I have worked out that I have approximately 20 ‘good’ hours a week, hours in which I can get things done. I can use those 20hrs in 2 days, run around doing the tasks that are needed but then for the next 5 days I’m so burned out even bending down to pick something off the floor I darn near pass out. The blood rushing to my head gives me a head from hell, then standing up I get all dizzy and so unstable I often stumble falling over furniture, pets even my own shoes. Tsk
I do try to pace myself and do a bit each day, but some tasks need to be completed in their entirety and can’t be left 1/2 done for tomorrow. Some days I feel OK and think 'Yep today I’m going to do that…" so I do, only to find I’ve done too much AGAIN and curse myself for it. I feel so guilty that I can’t function at times, almost ashamed. I’m told ‘Don’t worry about it, it’s OK…’ but it’s NOT!!! It annoys the daylights outta me.
Am I the only one like this? is this frustration only in my own head?
No, you aren’t the only one. My symptoms aren’t as bad as yours, but I do the same thing. I will end up just sick with a horrible headache.
Like you, some times I can pace myself, other times there are things that can’t be completed over the course of a week.
I have started letting some things go until someone (usually my husband) is here to help me.
I don’t know the answer. I just know you aren’t alone.
You are not alone. My partner experiences this too. When I see him getting frenzied, I try to coax him to sit down on the sofa, turn on the diffuser that has lavender oil in it (helps calm the brain), turn on 5-10 minutes of deep breathing and meditation. He uses two apps on his phone that are available both for Android and iPhone systems. One is called Pacifica and the other is called Calm. I hope my ideas can help someone else because they definitely help him!
Yes. Ration those spoons.
Honestly I’m lucky if I brush my teeth and get dressed hah hah.
I try to do one “big thing” a day.
If I feel a hint of a migraine I drop whatever I’m doing mine last days and uhg. I’ve had enough since I used to have a migraine 24/7 for years.
Hey People,
THANK YOU!!! Just knowing I’m not the only one having these difficulties is a hell of a relief. I do feel isolated and although some dr’s like to tell me ‘…it’s all in my head…’ I know it ain’t solely a psychological thing. Sure, I do think it’s had and is having a psychological impact, which doesn’t help. But by reinforcing the point that “they have operated, they have fixed” makes me doubt myself even further (if that’s even possible). I can be a very arrogant patient, but not without cause. I had many years of false diagnosis/testing and hospitalisations before they identified a concrete cause, so to say I am cautious is an understatement. I do not accept until I have investigated and received 2nd opinions. They, the dr’s, have put me wrong numerous times, so why don’t I trust? Ohh they think it’s cos I’m selfish and arrogant, which I can be, but not without cause. GGRRRrrrrrrrrrrrrrrrrrrrrrrrr
“Mod” is buttin’ in! How are you guys? I miss our old chat system, used to love having a visit with you in the evening. (That would be morning to you, Merl.)
Pacing is one of the things that all of us with rare conditions and diseases need to do, and most of us have a great deal of difficulty with. The Spoon Theory is one that a lot of people find really helpful for getting their head around the concept of pacing and energy rationing.
I have psoriatic arthritis and I find it so hard to consciously pace myself: for me it’s a reminder of the way I used to be, and all of the things that I can no longer do. I don’t like being reminded, but I also don’t like collapsing in a heap and weeping because I am so tired and so frazzled.
Sorry, Occipital and Caitlin … over to you. Glad to see you around, Merl!
Thanks Seenie for the explanation of the Spoon theory and I agree. Some days that pacing isn’t a problem but on other days… …ohh hell. I too do not like being reminded of my limitations, my wife is regularly telling me “Now don’t over do it…” but I still do. At first I thought I was building stamina, doing a bit more each day. But come the 3rd day of ‘stamina building’ and I’m lucky to be able to crawl out of bed. Bright light or a simple sneeze and it drops me to my knees. My eyes want to explode from my skull. I HATE being defeated and, to me, my acceptance of the situation is the ultimate in self defeat. So I push against it telling myself I won’t let it win, but pay for it 10 fold. Someone once told me “The definition of stupidity is doing the same thing over and over, and expecting a different result” and still I don’t learn. This is where me and that acceptance bit don’t work.
My recover is unlike every other recovery. In my recovery when I push hard I get horrible results. Pushing hard results in overdoing it almost immediately. This is unfamiliar and frustrating for me. I like the spoon story because I can start to experiment with what I can “get away with”. I keep track of how it goes. Eventually I start to get a sense of what is worth doing and what is not worth doing. It is all on me. There is nobody to blame for what I do to myself. Or rather, I focus on what I am in control of. I like that control in the face of the whole thing. I am in control of me and my life, and that feels good.
Hey Occipital,
I have learnt that there are limits but my limits have decreased enormously. I was keeping a diary at one point to see if there was any pattern to my symptoms, altering what I can to get the best result. Like many of us, I have good days and bad days or more like good times in my day and BAD times. For me mornings and evenings are my worst, so I try to get done what needs to be done outside of these times. But my exertion levels vary wildly, at times I feel bulletproof. This is usually where I feel I can push myself, only to find my self expectations far out weigh my ability now. What used to be simply achievable has become monumental. I do not hold anyone responsible ( I do get frustrated with some of the medical fraternity, but I do not hold them responsible by any means) not even the driver of the vehicle from my initial MVA. They have apologized profusely for the MVA but have been told I certainly do not hold them accountable for my predicament. I have seen people in very much worse situations than my own and think “Well it could be a hell of a lot worse” I may not be able to do as before, but I can still ‘do’, where many others can’t even do as I can. I try to keep my day full, so that I don’t fall into a ‘poor me’ mentality. For me, I know, an idle mind can wander into some dark holes, but it’s up to me to manage me. I think the biggest problem for me is knowing what I could do prior to my last incident. Acknowledging that my last incident was not the most catastrophic, but it’s impact has been disastrous both to my physical ability and the resulting mental stresses. I believe other’s judgement of “well, you could before, why can’t you now?” adds to my own self doubt, which in turn adds to my grrrrr with self, like “why can’t I??” so I push self and pay for it. It’s all a vicious circle.
Like you say " I am in control of me…" so I have to learn to manage and eventually I might get a bit better at that ‘acceptance’ bit.
Merl
Hey Fred,
my eyes have been my ‘barometer’. There were many symptoms I had had but none that had been identified as a concern. Then one day driving down the road and the lights went out. I couldn’t see. This made the dr’s investigate a bit more and eventually operate. Post surgery I had all sorts of optical symptoms, bright flashes in my peripheral, pulse waves over my field of vision, they were put down to everything from stress to psych. It was easier to say I was delusional than investigate. So I ignored the symptoms, then when I collapsed at work the dr’s queried why I hadn’t gone back to see them. I had informed the dr’s previously and been written off, so I gave up. So why would I go back to be told the same darn thing. I was told by one dr I should not have given up, which in hindsight is probably true. I’ve had a couple of other optical hiccups since and as soon as I mention this to the wife, she’s calling me an ambulance. When my eyes go wrong, it’s a sure sign there is something else a miss. I have been to see an ophthalmologist and he has said it may well be scar tissue causing the effects and has suggested that further surgery to remove the scarring could reduce the effect BUT the neurosurgeons have said yes they could operate but that this would lead to further scar tissue being created. So for me, it’s a catch 22 scenario ‘further surgery to help or further surgery to hinder’.
All I can really say from here is that if you have a concern, talk to your neurologist. He may even know of medications that could help
Right after my brain injury my right eye was blind but then the vision came back to it and I think when it first was coming back I would lose eyesight or regain it a little bit, it’s hard to remember but I’ll bet that over time your vision will no longer disappear in your eye and again I say it to thank you all for sharing that this happens to you too I only have sometimes 10 hours a week of energy and it’s getting more up to 20 hours maybe over time it does get to be a higher limits it’s good to know to pace yourself though I recently really learned that from my physical therapist just how some days you really can only do these certain things and then you got a kind of take it more easy. For a while I was just always overworking my energy and then I was way more prone to panic attacks or nervous system overloads and it would take me much longer to recover than if I had rested before I got really drained.
I also really think that sings like ashwagandha really are helping my memory and my energy levels because it’s an adaptogen, there’s even science proving it helps with memory and just in general maybe getting advice from your doctor or nutritionist like I have a nice neurologist experienced general practitioner doctor so I’m really lucky he’s helped me get supplements that are really helpful for my brains recovery and like I had to discover I have a gluten allergy and that really helped my recovery to avoid gluten and even I read this book called Eat Right For Your Blood Type and I’m blood type O and I just do best if I don’t eat a lot of green and I eat a lot of red meat and then a lot of greens and a lot of vegetables that a lot of fruits and no added sugar no processed foods I think you guys would find similar things really help you most of our immune system is in our digestion and most of our energy is in our immune system
Thank you,I’m so glad I joined this,my friends that have no injury tell me to get over it or suck it up,or I’m a failure,my brother in law calls me stupid.my neurologist says I’m lucky I can function at all,I’m so confused,I feel like some kind of mutant? Last Xmas I could not think well and my son beat me unconscious to smarten me up he said. This has been my life for 20 years,
and again I say it to thank you all for sharing that this happens to you too I only have sometimes 10 hours a week of energy and it’s getting more up to 20 hours maybe over time it does get to be a higher limits it’s good to know to pace yourself though I recently really learned that from my physical therapist just how some days you really can only do these certain things and then you got a kind of take it more easy. For a while I was just always overworking my energy and then I was way more prone to panic attacks or nervous system overloads and it would take me much longer to recover than if I had rested before I got really drained.