MultipleSclerosisTalk

Leave a comment Posted on Fibromyalgia, Multiple Sclerosis

Fibro Cruise – Find out more about this innovative vacation and networking opportunity for people with fibromyalgia and multiple sclerosis


Fibro Cruise

Fibro Cruise

A couple of days ago I received a fascinating email on MultipleSclerosisTalk which is one of the online Facebook groups we run.

Julie-Anne Braun, an award-winning author and professional speaker, has written a short introduction to Fibro Cruise which we are sharing with you as a guest post.

She writes “It began with a much smaller event we call “East Meets West.” (Started by my Fibro Cruise partner, Sandy Larson.) EMW is an annual gathering where a number of us, who met in Facebook fibro groups, get together in a cabin for 4-5 days.

In 2011, I was “sponsored” to attend. (Someone paid my way, but I can’t say who – I have my suspicions, but am not positive.) I was very nervous, as I had never met any of these people in person. Once I met everyone, and settled in, the weekend was truly life changing for me! I realized just how often, and how much, I tried to hide my pain, or make excuses for it. Suddenly, I didn’t have to do that. If I needed to go lay down, nobody questioned it. They understood. When I was in a terrible flare on the third day, my roommates brought my breakfast upstairs for me. We laughed, we cried, we shared the things we hated about fibro and the things we were grateful for. I made friends that weekend that I now call my sisters.


After attending my second East Meets West in 2012, I was determined to find a way for more people to share this experience. Since it’s not easy to find a cabin for more than 20 people at one time, I considered cruising. I have always loved cruising, and worked in the travel industry before fibro. I reached out to Sandy and a couple of other women, and asked if they would join me in developing Fibro Cruise.

We had our first Fibro Cruise in March of this year. While it was small, it was also spectacular. Everyone in the group had a fabulous time, and plans to attend again. We had to cancel plans for Fibro Cruise 2016 due to some admin conflicts, not enough bookings, and it being too close to the last one for some. As we started planning for 2017, a friend of mine with M.S. asked if she could join us. I have a number of friends with M.S., and thought it would be a good fit to invite the M.S. community to join us.

That’s where we are to this point. We leave for the fifth annual EMW this Wednesday. I am looking forward to it, and will be recording my experience from there.

P.S. It’s worth noting that we DO hope to offer sponsorships for Fibro Cruise in the future. We have our articles of incorporation, and are trying to raise the money to file for 501c3 status so that we may seek donations. ”

To find out more please check out their web site here.

30 Comments Posted on Multiple Sclerosis

Myths about multiple sclerosis – which MS myth gets you the most angry?

Tie One on for Multiple Sclerosis

Tie One on for Multiple Sclerosis

As many of you know we run a Facebook page called MultipleSclerosisTalk. If you are not a member you can join by clicking here.

Members of the group use it for all kinds of things. To ask questions, share information and experiences but also to vent.

This could be because of the therapy they are using or just because of the effect of the symptoms of multiple sclerosis on their lives. But sometimes it is because of the things they are told.  Firstly by the things they are told by the people around them. Donnee Spencer’s infographic “I don’t look sick“ has rightly become an internet legend.

But, sadly, it can also be things that healthcare professionals have said to them.

A few days ago one of our readers mentioned that she had been told that “Multiple Sclerosis does not cause pain”.  Which would come as news to everyone in the MS community I’d have thought.

Now it occurred to me that there are loads of these kinds of myths (ie total rubbish) doing the rounds.  The purpose of this blog is to give our readers the opportunity to share the myths about MS (and pain) they hate the most.

It should also give us a list of things to share with people who have just been diagnosed with multiple sclerosis.

So it would be great if you could use the comments box below to share the things that have been said to you about multiple sclerosis which irritate you the most.

 

paxtonfan Jamie OConnor staceysnowdrop Wasn’t Stacey just giving an example of things people say that are annoying?
paxtonfan devsmum MarciaMarie I think she was posting that as one of those examples of what people say that is annoying.
JenniferVillegas But have you tried (something ridiculous)? That could help get rid of it.
KimPriebe You will be in a wheelchair soon!!!
Hbonn1 Yeah, I have a friend with ME…
Or
I’m surprised they let you have children!
KristinaElizabethShepard “you can’t tell me you were in 10/10 pain yesterday and none today”
Tcarr4151976 “I had a 2nd cousin’s sister’s boyfriend’s hairdresser who cured MS by thinking hard about it not affecting him”
Tcarr4151976 “I know just how you feel, I am tired all the time too”
ShellyTomac You are just a lazy ass and need to get a job!!!
AmberKellamBrodie “You don’t appreciate life, and you just need to try harder”. My mother in law said that to me 3 days ago. I have PPMS and have had it for quite a while. Somedays I need a cane, some days my walker. Nevertheless, I can’t do anything that requires a great deal of walking. The power in my legs just goes away.
LoriBatchelor Gee, that looks like fun!–referring to my mobility scooter!
SUZCAM But you look so well
tstokes I am not sure who is worse Ann Romney or Dr. Wahl.  Remission? or curing your MS with diet?
Kellyhennigan If you stay in the heat more you’ll just get used to it and won’t have any more side affects.
DD_UK are you drunk? – I fall a lot, and my sense of balance is shot
karenmckinna people keep telling me that im probably tired because I sleep too much – 8 hrs a night Mon-Thurs & 10 ish a night Fri – Sun.
SherrieGoldberg I always get “you look fine” or “everyone has problems. I get migraines”
challengeme People don’t understand that the disease is different in everyone, and everyone is different.  So not everyone will have the same issues.
BeckySenette “I have restless leg syndrome so I totally understand what you’re going through”
DanaSeatonLopez You look just fine or isn’t that what Jerry Lewis raises money for?
AricaDavis If you’d just sleep more you’d be fine
Jamie OConnor staceysnowdrop no! It’s an autoimmune disease
devsmum MarciaMarie this may not be the case for ever tho Marcia – depends on what type of MS they have, how long they have had it, and where the damage is. We are all affected quite differently…. this is something really important to understand. I got MS at 16 – but did not have walking difficulties until 36…..
MarciaMarie I know someone with ms and they can walk just fine.
staceysnowdrop Isn’t MS a form of arthritis?
DarlaWalker that we all end up in a wheelchair
DarlaWalker that we all end up in a wheelchair
Kelloggs1226 I hate when people tell me that
Kelloggs1226 If you just changed your diet you’d be fine
boumalicious Oh, that’s like ME isn’t it? (get told that a lot!)

It’s infectious

It’s hereditary
16 Comments Posted on Multiple Sclerosis

Life with Multiple Sclerosis. Some tips about living with MS from People with MS.

Multiple Sclerosis Support

Multiple Sclerosis Research

A month or so ago we asked the readers of our Facebook page MultipleSclerosisTalk to share their answers to the question “Have you any advice for somebody who has just been diagnosed with multiple sclerosis?”. The results were so successful we decided to share then om a VoxPop blog called Water and Walking.

A couple of days ago we decided to follow up the blog post with another asking People with Multiple Sclerosis (PwMS) what tips they would like to share about living with MS with our readers.

The results were incredible so we decided to share a few with you. We have got nearly 500 so far so can’t include them all. It would be great if you wanted to share your ideas and suggestions in the comments section below.

Christina’s was the most popular when she said “Take a deep breath and always look forward never backwards. Times will get hard occasionally but you must be grateful for the good times. Never give up and fight for your independence and never ever give up. You got this, even if you think you don’t.” Traci supported this saying “You are stronger than you think you are”.

Laura emphasised the need to take control through research 2Research, research, research. Avoid the DMD’s because they don’t work! MS can be controlled by diet. Food is our medicine! Check out Swanks diet for MS. I have been following this for 9 months and I’m feeling great. I also take LDN and supplements. Recovery and healing are possible if you take the right road. A strong positive mindset is also key….”

Isla said “find yourself a holistic doctor”.

Jackie was very practical “Heat is your enemy. Try to stay cool. Your body will start to feel better once you cool down.”.

Sharri had lots of great ideas “Don’t feel bad for feeling bad. Keep your sense of humor. Increase your sense of humor. Join an MS / chat group, local support group and fun www.meetup. com groups.
Nutritional supplements also help you feel better and the meds to work better. Eat the fish and spit out the bones of what people say who do not have MS. Nurture and do kind things for yourself.
Know that you will have good days, great days, bad days and horrible days. ”

Like many of our readers Christina felt we should listen to our bodies ” Don’t let MS change who you are! Biggest challenge was learning to listen to my body, cognitive issues, and the MS Fatigue (which is not the normal fatigue people have) If you can learn to listen to your body, eat healthy and exercise and most important stay true to who you are and maintain a positive attitude (you may have MS but MS does not have you or define you) then you will see MS becomes more of the “Ah” that is why I feel this way or that makes sense now and can move forward. I took it as a positive when I was diagnosed (March 2012) as I honestly thought I was losing my mind (cognitive is bad for me) and I did not understand the fatigue I was having. It was a relief to know there was a reason for it and now I know what to do to help with these issues. Attitude is the key to MS success (as with any illness). I find if I keep moving I’m fine. It is when I give in to MS that I get bad. It is a choice you have to make every day if you are going to get up or let MS win. I REFUSE to give in to it. There are many days I forget I even have MS and again, that is a choice I make. Make sure your family and friends are aware that you are still you and that YOU will let them know if you cannot do something as only you know how you feel and your limitations (which you learn as you go but always try). I have amazing support with all of my family and friends. I asked them to not treat me any differently and I promised I would let them know if I needed help (which I admit is hard for me to ask for any help, I’m very stubborn) but there are things you will need to say “hey, my body does not react well if I did this, can you help”. You will be amazed by taking one day at a time, one breath at a time how well you will be able to handle your MS and live life just like you did prior to your diagnosis. Research the different types of MS and make sure you understand which level you are diagnosed. Unfortunately, there are more severe cases of MS and I pray for those with the more severe cases. So we cannot dismiss what we have but we can listen to what our body tells us and make the right choice to get up and live! Prayers as you begin learning your new path in life.”

Finally Georgia went the other way and said “Don’t listen to other people’s “advice” that don’t have MS and have absolutely no idea what you may be going through! Only you know your body, no one else does!”

So what do you think about these tips? Do you have any you would like to share? If so please do use the comments section below to add your ideas.

Thanks very much in advance.