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Ball and Chain of Multiple Sclerosis

Ball and Chain of Multiple Sclerosis

Recently, have you been able to get up and go somewhere without having to plan? Have you been able to leave the house with out making sure you’re covered medicine wise? Don’t forget you need to expect the unexpected; you need to be prepared for what COULD happen.

Mental checklist

Does any of the above sound familiar? Do you have to go through everything and ask yourself if you have everything you need?

Let me start by explaining that pre-Multiple Sclerosis, I never used purses. I used my pockets and that was it. Personally, I really do not like purses because I always put too much in the purse and then I can’t find anything.

One of the things that I really miss that doesn’t seem as obvious as other things, is being able to leave without the ol’ Ball and Chain of MS.

Having emergency supplies on hand

I didn’t have to worry about making sure I have all medicines I could possibly need and that they were filled and I wasn’t running low at all. I also believe my husband enjoyed the fact that I didn’t take as long to leave to go somewhere.

Don’t get me wrong; I’ll pack up what I need ahead of time for out-of-town trips. Although, it never fails that once I get in the car and the car is put in reverse, I remember something I forgot. All the while I’m thinking to myself… I just want to leave the house without having to take half, if not all, of my personal pharmacy with me. Let me also explain that I have left the house without my ‘ball and chain’ so to speak, and I don’t mean my husband.

Making a big mistake

I was going to the grocery store not too far from where we live, I wasn’t going to be gone long. That certain day, I had felt amazing that specific day. I don’t need to lug around a heavy purse with my life in it, right?

Wrong! I was very wrong. For the record I don’t like admitting I was wrong, ever. But I just have to say that this was the biggest mistake I’ve made in a very LONG time. I didn’t plan for the store to be packed, due to the time of the day I was going.

Sensory overload

However, it was packed… which then led to me having ‘sensory overload’ while there. This happened to occur in the middle of the summer in Texas, so then I got overheated to top it all off.

So, I begin to contemplate what to do… Should I leave my groceries and go home, or should I finish up and check out, so I don’t have to come back. Did I mention that I’m a homebody? I don’t like to leave the comfort of my home if I don’t have to. I also deal with anxiety to top it all off, but I did not have ANY of my medication on me.

I wasn’t looking too good

Finally, I decided to stick it out and finish up what I came to the store for so that I didn’t have to return at a later time. By the time I got to the cash register, I’m guessing I wasn’t even looking too good from the outside because the cashier asked if I was okay. Luckily for me, they provide assistance out to your car and help to unload your groceries.

When I as all loaded up, I sat in my car just to rest for a bit and get a game plan set for when I do get home. It’s dead of summer, and I have cold things that need to make it inside the house.

Needing a long recovery

Once I get home, I thank my lucky stars that my husband had made it back home by then with my kids, so they could unload the groceries from the car and then put them away.

I got inside the house and practically fell on the couch completely exhausted. I didn’t even have the energy to explain what happened to my husband because it just took too much energy.

Looking back, I think it was mainly the heat that caused it, but also the sensory overload in the store that just equaled up disaster for me. It took me almost 48 hours to recover and get my energy back after this.

My MS management kit

To sum it all up, I will NEVER leave the house with out my ‘ball and chain’ that is my MS management kit aka my purse. You know that saying of, you don’t know what you’re missing until it’s gone… well I feel like it could even apply to just daily life and needs when living with MS.

Does anyone else deal with this? Can you leave your house without having to bring along your ‘ball and chain’?

Until next time,

Ashley Ringstaff

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Mark
    1 year ago

    For the record, us guys feel the same way however adding a purse to our collection can be looked upon as strange. About 10 years ago after o was diagnosed with MS I struggled with carrying all the “things I needed”. I would try and just grad some extra meds, a water and a few things I might need and toss them in the car and put the meds in my pocket and go. Needless to say that never seemed to work. I never could find what I was looking for. Then I noticed my daughter always took her backpack with her anytime she left the house. Boom, it hit me, a backpack. I can carry around all that “stuff” and it can be all together, organized and my mind free to worry about everything else I have to deal with when out.
    Now we fondly call it my man purse. But at least I know that I have what I need, just in case and isn’t that the point. One less thing to deal with. Sometimes it’s hard enough without the extra burden of wondering what if. Thank you

  • Ashley Ringstaff moderator author
    1 year ago

    Very good point! Thank you for proudly stating you carry a “man purse” haha I told my husband he needs one, so that he doesn’t shove this stuff in my purse on top of my stuff. Needless to say, I’m going to need a bigger purse haha

  • itasara
    1 year ago

    I have always carried a purse. Mostly I use a large one whether or not I use much of what I bring in it. I hate to travel. My husband flies out to visit kids who are in Western part. We are in the Eastern part. I may need to go visit my daughter for a couple weeks, maybe more. I hate to say it but I would prefer to stay home. I still take injectable meds that cannot get over
    heated. Driving or flying ( it may be too long a trip to drive) it still could be a problem.
    I hate to pack on few occasions I do travel. I often forget something important. Unlike Ashley I haven’t had meltdowns from heat at least not yet. I have organizational problems at home.

  • Ashley Ringstaff moderator author
    1 year ago

    Oh I try to stay organized, but it’s SO hard, especially living with my husband, two boys and father in law… things are a bit chaotic.

    Sorry to hear that you have difficulty traveling. Have you checked to see if your drug provider has a cooling kit for you to use while traveling? I believe I had heard that something like that was available.

    But I totally understand where you’re coming from when you say you just want to stay home, as I explained in an article “I”m a Homebody” – here is the link:
    https://multiplesclerosis.net/living-with-ms/im-a-homebody/

    xoxo
    Ashley Ringstaff

  • itasara
    1 year ago

    PS. Forgot to add that bladder issues also make things difficult. Medication I haven’t been able to take because bc it dries me out too much. Pads do not always hold me. I don’t want to get into wearing adult diapers.

  • allinjay
    1 year ago

    Ashley, you have my respect for your writing prowess. You aptly described a dangerous situation which I too experience. I am a 71 yr old male with SPMS. I began my MS journey about 30 yrs ago. I converted to SPMS about 10 yrs ago. My “sensory overload” now includes stuttering almost constantly around people. My oratory abilities have always been one of my greatest strengths. NO MORE. Speaking on the phone or face to face is now one of my greatest difficulties in this life (?). I truly long for this go around to end and my next life to begin. Enough of my complaining.
    Thank you for your letter,
    Jay

  • Ashley Ringstaff moderator author
    1 year ago

    Hey! Thank you for sharing your experience with us. I’m sorry to hear that you too are dealing with MS. Hope you are still doing well with your day-to-day.

    I tend to have issues talking to people at times, I think that’s why I enjoy writing so much! haha I think it all depends on who i’m talking to.

    xoxo
    Ashley Ringstaff

  • Toledo34287
    1 year ago

    I hear you Ashley. Grocery stores are the worst and I avoid them at all cost. Hard floors, glaring lights, rows and rows of bright colors shapes and sizes. But, at your expense it was good to hear that it took you days to recover. Me too,, in the humid heat of Florida, it could take a day to recover.Thank you for your honesty

  • Ashley Ringstaff moderator author
    1 year ago

    Oh so you know how I feel with the heat factor…. ugh. A lot of people around here in Central TX are complaining about the cold, and i’m sitting here in heaven. It bugs my arthritis at times, but at least i’m not having heat exhaustion.

    xoxo
    Ashley Ringstaff

  • Julie
    1 year ago

    Sensory overload and grocery stores! UGH!!
    Let me tell you what all the large grocery stores around here are doing. Online ordering, drive up picking up the groceries. They load them up into your car and you are done with grocery shopping! Best thing that has ever happened to MS’ers!

    Stay well!

  • Ashley Ringstaff moderator author
    1 year ago

    Hey! I have that too, but I haven’t taken advantage of it just yet. I have to actually remember to do it in time for being able to pick-up. Since I have to pick a ‘time slot’ for pick up, etc.

    Gotta love technology these days too and the convenience. But my memory tends to not work and I forget to place my order.

    xoxo
    Ashley Ringstaff

  • J R
    1 year ago

    Can’t leave my house without my pocket book, but did one time for Christmas shopping. Actually left it in the car and just grabbed my debit card. Felt great! Yah until I got into Ulta and grabbed four things in absolute retail chaos. My husband had grabbed some great deals the day before so I felt super guilty for not getting specific items for guests. After those four items I went to what I thought was the line. Wrong. It was all the way around the place. I sat on my walker and realized no way. The first thing I thought of was a Xanax and my inhaler. Xanax would have calmed me in 5 minutes and the inhaler would have given me some adrenaline to power through. I couldn’t even cross the aisle to get to my car. A good Samaritan and her husband saw my distress and said “you can do this”. They stopped traffic and walked with me to my car. Her brother has MS. I was so humiliated and scared I couldn’t even thank them properly. So that is a yes. Somebody else deals with this!!

  • Ashley Ringstaff moderator author
    1 year ago

    I’m so sorry to hear that you had that experience while out and about.
    I’m really glad that there were people near by that helped you out!

    I feel like I need to carry a backpack around instead of a purse at times… ugh

    xoxo
    Ashley Ringstaff

  • SadiesJamma
    1 year ago

    Sounded like you were talking about me! I am usually done in and have to change into my night gown and get cooled down. I am curious though to what things you carry in your emergency kit. Intake Neurontin 3xday – I no longer take the shots. Maybe you have a suggestion for me to keepmhandy? Please? I am so sorry you have this hateful disease.

  • Ashley Ringstaff moderator author
    1 year ago

    Hey!

    I take my essentials w/ me everywhere, and I make sure I have meds in my car now or my hubby’s truck whenever we are out and about. That way I don’t have to carry it around, but it’s available if needed.

    xoxo
    Ashley Ringstaff

  • KarenMc
    1 year ago

    I certainly can relate.

    Before I was diagnosed with MS I had a heavy purse but was successfully able to downsize. A few years later my purse is heavier than ever!

    Maybe it would help to have an extra ziplock bag with your essentials that you can easily pick up and take with you. You can pop that bag in the car. Maybe you could decorate that bag with colorful balls and chains and start a home business. LOL

  • Ashley Ringstaff moderator author
    1 year ago

    HAHA! Good idea! Yeah, I hare carrying purses… if I do, I like them small… but I can’t do that anymore… ugh.

    xoxo
    Ashley Ringstaff

  • Dawn C
    1 year ago

    Ashley! Thank you for putting into words what I have been trying to explain to others, and yes myself, about how I have been feeling. I come off as “a b**ch” because I kind of freak out some times and don’t understand what’s wrong with me. You described everything to perfectly. Thank you! And I’m sorry that you’re going through it too <3
    – Dawn

  • jn99
    1 year ago

    I’ve almost lost friends when I am too gone to explain (calmly) why I am not calm! I melt down in heat or overstimulation or just being too tired or who-knows-why. I really don’t like the never knowing if today I can be fine and productive or if my limit will be watching the dust motes fall.

  • JDeabler
    1 year ago

    Hi Ashley-So sorry to read that you experienced once again how uncertain MS can be, sounds like you learned a hard lesson…the lesson to always be prepared with whatever it is you need for your particular MS and for whatever situation you may find yourself. Truthfully though in one way or another I think it is a lesson we all learn in one situation or another. Your true statement about the “Ball and Chain of MS” can refer to any number of accommodations we make to lead a “normal” (whatever your normal is) or status quo life. When those are put aside….watch out, right? Mine, to be blunt, has to do with bladder issues :-(. Catheters and wipes are my necessities now and if I forget them, it is not good. I can relate to your heat sensitivity as well…Many years ago before anyone really acknowledged heat sensitivity in people with MS as a true symptom, I ended up in the ER after watching my son’s T-ball game because I couldn’t walk and my eyes were freaking out. Of course, it all settled down when I got cooled off but it wiped me out for a few days as well. Now, during the summer, if I am exercising, if we travel somewhere hot or with high humidity, I always have one of my cooling products…my cooling vest or sometimes, like that short trip to the store, my cooling neck scarf. Never do I want to experience the results of heat sensitivity again.

  • Ashley Ringstaff moderator author
    1 year ago

    Hey! I feel the exact same way! I live in Central Texas… so it’s hot and humid the majority of the time. I do have the cooling vests and products that help, but when it’s 110+ they don’t last very long.

    Thank you for sharing your experience 🙂

    xoxo
    Ashley Ringstaff

  • Nancy W
    1 year ago

    Yes, Ashley, this does sound familiar. As for meds, I try to limit my need to twice a day, so I don’t lug that stuff often. Mpbut my personal car is essential and I f I will be gone all day, I pack a backpack. My hypusband has Type II diabetes so I pack stuff for him too.

    So today, we drove 2 hours to,attend my grandson’s 6 th birthday party and this is what was in the backpack. My MS causes a spasmodic cough when I am fatigued, so there must be cough drops and water. The cough leads to urinary issues, so pads are a must. A few snacks in case my hubby’s blood sugar crashes, some gabapentin for the spasms, some cough meds, and a cell phone for directions. This leads to a successful day with the kids, except for 15 minutes of hiding out in the ladies room to escape the sensory overload of a trampoline arena.

  • Ashley Ringstaff moderator author
    1 year ago

    Nancy,

    Thank you for sharing your experience. I will for sure need to start packing a back pack for long time periods that I’m away from home.

    xoxo
    Ashley

  • BuckeyeCurt
    1 year ago

    First! LOL What a great article! I find myself avoiding going out into any situation where I’m likely to “overload.” How do you deal with overload, because I’m clueless.

  • Ashley Ringstaff moderator author
    1 year ago

    BuckeyeCurt,

    Glad you enjoyed! As Meagan stated – there are other articles about dealing with the overload of situations. I find that I usually need to separate myself from the situation at hand, so that I can have peace to figure out how to get past it.

    xoxo
    Ashley Ringstaf

  • Meagan Heidelberg moderator
    1 year ago

    Hi BuckeyeCurt!
    Here is an article that you may find helpful; https://multiplesclerosis.net/living-with-ms/my-sensory-overload-experience/. The comments in particular may have some suggestions from our community members that you may be interested in reading!
    Best – Meagan, MultipleSclerosis.net Team Member

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