voxpop

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.

1 Comment Posted on Patient Talk

Have you ever been discriminated against because of your medical situation? Please take our poll.

Poll of the Week

Poll of the Week

Thanks for dropping round to our latest poll.

This time it is for some research for our next VoxPop blog. This blog will look at discrimination at work of people who have an acute or chronic medical condition.

It would be great if you could take the poll below to help us get a feel for the extent discrimination people fac.


13 Comments Posted on Patient Talk

Chronic Pain VoxPop. What are the challenges of living with chronic pain?

Chronic Pain VoxPop.

Chronic Pain VoxPop.

Welcome to the first in an occasional series of blogs that look at the real lives of people with various different medical conditions and allows them to tell their stories in their own words.  The aim of this series is to allow us; and you, our readers, to explore what real people  actually think. As you may know PatientTalk.Org runs a series of groups and pages on Facebook and other social media.  For this VoxPop blog we asked our communities the simple question “What are the biggest challenges of living with chronic pain?”.  This gives an opportunity for our members to share their thoughts and opinions on the subject.  The VoxPop goes beyond just sharing our communities’ view.  Our hope is that the readers of this blog will, in turn, contribute their views and comment on other peoples’ opinions.

The results (of this VoxPop) are fascinating.  Here are twelve of the most typical and also the most interesting comments from our readers:-

  • “Feeling useless. As I was never of the go. . Feel as if my family don’t understand it all. The pain that we are all in and feel as if no one believes you.”
  • “Being conceived as a liar or an addict.”
  • “Convincing people I am actually in pain!! a family member said that she’d love to earn money suppose to be in pain but able to post pictures on facebook!”
  • “Being in pain non stop an having to clean my house and laundry some days it’s hard to get out of bed!! I have family members saying your always saying your sick!! Just one day o would love for the people that say that stuff an see how they handle non stop pain an having to be a wife and a mom of 2 teenage boys!:'(“
  • “Not being able to make long term plans. Stopped joining things that I enjoy,as having to cancel at the last min. has become all too frequent.”
  • “Unpredictability of how you feel day to day…pain meds that make you even more tired…neuro-typical family and friends having no idea what you are living with moment to moment…not wanting to complain”
  • “Coming to terms with the fact that I will never feel like I used to before I started having symptoms & my diagnosis. Hard to fully comprehend that the pain, fatigue, & multiple other symptoms will be apart of daily life forever.”
  • “The biggest challenge for me is that it has totally changed my lifestyle, and the dark way that makes me not able to be counted on is a challenge I hate the most. It has isolated a used to be extremely social person.”
  • “Living in the 21st century but yet there is so little awareness (known) about Ankylosing Spondylitis…something is very frustrating about this and the lack of medical coverage to pay for us yo be guinea pigs!”
  • “The pain changes – it goes from burning to shooting, to painful spasms. And all those types of pain are invisible so nobody could understand how it is to deal with them. Medication barely helps and I hate to take high doses so try to cope with as little meds as I can, also heating pads and ice. Tired of ever-changing pain, it almost never goes away, just changes.”
  • “my husband agrees with you…says the fatigue is the worst. Says the pain zaps all his energy causing overwhelming fatigue.”
  • “Everything! I’ve seen myself change from a bright young woman with loads of potential and hope for the future, into a bitter middle-aged woman who feels useless and worthless with little to no hope at all.”

As I said these are typical of the responses we received.   But how true are they for you?

Please share you views on these quotes using the comments box below.  What other areas should be covered?  Again please share below!

Thanks very much in advance!