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MS in all its glory

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    #992
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    Ah feck, yes, second opinion I think is what is needed


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    #993
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Hope all are well. I made a big decision today. I asked to reduce my hours at work. I'm a bit nervous about doing it but I really think it's the right thing.

    The fatigue is starting to become very real for me and while I'm fortunate that it's not very bad and I am still able to work a full day, that's about all I'm able for. I spend the morning sruggling to get up and the evening in bed napping or waiting to sleep.

    I struggle to keep on top of the housework and normal things like cooking and grocery shopping. If I do anything like have a night out or a day out, I end up completely wiped out for a few days after. I feel like all my best time is spent in work and as a single parent to a pre-teen, it's not fair on her that when she sees me I'm always tired.

    So I'm just waiting on it to be approved and then hopefully I'll have some more balance in my life. Money will be tight but that's nothing new lol.

    I'm hoping this will tun out to be a very positive thing.


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    #994
    ElleEm
    Closed Accounts Posts: 3,981 ✭✭✭ElleEm


    ash23 wrote: »
    Hope all are well. I made a big decision today. I asked to reduce my hours at work. I'm a bit nervous about doing it but I really think it's the right thing.

    The fatigue is starting to become very real for me and while I'm fortunate that it's not very bad and I am still able to work a full day, that's about all I'm able for. I spend the morning sruggling to get up and the evening in bed napping or waiting to sleep.

    I struggle to keep on top of the housework and normal things like cooking and grocery shopping. If I do anything like have a night out or a day out, I end up completely wiped out for a few days after. I feel like all my best time is spent in work and as a single parent to a pre-teen, it's not fair on her that when she sees me I'm always tired.

    So I'm just waiting on it to be approved and then hopefully I'll have some more balance in my life. Money will be tight but that's nothing new lol.

    I'm hoping this will tun out to be a very positive thing.

    Well done! It is such a brave decision to make, because it means you have to acknowledge the change MS brings. You may have less money but I am sure your quality of life will improve immensely.

    I am in the opposite position where I am going back to (proper) work since my diagnosis three years ago. I have done some childminding over the years, having left a super stressful job when I got sick, but have gotten a job in Social Care again so I have about a month to get myself ready. I have to admit... i am a little nervous!


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    #995
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Change is always scary. I hope that maybe when my daughter is older I can go back fulltime, health permitting.
    But I just feel like I'm prioritising work over motherhood and I don't want that. Before the fatigue I felt able to do both but now the MS is eating into my Mammy time and I'm not happy about it.

    I do hope in a few years to get back to fulltime but right now, it's just too much especially as her dad isn't involved.

    Best of luck returning to work. My advice is to be organised. Get your groceries online if you can, batch cook and freeze dinners and make sure at least one day off is just for rest and relaxation (not housework ;) )


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    #996
    femur61
    Registered Users Posts: 1,588 ✭✭✭femur61


    ash23 wrote: »
    Hope all are well. I made a big decision today. I asked to reduce my hours at work. I'm a bit nervous about doing it but I really think it's the right thing.

    The fatigue is starting to become very real for me and while I'm fortunate that it's not very bad and I am still able to work a full day, that's about all I'm able for. I spend the morning sruggling to get up and the evening in bed napping or waiting to sleep.

    I struggle to keep on top of the housework and normal things like cooking and grocery shopping. If I do anything like have a night out or a day out, I end up completely wiped out for a few days after. I feel like all my best time is spent in work and as a single parent to a pre-teen, it's not fair on her that when she sees me I'm always tired.

    So I'm just waiting on it to be approved and then hopefully I'll have some more balance in my life. Money will be tight but that's nothing new lol.

    I'm hoping this will tun out to be a very positive thing.

    I gave up work 14 years ago. I had three small children at the time and I was so tired it wasn't fair on them. I also thought, in reality how much do I mean to them, I am just another number to them. I meant more to my friends and family so I think you made the right decision. Obviously, it was hard but life is for living for yourself, and not for anybody else. Well done.


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    #997
    kkelly77
    Registered Users Posts: 1,673 ✭✭✭kkelly77


    Anyone experiencing extremely sensitive or painful skin? As in quite painful to touch.


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    #998
    ElleEm
    Closed Accounts Posts: 3,981 ✭✭✭ElleEm


    kkelly77 wrote: »
    Anyone experiencing extremely sensitive or painful skin? As in quite painful to touch.

    I had that! It is called parasthesia. It felt like someone skinned my leg and all my nerve endings were exposed. My socks hurt, my jeans hurt, putting my foot on the ground hurt, bending my knee hurt... it was so unpleasant. I got prescribed Lyrica for it, which helped. I still have that sensation around the heel of my right foot. Putting on my splint or certain shoes affects it but overall, it is fine now.


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    #999
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    Yep to the skin sensitivity, I use gabapentin , it blunts the pain rather than kills it,but makes life more bearable.
    Anyone on Fampyra? There's a big campaign to get it funded by the HSE.
    http://tinyurl.com/oqrhwb9


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    #1000
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    I get very sensitive skin on my inner arm which comes and goes. It feels like sunburn so it's not too bad. Haven't done anything about it.


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    #1001
    kkelly77
    Registered Users Posts: 1,673 ✭✭✭kkelly77


    byhookorbycrook wrote: »
    Yep to the skin sensitivity, I use gabapentin , it blunts the pain rather than kills it,but makes life more bearable.
    Anyone on Fampyra? There's a big campaign to get it funded by the HSE.
    http://tinyurl.com/oqrhwb9

    Petition signed


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    #1002
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Hope all are well. I'm still waiting on my part time hours. Ended up being sent for a medical :rolleyes:

    I'm really feeling the fatigue at the moment. I was standing chatting to a neighbour and had a bag of shopping in my hand. Nothing heavy but after a bit my whole arm started shaking. That's a first.

    I was also holding and winding a friends new baby and could believe how tired my arms got.
    It's horrible really.


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    #1003
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    Heat/ Humidity tends to make MS-ers worse.


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    #1004
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    byhookorbycrook wrote: »
    Heat/ Humidity tends to make MS-ers worse.

    Yeah I'd say that's the issue alright because it hit me like a tonne of bricks out of nowhere. I find I'm fine in the mornings when it's cool but by evening time I'm wrecked and I feel like I've run a marathon.


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    #1005
    Sarsgav
    Registered Users Posts: 2 ✭Sarsgav


    ash23 wrote: »
    Yeah I'd say that's the issue alright because it hit me like a tonne of bricks out of nowhere. I find I'm fine in the mornings when it's cool but by evening time I'm wrecked and I feel like I've run a marathon.

    All I want to do is lie down and sleep. Zero energy in the evenings...


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    #1006
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Sarsgav wrote: »
    All I want to do is lie down and sleep. Zero energy in the evenings...

    It's horrible isn't it. I'm in bed most nights by ten and that is really forcing myself to stay up "late". If I gave into it when I wanted I'd be in bed by 7 or 8pm.


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    #1007
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    Have any of you invested in a Chillow?I'd be lost without mine!


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    #1008
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    byhookorbycrook wrote: »
    Have any of you invested in a Chillow?I'd be lost without mine!


    I've heard great things about it. Must look to invest in one. This is the first time I've really been affected by the heat to such an extent.


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    #1009
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    Famyra to be raised in the Dáil at 5 today. It also featured on the Times this morning.
    http://www.irishtimes.com/news/health/biogen-to-reapply-for-hse-funding-for-multiple-sclerosis-drug-1.1834437


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    #1010
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    According to the Sunday Times, Savitex is being approved for Ireland. The Fampyra fight continues. If anyone is on Fampyra , can you PM me please?


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    #1011
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Hi All

    New poster here, just diagnosed after 2/3 relapses in a year but low activity on MRI. Waiting on JC test to see if I'm a candidate for Tysabri. So far I've had optic neuritis, dizziness, clumsiness, and numbness. The numbness is a new symptom, not very nice - can hardly feel my feet/legs and hands. Going through IV steroids again at the moment...

    Anyone else on Tysabri and what's it like?

    Cheers

    Salmo


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    #1012
    discobeaker
    Registered Users Posts: 1,243 ✭✭✭discobeaker


    Info from yesterdays RTE news regarding Sativex.

    http://www.rte.ie/news/2014/0711/630149-cannabis/


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    #1013
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    The big issue with Sativex will be cost, like fampyra. I'm on tysabri since Jan 2009 and have been relapse free since then . The PML thing had scared me but I don't even think about it anymore, except to consider how I'd be lost without it. My advice is to grab it with both hands . Pm me if you like.


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    #1014
    pbarr
    Registered Users Posts: 824 ✭✭✭pbarr


    Has anybody here been on Nabilone. My neuro is after prescribing it for muscle spasms but I haven't got it yet. He described it as an alternative to Sativex which is not available yet but will be very soon. Just wondering has anybody tried it.


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    #1015
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    Sativex has been signed into law , so is now legally available here.


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    #1016
    nd
    Registered Users Posts: 1,855 ✭✭✭nd


    So for you folks with balance/weakness in legs ect issues. How do you cope? How do you go anywhere? Even into shops ect? To weddings ect? To work?

    I sometimes think a wheelchair would make my life alot easier and give me so much freedom. But then think it'd be ridiculous to have a wheelchair. I can walk. 90% of the time ok. But the occasional times that i have balance issues and feel like my legs are going to give way, makes me feel like I can't do anything.


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    #1017
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    I agree that sometimes something else to moved around would be nice. I have a blue badge which is a help, except for auld WANs who think being over 60 means they are entitled to park in those spaces! I do try to suss out places beforehand to see what walking is involved but there are places / things I just can't do any more. That said, a friend persuaded me to use one of those scooters around Liffey Valley and it was the best thing ever. Outta me way!!!!


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    #1018
    Sarsgav
    Registered Users Posts: 2 ✭Sarsgav


    byhookorbycrook wrote: »
    Have any of you invested in a Chillow?I'd be lost without mine!

    Chillow??? Please tell more... I have a super fan at home but that's there goosed in work... Have a mini one there but it's only a baby one...


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    #1019
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    A chillow is a spongy type waterproof thingy that you fill with water(once.) It slips into your pillow or you can get bigger ones ,not sure how'd it work at work ,you could sit on it, I suppose.
    www.chillow.co.uk


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    #1020
    pbarr
    Registered Users Posts: 824 ✭✭✭pbarr


    byhookorbycrook wrote: »
    The big issue with Sativex will be cost, like fampyra. I'm on tysabri since Jan 2009 and have been relapse free since then . The PML thing had scared me but I don't even think about it anymore, except to consider how I'd be lost without it. My advice is to grab it with both hands . Pm me if you like.

    Has anybody got any information about the availability of Sativex or whatever it's going to be called. I know it can be prescribed by your GP but when I asked mine he reckoned that it would have to be your Neuro that would prescribe it and that you would have to be monitored while on it. Other than that I can't really find anything apart from general info online about it. Has anybody here managed to get it prescribed yet?


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    #1021
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    It's was only signed into law before the reshuffle, funding, like with fampyra is probably going to be an issue. I'd imagine a neuro would prescribe it for the moment?


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