Hi all. Speaking of focal seizures, with my pent up mania the past few weeks, I had 4 of them this morning, the beginnings of my uncontrollable sweating and almost no sleep. They came back with a vengence. We were on a family vacation at a nearby ski resort a couple hours away from home in order to be together one last time before my daughter heads off to university in September. Being cooped up with my children only flamed my agitation with them as they have had very poor/selfish attitudes towards me and my wife and I had enough of it.
The vacation ended with a series of actual panic attacks (not focal seizures) and I ended up in hospital on the way home. Despite the hospital being extremely busy, I seem to have been rushed through fairly quickly and had a contrast MRI done and results within about 7 hours. The MRI did not show a rupture, which is what I had been concerned about as all my symptoms were the same as they had been just before my bleed in March. I was prescribed Quetiapine to slow me down and it has indeed slowed me down (I feel like a sloth now).
My fantastic sister in law dropped by the hospital to wait with me and was quite shocked when she found out that I was the one in my family overseeing everything (including trying to educate them why I am being so weird). Apparently she and my brother had been appointed a family health representative in the past when he had some serious OCD issues (runs in the family) and this person was sort of the quarterback. I think this would be of great help as I find half my stress right now is trying to explain what I am going through to my wife and then trying to read her expression. I have very poor emotion processing right now so this is definately causing disruption to my family life. Someone to explain to my wife some of my actions and also read her emotion for me as I tend to misread it; typically the source of how it gets started. Any suggestions on how to navigate this? I am normally the rock in crisis times at my house and take the role of family protector very seriously; to that end this is hard to now be the source of the trouble and not having the mental processing ability to figure it out.
Chris, wow! I do wonder if you were having a bit of a bleed the other day, as I hinted. Iâm no doctor so not my role to diagnose but thatâs what I was thinking. Itâs good to know youâre being looked after.
Regarding dealing with family, my only approach is to exercise extreme patience: that my wife is impatient with me from time to time is something I take a hit from and just let it pass. I take it always that when sheâs grumpy, itâs because something else is playing upon her and Iâm just getting a bit of grump from that: she would never mean to be grumpy with me but in the heat of an exchange, sheâs less good at just letting things pass than me, so I let them pass. Usually I get an apology later.
So I think my recommendation is just to be generous and if youâre not sure how someone is doing, just ask kindly. Iâd say it works round here.
Having an AVM is one of many âhiddenâ illnesses: you look ok from the outside, so out is more difficult for others to understand that youâre unwell. This also requires some patience.
Hope something I say out loud helps from time to time. Itâs really good to hear from you and get well soon!
Thanks Richard. Part of my problem is that I give too much of myself and have always taken all the burden in my family whenever I can take it. Yesterday, what had me end up in the hospital is my wife screaming at me as I cried on the hotel bathroom floor in a fetal position telling her that I am not going to be abused by them any more (them being my children as well). What was supposed to be one last time together as a foursome before my daughter heads off to university ended up them all taking turns having a go at me.
I have been trying to explain to my family that I have no ability to read their nuanced emotions and that their petty arguments, wihile petty to them, actually hurts my head and confuses me. Finally I think I have gotten through to my wife that what she knows of my ability to handle the rough going on the familyâs behalf, I am not able to at the moment and will have to pass some of it off to her. We are going to look into having a âquarterbackâ come in and manage both my wifeâs and my needs and hopefully be able to diffuse things. I want to get to being the patient, not the patient, nurse and counselor.
This is actually my problem; my wife is always telling me I have to think of myself first more often as I usually make decisions by how they impact others first. Certainly I will have to work on my patience, but my wife and kids will as well; The four of us are all going through unchartered waters, and with the loopy skipper at the wheel to boot.
Iâve seen others going through this stuff. I donât know what the answer is for you or anyone. I just know how I approach it.
Did I ever mention our late member, @TJ127 to you? Heâs a man to read wise words from but passed away this time last year. I forget if he ever talked about the same struggles youâre describing in public but I know he talked to me about them and found it very difficult not being understood by his family and (not surprisingly) getting the sharp words from some of those who have been able/required to go to work all day and come home to find him not coping very well. He was on disability from about February 2018 until he passed away from something other than his AVM this time last year. If he was still around, I know heâd say âI feel you, brotherâ.
Hopefully others can share some thoughts as well. Youâre having a most difficult time.
Thanks Dick; yes, a bit tough on me right now, but it is for all of us. I am a fierce protector and main provider for my family, so it is hard to relinquish my worries to my wife. We are working the phones now to find someone that can manage our family health while I concentrate on my personal health.
Sorry, I missed this part as I am a notorious skimmer (blame it on the day job). I will look up @TJ127 as I am sure there is lots to be learned from his words whether he discussed the issue directly or not. I will be able to read the signs.
Donât get me wrong, I have a loving family and adore my wife and kids; to the point that my obsessiveness can come off as a bit much, especially when I am having trouble processing anything other than âyouâre the best, Dadâ. I think we are on the right track now as I have finally collapsed (literally ), and I think my wife now knows I cant be the patient and the care giver. I am so used to gutting through any pain (my trying to stay young gets me bumped and bruised up a bit) but think I have to take a back seat this time.
Best wishes to you too Richard and thanks always for the support.
No, you canât be a patient and a normal (or even hyperactive) Dad / husband. Itâs a good thing youâve collapsed. Allow yourself to be looked after a bit.
Youâre Worth It
as it says in an advert somewhere.
When was the last time you were worth it? Exactly. So itâs about time.
Look after yourself: youâre important to other people.
Big + for everything Richard has said
Iâve often said âmy cup, it overflowethâ and my cup can only hold a limited amount (some days very limited). All of my bodyâs normal tolerances had changed and once Iâd reached that âlimited amountâ, adding more always has a consequence or a cost. I had to learn that the hard way by pushing my limits repeatedly. I say âIâ had to learn but it was actually my wife who saw it, not me. In the end she simply told me âSTOPâ.
My plan was simple "Operate, recover and life goes back to normalâ only it didnât. All of my senses seemed to be on overdrive, my hearing, my touch, my taste were all changed and it was all VERY overwhelming. Prior, in a room of people I could filter out background noise to concentrate on a conversation. Post surgery, I was hearing the whole room all at once. If someone touched me without me knowing, it was like an electric shock and Iâd recoil. It was all very disorientating and exhausting, not that common old tiredness, but absolute exhaustion. Iâd convinced myself I was building stamina by pushing my limits. The reality was I was driving myself into the ground.
Slowly, slowly is easier. It gives us time to learn how to best manage for ourselves. I can say that now, but at the time I hated slowly.
Thanks for your opinion on this Merl as you would certainly be coming from a place of experience with this. One trouble I am having is when others (like my brother) popping in once every month or so by text. All he usually has to say is that he saw my Peloton ride on his feed and I should not ride. If he spent any time talking to me and getting that whole story then I may take him seriously. Everyone is an expert when they havenât lived it a and these are the opinions that irritate me. My sisterâs input is always "it will go away, get better etc ). She says these things to help herself feel better.
Thanks again and I am working through it and am sure I will turn a corner soon enough. If this headache would subside that just might be the impetus I need.
Edit - I have been using this same analogy for a few years now when I try to explain my ability to handle lifeâs stresses; have the person visualize most peopleâs cupâs with very little liquid and able to handle alot more. My cup on the other hand is already near the top and so I try to decline any more liquid when offered as I will be the one with the mop cleaning it up. I purposely say most peoples cups so as not to infer that I know how full their cup is.
Yes, some people try to come across as consolatory, but it often just comes across as minimizing. We canât minimise because itâs all too real for us. When it comes to âmedicalâ, everybody seems to be an âarmchair physicianâ with lots of âMy friend John he had something like that and he did âxâ, âyâ, and âzâ and heâs OKâ type comments. Me, personally, my pet hate âohh, it canât be THAT badâŚâ I am not a violent person at all, but that line lights my fuse every time. They have no clue what Iâm trying to manage.
I have some regular tasks I usually try to get done in the morning when Iâm at my âbetterâ. Later in the day my cup is constantly on the verge of â2 more dropsâ It doesnât take much sometimes.
I think we need to function within our own limits. I have a family member who thinks he knows it all and has made a couple of snide comments when Iâve been at my worst, which Iâve just absorbed. Not to long ago he was unwell, so I fed those same lines back to him. He didnât like that, you could see his rage increasing and I simply reminded him where those words, his words, were first uttered and you could see his ego shrink. Others asked him what was said but he didnât dare repeat it. For someone who was always so very opinionated, he hasnât made a comment since. He got the message.
Thanks Richard and Merl. The spoon theory has been pointed out to me (I think by you) but this is the first time I have read the story, and not just the theory. For me, I would think the spoons would be better switched with marbles if you know what i mean. I think of Soundgardenâs âSpoon Manâ when I see that theory written.
The theory does somewhat apply to me I think, but it is more of a stretch for others to apply this to me because I think my condition is even more invisible. I generally gravitate to leadership roles, especially if no-one is at the helm. My linear way of thinking requires structure and adherence to the structure. I guess, in living this way, I have insulated myself from my oncoming right brain (lateral thinking side) deficits and with the bleed what little flexible thinking I had is now out the window. All decisions must now run through my structure side and not eveyone is quite so rigid.
The way I like to explain my rigid thinking style is the inspector in âles Miserablesâ; the Liam Neeson version as I am not cultured enough to watch the play I completely understand this character and the final scene as I am often in conflict with my rigid thinking style and that of a more open-mindedness at times when that is needed. When I am required to âcolor outside the linesâ so to speak, I often run my rigid thinking past a colleague to make the deviated decision for me as it is almost painful for me to do it without assurance that it is the correct decision.
My faulty right side brain has literally shaped my personality and similarily to people with eating disorders, it is hard to stop the excessive part; as people with eating disorders still have to eat and I still have to speak to people. I am not sure whether all this knowledge I am picking up about neurology and plasticity is a good thing that I can use to help me overcome, or another thing for my obsessive mind to run with.
Through this all and with lots of self-reflection, I have come to the conclusion that I need to surround myself with people that âget meâ. I have to exercise it somewhere as I am not able to get the energy out with my usual cardio, so my poor co-workers are getting the brunt of that.
Stay well fellas.
PS, Merl, that must have felt cathartic getting to zing your family member with their own comments.
Hey Richard,
Personally, I see the âspoon theoryâ more as energy and my use of energy. Where my cup as being my tolerances. I can still have energy when my cup overflows, sure a lack of energy does contribute to filling my cup as a lack of energy does affect my thinking but for me they are 2 differing measures. One increases over the day, one decreases, but not by the same amounts (if that makes any sense) .
I do often use the âspoon theoryâ to understand/explain my exhaustion some days. Itâs a good theory because itâs one thatâs easily understood and comprehended by others. I found trying to explain it all confusing enough for myself, how can others grasp it? The spoon theory helps to quantify why Iâm so exhausted.
My tolerances can vary wildly, some people add a drop to my cup. My wife has a friend whom I can tolerate some days fairly well, but on a bad day it only takes an hour or so before I need to leave. Medicos often add 1/2 a cup all on their own. For a Drâs appointment for example, If I start the day @ 1/4cup, then hit traffic that adds 1/2cup. Iâm a 3/4cup and I havenât even had the appointment yet. Then add a 1/2cup at the appointment and my cup is overflowing.
The spoon theory thing isnât an exact match for whatâs going on. I just thought the conversation was getting a little that way and it might be a useful share. Equally, I donât think I understood Chris quite right to start with, so I apologise for taking the conversation off track a bit.
Makes perfect sense to me. My cup is also my tolerance level too, but sadly the energy level seems to be the opposite. Nasty combination.
I seem to be a master of the tangent as I have somehow steared my own focal seizure thread down another avenue. I am going to leave this topic at that. Thanks to you both for your responses as it helps to know that some people get it, so not so lonely.
Wanted to bring up a positive thing for once, which might be of interest. I have been reading about neuroplasticity and it is making some sense to me. I have been programming my mood, so to speak, by changing up my music playlist to upbeat music and only listening to songs that give me some emotional lift. On my dogwalk each morning i add any uplfiting songs I hear to my upbeat mix. Taking Care of Business!!
My focal seizures had some auditory issues as would begin with a smell and a song jingle; and also have had bad tinnitus for 35 years. I was explaining my thoughts to my wife this morning that I think I am having some sort of neuroplasticity benefits by tying it to uplifting music. Maybe I am using my auditory cortex to get good feelings into my head using music. I googled it this evening to see if it is a thing and it is. Check out Musical Intervention for Acquired Brain Injury. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6464962/#:~:text=How%20the%20intervention,Nayak%202000 Dont Stop Thinking About Tomorrow!!
Hopefully some positive motivation for others suffering deficits along with their seizures and that âthink postiveâ does have science behind it; but you have to follow the neuroplasticity instructions ; Neurons that fire together wire together. Sweet Emotion!!
This is encouraging!! I found myself healing by listening to Louisa Hay affirmations, so another motivation to others facing long and painful recovery.
Thatâs awesome Jenny. I knew I was onto something; it is nice sometimes when the hours of obsessive research pays off. The part that works for me is each time I catch myself strutting like a peacock listening at least I know it is science, not Dad acting weird again. Running Down a Dream!!
Enjoy the day Jenny and live it to your own soundtrack.
), and I think my wife now knows I cant be the patient and the care giver. I am so used to gutting through any pain (my trying to stay young gets me bumped and bruised up a bit) but think I have to take a back seat this time.
It doesnât take much sometimes.