I missed my two year anniversary of my surgery/stroke on December 10th. That is a very good thing and is only possible because I am doing spectacular. I could have never imagined "forgetting" that date after only two years have passed since that very significant life changing event. I woke up from my surgery a complete mess, and not a day goes by that I do not feel eternally grateful for my current life and existence. I have spent the better part of the past two years working on my recovery. I still have a bunch of things that are "not right", but I know I am lucky. I worked crazy hard and I saw equally crazy good results. Even this past year, my recovery has slowed but I am greatly improved over last year. I'm going to list my current complaints as a point of reference for next year. These are the things that I am still working on:
Fatigue. This is the monster I fight everyday. I am soo darn tired all the time. I used to sleep a lot before my brain injury but I was also had lots and lots of energy and I could accomplish anything I desired. Now I get tired so easily and it actually feels painful I'm so tired. It's not normal, but it is becoming my new normal. This past year I saw some improvement in this, but it's still very far from normal. I am now awake twice a day for 5 hours...the rest of the time I'm sleeping. I have tried every single treatment option with little to no success...maybe this one is just time??
Left leg/calf/foot? I'm not sure what's wrong exactly, but my left shoe always falls off. Last year I struggled through still wearing my regular old shoes. They fall off with every alternating step (only the left foot...my affected side). My thought was that as I continued to wear them...my muscles would strengthen and it would stop. It didn't and so this year I bought new shoes with straps and a few pairs of boots. I asked my neurologist to send me back to PT to work on this because I would love to be all better...and she said no because well...I'm pretty darn good. No AFO, no cane, just a shoe that falls off. Grrr.Whatever...I know I'm lucky...just picky I guess.
Fine motor in left hand is not great, but I am right handed so it's not much of an issue. I can use my hand to carry something, open a door, etc, but small things are tough. Zippers, buttons, opening mail, those are reminders of where I have been because they still provide a challenge. John is often reminding me to "use" my left arm because it's mostly just hanging around. I should concentrate on using it more. I would probably get better; I usually just "forget" to use it.
Hyperacusis(crazy intense super hearing) This one is very annoying. My hearing is turned up way too much. Small sounds sound loud and loud sounds are painfully unnerving. This makes social situations more difficult. Restaurants are too loud. Parties and get togethers are draining. Music/TV background noise is like nails on a chalk board. Tiny sounds wake me up constantly even though I wear ear plugs and have a fan to drown out noise. This has improved some but is still a pretty big issue.
That is mostly it....lucky!!! I am certainly not complaining...just explaining where I'm at. I have some cognitive issues like slower than normal thinking, some difficulty with auditory processing, difficulty multitasking. I am also easily overstimulated visually usually while shopping, and by too much noise often. I'm so much better than I was and I'm getting better all the time. The cognitive issues are reminders to me, but nobody else would probably notice. I try to be patient with myself. Patience is a HUGE lesson for me and just one of the main take aways from all of this.
Fatigue. This is the monster I fight everyday. I am soo darn tired all the time. I used to sleep a lot before my brain injury but I was also had lots and lots of energy and I could accomplish anything I desired. Now I get tired so easily and it actually feels painful I'm so tired. It's not normal, but it is becoming my new normal. This past year I saw some improvement in this, but it's still very far from normal. I am now awake twice a day for 5 hours...the rest of the time I'm sleeping. I have tried every single treatment option with little to no success...maybe this one is just time??
Left leg/calf/foot? I'm not sure what's wrong exactly, but my left shoe always falls off. Last year I struggled through still wearing my regular old shoes. They fall off with every alternating step (only the left foot...my affected side). My thought was that as I continued to wear them...my muscles would strengthen and it would stop. It didn't and so this year I bought new shoes with straps and a few pairs of boots. I asked my neurologist to send me back to PT to work on this because I would love to be all better...and she said no because well...I'm pretty darn good. No AFO, no cane, just a shoe that falls off. Grrr.Whatever...I know I'm lucky...just picky I guess.
Fine motor in left hand is not great, but I am right handed so it's not much of an issue. I can use my hand to carry something, open a door, etc, but small things are tough. Zippers, buttons, opening mail, those are reminders of where I have been because they still provide a challenge. John is often reminding me to "use" my left arm because it's mostly just hanging around. I should concentrate on using it more. I would probably get better; I usually just "forget" to use it.
Hyperacusis(crazy intense super hearing) This one is very annoying. My hearing is turned up way too much. Small sounds sound loud and loud sounds are painfully unnerving. This makes social situations more difficult. Restaurants are too loud. Parties and get togethers are draining. Music/TV background noise is like nails on a chalk board. Tiny sounds wake me up constantly even though I wear ear plugs and have a fan to drown out noise. This has improved some but is still a pretty big issue.
That is mostly it....lucky!!! I am certainly not complaining...just explaining where I'm at. I have some cognitive issues like slower than normal thinking, some difficulty with auditory processing, difficulty multitasking. I am also easily overstimulated visually usually while shopping, and by too much noise often. I'm so much better than I was and I'm getting better all the time. The cognitive issues are reminders to me, but nobody else would probably notice. I try to be patient with myself. Patience is a HUGE lesson for me and just one of the main take aways from all of this.
Grrr is right. Call your doctor and tell him your leg and foot put you at risk for falls and you want to go to PT. Safety always gets a doctor's attention.
ReplyDeleteThank you Rebecca! Very good idea...I will try that next time I go to the doctors.
DeleteElizabeth - congratulations on missing your two year anniversary :) Your positive attitude has gotten you very far. It's good to want to keep improving, even if only you notice what it is you still need to work on. There were things I wanted to work on during my recovery that others said they didn't notice, which was frustrating. What matters is that YOU notice, and you LIVE with it day in and day out so by all means, work on yourself physically, mentally and emotionally. The CA community is lucky to have you, not just as a volunteer, but also someone whose courage and outlook inspires many of us. Take care.
ReplyDeleteThanks for the kind words, although I'm not always sure my input is helpful @ AA...not quite sure I would have liked to hear about stroke complications from surgery. :O
DeleteElizabeth,
ReplyDeleteCongratulations! It is great that you appreciate your progress. Awareness of continuing problems is so important for future recovery. Just being mindful can ease the problems. I can identify with all of your symptoms (except shoe loss ;). When I am in a loud place, at least I can tell myself it's okay. I don't have to participate in the conversation or whatever. This too shall pass. There is quiet on the horizon.
I also feel reluctant to be a part of AA because my biggest issue after surgery is diminished cognitive function. Like your stroke, it is an unimaginable consequence that only complicates an already complex situation.
Best, Aly
Thanks Aly! Of course, any input you have is always welcome @ AA. Everyone is dealing with their own version of a brain injury...just trying to help each other. And cognitive issues are par for the course, you're in good company and surrounded by others dealing with the same plight. On AA there are no "misfits", I found it to be like therapy, but always hope I don't scare too many people with my story.
DeleteI like that you acknowledge your "new normal". Congratulations on your two years of recovery and improvement! I'm ten years out and still find improvements to fatigue and fine motor skills among other things. There is still hope for your normal to continue to evolve.
ReplyDeleteI have never hear of hyperacusis. That must be very distracting along with annoying! Good luck on continued healing. I hope your new shoes are super comfy!
Congratulations on forgetting your anniversary. :-)
ReplyDeleteYour baby is darling!
Do you have a local stroke association? I lost my insurance and didn't think I could get PT anymore but found out it is offered at my local stroke association for only $15-20 a session. They also offer Wiitherapy (on the Wii) for $5...still specifically prescribed for my problems but cheap and fun.