Living this way is certainly different than anything I’ve experienced before! This way meaning as a member of the chronically ill. I mentioned before that for the first 8 years of my MS journey the disease was relatively incognito. I was able to straddle two worlds. One is the land of the healthy and the other the home of the ill. Although now I often wonder if trying to appear healthy as long as I did actually stressed my body into the condition that I’m in now. You know working too much and too long. Exercising, getting overheated, and pushing myself. But this type of thinking gets me nowhere.
My problem is that I am no longer able to fake it. I used to secretly blend into both worlds. Now when you see me, you’ll immediately know that something is going on. I am still trying to learn how to function in my new terrain where all my flaws are out front and open.
Recently I was getting ready to meet some friends for lunch and it dawned on me that I wasn’t sure if the venue was handicap accessible. You would think that most places are accessible since we’re in 2012. But in New Orleans, Louisiana think again! Often businesses can get away with not making the required accommodations under the shield of being “historic” and unable to change.
Usually I just take a drive by and check out the entrance beforehand. It always makes me a little mad because I shouldn’t have to. This is why I feel as if I’m living in one world but begging for acceptance into another. For this reason I do a lot of advocacy work. I post a lot of it on this site and across the web. Maybe one day more people will know about Multiple Sclerosis, maybe they won’t. I just have to believe that by just having it, it doesn’t diminish who I am. If I cease to seek the difference between myself and others, I’m pretty sure I’d be a lot better off.
Because, after all is said and done I bet all members of each world have a lot more in common than we think.
Amazingly same in London with restaurants, shops and even the underground!
t
Nat, And I thought this was one of a kind!
Nat
Nat, I thought it was just us!
Thanks for sharing this Nicole. Your post inspired me so I have linked to it and posted some words of my own.
Cheers and many thanks for sharing!
Thanks I’ll check it out!
Yep, it keeps jumping out at us. I had a meeting last week at a person’s house and didn’t give a thought to access – steep stairs front and back, so wasn’t an attractive entrance or exit… or putting change back into my wallet and the notes won’t go in while standing at the checkout with the queue watching. As some wise person said recently… “MS, the gift that keeps on taking.” But we are still allowed to straddle successfully on the inside. Thanks for the words.
Ian, good to see ya. That’s cute. Straddling on the inside.
I was diagnosed 3 1/2 years ago and just now my gait is off enough that people are asking me why am I limping. I have also started to notice I can’t do as much as I think I should be able to do or used to do. I am finally considering the fact that fatigue may be an issue for me. Acceptance is coming in baby steps. I am newly single again after 26 years of marriage. I have a great amount of fear about never having a meaningful/romantic relationship again. I see the glass as half full until about 6 pm when I crash from my day at the office. Then suddenly the glass in half empty and has a huge crack in it. Reading your comments about living in both worlds rings true for me.
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Lollie, Thanks for reading. I put out new posts on Tuesdays.
You know it’s just that looking back over things when I was right where you are I could have been a bit more honest with myself.But to tell you the truth I’m not sure I would have actually done anything differently! What do they say about hind sight?
I blend, most of the time. I am a full time busy mommy. Yesterday at pick up I was fully reclined in my mini van while waiting for kids to get out of school (lumbar puncture leakage). One of my mommy friends ran up to my van with clothes for my son and asked what was wrong. I told her, about the lumbar puncture…possible ms….She was cool about it, but, it still scared me to share anything, I know people don’t understand what it is and my biggest fear is that they will think I can’t take care of my kids or that they won’t let their kids come visit, because they think I am “sick” . So in between dinner and baseball practice I was in the Emergency Room while they were trying to figure out whether or not I needed a blood patch. I still blend, but I wear a mask. Thank you for your weekly posts, I look forward to your voice. Love and light,
Olivia
Olivia, Thanks for reading my words, I’m humbled that you look forward to them.
Please know that I don’t take this lightly.Thanks again and I think that the road doesn’t necessarily get easier, we just grow better at navigating it!
You mentioned working so hard being your downfall when I thought it was a good thing. i thought dealing with this you had to keep active. Although yes I have my days of feeling weak and it trying to defeat me. But I basically don’t staying idol to cause me to miss out on anything nor cause the destruction of me.
Monique, I meant years ago when I use to deliberately try to hide it. I use to take on too much. Not now, though. Now it just is what it is.Today I do try to stay as active as I can.
Hi Nicole,
I was scared that I would be alienated by the “land of the healthy” when I started using a chair last year. There is really no hiding it, and I felt really self conscious, knowing people will look and wonder what’s wrong with me, since I’m obviously no longer part of the land of the healthy. What I’ve found is, if I look back at them, straight in the eye and smile or say ” how’s it going?” they generally act pretty normal and I no longer feel like there is such a big divide btw us. Sometimes they even share their own ailments. I constantly try to remind myself that everyone has their own “cross to bear” and mine is just out there in the open. I like what you said about trying to spend less time worrying about differences between yourself and others. It is such good advice, but so difficult to do. Why is that?
Jen, I think that’s the million dollar question. In the end I usually quiet myself my saying, if I knew better I’d do better. Sometimes it works, sometimes it doesn’t. Thanks for reading!
This is for all the newly dx MS’ers out there…DO NOT fall nto that group of people who deny what they have…it’s MS & it is unpredictable! You could be fine this week, month or year, but next week, month or year it can be a totally different animal! Read up on it, LISTEN & OBSERVE those who currently have it & struggle daily. By denying your disease you are doing an injustice to yourself. So what if you limp, slur or can’t walk. It is what it is, can’t change it. I am in a scooter 24/7 & at this stage, I really don’t care what people think. I just wish things/places were more accessable. Whoever “designs” these “HA” places has never watched or known a disabled person…mane obstacles. Nicole, keep up the good work, we as MS’ERS need to stay informed & band together.
Kim, Thanks. You do the same! Stay passionate.
Hello Nicole, I’m 27 yes old dx with MS for a year now reading this was insightful. For a while I dealt with acceptance of this and often ask myself the common question of how? Or where? My biggest fear is living in the not knowing my expectation of this. I am dealing with a full plate and don’t want this to defeat me. I want before I fully give my body rest the notion of achievement. So now reading this gave me some confusion and thankful I found this site.
Monique, I’m glad you found the site too! Please know that I release new posts on Tuesdays, I’m sorry the site gave you some confusion though.
Is there anything I can clear up? I wish you all the best moving forward!
hi, i am not in a chair, is use a cane but i too scope the venue first, call beforehand asking questions about accessibilityand restroom facilities. i attend events for a local center for independent living, and you would be surprised at how often the locations are not accessible.. imagine that! some of my new friends are in wheelchairs or have an assisted device that makes getting in or out something that must be considered before accepting an invitation.. i never gave this any consideration until… ms. opened my eyes to all the things that persons with disabilities have to encounter, deal with , and sometimes even demand. i am now that person.
ellajean, Like I told someone else it changes the game plan.
So glad you wrote about this! I constantly struggle not to let people see my disabilities. I am a middle-aged woman who you would think could accept this better – but, I can’t! I feel like I die a little bit inside every time someone sees me struggling. It just seems my world is getting smaller and smaller.
Margie, I did that for years! Then had the nerve to be devastated when I developed a limp! Now I would kill to have just that limp! Even a cane.
Be nice to yourself and just be who you are! I hate when people simplify how I’m feeling so I apologize in advance if I come across doing the same.
Absolutely! You’ve taught me more than I would probably have ever known. I plan to keep reading… Luv Ya!
Lesley, Thanks for stopping by! It’s always nice to see a familiar name. Luv Ya too!
Hi Nicole. I have just discovered your site and it is the best one I’ve found for dealing with my ms (diagnosed in 2008). You discuss the most important, in my opinion, aspect of dealing with this unbelievible challenging condition: getting one’s head right in order to meet the physical challenges. Thank you and please keep writing. You have a new follower.
Priscilla, Thanks so much. Glad to have you aboard! I post on Tuesdays.
hi guys, im also in a chair. we just have to plan, plan and then plan. i always call or go online to see the layout. when booking a hotel u have to get a handicap room and make sure its accessible. i also bought 2 portable ramps 6′ and 4′ which comes in handy when entering others homes. as far as the bathroom ill wear an adult diaper if im unsure of the accessibility, i also have pills that will keep my bladder quiet for hours .i just keep in mind that I am responsible for MY comfort, i dont expect for others to accomidate me all the time, sometimes its impossible. i do turn down invites because of the obvious reasons and i get sad when i cant do what everyone else does, but it comes with the ms. lets still enjoy life and dont spend precious time.making others m
dee
It sure sounds you are adapting well! I need to take lessons from you!
Once again, well said, Nicole. You always make me feel less alone. The law here in Hawaii is any building built before 1971 does not have to be handicap accessible. Maybe that’s the rule everywhere. I took a cruise to Alaska and the ship was only partly accessible. While the small towns we visited had accessible public transport, most of the shops and restaurants were not accessible. I had to content myself with going down the sidewalks and looking in the windows. I went to Lahaina on Maui, same story. In March we took a family vacation to Kauai. Imagine my surprise when we arrived at the condo and found it was a 3-story walkup, and our room was on the third floor. There had been nothing on the website about needing to walk up 3 flights of steps. There are parts of downtown Honolulu where not much is accessible. I belong to the mystery writer’s group Sisters In Crime. They moved their meetings to a library that is not handicap accessible and I could no longer attend. They asked me to be their guest speaker last month but I had to decline. Come to think of it, I can’t get into most of my friends’ houses. I missed a big party just this past Saturday because there was a step up into the house. In the past I’ve gone to the trouble of getting all dressed up for a party, only to find I couldn’t get into the home where the party is held. Now I ask first. And you’d be surprised how many people believe their house is accessible when in reality there’s a step up to get inside.
Oh, and here’s a good one. I signed up to do the MS Walk, took my daughter and a friend with me. And guess what? Part of the route was not wheelchair accessible!!!
There are whole countries where it’s pretty much impossible to tour around by wheelchair. My husband and daughter recently went to Israel and I couldn’t go for this reason. I recall Greece being the same, and I’m sure there are others. Now my husband wants to go back to Israel for a couple months, and I know there’s no way I can go with him.
People complain about having an invisible disease. How I wish I could go back to those days.
Laurie, I really didn’t realize how commonplace this problem is! Man, would I like to go back to the invisible days! But, do I really want to get up at 6 every morning again?
Hi Nicole,
Yes, I can think of all the places I’d like to go but can’t. There’s a really cool restaurant that is accessible to me if I use two canes to walk in, but to get to a bathroom it’s up a flight of stairs! When on vacation in Santa Fe with my daughter, she pushed me in a wheel chair. She found a restaurant with an elevator, but when we got there, they were closed. They only served dinner, and the restaurant serving lunch was up a flight of stairs! Or the places with doors too heavy to open.
I lived in both worlds for a long time. Bisbee, AZ is like New Orleans with “historic” designation so the businesses downtown don’t have to comply. I pick and choose where I go with friends carefully. Funny thing is, if all businesses followed ADA it would make it easier for everybody, not just disabled.
I acknowledge that I’m no longer invisible as a disabled person, it’s very obvious. Most of the time it doesn’t bother me much. My friends are great and include me often. It takes just that more bit of energy having to case the joint first.
Keep writing, Nicole. I enjoy your insights.
Bert, Thanks so much. It feels great to be appreciated!
Before you go to the restaurant or any other establishments, try calling them first to see it they are accessible for those with disabilities. Keep a record of this information so that the next time you can reference it when you need to.
Mary,
Good idea! I’ll do that!
Hi Nicole,
I too, straddled the fence for almost 20 yrs. After my MS sx diminished 4 years into it, I went back to school for healthcare and worked sucessfully. I followed a strict Don’t Tell unless it is a emergency, fortunate that I never had one serious enough to Tell !
Overwhelming emotional and physical stress brought my MS back in full force. I had adapted so well to keeping myself in check that I did not notice or recognize that my disease was scrreaming for attention.
Forced to pay attention and learn about how MS affects me and what it actually means to me was a huge eye opener. ( Shutting the tightly while clicking my heels together did not work)
It will be 6 years in June that I stopped working in my field, as it turns out, that was my last time earning money to sustain my keep. It was not until a few months ago that I accepted that I can not do so very many of the activities that were once commonplace to me. I am still learning the financial ins and outs, or how to survive my new life that is just about the national poverty line. And, find activities that give me meaning or at least an incentive to keep at it.
I sympathize with you about accessible activities and having to plan out your day out before you get to it. I now know which gas station/fast food/ chain stores have close to the entrance clean bathrooms that are on routes that I drive on.
You are doing well at writing, I llike your blogs and articles-informative and humorous. Please keep at it!! They are an inspiration to me!!!
Renee, It’s so comforting to know that I haven’t missed the mark! Thanks for reading. Thanks even more for continuing to return!
So much of what you say here rings true! I, too, can no longer play the role of ‘normal person.’ Anyone who sees my walk (what’s left of it,) knows I’m disabled. Straddling that other world was exhausting, though!
I also live each day with “what ifs.” Will this place be accessible? Will I be able to make it with my walker? What if I’m far from the restroom? What if these shoes make me trip? Every time I plan to do something, I need to go through my ‘what if’ list. I really hate this crappy disease!
Peace,
Muff
Muff, It’s like catering to a extra chid.
Hi Nicole, as always I look forward to seeing your new posts. I just love the way you keep it real. Your post about trying to appear healthy. I must admit Diag. in 2002 and appeared healthy until 2008 after my sisters death. In hindesight I see that I allowed my family to put more on me than I should have while my husband was saying dont do it; I didn’t listen then came time for the cane then it was obvious and still most didn’t get it. Now I have no trouble with nooooo and saying I’m sick. As a result not to many calls anymore and I’m fine with that because I feel some of the pressure is off to continue to perform. I’m like you too I have to scope out my environment before I decide to go. God Bless you many one day soon we will recieve a blessing of more mobility!
Angela, I agree I don’t get much pressure in that way, but somehow it leaves feeing a bit left out.
Hi Nicole,
I know exactly what you mean about living the incognito life. Although I was only diagnosed three years ago, I had MS for years before. I was able to push myself trying to keep up with the citizens of the land of the healthy until I pushed right out of it. Sometimes I get so tired and frustrated trying to keep up. I stop, sit, breathe, relax my thoughts before I come to the realization that I am who I am, not what I have. This may take days or weeks but eventually I’ll remember.
Take good care.
Arletha, I forget I’m not what I have, but I think that has to do more with feminine issues for me! You know wanting to have things your peers have!
Nicole, everything that has to do with this disease just sucks. Chronically ill is a harsh word but it is true. I appear healthy and I don’t know how long I will hold up. I am so grateful but terrified. Sometimes I feel like I am waiting for the shoe to drop. This disease messes with everything. I try to stay strong. lisa
Lisa,
Your are right. It like waiting for the ball to drop. BUT we have some control over our disposition and attitude in the meantime!
I went to six physical therapy sessions a while ago. I was so excited that I just put everything into it. I was so excited to be experiencing exercise again. I got way too hot each session and by the end of six sessions (two sessions a week) I had worn myself out. I had to cancel my last two sessions. Before I started PT I was walking really well and after six sessions I wasn’t.
It took me about a month to recover and I still don’t feel back up to where I was.
What I learned is not that physical therapy is bad, but that things have changed. Intense exercise, or even moderate exercise, is not an option for me anymore. My new rule is that good exercise means feeling approximately the same after as before. That means, for me, thing like moderate walking, stretching, and balance is fine. Exertion of any kind is not.
Your post reminded me of my experienced because what I had to realize is that things have changed… a lot. Some things are just off the table now, and probably won’t be coming back, at least until there might be way more effective treatments. It made me very sad for a while, but I’m happy that I’ll be avoiding that scenario in the future.
Matt, That’s a good tip. I never thought about feeling the same after as before exercise. That should be my goal now.