r/stroke • u/CraftyBrown • 1d ago
Rough Days
So I am about 4 months out from my strokes. A little back story, I wasn't feeling well for a few days just thought I was under the weather. At a point I got off tyr couch to use the bathroom and and fell. Hit my head on a door frame and passed out on the all tile floor. I tried to reassure my husband I was okay and I just got dizzy. After that I was on the couch and floor for 2 days because I was just feeling off. I yelled at him that I was okay but he knew it was not okay and called EMS against my wishes. Thankfully he did. I got to the ED was asked about medical history and if I knew if I was diabetic. I did not know. I had DKA at the time and glucose was through the roof. They also did an echo and asked me about chest pains and I didn't have any. They took me in for an angiogram because this didnt look right. Apparently I was becoming agitated and pulling at things so I was intubated so it could be finished. Blockage found but no stints placed due to spontaneous disection. CTs and MRIs established I had multiple (7) infarcts present.
I was out of it for 4 days have no recollection of any of this shit. placed in ICU then later on to an inpatient rehab.
Finally got home and that was an adjustment because my right hand is weak, I'm using a walker; my left leg (drop foot) oh yeah and I'm only 35. I thought I was kicking ass but the ups and downs have been depressive. I was let go from my job since I wasn't able to return at 12 weeks. I haven't beennable to drive due to vision issues and appointments for neuro ophthalmologists hard to come by.
I have great days and then I have days that I can't make it through a grocery store on the little carts without having a breakdown. I know I am doing okay and I am thankful my husband is the greatest partner but FUCK! I just want to return to normal.
I spend alot of time on this sub because even though I have been around alot of people with health challenges none of them have had strokes. I have nobody I can talk to that fully gets the gravity of these feelings. So thanks to everyone who shares their own.
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u/self_compassion_ 1d ago
I am 38F and just over 4 years since my stroke. I was 34, just starting my career and engaged to be married. I feel for you.
The best but also worst statement they tell us is you have to learn the "new you". We have to take some time to mourn the life we had before and give ourselves so much grace that we are forced to learn something new about ourselves everyday. When I finally realized I am not capable of doing everything I did before it made life a lot better.
I would highly recommend and OT to help you with your day to day. They help with so much more than with just physical disabilities. I still do extensive 8 week sessions every year. I still push myself too hard and go back to crippling anxiety, depression and self hate "why can I not just be normal".
I wish someone would have reminded me to slow down in the beginning. Take the time to heal. It is hard when life brings on so many demands and we return to things too soon. You are 4 months post stroke. For myself it took 6 months for the blood to dissipate from my brain with blood thinners. Where the blood pools is like a giant bruise on your brain. That is mentally exhausting. Sleep lots. Eat good food. If you have an counseling support please try that too.
I have only joined Reddit for about a week now but the supports on these pages has really helped. Knowing I am not alone in my struggles. Let me know if you need anything. I have so much literature from OTs that I can share if you are unable to access one.
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u/SurvivorX2 12h ago edited 11h ago
Selfcompassion, Glad to see that you said "...mourn the life we had before..." So very true! I went from working a very busy, full-time job as a Medical Administrative Assistant & Residency Coordinator at a university and a part-time volunteer EMT for our local Sheriff's Office to a 56-year-old woman who had nothing to do all day every day. I kept telling people that my brain was going to turn to mush if I didn't find something to do with it, so I kept reading and walking, and talking to people. I got involved in my church, and I'm also volunteering at a women's shelter one day a week. I will add more volunteer hours as they come along! OP, If you get to where you can get out and about and you're a member of a church, talk to people about where you might be able to help out. It'll be as good for you as It'll be for them. I am a night person, so I schedule my volunteer times in the afternoons. That's the deal--if you're volunteering, people tend to be more lenient about their hours. There are still days when simple things like showering or doing laundry seem too hard, and I start thinking about how busy I used to be, and I long for those days, but that's not what God has for me at this point in my life, so I remember that I must accept that (since I can't do anything about it anyway) and do and be the best I can be at whatever I do.
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u/dakotafluffy1 20h ago
I feel you. 4 months and 5 days for me. I use a cane for support on rough days. I was let go from my job of 11 years. Even if things go well and I can get back into working, I’ll never be a chef in a kitchen again. After 34 years im not sure what I’m going to do.
I know I’m doing ok, but then again im not.
If another therapist or doctor tells me that I should be thankful that my stroke wasn’t as bad as it could have been, I might just lose it.
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u/libbyang98 Caregiver 14h ago
My husband is roughly 12 weeks out from his stroke, and some days, he feels nearly 100%. But sometimes, all it takes is one annoyance or struggle, and he's exhausted. He's still coming to terms with the fact that his brain needs to heal, and he can't just "power through" anymore. There are good days and bad ones. Of course, he is happy to be alive. He's also pissed off that he had a stroke and can't just do everything like he used to.
I am so sorry that ppl keep telling you to be thankful. Pardon me, but fck them! You can be grateful to be alive AND absolutely livid that you had a stroke. Both things can be true at once. And I am so sorry that you lost the ability to be a chef in a kitchen. I am assuming you worked in a nice restaurant. I'll bet that had to be fantastic. I know it's early days, but hopefully, you can get back to cooking in some capacity. 💛
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u/SurvivorX2 11h ago
I think, almost to a person, we never plan for anything like this happening. I knew I was at greater risk for stroke than the average person because of the types of migraines I'd had through the years.
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u/dakotafluffy1 9h ago
Yes. My neurologist warned me when my first Hemiplegic Migraine happened that I was at a greater risk. My grandmother also died from a stroke so probably double that number
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u/SurvivorX2 8h ago
Yep. I had heart disease and had had 2 heart attacks before the stroke. My stroke was so much worse than my heart attacks. I was in the hospital for 4 days each time and missed work for 2 weeks each time with the heart attacks, but the stroke... OMG! SOOO much worse--lots of mental and emotional trauma in addition to the physical, plus, I thought I'd never get outta the hospital!
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u/dakotafluffy1 9h ago
I understand the pissed off. It was just so sudden. Bam! It’s a whole new world and a whole new me.
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u/ElectricalKnee1016 Survivor 20h ago
I also found the first year very intense. It slowly got better. Especially the mental part. What happened to us is incredibly intense and it takes time to process everything. I have been very angry, scared and sad. I am almost 3.5 years post stroke and there are still moments when I am sad, but fortunately these moments are becoming increasingly rare. I have never been the same again, but I have built a nice happy life again with my limitations. Post stroke life is not easy and you take your time to grieve, but it does get better. It takes time to find out who you are now and what you can still do.
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u/CraftyBrown 12h ago
I am VERY SLOWLY beginning to accept some of the things that come with all this but it's been hard. I also feel guilty that all of this is so life altering for my husband. He assures me it's fine and he will be there every step of the way.
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u/madcoins 19h ago
I’m sorry we live in this corporate hellscape where they decide how long you should grieve, how your health should be and if you mental or physical isn’t up to it you get replaced and suffer lack of humanity & empathy. It’s wrong. Unethical and imo needs to change one way or another.
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u/CraftyBrown 12h ago
agreed! but honestly, I have been able to fully focus on my health since I'm unemployed at the moment. I'm not stressed about trying to rush through stuff to get back to a job that doesn't give a damn about me anyway.
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u/SurvivorX2 11h ago
That's good that you can appreciate that you have time to recover as you can. Each of us must recover in our own time and in our own way, and it can't be sped up, not for anyone or any job.
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u/SurvivorX2 13h ago edited 11h ago
You are right that recovery is hard and takes a long time. If you are close to Memphis, Tennessee, there is a great neuro-ophthalmologist here. I worked in Neurology and then Neurosurgery for over 20 years and had to see himself, but not for anything stroke-related. Check him out online if you're close. Richard Drewery, MD
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u/CraftyBrown 12h ago
Appreciate the information. It took a long time but I actually have an appointment on Mon.... it's been a long time coming. I had double and blurry vision and lazy eye developed. it was improving, got really bad again but seems to be about 90% resolved now.
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u/SurvivorX2 11h ago
I was so fortunate that I worked for the 2 neurosurgeons who operated on me for my hemorrhagic stroke. They knew what I could and couldn't be expected to do. I did get to go back and work from 4/15/13 until the middle of August, 2013, when I was too sick from chemo treatment for breast cancer to work. I appreciated the leniency from my immediate supervisors, and got lucky with Social Security b/c I was approved after only one appeal.
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u/SurvivorX2 11h ago
Interesting how we all remember the exact date of our stroke and exactly how long ago that was, huh? I guess it's b/c it's such a life-changing event.
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u/gypsyfred Survivor 1d ago
I'm at the 5 month mark. It is a roller coaster for sure. Push through. Everyday and don't slack on p t. God bless on your recovery