Celebrate the little wins

[Bb1878]

Hi All, I hope everyone is doing ok. Ive posted on here lots over the last 2 years. Ive had PCS since a head injury in 2020. Since then I've had so many ups and downs, false dawns, boom and busts, all the classic PCS symptoms- u name ive had it! (and continue to do so). Well.. today I've just had the best day I've had that I can remember since my accident😃. It's now 7.30pm -I've been up since 7am. Did both schoolruns with my daughter. Did a full days work on the computer (wfh) Went for a gentle jog/walk in the morning, took the dog out to the woods at lunchtime... then jet washed the car this evening. Plus i put 15,000 steps on the smartwatch..I'm not quite sure where this energy has come from today - I'm usually exhausted after minimal physical effort- not that I'm complaining! I fully expect a bit of a crash after this but wow it's been worth every minute - felt almost back 'normal' today (whatever that means!) Sorry for blowing my own trumpet so to speak, but i wanted to get this down in writing while I'm on top - as I know it wont last..and hopefully this can give some encouragement to ppl who are on the PCS journey in showing that better days can indeed be ahead! 😃 Anyway, thats all folks. Take care and all the best! Bb

[cat3]

I hope you don't crash too hard Bb. If you had the sunshine and blue sky as we did here in the NW today it might explain your dynamism ? I've been known to wallow in burn-outs ; preferring to feel pampered and proud rather than exhausted... 😁

Well done m'love ! x

[Bb1878 in reply to cat3]

Thanks Cat - it's been beautiful here today aswell - u could have something there! Maybe I should go live somewhere warm like Miami 🤣. Best Wishes, Bb

[Hidden]

Nice one, it'll all come back, one day you'll notice that you have more normal time than TBI time, hopefully your balance is shifting in the right direction.

[Bb1878 in reply to Hidden]

Thanks Pinkvision, yes I am generally feeling a little bit better overall, bit more like my old self dare I say it! A few other observations I've noticed - i don't need as many daytime naps as this time last year, a 20 minute 'power' nap in the afternoon gets me thru the day mostly now, plus the 'crashes' - even though they still occur I find i am recovering quicker from them now, usually within a couple of days versus a week or more 12 months ago My vision/light sensitivity issues also seem a little better more recently aswell.. so fingers crossed things are heading in the right direction finally 😀. Thanks again and best wishes, Bb

[Hidden in reply to Bb1878]

I can recognize the same patterns of your recovery in my journey. I found neutral grey transition sunglasses boosted my energy levels by blocking out excess sunlight. Like Plenty I had an exercise plan, mine was mindful movements, barefoot walking in the park (really trippy, but good for balance and posture) and a long walk in the afternoon.

Keep going and good luck.

[Bb1878 in reply to Hidden]

Thanks Pinkvision, yes I wear grey tinted glasses most of the day now while working on pc, I'd never linked it with increased energy tho - maybe that's contributing to the improvements as with yourself, never thought of that! Cheers Bb

[Plenty]

sounds like a high achieving day. I can definitely relate to the boom and bust and the mid day nap/rest etc…

I’ve noticed that if I start the day with exercise, walk, run or workout, I preform better for the day. and I can definitely notice the difference if I don’t or can’t.

It’s not a cure, but it helps.

Also a daily gratitude list, to note your achievements and accomplishments. Things your thankful or grateful for each day. That can be a very powerful habit to get into.

[Bb1878 in reply to Plenty]

Thanks Plenty, that's great advice - I certainly dont do that enough, seems my mind focuses more on things I cant do instead of being thankful for what I can do - i will try and take this onboard 😀. Incidentally regarding exercise- I try and do what I can in the mornings also as this is the time I feel at my best - exercising of an evening is just not an option for me atm but it does make a difference for sure, even a gentle walk can make a big difference, one step at a time as they say..😃.Best Wishes, Bb.

[Tebbs55]

great post , good days and bad as we all know but positive

[Nemo24]

Great read thank you.

[Catperson18]

Sounds like a great productive day! It’s great to be able to be happy with what you have achieved! Just make sure you go easy on yourself and make sure you take time to recover when you need to. I have just had to make sure I listen to my body and make sure I get the sleep I need to re charge. I do have helpful tell in that the lump of what I presume is muscle by my temple under where the plate was fitted tends to become more pronounced if I am tired!

[Bb1878 in reply to Catperson18]

Thanks Catperson18, yes you are right it's important to listen to your body, I've been guilty of 'pushing thru' the fatigue so many times in the past, but always end up losing in the end. Incidentally my 'energy high' lasted until yesterday afternoon (so two and a half days! ) before the inevitable crash happened, altho as crashes go its not too bad really, just mainly fatigue atm - but I have come off the back off 2 'high achieving' days so no surprises really. I know for sure this time last year I couldn't have dreamed of having back to back good days like this, so very happy with that - but now it's time to give the old bones a rest for a few days! 😀.Thanks and best wishes, Bb

[Painting-girl]

I think that we have to do the good stuff every so often to keep our mood up - it sometimes ( not always..) helps me to handle a slump if I'm on a bit of a high from whatever caused it. It is important to notice when we are having a good day - whatever that entails for you personally, as I think it's all to easy to only notice the bad days.

Wishing everyone a good day, and or at least a not too bad day. Am off for a nap!

[dark-angel-79]

late to the party on this one!

hope you took a few days of doing the minimal to look after yourself and ensure you are rested. a light is brightest before it disappears.

I will say this though . WOW! sounds like you had an amazing day. hopefully you will have more like this adn continue to share in your little wins, for one person, it may have only been a footstep taken, but for others - it woud be a step on the moon.

[Bb1878 in reply to dark-angel-79]

Thanks dark angel, yes it was an amazing feeling, almost felt back to my normal self. The energy high lasted another day or so actually before the inevitable crash - altho it hasn't been that hard a come down really, just fatigue really (not that I'm trivialising fatigue we all know how debilitating it can be!) no nausea or other issues thankfully. I've rested up for last couple of days now so here's hoping the next good day won't be far off - altho I might dial down the physical activity a little bit next time! 😀. Thanks and best wishes, Bb

[wonkystairs]

Just hopped on here and saw this and it has really given me hope so thanks for that. I fell down the stairs nine months ago, whiplash injury and stitches in my head so head and neck affected. CT scan showed "nothing to worry about" whatever that means. Have had all the classic symptoms, "boom and bust" is certainly the right phrase it's one extreme to the other. Still have no strength in my body and tire easily. I sooo miss swimming and long walks with my dogs but just managing a few hours awake a day is a win at the moment. I'm lucky that my mental health hasn't been affected and managing to stay positive (although frustrated). Looking forward to being where you are. Well done and I hope you continue to get better x

[Bb1878 in reply to wonkystairs]

Hi wonkystairs , good to hear from you.

Im sorry to hear about your accident and your subsequent problems - i really empathise with you as I have been exactly where you are right now!

My accident involved a slip on a wet tiled floor resulting in me knocking myself out after banging my head- that was almost 3 years ago now and its fair to say it has changed my life. Ive had so many ups and downs since then like so many others on here, and like what you are going through right now.

You are still quite early in your recovery though, even though its probably been the longest period that you have felt unwell i would guess?

As mentioned I am almost 3 years in now, and I would say that even though Im not back to my pre-injury condition I am so much better now than I was, even 6 months ago.

I was just looking back at that last message I wrote 5 months ago - id just had a really good day and wanted to write it down, both for myself to look back on but also i thought it might help other people - im glad it has given you some hope because recovery IS possible! It just takes time - and patience.

Ive had lots of ups and downs, booms and busts, false dawns and crashing breakdowns - you name it Ive had it. What ive learnt is this - you have to learn what works for you - and you can only do that by trying things - and inevitably failing at it a lot of the time!

I used to try and 'push' through the fatigue with the attitude 'i should be able to do this' / 'Im not letting this beat me' etc - it doesnt work! Ive become much more accepting of what I can do and what I can no longer do, and I listen to my body a lot more now .

I used to run 5k 3 or 4 times a week before my injury and was very fit (for my age!).

That stopped after my injury as I could barely walk up the stairs in the early days. However, after the initial "acute" phase of recovery had passed (first 6 months or so), when i felt strong enough i started walking a short distance each morning, when i felt able to - and that became my 'thing' that i did each day, walking in the fresh air was probably the biggest thing i did which made a difference for me both physically (i felt stronger and fitter) and mentally (it helped clear the brainfog). I built that into my daily routine as a core thing, and it made a massive difference - and I still do it to this day.

Brain-breaks aswell - so important, you say your sleeping lots and lots - this is normal, and will improve with time. Good sleep hygiene is so important in your recovery - try and get a settled routine (same bed time / awake time each day) if you can, difficult i know when you probably need 3 or 4 sleeps a day atm but if you can, keep the daytime sleeps to a shorter period (i sometimes have at most 40 minutes during the day now) but even a ten minute nap here and there makes a positive difference. Try to be consistent in your sleep/wake up time., including weekends.

I had a period of (what i now know were) "hypnogogic" hallucinations at night - really scary stuff at the time but i know now that this was just part of my brain recovering and is apparently quite common.

Fatigue, is probably our biggest foe - and unless you have experienced it like we have its almost impossible to understand isnt it? Its so much more than being 'tired', and doesnt get refreshed by sleeping or resting. I became so de-conditioned because of the fatigue i put on over 2 stone and that made everything else so much worse. I visited my doctor so many times with fatigue only to be told I was obese and needed to exercise more! That didnt really help me when I was unable to do any exercise due to the fatigue! I realised i had to do something myself and i suppose i became my own doctor and decided i had to "fix" myself - and with the help of this forum and the great advice of so many good people on here I have done so (to a certain degree) . The walking routine was massive for me, and enabled me to build upon it over time. Over time Ive gradually built up a resilience to the fatigue, and although its always with me I can manage it a lot better now (even though i dont push things too far as the body will let me know!) .

Anyway, im rambling again (im good at that!) - roll forward to the current day - im at my lowest weight for twenty years, im back to running 5k 3 or 4 times a week and i feel good most days.

Ironically as i write this i know ive overdone things recently (prob one run too many in a short space of time) as im getting those nauseaus feelings again which usually mean a crash is imminent - im tuned into this now though and will be taking things a lot easier for a few days until it wears off - which it will.

I wish you all the best with your recovery, please let us know how you are getting on.

Best Wishes, Bb