Many of my friends and followers ask me,
"What's it like to live with Multiple Sclerosis?"
"What's it like to live with Multiple Sclerosis?"
That's a trick question because you won't get the same answer
from any two people living with MS.
Most people living with MS have remitting/relapsing MS,
that's me...
good times - bad times, good days - bad days, good hours - bad hours.
Exacerbations followed by periods of wellness or at the very least,
the lessing of symptoms.
MS is a disease in which the immune system eats away at the
protective covering of the nerves.
It is an unpredictable, often disabling disease of the central nervous system
that's disrupts the flow of information within the brain,
and between the brain and the body.
Symptoms range from mild to severe and are different for each person living with MS.
My symptoms are typical, pain being my number one problem.
I also deal with fatigue, weakness, numbness, spasticity, cognitive problems,
bladder problems and problems walking.
It would be awesome if I could transfer the numbness to my areas of pain,
of course, that is not to be.
Two less common MS symptoms I have are seizures and migraines.
Vision problems and optic neuritis are often one of the first symptoms of MS,
and are problems I have dealt with in the past.
There is no cure for Multiple Sclerosis,
but many treatments are available to slow it's progression.
but many treatments are available to slow it's progression.
I treat my MS and all the symptoms I have with medication.
The medications to treat MS work by suppressing the immune system,
therefore making me more susceptible to infections and germs.
The medications to treat MS work by suppressing the immune system,
therefore making me more susceptible to infections and germs.
This pretty jug holds everything I take daily.
The overflow goes here...
The colorful bins are filled to the top...
and
this is the reality of living with a chronic illness.
If you are interested, you can read more about MS here.
The National MS Society has some good information on their website.
I did not turn off comments, but no pity party please.
So many people ask me about my disease,
I wanted to do one informative post for everyone.
My life is not easy - but my blog is for sharing the happy moments,
and there are plenty of those to share.
22 comments:
What an informative post on MS, Debbie...thank you. I didn't realise all that medication was needed daily. You have the most wonderful attitude towards each day. Your blog is a happy place. A place which is always a delight to visit to see what fun destination you and your husband have just visited and to gaze upon the beautiful photos you capture.
hugs and prayers, always
That's a ton of meds. Sorry for your condition, but based on the tone of your posts I never could have known. In fact, I didn't know.
On the one hand I was amazed at the amount of meds you're on Debbie, but then, on the other, thank goodness for those meds.
Yes, your blog is a happy place and I love how so many things give you joy, and you're generous with your joy as you share it around.
Good on you Debbie, thanks for telling us more about your condition xx
Debbie, You are brave, strong and a lot of fun to know. You are a talented photographer, writer and devoted wife, mother and friend. I love your blog and get excited when you take me along on your adventures. I am blessed to know you via your posts. I was born with an autoimmune disease and understand the ups and downs of your days, your pain and being tired. The past few months I've had to fight battle after battle, and the side effects of the medication have been too much at times. I used to get mad at my body but now that I am older I am grateful to just be alive, everyday is a blessing. Please continue being you, just the way you are, an inspiration to me! Sending you a long distance hug! ~jackie~
Thank you for sharing Debbie. You are an inspiration to me as you are always so positive. You live a life out loud. You have not let M.S. define you. I like that. After living with Chronic Migraines for so long I don't know how you live with the other symptoms too. I pray for you. Thank you.
I hear there are many ups and downs, hopefully there will be a cure one day
Bravo, Debbie, for showing us how to live every day!
It is great to see you focusing on the good times. That attitude, alone will take you far.
You remind me so much of my daughter who shares your attitude. She does not let MS define her. Also she has said to me that is is possible to practice wellness even if you have a chronic disease and she does that. I think she and you are in many ways 'weller' and happier than many people who have less reason to complain. Hugs.
My husband's cousin (they were close and grew up together) passed away a few months ago from this disease. You have my every prayer for continued health.
Such an informative post Debbie.
You are an inspiration.
Your blog is a wonderful place for your many blog friends to visit.
Continued good wishes to you and the hubs.
All the best Jan
That gives a good perspective for us blog readers. You have my continuing long distance care.
Thank you so much for sharing this and it was VERY INFORMATIVE---I know little about this disease and was curious since you'd mentioned it a time or two, but I didn't want to pry or seem nosy! So glad you shared with us. You are very brave and such a positive person with such a beautiful outlook and blog that is so uplifting, I love to come what you post each time and always enjoy it!
You are an amzing woman and I respect you so much! Thanks you so much for telling us about your MS disease and how you are fighting it. You are truly an inspiration. What I admire most is you don't let it keep you down and you enjoy the moments of your good days. You do it all with a wonderful husband, family and you keep smiles on your faces. You are so good at showing us your precious moments. As you well know you are in my prayers dear friend. Keep up this inspiring attitude. Blessings and hugs!
If I didn't know, from following you for quite awhile, that you had MS, I wouldn't know.
The little trips you and hubs take, all the walking around you do to take your beautiful photos, your beautifully decorated home. How can someone with a chronic illness do all that...and never complain?
You ARE an amazing woman, Deb. You refuse to let your illness define you or your life!
It was very informative, I met my hubby's best friend when we were dating in High School and his mom had MS. She was in a wheelchair, I didn't know much about her disease, just what I had observed, so when I see that you are getting out and enjoying life it just made me so happy for you that you are able to get out and do things. This was also 35 years ago, I am sure they have more medicine now and know more. I just pray that you have more good days then bad and you can continue to add great days of enjoyment with your hubby!!
You are truly such a beautiful spirit, my friend, and truly an inspiration.
xo.
Strong and beautiful inside and out.There is no pity coming from me. I know you are the strongest woman I have never met. I admire that and you bring beauty to so many struggling with their own issues. HUGS HUGS xo B
Oh wow you really have a lot of medications there my friend. I'm glad you have good days to help ease the less than good ones.
This is, indeed, good information for family and friends of those with this disease. I think it is important to share this kind of a journey. It helps those with the same disease, but also those with other issues. My hubby is on a few pills for his prostate cancer. I've made him a chart to help him keep them straight. It also helps me to document it to keep it all straight.
All the best. Enjoy each day is what we try to do.
From the moment I found your blog, I have admired your positive attitude in dealing with MS. I admire you for fighting the symptoms, continuing to travel and blog, and enjoying your life! You have a beautiful spirit that encourages others!
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