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.