Is anyone in Melbourne Australia?

[rowenafly]

Hi I talk a lot to people in the United Kingdom which has a lot more meningitis than Australia. I would love to talk to people in Melbourne Australia to see if anyone in my city copped the disease? Maybe we could talk to each other ? I wish I could meet people who have had this. It would help me a great deal to know I'm not the only person in Australia who still has lots if problems. Australia has no support group at all. If you are in Australia and you want to talk can you let me know? Thanks

Rowena

[ShannanLouise]

Hi Rowena, I posted last week about the icecap being helpful and said then that I'm in Sydney, Australia. The forum is helpful isn't it...I'm sorry to hear you've been unwell. What type of meningitis did you develop? When? How long have you been recovering? I got Bacterial Meningitis, along with pneumonia and pleurisy in March 2013. Then I developed encephalitis. Huge amount of pain for months and months - unable to walk, bear light, no sounds, can't bear vibration (can't go in cars etc...). Now approaching 1 year of illness and have had four days of lesser pain during the last week. We're very excited and hope that this might signal a real improvement (although my neurologist has told us that I'm likely to continue to have severe pain for at least another 18 months and then lesser pain for some years to come. I'm positive and optimistic that I can beat that prognosis Stay positive and keep in touch on the forum. It really doesn't matter where people are with such a wonderful forum to keep us all up-to-date with each other and with developments in treatment and research into meningitis. But you're right - it can be lonely and a struggle when your whole life is consumed by pain in the head/brain. Shan

[rowenafly in reply to ShannanLouise]

Hi thanks a lot. I had viral meningitis a year and 4 months ago. I still have some brain issues and lately felt like the seizures I had in hospital might be returning. But, they did not go the full extent. So I guess it was just a warning shot that I was too tired. Wow I am sorry to hear about your heavy dose of encephalitis as well. It sounds like you have really been through it. I cant believe people suffer through this stuff for so long. Im happy for you you have had a breakthrough of late. The body is an amazing machine and is trying to reach homeostasis. Im assuming you dont work now. How are you spending your days? Im at work and university and it was touch and go as to whether I could continue working last week as I was so shot. Its only been 5 weeks at work after 1 year four months off pretty much. However, I can do the degree so onwards with that as I like it a lot. I was 43 when I got it and about to turn 45. So its been hard to recover any fitness but that doesnt worry me much. More concerned to keep my brain functioning. Hey you know your illness is still so recent in the scheme of BM. Its such a bastard. I hope you are getting the support and kindness you need, because its just so hard if you dont. Anyway, I wish we had a meningitis centre in Melbourne or even Sydney. I was thinking about looking into it in Melbourne to set up an informal group thing maybe. Just for friendship and support, but really dont know. Let me know if you think such a thing would be useful. And thankyou for your kind reply.

[ShannanLouise in reply to rowenafly]

I hope we both see signs of real recovery soon, and everyone else out there suffering. I saw ruratty2's post - helpful. I will look into this organisation that's been set up in Australia. It's good to get all the support we can (and to give it too). No I'm not well enough to work - ironically I'm a neuroscientist. My neurologist says I'll need another 18 months off, possibly several more years, but at least I'm able to do so much more than I could. I'm extremely grateful as I know others who are worse off. Take good care of yourself.

[NMC70]

Im in wollongong, 900kmh North

[r_u_ratty2]

Dear rowenafly, I am a member of the Confederation of Meningitis Organizations. I met Jess 1-year ago

at a conference and her family started this organizations due to her little sister contracting meningitis when she

was a baby. They are in Australia, and every year they hold a huge telethon to raise funds for this cause.

Please do not delay in contacting her, she will support you !!! I hope this brightens your spirt a bit .

comomeningitis.org/contact-us/

Jess Langoulant

Communications Officer

[e-mail]

[ShannanLouise]

Thank you ruratty2 - haha - good name! I will look into this organisation that's been set up in Australia. It's good to get all the support we can (and to give it too).

[meningitisaustralia]

Hi Rowena,

Australia has the Meningitis Centre of Australia organisation. It's been operating for 22 years from Perth. We offer advice and information to sufferers and schools etc.. If you would like to call us, you can free call 1800 250 223. Looking forward to chatting to you. We are also on Facebook. Have a nice day.