Yet again it's late at night, and I need to be winding down to get good sleep for work tomorrow, and instead I'm stressed up to my eyeballs and angry and wired. I'm getting so sick of this that I feel like just throwing my hands up and not bothering.
I'm not really looking for advice (fundamentally the answer is just that - it is bloody hard), but a bit of support and any words of pep you might have to spare please.
As much as anything, I need to be able to get this off my chest.
I'm nine months into PCS. In some ways I have improved - cognitively I'm definitely a lot clearer, though I'm not back to normal - but fatigue, and other symptoms with it, is still very much an issue. I don't think there's much more pacing that can be done - there's not really anything else I can drop, and I already have pretty low quality of life. But in short, I probably 'seem' more normal than I did at first, but in reality I've also got a lot more used to adjusting my life to what I can do.
That first crisis of grief has eased a little, but the constant mental - emotional, intellectual - load of the sheer, ruddy... *admin*... of having a brain injury is getting to me.
I'm single - so I feel like I'm both patient, and my own carer/secretary.
(I have one very good friend who's been great, and family three hours away, but they can't do all this for me.)
I seem to be spinning so many fires, or fighting so many plates, whatever you want to call it, and I'm exhausted.
This means.... trying to wrangle my way through the DVLA processes; attending and prepping for umpteen medical appointments (some tangential to PCS - my only real ongoing treatment is three more vestibular sessions left); having to explain my medical history to so many people, but forgetting exactly what symptoms I had on every different aspect, so I feel like just telling them words they want to hear - and having to explain that this *isn't* just anxiety and *does* need them to do something...
Then work, which is adding stress (unnecessarily!)... I've derived a lot of cognitive progress from it, but frankly, my work is a bit of an omnishambles at the moment, lots of change, everyone wanting to leave. I can't take much more uncertainty - my phased return has been mismanaged; my new boss says the right words, but is mostly absent and I'm pretty sure still hasn't even read my workplace adjustments passport. I had to hold my progress review with myself. Etc etc.
I think I'm being entirely reasonable in being overwhelmed by so many different aspects of my life kicking off and needing me to step in and fight for myself - whilst working part time and doing gym rehab three days a week. And of course, I can't do my normal things to unwind at the end of it (walk, climb, drive myself somewhere pretty, even watch TV or read without symptoms).
So I'm not looking for advice on the treatment side but - how do you keep going?
Particularly those who are on their own?
In some ways I am bloody proud of myself, but god I want a normal weekend away from all this, one that won't just make me fatigued and sicker, sometimes!!
Thanks all.
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Ideogram
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Don't we all need a day away from it all ? I know you didn't ask for advice, and just wanted to get it all off your chest. But have you tried mindfulness? Just a thought. Throughout my recovery, I have had to use mindfulness. Its a skill I already had, so it was a no-brainer for me, but those who didn't learn it early in life, and then get a head injury, are less fortunate, I think. That's the one tool, that was really handy.
What can I say? You aren't alone, ideogram.
Keep at it. Slowly, carefully, recover. Then, there is a (slightly) easier path ahead. Improving is always a good thing, and the fatigue does improve I am told. I am two and a half years in, and I get tired less often.
Oil your body, bathe, relax, sleep, listen to music, do ten or fifteen minutes mindful listening...... that's me talking to me. How much that will work for you, I don't know.
It may seem a bit blatant to say this but you are already a winner. The fact that you got up this morning is a win(even though it may not feel like it) remember that it’s a bad day, not a bad life. Take a deep breath and close your eyes.. now open them and look how far you have come. How much you have achieved and accomplished and it’s not over yet why… because you opened your eyes and got up this morning.. ready to face the new day. Every achievement whether big or small is an achievement and you should be proud of yourself 🙂
Hope you eventually got to sleep, I was put on amitripyline to let me get a sleep, it fudge work. As the rest say you have gone well even getting up! I have had psychologists teach me lots of things like the "spoon therapy" this shows hiw much energy it rakes to fo things. Getting up us one spoon, getting dressed is one spoon, getting washed takes 3 spoons. So fo mit be hard on yourself and praise yourself for each day you fo these basic things and even mire if you ho to work.
I have list my job and many others have, it us part if the process unfortunately due to no employer following adjustments. Changes are very hard gor anybody with PCS as the key us repeat.
The mindfully exercises are good and so are the CFS (cognitive fatigue syndrome) you tube video's. There is one where this lady has recovered but it took 10years. She teaches to to daily small movements and then they slowly improve as others have mentioned until recovery.
CFS is basically your body has got an infection and the immune system cannot seem to get rid of it. Slow movements and mindfulness, taking it easy, don't be hard yourself and prepare yourself about work and changes are very hard to accept. Congrat yourself each day on learning one new thing that you can adopt in the changes.
Might seem a long rec9very but you will get there, keep yourself laughing with your friend. Even laughing yourself brings in happy hormones to recovery. Fo try you tube videos on Fatigue exercises and learn about it as very educational.
I did have to laugh one day when I went for a walk out in the Peak District, aware that I was really low on energy. Then I looked down and there, among the heather, I found.. a spoon 😅
You're doing loads, you're doing really well to even be doing this much. These things like the extra bureaucracy will ease up, but it is enormously tough to have to navigate everything.
With the benefit of hindsight I think being on my own has made things easier in some ways, because I haven't had to adjust around someone else's expectations. My tv can pause as much as I like, and if I'm too tired to cook I can eat a sometimes odd mixture of food out of the fridge without comment.
(And now I've met someone who hasn't ever seen the old me, so there's something new to navigate.)
Thinking of you - is there anyone you can just go and stay with for a couple of days for a break and not have to think about everything?
Thanks. My Mum is actually coming up at the weekend to help me with cleaning and get me outside so that's taking something off my mind. I'm hoping to get away at some point but I find travelling so fatiguing (especially on public transport) it's hard to do without needing several days to recover.
I agree with you on living alone actually - I'm very glad that I get to curate my environment (with the limits that you can do in a rental) and just don't need to argue about things like having the blinds drawn all the time or having things spread out on the sofa so I remember them. That's been proved when I do go and stay with family and find the environment really hard - particularly in the early days over Christmas then the TV and lighting were unbearable. I hadn't really noticed but those things have got every so slightly less problematic, now I think about it.
I could definitely be in a worse place. Just tired.
it’s a rollercoaster same as any life we live just this ones lows are very low and I’m sure for some the hi are very high . For me the highs are more rewarding , blessed , amazed I’m doing what I am doing …
The low never stop as they are a part of everyone life . Try to remember that the lows don’t carry on forever and make plans to do something you like .. it might not be the same as before as you may need more down time but that is ok . Every word you wrote I could have written . Keep manning /chatting / asking on here as this does help just sharing your frustration with people who know what you’re saying .. Sue 😊
Classic case of needing a month off IMHO. If I ever felt like that my GP would sign me off without me even asking. In those days you could easily see a GP (and usually your named GP) & there was consistency of care without the need to educate and explain every time. A fit note of unfit for work due to TBI, stress & anxiety (tell them that you want that stated on the note) would be strong evidence & make your boss do their job. You shouldn't feel so overwhelmed with some time off and that will give you time to relax as best you can and focus. I know that you didn't ask for advice but you have to take the heat out of your situation as best that you can.
Thanks, but tbh in my job it would just make things an awful lot harder when I came back. I've finally made some progress getting back up to speed after six months off, AND scoping out and pushing forward a programme of work, so definitely don't want to lose that - though I might add in the odd extra day off at some point (hard to tell what my leave entitlement is ATM as I don't know if I'll be moving onto a part time contract).
Totally agree with re GPs - I've actually been super lucky that one GP has wrangled the system to let her keep seeing me, and always puts in follow up calls so I have continuity, but this is only because a) my mum got so sick of me having no help that she walked in there and demanded I be seen and b) this particular GP has Long COVID herself so has some idea what it's like. I've been very lucky to have her and dread to think what it would have been like as I very nearly didn't. She will issue any fit notes I ask for tbh, but more sick leave isn't really sustainable in this instance (particularly as it would very soon become unpaid).
I can’t say I have comforting words to say. I recognise everything you’re saying. I’m 10 years on from a stroke. I’m just getting more belligerent. I know I’m still very capable. I know there are people out there who would struggle with a normal brain.
I now just say bugger off and go and have a 40 minute nap.
You’ve got to give yourself a slap on the back and tel yourself you’re doing better than most.
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The Survival
I'm new here, few questions about my bleed and PCS
