You probably noticed that the name of this blog is “Love My MS Life.” I’m guessing many of you have wondered how I could be crazy enough to make such a statement. Who loves living with multiple sclerosis?!
I can assure you that I love nothing about MS. But I chose that name because I love life, and I acknowledge that MS is a huge part of my life. I can choose to hate it or I can choose to accept it and love my life the best I can. So I do the latter. Or at least I try.
But the truth is, there are days and weeks when I don’t love my MS life. There are physical and emotional issues I deal with on a daily basis that most people will never understand unless they live with this disease. Many of these things are invisible to the people around me, which can be frustrating and lonely. So I think it’s OK to admit that I often have hard days. Because I know you do too.
Here are some of the issues that I commonly struggle with. I’m sharing them not because I want to be a downer, but because I want you to know that I’m far from invincible. (Feel free to share your struggles or thoughts in the comments section at the end of this post).
1. Not knowing. No one really knows what his or her future holds. But the uncertainly that comes with living with MS is one of those things that I never really stop thinking about. Will I be walking in a year? Will I go blind before I get to see my grandchildren? My busy days take my mind elsewhere for a while, but for me, that little inkling of fear never fully goes away, no matter how much faith or hope I have.
2. Fear of becoming a burden. If my MS progresses, I will need assistance doing everyday tasks that I now take for granted. Being placed in a care facility is not something I want to happen, but there is a chance it will. I don’t want the people who love me to have to visit me when I may not even be able to communicate with them, let alone hug them. No thanks.
3. My finances. I’ve been on disability for a long time, which means money has always been tight. I’ve had over nine surgeries, along with many treatments such as chemotherapy in which I must pay 20% of the cost. A surgery that requires me to be in the hospital for three days can end up costing me over $5,000 out-of-pocket. Plain and simple: living with MS is expensive, and I worry about how I’ll be able to afford treatment for the rest of my life.
4. Dealing with the pain. There is pain associated with MS that is invisible. My legs have started aching — it’s almost all the time, and is often worse at night when I’d like to be sleeping. More often than not, one or both of my legs will go numb in the middle of the night and I’ve had to literally crawl to the bathroom when I need to pee. This nerve pain that stems from the brain can sometimes be treated with medication, but I can tell you I’ve tried a few of them and they gave me no relief. I rely mostly on stretching and exercise to try to ease the pain, but nothing really helps. I dread bed time knowing I won’t be getting nearly enough sleep. I try to explain the pain to family and friends, but again, without living it, you can’t understand it.
5. Worry. I know there’s not much productivity that can come out of worrying. But it’s extremely difficult not to go there even when you know it only causes stress. I’ve heard the saying: “Worrying does not empty today of its troubles, it empties tomorrow of its strength.” True, for sure. I try to keep this in mind.
6. Blindness. Since I lost the majority of my vision in my left eye at age 13, I’ve had bouts of optic neuritis and double vision more times than I can remember. Each time, I’m pumped full of IV steroids for three to five days. My biggest fear in regard to my MS is going blind. Hands down.
7. Forgetfulness. Cognitive dysfunction is very common among those with MS. People joke with me and say I have a selective memory, but forgetfulness is a real symptom that’s extremely frustrating for me. This “Cog-Fog” affects my short-term memory. I might not be able to recall the specifics of a conversation from a few days ago, but I do remember a lot of details from my childhood. I understand this happens to most people as we get older, but this has been an issue for me for quite some time…and I’m not that old. It’s the MS.
8. Bladder dysfunction. I often feel the effects of bladder dysfunction, an MS symptom that’s plagued me since my early 30s. It’s invisible and uncomfortable. And unless you experience it, it’s difficult to comprehend the physical and emotional toll it takes on you.
9. Weak immune system. With MS, the immune system is already compromised. So catching a common cold or flu can be a very bad thing. A cold turns into bronchitis; flu can land you in the ER hooked up to an IV for fluids. Thankfully, my friends and family understand this concern and will let me know if someone is sick so I can avoid that person like the plague — literally!
So now it’s all out in the open: my biggest stresses and fears about living with MS. Even me — someone who does my very best to live with hope and “love my MS life” — gets depressed sometimes and needs to rely on my favorite people, movies, and inspirational quotes to cheer me up and help me see past the challenges. It’s also really helpful for me to lean on the MS community for support. It makes me feel better when I remember that we’re all in this together.
Tricia,
Thank you for informing us of your challenges. You are in my thoughts and prayers. Your attitude is admirable, and I am sure goes a long way to help you cope.
May God give you grace as you wait for a cure.
Hugs,
Cheryl
I loved loved this post! This was perfect, you explained to the world what real MS is. I appreciate the bold truth that you are able to express. I am so lucky to have met you in SF in 1999.
I can identify with 4, 2, 1 and 7. I also struggle with muscles that refuse to do what I tell them and sometimes do their own thing! Oh and I choke on food…that’s not much fun. But I do appear so incredibly well to most people most of the time. Thank you for your post and the opportunity to reflect and share 🙂
We’ve been friends and known each other a long time. It’s posts like this that bring us in to your world to understand that much more about what you go through on a day to day basis. Great read and keep the posts coming!
Thank you for this post. It was like you were writing about me. I don’t know you and you don’t know me; but I totally get it. Thank you for posting this in our shared Facebook MS community.
Wow! Thank you for sharing such descriptive details about what you are going through. You’re right, those of us not living with MS can never really understand, but this post helps.
You’re amazing Tricia, and very much appreciated.
Unless you have MS or love someone with MS, it is doubtful that the significance of your words will be understood fully. I know how bad you feel most of the time, but not wanting it to be so transparent to those around you. It takes a lot of courage to come clean about what you deal with on a daily basis. As your Mom, I have watched as each new concern has been raised and each new symptom appear. All the time waiting for a cure and praying it comes within your lifetime. You are my hero.
Your constant battle and the ability to face it head on are unbelievable. One of my favorite secretaries contacted MS in her late twenties. She married one of my best friends and have often shared her experiences with me. There will be a cure for this dreaded disease someday and hopefully it comes in your lifetime. Keep smiling and be happy!
Though I am another with MS, quite a lot of your symptoms I’ve never had. I am usless from waist down [and with all that it means]. When it’s time for a hospital visit for Tysabri, it’s a case of “our baby girl is havng an outing”, you gotta laugh. As for the pain, when someone says they’ve got a headache, they just take an asprin and that’s it. You can’t see that pain, but people believe you have a headache. Keep on keeping strong and positive – you’ve opened our eyes to another dimension of MS. Thank you!
I love you Tricia like you were one of my own kids and I LOVE this post is particular. I learned so much that I didn’t know about the pain, I knew about the numbness. We all have our own worries and stressors but yours are a million times more than normal. I was actually mid anxiety attack when I read this blog and I realized how stupid it was. You truly are my hero!
Thank you. I was just diagnosed with RRMS this week and because my symptoms are mild right now I am concerned that I’m ignoring just how serious my condition is.
I coudln’t have said it better myself. Thank you Tricia.
Tricia. I just found your page. I was diagnosed the first week of Feb losing my vision in my right eye out if nowhere why driving my car to work. Optic Nueritis. After lots of testing and a 5 day hospital stay I was diagnosed. I have been progressively getting more and more symptoms have no had a remission they just had me on home IV steroids I feel everything you have written about I am almost to the point that I just want to say I’m fine when asked!!! because people are starting to think its in my head or subconscious asthey say because I am out on temp disability (too much time on my hands). I’m afraid to drive since my vision is still gone in rt eye with blurred vision in left at times and loss of feeling randomly in my right leg and arm More afraid of what may happen if I don’t respond quickly enough and hurt someone or myself. I know this may sound crazy but don’t feel that I have enough thought process to take a chance but I’m tired of relying on family and friends not that they care but more of my independence I feel I am inconveniencing them :). How do you cope? now to your point of constant pain and headaches I am living that everyday. I just want a day of feeling ok after 3 months of not… I’m tired of complaining. I’m Mad!!! I’m sorry I just went off here. But finding people that understand is so very hard. Thank you for allowing me to comment. I’m going to try and Love my MSlife as you are yours. Explaining and educating is definitely an issue as we continue on this journey. Be well. And thank you again for writing the truth. Jane.
I think you hit the nail on the head with the things that go through the minds of us MS gals. Thank you for sharing your heart transparently.
21 years of MS generally a mild case up till recently. I could write 2 pages of symptoms that have come and gone, a few have stayed. My biggest fear, is that those 2 pages of symptoms would come back and would not go away, so yes I agree with your #1. The issue of fear of the unknown and the “WHAT IF”. But, Faith, Hope & Love are in me and will never go away. “I’m being followed by a moon shadow” – Cat Stevens
Bless you and all your MS-peeps, Englewood-Pappaw
You hit the nail on the head with this one. Those are all of my fears as well. The funny thing is – these are all issues that could happen to anyone at anytime. It’s just more “in your face” when you have MS. MS is life speeded up! Great article. Great writing!
This is absolutely compelling. Hope you’re hanging in there. Shoot me an email sometime. steveperttula@gmail.com.
This is my first time here – I hope I remember to come back and check your blog again! Thanks for the post.
Tricia I am SO with you. Fear is my silent partner. Lately though it has motivated me to fight harder against the MS. The grand-kid thing did it. I thought for a minute (false alarm) that my first one was coming. I had never even considered it but, I guess it’s inevitably. Well, the thought of not being physically able to enjoy them…really pissed me off. I began to rehab with much more determination 🙂 A full recovery is in my future. The grand-baby can wait.
About your leg issues. I’ve had that same night time thing and, get this! It was restless leg syndrome. My neurologist wouldn’t even consider it when I suggested it. “Absolutely not, it’s your MS!”. Well, my G.P. identified VERY low iron. I was amazed that when we fixed that (iron infusions) my evening leg pain stopped. So did my ice-chewing.
Hey Tricia, u still in the area?
I really connected with everything you said. It makes me so angry that my friends and family think I’m making up excuses or they think MS is all I talk about now when they don’t understand it is always in your face. Two hours after I wake up I start getting fog and fatigue and the rest if the day is like walking through water or on sand. People think I’ve stopped living because I’m afraid when really it’s because I’m so exhausted I feel drunk or my eyes are crossing and I can’t drive and I can’t always comprehend what they say or I get over stimulated. All of which makes my MS worse if I don’t take it easy and rest as much as possible. It makes me livid that all the things I loved to do I can’t, and then get accused of making up excuses. Makes me feel completely alone and misunderstood…
Beautifully written Tricia. You touched on some very key issues for people living with MS. Your openness, candor and willingness to share will help definitely help others.
I do not have MS but what Estizer had to say about iron deficiency rang a bell for me. Last year I found out I was very iron deficient and had to have 2 blood transfusions and 8 treatments of Venafor which is an iron transfusion.
As you know my beautiful daughter has MS and lives in a world of pain. It is so difficult to watch somebody you love suffer like this and there is no cure for the pain.
Let’s all send out positive energy and prayers that very soon there will be a cure for MS.
I keep meaning to call you – I am going to get your number from my daughter and send you a text. When you feel like talking call me.