I'm starting to get really angry at MS. I was diagnosed 11 years ago. In the last 3 years i have started a slow decline in walking, and dexterity most noticeably. Cognitive, bladder (invisible symptoms) for the first 8 years. I was sad and afraid Now it seems MS is taking up a lot of space in my life. I am grateful that I can work from home during covid and may continue to do so once this quarantine is over, out of convenience.
However I now have to rearrange my schedule due to MS. For example I have to have longer breaks in between clients. A shower uses up half my spoons for the day. (if you're not familiar with spoon theory look it up) Ordering groceries regularly now because the grocery store uses up the other half of my spoons. OT and PT are great but again, life gets built around medical issues. So i feel like my life is going by just getting by. My body acts like i'm much older than i feel mentally. If you have identification with this or thoughts about it in general, please share and let me know i'm not alone.
I think anger is better than sad because it is at least energizing. still have some fear about the future but trying to stay in the day, in the moment. thanks for reading this long post.
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Sandydemop
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You’re not alone at all! Sometimes it feels like a constant game of negotiating with a terrorist. Spoon stealing activities and the ways we try to manage those could be an excellent and fruitful discussion with this crew!
Showers are so life sucking sometimes! I finish with cold water to blunt the heat problem. Other times it’s not happening and I have a nice dry shampoo or a hat 🤣 I really like ordering groceries, but I have a well stocked pantry now so I usually run in for much less. It wasn’t long ago that I would have a cart full and want to just leave because getting it all into the car and then house felt impossible.
I have a anger/guilt/sad spiral when it comes to my family, particularly when I can’t do something I think important for my girls. I recently declined an awesome vacay offer because of MS. Anyway, I see you’re in PT so something must be improving. I hope I’m right when I tell you that things can get better 💐
thanks kdali for asking. I'm doing ok with the steroid taper. Still having double vision but more energy in the morning. no stomach upset and i'm able to sleep so no bad side effects. thanks for validating the lack of spoons. i feel so frustrated when a normal activity wipes me out! I think i mentioned here that i am going to start the study for depression using TMS (brain stimulation electrodes). Maybe that will help.
I’m glad there are some positives during your treatment! Have you used an eye patch over the affected eye? I made one out of a sock to go over my glasses 🤣 and I think it’s helpful to give the sick eye a break. I hear you on the frustration! I’m trying to just close my eyes now when I have to take a rest break, but it’s usually my legs that call the shots on how often I need those 🙄 I see the same frustration in my toddler when she’s tired too and my words to her are so much kinder than my thoughts to myself about myself when it happens to me 🤔
I’m so excited to hear more about this treatment and your experience with it. When will it start?
I should ask my neuro about an eye patch. She wants me to put off the neuro-ophthalmologist until after the steroids are out of my system. patience is not my best quality. I get the toddler comparison! As for the TMS study i will share when I know more. I am scheduling an intake appt. for Monday. i like trying non-medication options where possible.
I bought an eye patch on Amazon and returned it because it was awful. The one from my kid’s pirate costume is better 🤣 I had a patient once that had a cute home made one for her glasses out of felt. Patience is not mine either. I’ve spent a lot of time on the phone trying to hasten this MRI 🙄 Ironically I just had my annual optho visit and everything looked fine. I do too! Sometimes the meds just sedate the issue and I don’t have time for that. I’ll be looking for your updates and I hope you have great success 🎉 TY for braving something new also, some of us don’t know about these other options until we read about them here 🙏
I’m a carbon copy of you. Seriously 2 years ago I started using a walker in my home. I just recently purchased a electric mobility chair that I can use going outside. I feel like my independence is slowly being taken away. My next step is looking for a way to get the electric chair in my car so I can actually go places alone. I miss my independence. I’ll be going to the Abilities Virtual expo to see what devices they may have for the disabled. abilities.com
Hey Patti23 Nice meeting you. i get where you are. Glad your desire for independence comes first. I still try going without devices. Maybe that's why I fell the other day! Anyway thanks for the reminder about the expo. i'm signed up. and good news is i love to shop.
I understand completely. Jan 2019 MS took me down I couldn't walk for 2 weeks and I ended up on a hospital walker . I had a sudden onset relapse where my right side became weaker .
Feb 2019 - Dec 2019, I was on my way back to getting better. I was slowly getting back to walking with the cane was a new med because the other one stopped working , then 2020 hit and I lost everything. The shutdown made my MS take over because I wasn't moving . When I would walk or try my legs would give out .
For example when I went to the dr I had a hard time getting to the office cuz my legs tired before I made to the office and all I was doing was walking from the waiting room to the exam room. Afterward I had to be wheeled to the front. Figuring I had recovered (not) .I went into dollar tree big mistake. I never go into the store unless they have the carts that I can drive but I went in and I made it down half of the aisle before I started sliding my feet cuz my legs were tired. fast forward I get ready to leave the store , my leg refused to move and I was stuck in the door frame. I had to be picked up and carried to the car
ooh. awful. 2020 was a bad year for physical stability. forget improvement. I have seen those carts in front of stores but never tried one. Now you gave me permission to try it. thanks.
I understand. Yesterday was such a nice day, so i went to store with my husband and refused to use the cart. I let my pride get in the way. When I got home my legs felt very heavy and painful. I contacted my neurologist and he wants me to do some tests and will even try me on ampyra. Needless to say although today’s another nice spring day I will be home resting. I LOVE having MS🙄
Gotcha. On the good side Ampyra has been great for me. Made a significant improvement in the quality of my life without side effects. Good luck with that.
No, try not to waste your energy getting mad. We MSers need to conserve our energy. I never thought at 52 I would have to stop working , as an ex social worker I could no longer do field work....I have trouble walking/balance issues. I can’t even dance now. Although I used to dance and perform. Well, I’m just happy I can still walk.
But , sometimes we have to take a look on the positive side . I have a loving and supportive family. So what.... I can’t do in person grocery shopping sometimes. I just do on line shopping or my husband or son will go to store for me😉 Although, I’m a homebody now because of MS and covid. I try to go for a drive just to get of house sometimes or if I don’t feel like driving I take accessride my car service.MS has allowed me to spend time with my immediate family I live with and zoom with those I don’t. Even though, I am struggling with this horrible disease, I remain hopeful there’s a cure out there😉
I am also a social worker! grateful that i started a private practice in 2014 and can work from home now. Used to travel to apartments to check in on clients. A lot has changed. I like this idea of conserving energy (spoons) for important things. Covid has legitimized staying home. Now everybody is staying home. Glad you are hopeful and having quality time with fam. I would like to reach out to friends more on zoom for visiting. Asking for help, being vulnerable is something that takes lots of practice for me.
I know what you mean. I was diagnosed only 5 years ago. I was very active in my life but slowly I became unable to do some things that I used to do easily before. Now I have PPMS. Luckily I’m still able to do a lot of things for myself but things like walking is a challenge for me now. Now I walk slow and need a cane. So I realized I need assistance at times and that’s ok.🤗
Yes. had to slow down. I don't feel lucky, maybe I am. I feel like Gd pointed me this way. I never never would have left agency work to open a private practice by choice. I wanted to stay in agency/team work and retire as a supervisor or a manager. no not lucky. Grateful.
Sandydemop and mcknighm I was also in social work! Started falling, and forgetting where I was in the field, and couldn’t do the calculations I needed to do to figure out benefits. I miss it so much.
Yes, you are lucky. remember we’re alive and we were able to wake up this morning, that’s more than some ppl can say. Things happen to us for a reason. It could be a way of telling us to slow down and smell the roses . Enjoy this beautiful spring day😉
MS does mess with our plans many times...keep on trying for it is worth it ...it took me lots of different ways of finding ways to work around the down times ...talk to the doctor about all of these problems for maybe there is something they can suggest for you to try ...i know i take a pill for restless legs which can make it hard to walk and i do hate taking meds but if it gets me moving ha it is worth it...sitting to long makes it really hard to get going and just things like this has it bad parts and i agree can't do to much after going to the doctor ....just going outside really helps me ...can't wait for the nice warm weather to sit outside and enjoy the sun...take care ...
You are absolutely not alone in this. I work hard on NOT being angry (listening to Eckhart Tolle and “embracing the isness” etc.) BUT when I DO get angry, at least s#!+ gets done!
But it doesn’t last long because the anger is so exhausting.
Like you, I have to decide how to use my spoons (even though I hate that analogy — why did it have to be spoons? Why couldn’t it be something cool like dice or nickels or I don’t know, golf balls, or anything but spoons!?)
Showers are spoon-spenders. So are kids birthday parties, trying to hold an intelligent conversation, driving a car, or reading any kind of instructions. Basically anything I want to do or need to do is gonna ruin my spoon count.
I use up A LOT OF SPOONS on just trying to appear normal so I’m not embarrassed in front of people by how disabled I have become. Then they say “you seem fine” and I go straight home and sleep for 12 hours. Because having a chat over lunch JUST TOOK ALL IVE GOT, my head is spinning my eyes are crossing my foot is in spasms I’m peeing myself and I AM NOT FINE.
I wish I could work, and I envy you. Since my diagnosis, I have tried and failed at 5 jobs. Sometimes it was all my time off for medical appointments, sometimes it was my new inability to manage stress, sometimes it was cognitive issues and confusion, sometimes it was physical exhaustion.
When I let the anger creep in, it is mostly because I feel USELESS. No one comes to me for answers, no one waits to go ahead until they hear what I think, no one says “thank goodness you’re here, we need you!” Nope. And all I can do is get used to it.
So, no. You’re not alone in being angry. But save those spoons for something better. Like a hot shower before you start work! Sounds dreamy to me...
Thank you so much for your post! I started my private practice in 2014 so went to full time in 2018. Thank G-d! I don't know what else I would do if i couldn't work. It's the highlight of my day.
I have also been peeing on myself. Ugh. Wearing depends underwear because it is too difficult to change underwear at this point. I have a medication to take to help with that. Oxybutynin. It does help. I take it every other day.
I started with oxybutynin. Move up through a couple different meds. Now take Myrbetriq. It works much better for me and doesn't come with the terrible dry mouth.
I couldn't stand it. I couldn't sleep at night because my mouth was so dry. Although, you're right, definitely drank a lot more water on oxybutynin (but then more bathroom runs too)!
I think it is interesting how truly difficult showers are for so many of us. I never realized that others thought so also. I just dread when I have to get in the shower, I am simply exhausted after. BIG spoon spender.
i hear you,ms can be so frustrating! we know that there are lots of people that have other chronic disease that feel just like we do.I am just weary,everyday when you wake up it is what will i be able to do today? that is where the emotions kick in.remember the days where you never had to ask yourself can I take a shower today,just the extra steps exhaust me..I spent all day lying down yesterday,not my ideal day.that is my biggest fight everyday,i have learned to listen to my body not an easy task,but if I do listen,i feel accomplished.i become mentally exhausted somewhere everyday, i do remember the days i worked ,there were some days i would have done anything to lie down,be careful what you ask for
Thanks Pam and sorry you are going through the exhaustion as well. Listening to the body is really key. Now my body is telling me to get up off my rear end and walk. See ya later!
You are not alone! I can relate to much of your story... I try not to sty in the oh crud moments too long but refocus on what I still can do. I know that I am more fortunate than many. Doesn’t make it more fun too live with, but helps me with acceptance of things I cannot change. Serenity prayer puts life into perspective often! ❤️ And we just don’t know what tomorrow will bring. Hugs and prayers!
That's great. I love meeting friends of Bill. Everywhere I go it seems there we are. Thanks for sharing it. Appreciate the reminder of the power of the serenity prayer. Never gets old.
Hi again Sandy. For the record, I’ve had double vision for years now and wear prism glasses that work wonderfully. Your double vision may not be permanent; I do know many are not! I’m just saying for me the glasses make it manageable. 🤗 Before it was actually diagnosed I found myself covering one eye (or closing it) while I was driving. Not the best plan! 🥰
So my neurologist doesn't want me to see the Neuro-ophthalmologist until a month after the steroids are out of my system. Not sure how to manage until then. Today i found myself just closing my non-affected eye so i could concentrate on what I was looking at. Thanks for the heads up. I know someone else with prism glasses. Do they still correct for nearsightedness?
Yes absolutely! I have been near sighted since I was 32 and already had glasses; I just couldn’t see well anymore! I figured my eyes had just gotten worse for whatever reason and I needed a new RX. It was my ophthalmologist who told me I had double vision, and also that it was extreme. I then told him I had received the MS diagnoses about a year prior. I was still in denial I think about the MS, (thinking it must be something else). The first correction he gave me was a +6 prism but those ended being way too strong for my head and mind to adjust to; and I felt totally blind when I took them off. So dr backed it down to +3 something and that turned out to be perfect. It still takes a minute to get used to but I could totally see again once I did. I recently hear that sometimes it’s tricky to get the prism exactly right and and once it works it shouldn’t be messed with. I do have to use a magnifying mirror to apply mascara, but that’s easy enough. 😊 Hugggs
thanks for the info. I'm impressed that you wear mascara. I didn't think the double vision was a big deal at first so I didn't tell my doc for 6 weeks. then she scolded me for not telling her sooner. It sounded like an emergency to her so OK. Here we go. I just thought my vision was getting worse like you thought. I've been nearsighted for ever. 1st glasses in second grade because all i could see was the big E on the chart. where are you located?
I'm on Aubagio and Ampyra. Has been working for about 3 years. I think I need something stronger but my doc said not during covid. too much immune compromise.
Hi Sandydemop and everyone else who replied, yes, there are many emotions involved with this diagnosis. I was diagnosed with PPMS over 9 years ago and my disability has increased during that time. Many are not visible to others ( incontinience, insomnia, muscle spasms, vision problems, cognitive issues). Although others are, falls, inability to walk without a device to help you. And as has been mentioned by many, the exhaustion that comes from showering and getting ready to do anything. But all in all I have been blessed to be able to remain positive and thankful most of the time. When I start to feel sorry for myself I pray that God help me get past it. I have faith that I am exactly where God wants me to be. My family and friends are wonderfully supportive. I am not where I thought I would be in retirement, but this is where I am. I was a very active nurse and mother, so asking for help was and is difficult. I am trying to get better at it though. This site is so supportive and helps make this disease easier to deal with, so thank you all
dear DIsneyQueen thanks for your post. I relate to it all. Want to re-establish my relationship with Gd, that i am where i belong. There is a purpose. Maybe room for surrender at day at a time. It's all we have, right? Maybe an hour or maybe just a right-now-at-a-time.
I agree Sandydemop. Actually my MS has been a blessing in many ways. I do wake up every day and am thankful. I believe God doesn’t give me another day because I need it, He gives it to me because someone out there needs me. So with my limited abilities I have to look hard to make that difference. It forces me to look back over my day before I go to sleep to take inventory of my day. That usually lets me find blessings I might have otherwise overlooked. I often think that I probably would have gotten to where I am physically at some point in my life through aging or other disease, but MS has brought me to a place in my spiritual life that I wouldn’t trade for anything.
I need a serious attitude adjustment most days. I fight the "blessings" of this lifestyle. tonight i was looking up natural ways to heal double vision. I don't want this! (rant rant rant) Spiritually I need this obstacle, right? and see it as a gift but that's not where I am right now. Maybe i can get there while still doing everything I can to diminish the symptoms. Does that make sense? thanks for reading.
Hi Sandydemop, no, I do not know Bill. I too suffer from double vision. My optometrist put prism in my lenses and “slabbed” my right lense ( good eye) Did this about 6 years ago and no problems if I wear my glasses. Also had my eyebrows and eyeliner tattooed on because double vision made it hard to do make up, and I am still vain!
Yes, you can have an MRI with tattoos. Haven’t had any limitations with tattoos. Just try to keep sun off. Sunglasses for eyeliner and sunscreen stick on eyebrows
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