One of those days: I realized that I have... - My MSAA Community

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One of those days

Fee09 profile image
29 Replies

I realized that I have replied to many post, but have never written one of my own.

Hello everyone I'm Fee. That's what my family and friends have called me for as long as I can remember. I used to be a hardworking, outgoing, life of the party type of person. I raised 3 children, had numerous jobs, but automotive was always my passion. I finally went back to school at the age of 31 and got certified as a mechanic. I began having issues while in school.

Long story short...I worked my dream job for 4 years then the MonSter attacked. I wasn't able to maintain my goals and was let go. I spent 4 more years bouncing between doctors before my dx.

Today I woke up feeling like I wasn't me...like i was in someone else's body. I tried to shake it off. I had my morning coffee, got some fresh air and even did some painting. As the day went on I felt more shaky and then I began to stutter. My arms and legs are heavy and I'm having trouble walking. My head doesn't hurt, but i feel pressure like my ears are about to pop. My back hurts, hands tingling and feet are burning. It is definitely one of those days 😞

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Fee09 profile image
Fee09
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29 Replies
jimeka profile image
jimeka

Hi Fee, wow, a mechanic, well done, it's great to hear about someone full filling their dream. At the same time it's awful to hear how ms has stopped it. People say to me, well at least you have done it, but they don't understand that you would still rather be doing it, if given the choice. Unfortunately we don't have the choice and we have to make the most of a not so good situation. This week my daughters bungalow has been broken into, my computer was hacked, and someone has had a spending spree on my sons credit card, all upsetting, but then on the other hand, today I have seen a rainbow, 3 beautiful deer running across our land, 2 crows chasing a sparrow hawk, 7 magpies and finally a pair of swans. God is so good and majestic at times, it's nice to take the time to smell the roses. Enjoy your painting, Jimeka

WAshingtongirl profile image
WAshingtongirl in reply tojimeka

Jimeka, I'm sorry to hear about your family's losses this week. It sounds like a modern twist on the book of Job. I'm so sorry. But thank you for your positive, uplifting spirit. Your words were a blessing to me.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply tojimeka

Wow, you've had a really bad week, but you found your joy and rainbow! Finding our blessings even during the worst of times is wonderful! I get resentful of my diagnosis of MS, then think how fortunate I am that I didn't get diagnosed until being older. Maybe I'll start acting my age, but I doubt it.. Keep up that joyful attitude!! :-)

Sukie427 profile image
Sukie427 in reply tojimeka

Hi, Jimeka, so sorry about your rotten week! Hope the rainbow brings you better times!

Fancy1959 profile image
Fancy1959

Fee09, it's Fancy1959. How are you feeling now? Do you live with any family members? Why I am asking is 1. Is your voice still stuttering or slurred? 2. Does one side of your body feel shaker or weaker than the other side? 3. Look in the mirror and see if one side of your face looks a bit funny, maybe drooping a bit. 4. Do you still have that extreme pressure in your ears or do you have a headache. If they are better tonight, get some sleep and relax. If these still apply to you please go to your family doctor first thing in the morning. If they have gotten worse contact a family member tonight. If you have a family member who is in health care, like a nurse or doctor have them to come over and check you out. You might need to go be checked out by a doctor to make sure your ok.

I would love to talk to you more about your MS, but right now I am more concerned with what's going on with your health today. Please keep me informed. Next time we'll talk about our uncommonly common issue, our MS. Fancy1959.

Fee09 profile image
Fee09 in reply toFancy1959

I'm feeling much better. The stuttering went away after a few hours. This something that happens on occasion with my flares. My doctors argue whether it is MS related or if they are TIA's. I have had a stroke in the past so I am aware of the signals. I still feel some pressure in my head and have equal heaviness in my extremities. Thanks for the concern, I will be in touch with my doctor tomorrow

WAshingtongirl profile image
WAshingtongirl in reply toFee09

Relieved to hear you are 'better' and that you'll be seeing your doctor. Praying you continue to improve and your doc gets to the bottom of things. Thanks for letting us know!

WAshingtongirl profile image
WAshingtongirl

Fee, I am so sorry you're having a bad day. Do you think this might be the start of a relapse? Or are these 'old' symptoms resurfacing due to heat, stress, etc.? Perhaps you should call/see your doctor? Jimeka's response was excellent. I'm sure she speaks for most of us. Having to give up dreams, jobs, hobbies, etc., because MS has robbed us of physical and/or mental abilities, can be depressing. On those bad days, it's so easy (for me) to focus on my losses-what I once did-who I once was. But then my mind shifts and I am thankful that I did what I did, while I could. And is this new me really not the same person deep down inside? Some days I just have to dig deeper-to push aside my past losses and my fear for the future-and focus on what this disease CAN'T do. Fee, you're in my prayers. I hope tomorrow is a better day for you. What a blessing it is to be able to start over again each and every morning. Hope. Where would we be without it?

agapepilgrim profile image
agapepilgrim in reply toWAshingtongirl

WAshingtongirl you asked a question that rings in my ear! Is this new me not me or some me I have kept buried? My daughter says the angry me that pops up is the real me I have kept buried. I want to believe the anger is just miscrossed nerve signals, like a misfiring of a spark plug, an engine needing a tune-up, and it is not who I really am when I have an angry outburst that is not acceptable to me. I don't want to be that person that is the "new me" that cries too much, laughs inappropriately, or even cusses when I never did before. And the "new me" is causing disharmony in our marriage because my husband thinks it is the "real me" and I do not! I believe it is the misfiring of axions or nerves or whatever is caused by brain lesions. And no one understands.

Fee09 profile image
Fee09 in reply toagapepilgrim

You may have PBA. It causes uncontrolled emotional responses. Try talking to your neurologist about it

WAshingtongirl profile image
WAshingtongirl in reply toFee09

Oops! I'm late responding to agapepilgrim and see now that you shared the info I just did. Should have read the thread of posts first.

WAshingtongirl profile image
WAshingtongirl in reply toagapepilgrim

MS can cause the very symptoms you list. I think this is what the inappropriate laughing/crying is: PseudoBulbar Affect (PBA). But the NMSS website has a great description/explanation of emotional changes with MS. If you type 'emotional changes' in the search square on the nationalmssociety.org website, there is excellent info on grieving, stress, etc. I recently told my neuro about being irritable and sometimes so angry in the evening, that I've had to separate myself from my husband in the evening (I say good night and go to bed) for fear I'll say something I will later regret. (Sadly, I've done that a few times.) After sorting through it all, I've determined I am not depressed (because depression can cause this), but just so exhausted by the end of the day (afternoon, really), that my husband could just say "Boo" and I'd bite his head off. I have no energy to carry on a conversation, answer a question, or anything else. My poor husband-he is a wonderful man and a blessing to me-and really undeserving of my attitude towards him. This is a new 'condition' for me. The past year has been hard, a lot of health changes. We both are slowly accepting the new me and I've been trying hard to alter my daily schedule-do less, rest more-and say 'No, I can't do that' more often. My doc also gave me Ritalin to help with fatigue. It helps me push through my morning, but I'm still exhausted and grouchy in the evening. Perhaps you need to determine if depression, exhaustion, or MS itself is at the root of your emotional changes. Have you talked with your neuro about this? I hope you're able to figure it out, then get or do whatever is needed to help with it. I wish you the best.

Fancy1959 profile image
Fancy1959

Oh, thank heaven Fee, you had me a bit worried! Both my mother and father had strokes as they aged. Well, I am so pleased you are feeling better! We will talk again soon.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Fee09 so nice to meet you and glad your feeling better, l get the slurring and stuttering also when lm tired, drives me nuts. But l know then that it's time to take it easy.

I think it's awsome that you were an auto mechanic. I had my girls take it in school. Just so they could learn the basics. It was the 4 of us for the longest time and l raised them to be strong and very independent. Felt that if they could change a tire n ck the oil they were doing good :)

Take it easy today and feel better :)

Jes

erash profile image
erash

Hi Fee, by the time I read your post, you were feeling better. So glad!!! Wish you many good days to follow and rare bad ones.

Eleyne92 profile image
Eleyne92

It's good to meet you, Fee. I'm sorry to hear you're having a struggle today. Hopefully it's very temporary.

Momjules profile image
Momjules

Feel better and know you are not alone.

Jbahnan profile image
Jbahnan

Sorry to hear that, just keep fighting.

Fee09 profile image
Fee09

It feels so good to have you guys. For so many years I've felt like a craxy person and nobody understood what i was going through. Now to know i have this family that not only lives with the MonSter but understands how it feels is a great relief. I truly love all the support that is given and the forum to be honest and vulnerable without judgement or pity.

Thanks Fee09

jimeka profile image
jimeka in reply toFee09

Six weeks ago I went to the docs and asked to be referred to a councillor as everything was getting on top of me. Well the good old NHS here in sunny damp uk has lost me in the system. Everyone keeps telling me to ring up and find out what is going on, but to be honest, since I found this forum I don't need to talk to a stranger, I can talk to you guys and realise like you say Fee, there is no judgement or pity, I can be myself and you all understand without knowing me. I too would like to thank you all for making this ms journey more tolerable, Jimeka

cloudbear profile image
cloudbear

sounds like your having a flare up i would let your nuerologist know asap

Fee09 profile image
Fee09

My neurologist is never concerned with my issues. I'm looking for new one. He is inly treating my seizures and migraines, because he doesn't agree with the dx of MS given by the neurologist at the hospital in 2003. He sees the bands on my spine, proteins from my spinal tap and lesions on my brain, but doesn't feel it is significant enough to support the dx...can you believe that?

WAshingtongirl profile image
WAshingtongirl in reply toFee09

I hope you get a new neuro soon. I was undiagnosed 2yrs after first diagnosed. Treated at the local clinic as though I still had MS, with the exception of my Avonex. They took that away. We moved away and we have an MS clinic near us now. A relapse in 2010 sent me there. Diagnosed with MS again and neuro confirmed I'd had it all along based on my test results. It sounds as though your current doc isn't an MS specialist, nor is he/she that knowledgeable about it. I hope your next neuro is.

Sukie427 profile image
Sukie427 in reply toFee09

Hey, Fee, glad you're better. Try to find a neuro who specializes in MS. Or look for an MS center near you. You need someone who gets it. It's perfectly miserable to have a dr that doesn't and you're just wasting precious time.

lightweaving profile image
lightweaving

I have many times like this. I spend most of my time in bed. I have had this thing for 26 years but I keep hoping for good moments. I look for the good hours to see if I can be me. Hope you will be able to quickly feel like you again.

AngieRowe profile image
AngieRowe

Hey Fee! Hope you find a new Nero.

Sukie427 profile image
Sukie427

Hey, Fee, good for you on achieving your dream! I don't know a whole lot of people who can claim that. You are entitled to have "down" days, but if your symptoms worsen or stick around for over 24 hours, whether they are new or old, call your neuro right away. You could be going into relapse, with or without new lesions. Depression often goes hand in hand with MS, .though I've had it for most of my life. I come from a long line of depressives, so I guess I come by it honestly. Now I have MS to go with my depression!

Fee09 profile image
Fee09 in reply toSukie427

I was diagnosed with depression at 16, so it is something I've always struggled with. I am seeing my dr tomorrow. I'm feeling much better than I was last week. Still achy and dealing with the fatigue and ringing in my ears, but otherwise I'm doing alright. Thanks for the concern

Sukie427 profile image
Sukie427

Best of luck with your dr. visit. Keep us posted!

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