The uphill struggle to recovery

[pando]

Hello wonderful people,

I’m imperfect. Today I struggle to survive. I’m lost.
I would almost suggest not reading this.

I’m often amazed at how much hardship and suffering is endured here.
I obviously never thought much nor tried to think about people having a hard time.
I would imagine life and happiness are too valuable to even want to make a fuss lest we drag others down. Well, like it or not, now I’m firmly in the camp that struggles.

On my affected side, there’s nothing that has escaped untouched by my stroke 9 months ago. My eye socket is tight and uncomfortable. My glute locks up regularly every other day. Bowel movement is weak. Water works unsettled. Immune sytem compromised. Paraesthesia from my foot to my knee. I can’t walk much, only a limited amount, with a stick. I can hardly feel anything on my stroke side. My proprioception is negligible. I wonder how many things I leave out ?. douzens probably. Even my hearing changed, but I managed to have mey ears cleaned out at Imperial hearing…( I can hear up to 14k which I’m happy enough with ) so I’ll be listening to some music on my hifi today… that beats watching TV.

But come to think of it life is hard. Even my wife just went into the garden to cry and pray ; she can feel my low vibes, today. Somewhere, quickly, I need to pluck up a bit of courage or inspiration. Days have become dull and monotonous ; how do I break this mood ? The struggle to find hope and the possibility of getting my life back dwindles. I even doubt my magic wand ( Iteracare wand ). What can I do ? I, who always comes up with an answer or at least a plan ? Help !! I may have exhausted all my ideas… my energy needs a boost from somewhere… where o where do I turn to ? Is God mad at me, and why in Corinthians are we told that no test will push us over our limits ?

Well today I struggle. A locked glute two days in a row ( for the first time ever ) is not a good sign, and scares me. I shall have to come up with something to preserve my sanity. I said 9 months ago that I didn’t wish to drag my wife down… she refused to leave me, luckily… so I said I would live for her. That’s what I told myself during my stroke. I felt it could go either way when my BP was 268 / 198. I chose the more complicated option ; survive. Now I have to survive. Somehow.

I’m not the only one with a hard life ; I read a lot of battles that go on all the time.
To all those that have a hard time may you find peace and happiness.
May God be with you all, Amen.

[Mrs5K]

@pando so sorry to hear of your struggles today. No one can be positive all the time so don’t beat yourself up for having a bad day.

Try to find something nice to do today. Music is a good option. I find it very soothing.

Sounds like you haveca very supportive wife and i’m sure she’d rather have a broken you than no you.

Sending you lots of love and my very best wishes.

Stay strong.

Ann

[Susan_Jane]

Hi, so sorry to hear that you are feeling down and are struggling today, I feel the pain in every word and I’m sure that everything you say in your post will resonate with lots of the contributors on this forum.

One of the things I find really difficult is trying to be up beat and jolly when someone asks how I’m doing and I don’t want to burden them with my problems, so I just smile and say " I’m good thank you", when all I really want to do is scream !!
I hope writing your post has helped lift your mood and has been helpful to you.
Keep writing and we will all keep listening. My thoughts are with you and I hope you will be feeling brighter soon.

Keep on keeping on. Regards
Sue
, ,

[pando]

Thanks, Loraine

I thought my post would be one of many such posts about post stroke recovery.
I definitely feel silly, now that I’ve posted it. But those are my feelings today. I’m usually more upbeat; today things conspired against.

The BP issue, hopefully, was solved once and for all while I was in hospital for 3 weeks.

Well thanks for encouraging me, it was / is much needed
I will reply to this thread once I have pulled myself back …
maybe reveal what inspired me on ?

I can’t get in the bath
; I shower until I can bath again, one day

Thanks again, Loraine. Take care you too.

[pando]

Thanks Ann,

True, a broken me is better than no me ( to my wife, at least )
I will try and recover some strength ; it need to come from me, I guess

Thx again, best wishes you too, Roland

[pando]

Thanks Sue,

II’ve not got the energy to scream …
but maybe i should give it a go
thx for you kind words

take care , Roland

[pando]

Thank you Mahoney,

yes, I’m guilty of being fragile… as fragile as we come

Thanks for the hugs, ciao, Roland

[pando]

thanks, again, Loraine

I feel silly, saying one day I’ve had a breakthrough then 5 mins later claiming I’m down and out… I wish life were a bit more stable ; that’s my signature quality in life ; stability… well, it’s no longer like that… by a long way

ciao, Roland

[SimonInEdinburgh]

Well I did read and I’m glad I did
And this is long in fact should be marked TL;DR!

I sat a long time thinking how to respond to your post. After some consideration I think the first thing is to say “thank you for sharing” You’ve put out there shades of emotion many of us feel at different times.

The thing that struck me as I read through was the quest to, as near as I can remember/ summerise it ‘get your life back’. I recently posted some memes I’d stolen from a Facebook group; one of which was 'we don’t recover, we go on and carry the event with us."
I have always preferred the term stroke warrior to stroke survivor because I don’t feel my stroke defines me. It was an event. It’s past. It’s left a permanent impression so my future is on a path that wasn’t the one I anticipated the day before the stroke occurred.

For me, and I offer it as a thought to ponder for you; I haven’t been on a journey of recovery but of capability development. The stroke closed a chapter but it also opened all the chapters yet to come.

I’m not a big planner (which may be ironic since I used to teach project management), I’m a make it up as a go along guy - I’m quite orientated to the opportunities for serendipity that that affords

That for me is the core of my outlook or attitude; forward looking not backward looking, embracing opportunity not lamenting the loss of what was envisaged but isn’t now a plausible reality.

I’m still searching for interests and avenues down which to spend my time with the capabilities I have and I aspire to acquire. Eg My wife has rejoined a pottery collective. She fired some things using the raku technique, they didn’t come out to her satisfaction. I suggested gilding over the places where the glaze hadn’t worked and for 12 quid I bought a starter kit. I’ve had a very happy time over the last couple of weeks gilding everything from peach stones to vases, and her other kiln disasters such as ‘profanity buttons’ that stuck together and had to be sawn apart and then I gilded over their injured surfaces and they look quite good!

The dexterity needed for the gilding is definitely beyond my current abilities so I’ve been questing to acquiring more dexterity.
The result is I’ve had a host of capability enhancements in the last two weeks.
Literally today was the first time I’ve been able to bend my index finger at the second knuckle. I can make the “O” part of an ok hand signal for the first time since my stroke.
It’s only attitude that is the difference between calling that capability acquisition and calling it recovery. But that attitude of development for the forward looking mindset gives me hope for the future rather than despair caused by a past and unchangeable event

Thanks for your post. Mainly I post here because writing helps me to make sense, to explore and crystallise my thoughts. you gave me the opportunity to do that down a path that needs to be revisited a few times to clarify my own understanding

If you’re off to listen to some music what is your choice going to be? I seem to remember you play the violin? that could be my strokey brain making it up.
That wood certainly be a recovery journey that I would understand the desire to reinstate. I have a desire to reinstate my calligraphy skills. In this regards where the aim is the liminally recovery I do plan. It is a series of milestones with that as the grand goal at the end and the inch pebbles towards it are the bending of my finger, the grasp of the pen that is still a milestone ahead - but it’s closer as a result of this morning’s discovery ( which I practised about a hundred times in the last five or six hours and we’ll continue to do until I can hold the pen ). the next capability or a concurrent one will be the sweep of the wrist that enables me to produce elegant and free flowing curves. But that is in the future and the future is dependant upon today

Today can either be one in which I take a step closer to that future or one where the future stays out on the horizon for reasons beyond my control and therefore reasons I have to accept and patiently out wait. I tried to embrace those delays as just part of the journey. And not things that weigh me down. I don’t know if any of this helps you but it helped me
Ciao
Simon

[Mrs5K]

@pando never feel silly. We all understand the ups & downs. Stroke journies are full of break throughs & just when you think you’ve cracked it you feel rubbish again. But hopefully each & every time the hill back up is slightly less.

I recall when i climbed my first stair post stroke. I was elated. The next day I couldn’t do it. I was distraught. But it came back again.

Probably small in comparison to how you are feeling today. You will be stronger again. Don’t be too hard on yourself.

Take good care.

Ann

[Janetb]

you are still here. You are a survivor. I’m sure that is better than the alternative. Do you keep a diary? It can be helpful to look back at where you have come from and the progress you have made.
Hang in there.
Janet

[Ingo66]

@pando, sorry to hear you’re having a bad spell but it is par for the course for all of us. I don’t often post my bad days but it doesn’t mean I don’t have them. I hope you turn a corner soon and start feeling more positive.

Both @SimonInEdinburgh and myself were talking a week or two ago and we have both made new breakthroughs in the last few weeks, even though we are over two years post stroke.

So take solice in the fact that significant improvement still happens long after the six month window (that the experts talk about) closes.

[pando]

Your post is very positive, Simon.
I always read what you write with interest, because I cannot predict or anticipate which way you’ll turn. Firstly, I think you have every right to rejoice at your progress with your hand… it’s exciting to follow your progress, and may it continue and build on what you have done so far. In my leg I have been feeling more lately ; alas, when I gain sensation, the first thing I feel is pain. Not the sort of welcome I’d wish for. Pain, and muscle spasticity. And yet my battle is 90% with my proprioception and feelings… only 10% refinement is needed with my mobility… I feel I am so close to walking, yet so far. What I cannot trust is a leg that I can barely feel, and so feintly. If I had more feeling in my hand I could even type with my right (my dominant) hand. At the moment I cannot tell if it has struck the key once, not at all, and for how long… Maybe I should practise typing with my right hand.

I had such a fright today, another locked glute day, & it didn’t help that I was unsettled, sleeping badly all night long. You’re right to accept your situation… maybe I still haven’t come to terms fully with my condition. Certainly I run and jump in my dreams. And about “Getting my life back”… of course I have it back… and I have plenty of reason to rejoice, but I need hope I’ll walk again one day, unaided.

I like your pottery… an excellent hobby to take on. I was a fan of art ; doing watercolours before my stroke. I always thought I would paint during my retirement… well, that’s just as impossible as playing my violin. Though, perhaps it will still happen if more feeling comes back to my right hand. But you’re right ; posting about your pottery has reminded me that I should try and get back to my art, using my affected arm. I had planned drawings for my book of a little creature I invented, called Nono… maybe I should post a few first efforts here?

Anyway, thanks for writing to me Simon. There’s plenty of inspiration, and “joi de vivre” that comes across in your writing. I will resume exercises now.

Ciao, ciao, take care, thx, Roland

[pando]

Thx Janet
yes I keep a diary, which is more of a book that I am writing.
yes, it’s good for me to keep a record for myself

Will hang in, thx, Roland

[pando]

Thanks Mark,
I am overjoyed at progress being reported long after the 6 month period.
I pay no attention to the “official” time frames anymore.
I am glad at your breakthrough experiences… I thought I had one last week…now I have my doubts. No doubt I must plod on, progress or no progress.

Thanks again for writing, take care, Roland

[pando]

Thanks Ann,

Hopefully things will turn out as you say. I’ll re-evaluate and realise I have gone forwards, not backwards. Hopefully I posted impulsively… I’m about to climb back on my horse to do a few more exercises after a post-lunch nap.

Thx again, Roland

[Rups]

Shwmae @pando, sometimes we drown a little, and then come back up for air. This post stroke life is challenging, every hour can be challenging. I had to draw on the strings of self-kindness recently, it’s sometimes useful to pull back, recoup, and have another go.

[EmeraldEyes]

@pando When you are feeling at your lowest it’s always best to voice it, air it, and you know this is the best place to do it. You don’t need to feel foolish and there’s never any need to apologise. We are all here to help and guide each other through these mires and out the other side. We want to lift you up so you can see your life and hope once again.

I’m sorry you’re having such a low time at the moment. I don’t know if this helps but for me I always find myself at my lowest ebb just before a breakthrough in my stroke condition. Maybe it’s just the opposite for you, you finish on a high and then crash. These kind of breakthroughs can be draining on the body and you need time off to recharge.

I’ve learnt, that when I have a breakthrough like that, to take a time out from all things stroke rehab. I take the time to celebrate and just enjoy this new bit of me I’ve been given back. And I reward my body for all the hard work I’ve put it through by not immediately pushing on through for more and more.
Much always wants more, don’t be too greedy. I live with it and play with it and marvel at this new bit of me. And by doing that I’m allowing my body time to adjust and recoup, recharge it’s battery and build up the nutrients its burned out in giving me that breakthrough. I take a week off once a month along with my gym workout. Do you ever take time out from it all? Sometimes that timeout can be just the catalyst your body needs to further improve upon that breakthrough.

[pando]

Thanks, Emerald

Of course I should take time off. I don’t, but I do step down… like a half day.
If I step back and look at the big picture, maybe it’s all regular and to be expected.
This idea of a breakthrough is only a construct we invent to punctuate our progress. Probably the best idea is to plough on with a joyful heart no matter what… that should be what I aim for.

High or low, I should try and see the big picture.
Now the day has played out, it was doable
I’m grateful for all the support here ; it made a difference

Thank you for your thoughts
I know you fought hard with tenacity ; your words carry a lot of weight
Bless you and thx very much, Roland

[pando]

Yes Rupert,

post stroke life is something I knew nothing about
so new respect for such a condition
always did respect … but never realised the difficulties

thx for your encouragement, ciao, Roland