Not looking so much for solutions as to share thoughts in a safe space (that of the 'Fellow Bewildered', as someone put it).
Today I had the worst symptoms I've had in a while. Not so much the headache (which is something), but was so, so tired I think I could have stayed in bed for twenty hours given half a chance. In fact, I suspect my body needed to. Was in bed for about 14 hours in the end (except eventually getting up for a cup of tea in that time) - at first I didn't even have the energy to roll over and get painkillers from my nightstand (period pain).
Anyway, I had to get out, to go buy food for a friend staying this evening - despite not even feeling like leaving my bed. An almighty struggle to get up my (hilly) road, stopping and holding onto the wall. Very fatigued and short of breath, but worse, really, really out of it, as if I were really drunk; confused; just wanted to lie down on the pavement and sleep.
I was listening to music to keep me going on the c15 minute walk. I shared my live location with a friend, scared I'd pass out. Suddenly I had just stopped to cross a side road and was looking forward when before I knew it, a cyclist was shouting at me and turning into the road in front of me that I was about to step into.
I didn't look over my shoulder (I honestly have no idea if I was going to, but I suspect not - I don't seem to be very feeling to do this for some reason) and I had my music in, but the experience really shook me up. A couple of people looked at me but noone checked I was ok. I was then crying my eyes out on the phone to my friend. Eventually made it to the supermarket, completely overwhelmed, struggling to harness my thoughts to get what I needed, then really pissed off that there was nowhere to sit. I eventually (very nervously now!) crossed the road to sit on a bench for a good while, have a drink, and gather the wherewithal to carry my really heavy bag back home.
Without knowing it my live location has ended.
I am terrified of having a secondary concussion; my first one was so freak, that I don't feel I can rule out another one. (It wasn't ruddy rugby - why is it always rugby?!)
But I need to buy food, sometimes including on the days when I'm not really well enough to leave bed.
I'm not normally this bad - yesterday I walked 6m and got 100m to the top of Kinder Scout! (Yes, I know there's a link...)
I expect I actually just need to sleep a lot more, more than my bladder and mind will allow.
But honestly, I'm so tired of feeling scared just to go out to feed myself because someone might crash into me. Noone seems to give me any personal space, and they assume I'm fit and well because I look like I'm in my 30s and carrying a heavy hiking pack (although it's actually because I can't use my car to shop...). I've tried walking with walking poles but again people assume I'm going hiking, not that I need a walking aid.
I don't know where to get a walking stick, but I really wish I could signal to other people to *give me some space*. (The sunflower lanyard wouldn't be much use for cyclists or drivers coming up behind me...)
This evening I'm really thirsty. I have no idea why. Weird.
That's all. I'm just feeling *a lot* about this now, angry and scared and fed up and just, #yesimstillconcussed, and it shook me.
Thanks for listening. Nice to share the fragility of our existence, eh?
Take care all.
Written by
Ideogram
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Hi Ideo. Like so many posts on here, I read yours wondering if it was something I'd written! But I think some of that was also your writing style. Did you wander in the halls of science in your former life, by any chance? I used to wander in those halls, explain how to the silly scientists to write properly.
Short version on my reply. Yup, this is such an frustrating part of adapting to our new selves. It's only lunchtime, I got up at 11am today, and I'm absolutely exhausted already.
Haha, I used to break into the library of the Department of Material Sciences and Metallurgy as a student, because there was absolutely nothing to distract me from my work! I'm a classicist by trade (well, degree) so no, I'm afraid I am utterly useless if you need to understand how anything whatsoever works...
Hello Ideogram, why don't you order your food on line for the week and have it delivered? Brain injury takes a lot of getting use to the change and we do get tired very easy and we do need to rest and sleep a lot. Sending hugs, you can buy anything on line, even walking sticks. Sorry you are going through this at such a young age, do you have any family or friends that can help you with your daily life and needs?
Thanks. I do have good friends but this was just trying to get to a local shop which I can manage on good days - and I fear if I stop doing things I won't get back to them! Not sure online shops are that effective for one person for the little bits you suddenly realise you need in the week. Thanks for the thought though.
Bless you, you express yourself so clearly and movingly, as I read that I just wanted to give you a hug... Regards the walking stick charity shops often stock them, if there is one near you, you may need to ask as they may have extra stock in the back. Is a shopping trolley an option? Just recently I have seen the occasional younger man with one.Hope today is better.
You write well, Ideogram. Yes, been there. Like Silkwood - my thought at the end was - you need a hug. Assume a large hug - that was from me.
The supermarket experience is pretty normal for me, as is the 'too tired to even think about getting out of bed'. Last week, (on one of my good days, with no headache, and having just shopped) I told my husband that my car battery was down. Turns out I wasn't putting down the clutch, before trying to turn on the engine!! The battery light was showing, of course.
I stopped driving for a bit, until I started to feel better again.
More sleep - a couple of days of getting up on time, and doing ordinary things, albeit at my slow pace - then, tried the car again. It was okay. Left it at that.
Today again, I did okay - went off to a clinic appointment, and got back safely.
All of it is tentative, isn't it - two steps forward, one back.
I'll write to you what I usually write - the only way I cope is write a day-log - good days and bad days. So I can track what is going on. The worst feeling for me is to 'lose the days' altogether. That kind of made me think I was drifting away into unknown territory. Its in a big font. And I jot down what I did - that way, at least I have somewhere to consult as to what I have done today. Sometimes it is more than I think. And partly because I am writing it down, each little thing I do seems like an achievement.
Getting along with that. It does build up to quite a lot, actually.
You are far from alone. That desperate need to find a seat, really resonated with me. There are a few of us here on this platform.
Thank you. Can't even imagine driving at present but not being able to do so is one of the hardest things; I've become some sort of elderly spaniel that needs taking out for walks by other people when they have spare time! Hence the determination to be able to at least go places on foot. Am writing things down, and trying to sleep more at least. Thanks for your kind words.
😀 I refuse to see you or any other person as an elderly spaniel!! This is a temporary aberration - you WILL be able to drive in a bit. It took me a while, actually.
I can't read for any length of time. That really annoys me. But I read a whole book recently. That felt like a huge achievement.
You'll get there too. Pacing. Just clock-watched pacing. That's what works for me. It's mighty boring. But it is practical. Also predictable, cutting out anxiety. Give it a try.
Is there anything you could do to save energy? How about a trolley to bring shopping home? Bag sounds really heavy and that adds to the load. Could you get a hi-vis vest with applicable writing on it? Seen one recently. Having a rest on the bench was definitely a good idea. Also how about explaining to your friend how it affected you in just getting food for them. Would they bring food to you. They may be horrified how their visit affected you. I know how tricky it can be to ask for help but it's worth it. Bit of a way to find your real friends too. Take care & get the rest if your body needs it.
Thanks. I think dragging a trolley up and down the hills round here would be even more tiring tbh but you're definitely right about resting; something I'm still learning to do better...!
Ask who you see about effect of weight bearing loads against trolley. Still reckon trolley is easier. Chiropractor, therapist may be good for advice. Mine tells me off for a heavy bag.
I'm with Babs - my first thought was "why doesn't Ideogram place an order with Iceland?". They even offer same day delivery now. I gather Amazon has got in on the same day act, offering delivery in 2(?) hours in areas covered by their scheme. When I used to visit supermarkets, pre-ABI, I always bumped into people I knew. Someone different every time. Now I cannot get there, I miss these random rendezvous. So, yes, there's a social hole that online shopping cannot fill. It does, however, help give me a reason to carry on. I support the Teddy Trust and buy and donate teddy bears to be sent overseas to traumatised kids. The act of buying the bears then receiving, unpacking, checking them over and repacking them to be shipped to the charity helps me. I like to think about the dozens of beaming children who'll receive a bear. I've set myself a modest target of 100 bears this year. So far, since January, I have donated 49 (including the ten I am about to commit to the post). The "Click & Collect" service offered by Royal Mail works brilliantly.
My point wasn't really to get solutions - and for me personally, I want to try to avoid shrinking my world further where possible (no judgment at all that everyone needs something different). I just tried online shopping now out of interest on a couple of different platforms and getting what I need within a few hours isn't an option, so I think I'll stick to going out myself or waiting where I don't have the energy (the big shop is fifteen minutes' walk away, but that's fifteen minutes back up a very steep hill!).
This week has definitely taught me that I need more rest, though. I'm not really sure why I've had worse 'bust' days than normal - I expect to be tired after a more energetic day, but not this much! - though there's probably something in hormones in it (I wonder if other women have found that the severity of their symptoms changes a lot with their cycle-? So it's almost impossible to see if there's any progress happening). Sometimes I feel like yelling to people in the street, 'YOU try doing this with a brain injury and menstruating!!'
Of course, then I realise that the person on the street may well also have one. We just don't 'look' like it.
Anyway, I really value having this arena to be able to express my thoughts.
Most of this platform is about feeling heard, after all.
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Feeling a little freaked out!
How to freak people out
Exhausted (and really frustrated about it)
Getting There
