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.