Lived Experience Forum

[FilthyFred]

Im wrestling with my life at the moment. I dont want to be here at all. My MS is on a steady path downhill.  I can no longer walk, shower myself of even toilet by myself. Im trapped in a physically dangerous home with no way out. My husband refuses to see that this is a dead end and being dragged back here gas been the nail in the coffin of my indepenant life. He is losing his mind, literally before my eyes. Cant think, forgets everything,  doesnt understand simple instructions and my son just hates us because he didnt want to leave the US. Who did, not me. Im sitting here helpless,  useless and utterly broken. I want to just roll out into traffic, but I cant because I cant even get out of the house. My husband is a feeder and I am at his mercy regards to feeding. No matter how much I plead with him to stop he just keeps on doing it.  Then there is all the pain. Cant get opioids from the docs. Wouldnt want me to off myself! So im in constant pain 24/7. Cant sleep because of it. Averaging about 4 hrs a night. Im just so damned over it all.

[TideisTurning]

Hi @FilthyFred, it sounds like there's a lot going on for you right now. I hear the frustration, helplessness and pain in your words- all completely understandable. It sounds a bit distressing though, and I want to  encourage you to reach out for support from somewhere like Lifeline (13 11 14) or the Suicide Callback Service (1300 659 467), because you don't deserve to go through this alone. I'll send an email to check in as well and wishing you strength as you ride out this rough wave. I hope things improve for you soon. Take care 💙 

[AussieRecharger]

Hey FilthyFred... ( i would love to know the story behind that name ).

It sounds like you have a lot of time at the moment to think about your predicament. When you talk about your family, it sounds like you have your husband and your son to help you out, do you have any other members in your support network. 

Please don't roll out into traffic or stop eating, I feel that would make the whole situation a lot more traumatic for all.  I am glad you have posted here and you felt okay letting us know how you really feel. If you are in regular contact with your GP, maybe ask about some mental health support under NDIS.  

While the days ahead may be challenging, there is no rule to say that the best day of your life still has not come. I do look forward to seeing more posts from you. If you are feeling up to it, I would recommend a listen to the matehelpingmate podcast from John Harper.  There are also other support services available on the MS Australia Website. 

https://www.matehelpingmate.org.au/episodes.html

https://www.msaustralia.org.au/support-and-services

AussieRecharger. 

[Owlunar]

Hi @FilthyFred 

I am so glad you have reached out and I would like to welcome you to the forum 

When I was an under graduate I did some support work with women with MS and I have a little insight into how devastating it is 

I gather your family has fairly recently immigrated from the US and you are without extended family support 

Can you access help for MS sufferers on-line? There is help out there  - probably hard to find and access  - you need it though  - life should not be so tough but it is and obvious that your family doesn't understand. It is hard to understand 

Don't give up hope - there are a lot of people with MS and there is support. Can your doctor help?

Dec

[Mazarita]

Hi @FilthyFred 

Prompted by @Owlunar mentioning possible MS groups, I searched "multiple sclerosis australia" on Facebook and there are many results there. Unfortunately, for reasons I don't really understand, SANE does not allow us to post any FB links. But here are the names of a few FB groups that may be of interest to you. If you search FB for the group names you will probably find them.

Multiple Sclerosis Australia

says it's only for Australians but probably means anyone in Australia

Multiple Sclerosis Stories

looks like this one may be based in Canada but seems to be open to people anywhere

Women of Multiple Sclerosis

seems open to all, no location for the group specified

Hope you find some more support to help your life improve.

[Clawde]

Just wait love, you are never ever alone we here you Thankyou for reaching out, we too have stuffs going on it's OK really just bide your time right now Re: Good Morning! 

[FilthyFred]

FilthyFred is a childhood name given after I had a meltdown at the beach and refused to leave. I kept throwing mud and sand at anyone who got close until one of the neighbours kids braved my chucking arm to retrieve me

[FilthyFred]

We returned in december to our home of 20 years in Melbourne.