TM LIFE A COUPLE OF MONTHS ON....

THE LAST COUPLE OF MONTHS LIVING WITH TM......

I did my last blog coming up to Christmas. Since then, Christmas and New Year have come and gone. I had the family at my place for Christmas day and I thoroughly enjoyed having them in my home. I set up a lovely table and did the preparing of most the food myself, which I did over a few weeks to balance it out as to not make the job exhausting. The family bought food and we ate way too much. A few weeks ago my youngest son Abel turned 10 and I try really hard to treat him like a “big” boy but I do admit I fall into the trap of treating him as my “baby” but I am learning to cut the umbilical cord. The children went back to school last week and all seem to be settling in well. Caelan has started year 9, Joshua year 8 and Abel year 5. They still look after me when I need them and continue to know what I need when I need it and honestly, they amaze me most days.


 

Yes I still get my cup of chai tea in bed in turn each night by the boys.

 

Here is how the last couple of months with TM have panned out.......i have bad days, good days and most the time remain in pain, which my neurologist told me is just the Transverse Myelitis and I just have to live with that. I had my 3 monthly MRI's done a few weeks ago. It was hell like usual in that hideous machine and this one was full brain and spine to watch for new lesions and indicators of MS scars on the brain. They were also checking to see if the original lesion has decreased in size meaning the nerves had regenerated. Results in full I won't know until May when I see my Neuro but my doctor got a brief of the report which said no new lesions (yay), no MS scars (yay) but no shortening of original lesion (shit).

Next month on the 14^th it will one year from the day of my collapse. One year, and that scares me because by now I expected to be much further into a healing process if I was to be in the first category of full recovery. But that is medical data and there is always exception to the rules, so someone has to the exception right? Why not me? I got the illness and that was a one in a 1-2 million person chance.

I have been having extreme bouts of pain that get me down, I have days of depression, days I don't want to talk because I will cry, so I don't go. I manage to work 3 days a week and I find those days although exhausting are a distraction for me, so I get up and get on with it. I recently have had lots of pain and was getting quite concerned. I spoke with my doctor, my psychologist and they came up with the conclusion that not only is it just a bad time with the illness but it has been school holidays and although having the children around has been so wonderful I have not had the 2 days that I don't work to relax and rest. So now school is back I intend to get a new routine sorted and to spend my 2 days to myself as best I can for me and my health.

It comes to mind that I must reiterate to all my caring friends and family that I do have bad days of extreme pain. Sometimes when I see you in the supermarket or out somewhere and I don't stop to have a conversation, it is not you, it is me and I just can't stop. Please do not get offended if this happens to you. I still love you all :)

So, I was at work this week and my neurologist called and said she needed to talk to me about my MRI briefly as she didn't want this particular issue to wait til May. My heart skipped a beat and I thought, here we go again. I have been getting very painful hands as I told you in my previous blogs. I had cortisone injections into my wrists but they only lasted a month of relief and you can't keep having them. Some of the pain is coming from the injury level in the spine and some is bilateral carpel tunnel syndrome. She has sent a referral to a neurosurgeon to consult with me regarding treating it via surgery. Not happy Jan. Her theory which makes total sense is that because the injury in the level affecting my legs is still needing the support of my upper body to get around, I need my hands and arms and if we don't deal with them, they will get worse and if I continue to not deal with them and they become useless I have now way to get round with walking aides. Makes sense but I do not like it. The worse part is the recovery. Depending on what the neurosurgeons option is there could be a 6 week recovery process of non working hands, which means I can't get round without using my walking aids. There is talk of rehab, that really does not make me happy, I don't know if I can endure that again. Just when I thought that was a year behind me, BAM. So, I will wait until I see the neurosurgeon and see what the next few months hold in that respect.

I still have amazing community support and offers of help every day and I am so grateful.

I had a growth on my left leg I went and seen the doctor about. It seemed to become infected and he thought it best to remove and test it just for safety sakes. I went to the appointment and laid up on the bed and as he prepared me and began the initial injections, I didn't flinch. He thought I was a female hero I am sure. I never moved the whole removal of the growth. He prepared me that it would be very sore for a few days and I should take it easy so it didn't hurt to much. I assured him it wouldn't hurt. Little secret between you and me....left leg, numb, no sensation hahahahaha.

I have been seeing a psychologist now for a month or two and I feel like a weight has lifted after each visit. She doesn't judge, she just lets me blah blah blah about whatever I need to and some days it's personal, some days it's pain and sometimes it's just a blub but I suggest anybody struggling with a long term illness and you feel like your life has been torn away from you. Do it. See someone. It has been the best thing I have ever done and at first I didn't want anyone to know I was going as I had completely different opinions of psychologists due to the experiences I had seen of people in my life when I was younger. I can't go into more detail than that, its personal and its other peoples personal information. I now understand that anyone needing emotional support or life issues to deal with can benefit from their help and I think if I had not started going, I would have broken down by this. She helps me deal with pain, my personal issues, how to help my relationships with my children whilst I am sick and so on.

Most days I am so fatigued I can't keep my eyes open til 4pm. I am learning to power nap around that time to get me through cooking dinner and until bedtime because literally just keep my eyes open. When you feel really tired, you feel tired, but this fatigue just takes over your body and you can't explain it til you feel it. I think I have become a power nap convert. I learnt this technique and it works. This is my first week into it and I hope it keeps helping me get through each day. It gives me more time with my children of an evening and that is precious and important at this time of their lives.

So that is where I am at. I have pain, I get exhausted, but I get through each day and I am getting on with life with TM the best I can. For now.

I have a large online support through various TM groups and it is fantastic to be able to talk online with other people suffering the same illness. They understand every aspect of the illness and it helps.

The exciting news is that we are going to Valla Beach for three nights over Easter long weekend and am so looking forward to the

little getaway. The past 12 months has been home, hospital, doctors and the same routines over and over and the break in the routine and change of scenery is just what the doctor ordered. I can't wait.

Another thing I am looking forward to is the impending birth of a baby that has been a long time coming for two very special people in my life. You know who you are B and K and I know of the support you have given me from afar everyday We have known each other a long time and to know that you are being blessed with your little angel that has waited so long to find its way to you both makes me realise that sometimes in life, just when you think you have nothing to look forward to, a miracle comes along and makes us all smile and realise....everything happens for a reason.

They say everything happens for a reason and what ever that reason may be i just live with the fact that one day we will understand why things happen why and when they do.

“A positive mind anticipates happiness, joy, health, and favourable results”

 

I found this gorgeous photo of my boys from at least 5 or 6 years ago when they were all being funny one night and decided to make me laugh.  I certainly did and still do on a daily basis. They make me laugh, they keep me fighting and they keep my spirits up. Anyway, i just had to share the picture :)

 

"GOD BLESS EM"

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.