family announced Bella saved another little persons life on Monday when they donated her liver and kidneys. I pray Bella's family can find some strength to get them through this and the days ahead. I think there would be no greater tragedy in life than losing a child and I can't imagine the pain they are going through. The pain they are feeling would be a hundred times worse than what all of us with TM are feeling right now.

Sleep tight little Bella.

A MIXED BAG....

Feeling totally dreadful all day last Thursday I slept. I had awoken feeling ill, vomited and was shaking, sweating and my legs were weak. I was sent home from work and slept all day. I woke up on Friday still feeling awful and my folks took me to Ballina for some Scenar Therapy to stimulate the nerves in my body and massage to loosen the muscles from the spasms caused by the nerve damage. I once again went home and slept during the afternoon.

That evening was the Mullumbimby Primary School Fundraiser 'The Big Peoples Night Out” and I was overwhelmed when they donated the evening's raffle money to me and my boys. What an amazing show of generosity from the school my children all have attended. Although I did not stay long it was a great evening, very funny and very entertaining.

On Saturday I once again awoke dreadfully and fearing a relapse I phoned my parents to take me to the doctor. When my legs go weak it reminds me of when I was in hospital and I would have physio come round and try to get me to stand. It would take all my strength. I would sweat and shake and feel nauseous just from the effort it would take to try and stay standing on legs that wanted to collapse. We would only try 5-6 times each go and I would be exhausted and then sleep for hours. Anyway, this time it turned out the medications the pain clinic had put me on were not agreeing with me and had I have had them explained in depth I would not have started on them. I went to the surgery in town and the doctor spent a long time with me sorting all my medications and getting me organised.

I struggled to get there but that evening was one of my longest standing friends, Rosalinds' 40^th Surprise Birthday dinner and I went along. I ended up having a lovely, enjoyable evening and was so glad I made the effort. I would have gone no matter how bad I felt.

By Monday I felt human again and Tuesday I actually felt good. Today is Tuesday 6^th November and it is my other friend Wajans birthday and funnily enough it's Melbourne cup day......the irony? They both look like horses....hahahahhahahahahahaha just kidding Wajan and she knows it so don't everyone freak out. Awwww love you Wajan. You see, that is our sense of humour. There was also another reason for me to be happy today and it was that my friend Melissa from Tasmania whom I have known since I was a young teenager was coming for a visit with her daughter Emily who I haven't seen since she was 3 and her friend Trish. I felt good and the last week's horrendous symptoms were a distant memory. We laughed, we talked and we got emotional. We had dinner at Brunswick Heads with my parents as they are very close to Melissa and we talked about some amazing times we shared when we all lived together in a duplex years ago.

I got to thinking today about some things that happened while I was in hospital. See, through all the emotional times and hard times and the times I thought I was going to give up there were funny times.

I was in a mixed ward of 6 patients and on my arrival there was a lovely but very stubborn old german lady in the bed beside me. She had had a stroke and was in hospital recovering. See she had a routine set in stone. Each morning she would wake up and get dressed at 6.30am and sit on the side of her bed with her arms folded waiting on her breakfast. Well breakfast would come and she would eat it all then complain they give her too much food.....funny comment each day seeing you fill out your own menu form . She would then sit and resume the folded arm position and wait for doctors rounds at 8am. The doctors would come and tell her (from behind the closed curtain) that she couldn't go home until they got her blood level right and to do that she needed to take the medication. She refused, because she thought they were trying to kill her. The doctors would leave and she would once again resume the position until the next meal. She would then proceed to whine to us that they were trying to keep her here to get “rent” out of her for the bed. (Like the doctors weren't frustrated as hell and wanted her out of there because like myself, there were people down in emergency waiting 24 hours for beds). As there were 4 other stroke patients in the room all the same regime, there was plenty of advice telling her to take the medication as they were and they were all fine and getting closer to normal blood levels and home. BUT, no she did not want the tablets. So once 5pm would come around she would get back in her pyjamas realising she was staying another night, after not being released and sit up in bed waiting on her dinner. Dinner arrived, she ate and she complained at how much she had to eat.....Yup, she had ordered it. This continued for the first 7 days in hospital until one day she gave in and started taking her tablets. The next day her levels were right and she was discharged. To think she could have gone home 5 days earlier and I was stuck there unable to go used to shit me off but she was funny and all you could do was shake your head and laugh.

So the exciting news of the week is that after my air conditioner was installed I had money left over from the generosity of the community and on Saturday this week my new recliner lounge arrives. So when I am sitting back with my feet up and comfortable and free of pain I will once again have Mullumbimby to thank. Love to you all a million times over.

My Eldest Son turns 14 and My Air Conditioner gets installed.

I am proud to say it is my eldest son Caelan's 14^th Birthday today and he thinks this is a great birthday present. The friendly guys from Mullumbimby Refrigeration and Air Conditioning arrived on cue at 8.30am and Sean and Nick came in with smiles abound and
 the air conditioner that the town of Mullumbimby so kindly has help raise the funds for. “Wow”, this really is happening and once again the disbelief causes me to shed a tear, something out of character I know :).

The installation all went smoothly and late on Thursday afternoon we were sitting at home in the nice cool air and I felt completely cool and free of sweat (gross). I can't explain how much more bearable all the other symptoms are when you don't have the heat to make them worse.

I am eternally grateful for all of you that helped make this happen, you all know who you are and my thank-you's will take forever to get through.

We headed out to dinner for my Son's Birthday to the Chinese Restaurant in Brunswick Heads and had a lovely meal and cake to finish the evening. It was 8.30pm by this stage and I was tired and the fatigue got me... We headed home. Straight to bed for this little duckling.

Celebrating Caelan's birthday took me back to a very sad day for me back when I was in Gold Coast hospital. I was admitted to hospital 3 weeks before my 2^nd son, Joshua's birthday. I remember one day whilst my three boys were taking turns driving me round the hospital in a wheel chair, Josh looked at me and said “Mum, will you be home for my Birthday?”. It was still another week and a half away and I said “Of course that is ages away”. I never made it home for his birthday and it is the first time in my life as a mother I have not woken up and be bounced on by the birthday boy waiting for his kiss, hugs and presents. It broke my heart. I called him and his voice was quiet. I wished him a happy birthday and hung up the phone and cried and cried. Did he know how much I loved him? Did he know how desperately I wanted to be home with him today and did he know I hard I had tried? All these thoughts drove me crazy most the day. 

 

Michael was bringing them up after school and the doctor had allowed we a couple of hours leave from the hospital to go and have dinner with him. They picked me up and it was the first time I had seen the outside world for 2 weeks. Earlier in the day my in-laws and parents and Aunty from Melbourne had visited. Judy had ordered me a cake (see I always make my kids cakes and Joshua had asked for a Bart Simpson cake) in the style of Mr Bart Simpson and had brought it to the hospital to have with my Joshua when he arrived.

Well as the afternoon went on the ward became a buzz with the fact I was going on and outing and taking the cake that they tried to con me for a piece of. As I left the ward the nurses waived me off and were all shouting to have a wonder couple of hours with my family. I returned back after dinner and was welcomed back and tucked in by the nurses who wanted to hear all about it. I had to tell them I would talk about it tomorrow as tonight after saying goodbye I was too emotional and just needed to go to bed. Once again I cried myself to sleep. I wasn't home to yell out “goodnight Birthday Boy” as I always do on birthdays when they go to bed.

So today is the day after installation, the ^1st of November. I awoke this morning with a dreadful headache, it was pounding and the nausea was rotten. I took my medication layed back down for half and hour before getting up, taking the last med with a mouthful of food . I tried to drink a cup of tea but I ended up vomiting. I felt weak but thought once I got to work and the meds kicked in I would be ok.

But.....by the time I got to work I was sweating, nauseous and weak, my legs were hardly holding me up and I got scared they were going to collapse like they did on my initial day of onset in March. Keren at work called my parents and as they always do at work, with my best interests at heart, the bosses insisted I go home and rest. My father and his neighbour, Jeff, came and drove me home as I felt my legs were too weak and I was scared of another attack. I went to bed and spent the entire day there. I am awake now in my bed typing this and the symptoms have eased and my legs are feeling stronger. There was one symptom I didn't have to deal with today and that was the added heat. My house was cool and I was able to rest and get the sleep I needed to get me through the day.

So tomorrow brings a new day and my online Australian support group has a new member I need to get to know. That makes 9 ladies on the site now and it is a great little group with great ladies who provide support and encouragement on a daily basis for each other. I am also going for some scenar therapy and massage which gives me some relief for some of my symptoms.

Goodnight all.

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.