In 2007 I was diangnosed with Relapsing & Remitting Multiple Sclerosis, in the last 18 months it has been re-diagnosed as Secondary Progressive MS, yes it is getting worse, and no medications are really helping, so sometimes I have to keep my feminine side Samantha away as I need to get help from physio's, hydrotherapists and others along the way, it does really get to me as I cannot always be Samantha and I really miss it, its not just the interaction I have with admirers etc but also just getting dressed up feeling feminine, trendy, sexy and younger than 45 what I am and just to go shopping as a woman for girly items as sometimes I have to use sticks to get around, due to the illness and how it affects the body somedays I can just about get out of the bed, not for the love of trying, especially if there is a lovely body alongside me to keep me occupied on, but again trying to find someone who would want to help me dress and take me out but alos at that later time would need to be my carer 24/7 as MS does impede seriously on people's health, I have spoke to other tv's and t-girls who have MS but also have a partner who understands and helps, but they even question how much longer can they be their female persona for til they have to call a end to it.

Samantha xx

hi samantha, i am not he most sympathetic person on this planet, BUT you have my sympathy, i roughly know how you feel and understand what you are going though, having severe developmental spinal stenosis and aethritos it is not easy some days, and getting the get up and go to get dressed and dolled up to go out gets harder as time goes on. keep at it girl, i know it is not easy love collette XXX.

hi sam hang in there girl i cant say i know how you feel but i hope you can get the help and support you need my thoughts love and prayers are with you xxxxxxx

hi sam i agree with amy just take care xxxxxx

Hi Samantha,

The future sounds so bad for you as the MS gets worse. I am not going to offer the usual sympathies and prayers as I sense you are looking for more than that from your sisters here.

My take on where you are and where you are going is that there will be good days and bad days, and the bad days will be bad. Even on the bad days there will still be good moments ...that shaft of sunlight lighting up the dew on a blade of grass.

More important than enjoying those days and those moments is the Samantha time that you say will go, as the MS progresses. If I understand correctly you don't have a partner who can help you dress, take you out and let you be Samantha. Is there some way you can organize or join a support group near to you?

None of us Tgirls has a perfect life, its about compromises for all of us, isn't it? Your "compromise" of health isn't one you would have chosen, and it is a condition which will get worse. So maybe now is the time to come out to all those who don't know - your family, friends and carers (I am assuming here that you haven't as yet come out fully). Tell them about Samantha and how important she is to your core being. If nothing else you will get more Samantha time and more time to feel good...esp as the MS gets worse.

I hope my advice helps in some way, and hasn't upset or offended you. I did read your profile before making comments, so if I got somethings wrong I am sorry. We will do our best to help you through Transtastic, but you need physical support from other T girls, so I hope those local to Portsmouth will offer help

hugs and kisses

Pauline xxxx

Many thanks for your comments, it goes along way with me, as for support, there is a group in Portsmouth.

But I do sense very strongly that if I turned up at the centre where the meetings are held as Samantha, I think I would be the laughing stock as it is held at a very large sports centre in a function room, I did join the MS Society's LGB&T page called Glams asking for advice & support etc but not a word came back, people had read the article I had wrote, but not a single reply so much for support from the UK's biggest MS Charity, even the local ms branch are weird, they are all old fuddy duddies, "stick-in-the-mud" people, so I dont turn to them for help or advice.

My family is not close, I actually think they would disown me as once I made a joke about it and my parents face was in disgust, they said you dont do you and I quickly played it down and said no, but I have met alot of supportive people on various t girl sites and we have spoke about the illness and how it will get alot worse to the point I will be in a wheelchair or blind or blind and in a wheelchair.

So it is a very difficult time to go through as I have no one to turn to, 2 ex girlfriends didnt understand about the dressing up part, and the last ex couldnt cope with the illness as the way if started to affect my day-to-day life.

Yes I have thought about moving away and starting afresh as Samantha, but I have a council flat as I was having severe problems with stairs, if I moved I would have to start all over again at the bottom then trying to get a place etc and then its the treatment etc as we all know how the "postcode lottery" is with the NHS.

And yes I have thougth about hanging up my stockings and boots and calling it a day on Samantha, but I love being Samantha so much, I have even answered my phone in a soft feminine voice as i totally forgot and the person ringing as said it that me, and I would say yes just choked on a cup of tea etc, even if I have been out in male mode and someone calls my female persona name Samantha, I have turned round and said something, and then say what did you say, yes so I have close calls when in male mode but love to be Samantha all the time, from when I get up til I go to bed, and then put a nice nightie or girly pyjamas on or chemise and french knickers etc.

Thanks again for your lovely comments and remarks.

hugs and kisses to all my girl friends

Samantha xxx

myself i intend to move, as long as it is not another part of oxford, not bothered about the pain! just take a few extra painkillers as long as i have my music, toolbox's, books and all my films [video as well as DVD ] lol, i will get there, alone and a army of teddy bears/stuffed toys as companions. or as they say i will do it if it kills me, and will always be collette and b------s to the so called pseudo caring people close to me, not close at all! take care girls, love collette XXX.

Hi Samantha ! Your dilemma is actually quite difficult to imagine for those of us able bodied girls.
I know MS only through knowing a gentleman who is on the board of directors of the support organization I work for. He is an amazing man, restricted now to a motorized wheelchair. He lives by the sea and has a kayak which he hitches to his chair and wheels down to the shore of our Port Philip Bay.
Werribee South is where the Werribee River meets the tidal ebb and flow of the salt water that connects us all.
My friend, Ian, hoists himself into the kayak and pushes off into the wild blue yonder. Strong arms, strong heart pulling on the paddles, his plaited beard wet with sweat, pushing away from shore as far as he can. And then he just sits. And floats. And throws a fishing line into the depths.
If he hooks a fish, he throws it back into the water.
"Not enough fish in the sea", he says. "But I like to see their faces."

Nicky XXXxxxOOOxxxXXX

This post was edited by Nicky Miniskirt at October 14, 2011 3:49 PM BST

Hi Sam' I've just joined saw link on your TV Chix page. yes MS is a bummer mine as progresses as well I've just bnought a wheelchair lightweight which I'm hoping I csan use to be more independant.Keep in touch won't you

Was diagnosed myself in 2001 with remitting/relapsing MS and have only just started using a stick. I fear it may have progressed to secondary progressive now as i dont seem to have any remission now. It would be lovely to have a fellow dresser to chat & 'compare notes' with.
Nina

Samantha Jones said: ''In 2007 I was diangnosed with Relapsing & Remitting Multiple Sclerosis, in the last 18 months it has been re-diagnosed as Secondary Progressive MS, yes it is getting worse, and no medications are really helping, so sometimes I have to keep my feminine side Samantha away as I need to get help from physio's, hydrotherapists and others along the way, it does really get to me as I cannot always be Samantha and I really miss it, its not just the interaction I have with admirers etc but also just getting dressed up feeling feminine, trendy, sexy and younger than 45 what I am and just to go shopping as a woman for girly items as sometimes I have to use sticks to get around, due to the illness and how it affects the body somedays I can just about get out of the bed, not for the love of trying, especially if there is a lovely body alongside me to keep me occupied on, but again trying to find someone who would want to help me dress and take me out but alos at that later time would need to be my carer 24/7 as MS does impede seriously on people's health, I have spoke to other tv's and t-girls who have MS but also have a partner who understands and helps, but they even question how much longer can they be their female persona for til they have to call a end to it.

Samantha xx''
-------------

iv just been diagnosed with vasculitis and i might lose my legs.

All of you girls are very brave. Wearing a skirt doesnt take courage - but living with your conditions does.

hugs

Pauline xxxx

I don't mean to sound uncaring, but if I got a diagnosis like that, I would just dress how I want.
Fuck the consequences, because with that in my life, I'd be using what ever I could that made me happy.

Thinking of you.
xx

Lonya stephony said: ''iv just been diagnosed with vasculitis and i might lose my legs.''
-------------
Hi Lonya
Oh my god that's awful as if MS isn't enough my sister in law at to have one of her legs amputated because of diabetis she as a prosetic on now and seems to manage but I don't know about you but my sense of balance is affected by my MS so that would be no good for me.
Any way I wish you well
Hugs xxx
Christy

If you wish to chat I am hear xxx

I am told I am disabled, my lungs no longer work well COPD and I am legally blind (low vision in only one eye). I have had to retire from my regular work and am looking for other sources of income. I have had some help from our Community health care system including paratransit. I have been honest with them about being trans and there has been no problem. Some days I ride the bus as rita and others as Richard. I have started going to some AA meetings dressed and have a young friend who is guiding my coming out. She is full time. I am now en femme all the time at home with my cat who doesn't seem to care.
Eye makeup is a particular challenge with only one eye and I use a magnifying mirror all the time. Still I feel better being me and will have to talk to my family about me soon.
I am amazed at the new opportunities that arise for me and looking forward to some new challenges.

Ive had a close friendship with a very disabled tv and i wouldn't hesitate to do so again, you will still be loved and wanted by decent people and ive always felt when faced with hard times people are more grounded and interesting xx

I too have a progressive disability and by being Helen 24/7 gives me the tools and the will to get on with my life.By being Helen its a brilliant coping strategy that preoccupies my mind and time.My doctor and the nurses who visit me at home are used to seeing me as Helen so that's not a problem and besides I don't really care about what people say as being Helen works for me.The latest prognosis on my condition is that I have about 2yrs left or less if the pain becomes so unbearable,thank god for the morphine tablets for the moment.

I have been diagnosed with a form of muscular dystrophy.I know the feeling of wanting to dress but not having the strength to get myself femme.I used to walk very well in heels.now I struggle just walking.I get a lot of pleasure by shopping for femme items,even if I don't buy them.

Well one way to look at it Pamela you will be saving a lot of money

I'm not a t-girl but I am disabled and know what frustrations arise when you want to do something but your body won't let you, so I empathize with you all!

I am learning that Mal My eye and lungs have gone this year. No more wilderness canoeing. Having only 1 eye and no tall of it makes eye shadow a challenge.

I'm sure it does Rita. I believe wilderness canoeing is overrated anyway, although I've never actually tried it myself.

Come to Canada I'll get you in a canoe