Utter exasperation

I want to vent some steam here because over the past few weeks, as my symptoms improve, I've experienced the opposite from what I would have expected from those close to me. Maybe, they have more expectations of me, perhaps they think I am better, and therefore completely capable now. I don't know. It's a bit boring having to announce one's improvements all the time, it would be nice for others to acknowledge progress instead of mounting further obstacles in the way. I really understand with a frightening earnestness how inward-looking so many people are. Perhaps, I was like this before my stroke, but now it's quite apparent that in the early days I felt like a lame animal cast-off from the rest of the pack and pettigfogged for not keeping up with the rest. It's worse now that I am not completely shuffling around feeling my way through space, because people just can't adjust their behaviour to the new me. If I can't do something, I have a reason for it, I've had a stroke. If I can't do something tomorrow, I have a reason for it, a stroke. I wish I could do what was asked of me at the drop of a hat but I just can't. For some reason, the "I can't" doesn't make any sense to them. If it vexes them, then I say to myself, well, how do you imagine it makes me feel? I am not being indolent or obstinate, I just can't do it. I can't walk from that room to this room right now to do that simple task because I feel as if my body is going to shutdown, and I need to rest urgently. I've had times when people have asked me to do some nugatory task just as I was heading for a rest, and I've graciously pushed myself to do it, and felt the worse for it, but that's all right, they're not the one in bed now feeling like their body and brain are about to cave in. I understand, it is good to challenge yourself and to push yourself but it has to be done shrewdly, and within reason. But more importantly for the other person to appreciate the effort involved, sometimes a gentle slap on the shoulder, or a positive affirmation can make the next hour of recharging the battery worth it. 

If I am sitting outside, seemingly doing nothing, chances are I am planning the next few hours of my day. It's only been very recently I have been able to do this before noon. If I haven't done something in an allocated time, that's because there's lots of my own things I can't achieve in an allocated time. It just baffles me. I don't get, "It's great to see you up and about sitting outside." Instead, I get, "Oh, I see you're still here sitting doing nothing?" Not everyone has been like this all the time, and not everybody is like this, but the further I try and push my recovery for the better, the easier it seems I'm shot down, almost as if people would prefer I remained in the more chronic physical and mental state that I was because that easily spells out the bleedingly apparent symbol of an unwell person. This kind of banter in the past would have drizzled off my back like a duck, but when you're trying to sort out a multitude of mental processes in alignment with dysfunctional physical processes, it is scathing rather than replenishing. It comes across as priggish instead of playful. 

I haven't become more sensitive, but the part of my brain that processes basic emotions (the cerebellum) has been damaged, and as a result, I am also susceptible to whatever is being fed to it, emotionally. To be honest, it wasn't always like this. Early on, people kept out of my way because I was barely functional, but now it seems they can't seperate the subtleties of recovery and impairment. For example, I may look fine doing the washing-up but my legs are actually sore and a bit shaky, the water in the tub is making me nauseous, there are things going on in my head that I am keeping at bay, and in about half-an-hour I'll start huffing and puffing, and need to rest. The response might be, "Can you also dry them?" This is an illustration in point, no one has said that to me, but it is the kind of the thing I am getting from a lot of people these days. It's indicative of the attitude that "No you can do this, you can do other things, surely." The disappointment when it is not the case is palpable. An alternative would be, "Great job with the washing-up, could you manage drying or is that too much for now?" 

Anyway, I've contacted the Stroke Association services team because I feel at this juncture I need some emotional support. Sometimes, I wish I could gather friends and families for a chat with a stroke expert to give them all a good lecture on what it is like, but unfortunately, it seems that unless you've actually had one, empathy and pathos are just not high on anyone's lists unless they can see the damage and feel it vicariously. This I feel is, sadly, lacking in most things in this world. It was Aldous Huxley who wrote, "You can't get anyone to see through your own eyes. The very best you can do is to encourage them to use their own."

Sorry about a long vent but I feel like I've hit an unexpected hurdle in recovery ... other people. 

1 Like

I really enjoyed your post on utter exasperation. Really liked what you wrote.

I reckon most people can only manage six weeks of being understanding. Regret that many of us SS need six years rather than six weeks.

best part for me was when a stray cat adopted me and is still my best friend. I never had pets, but then I never had a stroke before !
 

after five years most acquatents at last accept I no longer do their tax returns nor tell them how to manage their finances. Now, I need to reestablish what I can do.

no finances. But maybe I can make the tea or coffee.

yes Rups, you have hit a huge hurdle.

now what are you going to do when you get to the other side of that hurdle?

best wishes

colin

 

 

Rups, I can empathise with you entirely. In the early days after my stroke, I was surprised by the number of friends who avoided me. After that, there were many who never even raised the topic in conversations. Then there were ''the helpers' who wanted to put my coat on or take me across the road (when I wasn't going to cross it). Then came lots of 'you're looking well', when I certainly didn't feel it. There were even those who expected me to carry on quite demanding voluntary work that I knew I wasn't up to. The most important person supporting me was my partner who encouraged me to exercise walk and do what domestic jobs I could.

Five years on, I still get angry at the people around me who ignore both the stroke and it's after effects. It's just assumed I am okay. I still have to plan my days carefully. I still have post stroke fatigue and have an hour in bed at noon. Too much activity in a day and I feel knackered. In between activities I have to rest before the next task or I am good for nothing.

The sad truth is that, for many, stroke is something they don't like to think about and about which they know very little. As a survivor, you just have to carry on doing your best and hope that other see that. However, I refuse to let the indifference or ignorance of others drag me down.

Yes Rups, this is all such a pain. Why, why, why can't people understand. We don't want to be like this, it is not our choice, we have no choice, so why does no one understand? Can't offer you any help with this, just wanted to let you know, there are many of us in the "same boat" take care and I am thinking of you. Jane.

Very very good posting. I bet everyone reading can put themselves in a similar position. 

Im not sitting down doing nothing out of choice. 

I like the Aldous Huxley quote. It seems he was a true visionary and we are at the begining of his Brave New World. 

Had to google 'pettifogged', but Ive learnt a new word today.....thanks. 

Excellent reading, showed my partner this morning as she alwasys questions why I can’t ot don’t want to do anything. Hopefully she understands it’s not just me being lazy now. Hope all is ok 

Well said rups told exactly like it is and what happens to us,I had a brief encounter quite similar at work the other day bearing in mind I'm graduated back to work only doing a shift of 4 hours ,I stepped onto the ward with the deputy calling my name saying can you do this then go there ,I stopped her and said no I can't do this or go there ,I'd like to but I can't yet ,she looked at me with a wicked witch look as if I was joking ,but I said not I'm not doing it and carried on what I could do ,and I will keep saying no until I'm ready ,so totally get what your saying rups ?..pippy 

Hi Rups, a very thought-provoking post, I recognise much of what you say because I had so much to learn after my husband suffered a stroke.  I really tried as hard as I could to get to grips with the changes that had happened, but you could be sure that from time to time I'd manage to put my size 5 right in it!! We had some terrible times, we've never experienced before so had no strategies to deal with them. It was a very steep learning curve for me/us. However, trying to get others on board was just impossible - family, friends, colleagues they just don't get it.  I feel as though I spend a lot of time acting as a protective 'fence' to make sure that hubby doesn't get too much grief from others' expectations ?.  

Finding this site was literally a life-saver - I don't want to sound like a drama queen, but I think we'd have ended up in very serious straits if it hadn't been for all the support and advice offered here.  

I try to keep in mind that although my husband is able to do many things nowadays, he's still struggling to stand upright, to put one foot in front of the other, to cope when several poeple are speaking at once, etc.... I would urge your family/friends/colleagues to come onto this site and to try to learn as much as possible about living with stroke.  Non-stroke people can never really know what stroke survivors go through, we can only educate ourselves as much as possible and be grateful to be a supportive part of your recovery.

 

Thanks Colin, I try and do the small things, that certainly helps keep the sharks at bay. The other side of the hurdle remains for me to best help those around me who have yet to have any illnesses. I am fortunate that through empathy, I feel I can't but not look at the bigger picture now. It's not the way I wanted to learn or experience this kind of empathy but it is what it is, and now I am what I am. And, yes, what glorious companions cats make. 

I agree, I was recently dragged down, and on coming up for air, I thought that trying to help people help me with my recovery may actually have the reverse effect. So, one must be astute with who the earnest allies are, as the others will no doubt just carry on with blinkers. I am also having a chuckle at the thought of you being helped across the road without needing to cross, albeit, a frustrating situation. 

Thanks Jane, it's been a terribly miserable week on that front. Thank goodness for other stroke survivors. I agree so much with your statement that this is not our choice, it's not like having a hangover and then whinging about why we feel awful. A stroke is brain injury.

Thanks, yes, brave new world indeed. A new word a day keeps the dictionary away. I've always been someone who busies myself with a kind of nervous energy, always doing something, this year I have spent more time thinking about moving than actually doing it.

Thanks, well, I hope it has some benefit. I've had a huge amount of issues with external family members who come and stay, see me not running around like I used to, and then assume I'm dodging responsibilities or not pulling my weight or worse, letting everyone else do the work! Only a very few handful of close friends have actually sat down to discuss cerebellar stroke syndrome and the effects of the condition. I don't mind what people think, as long as it remains thoughts, and doesn't come out as remarks in a backhanded or snide way. Because the fallout is that on top of the stroke, we are dealing with depression and anxiety, a whole other level of thinking about ourselves, and the people around us.

Thanks Pippy, and so you should. We should avoid going backwards or making ourselves unwell in the name of someone else's priority, or else it will take us longer to be able to handle that situation in the future. 

Well, you are truly doing the right thing by being part of the conversation. I've offered various sources to friends and family, and haven't had much interest. I think what they fear is their own opinions and mindsets being challenged by real people who can respond and react, rather than a Google search or a leaflet that can't talk back to refute or dispute. Stroke doesn't just end with the symptoms, on top of that can arise depression and anxiety, fear and self-esteem issues. You've done well to soldier on, strokes can break relationships, divide friends, and rub families up the wrong way. It's a tough old slog sperating the wheat from the chaff when you don't want to. 

Morning rups yes definitely well I'm back to work this morning ,and will be doing things in my own pace ..pippy 

Hi Rups - I'd never thought about the passive leaflet thing, but yes it's so true, you can skim through a leaflet or website and think you've got the inside knowledge, but the day to day reality is unrecognisable at times. Maybe someone should write a more realistic leaflet, "in your face", "what to expect" type of leaflet!

It's so sad to hear of relationships and friendships breaking down.  What would we have done if this had happened to a friend rather than to us?  It takes time and commitment to do research, to read forums etc would we have bothered?  We're definitely struggling with some of our friends, and I'm not sure where we'll be by this time next year?  Some people are just kinder by nature, and even if they don't understand, their innate kindness keeps them standing by your side.  We're very grateful to those friends, but honestly, I'm beginning to feel life is too short to be constantly uncomfortable around certain groups of people, and to just let these relationships go, I can't be the buffer zone for the rest of my life!!  

However, this doesn't help your situation, where it seems as though you're really experiencing some complex challenges.  From your profile pic it looks as though you have young children - I really hope that they are supporting you, children see things differently and are still at the stage where they can be flexible in their thinking ?

I wish you a good day, and hope that some of the clouds will pass by, leaving you in a better place.  Take good care  ? 

Thanks Rups for this post! It's good to know we are not alone! I remeber one particular friend asking me if I had already been to the book shop to see if I could find any books about getting over post stroke complaints. This was about 2 weeks after coming out of hospital! :-) Also having just started back to work last week I'm struggling with managing the expectations others have on me. I understand that it is me who has changed and that, as a result, the relationships I have with others must change but it is by far the most exhausting part of my return! 

Find it so difficult to cope with the unkind comments, and the lack of understanding of stroke legacy ?.  

When we saw the consultant following the stroke diagnosis, he showed us the MRI which so clearly illustrated the extent of the damage inside the brain.  We asked for a print-out of the image, and have used it to show people the "hole" where brain tissue formerly resided!!  It was a very powerful image, and quite shocking because you just can't imagine losing a chunk of brain, but it's there for all to see (literally) in black and whilte.  

Maybe if non-stroke folks could see this it might help to start the process of being more understanding and supportive - how would they react if they lost a part of their brain? 

Four years on, my husband still has difficult days - he gets up at about 5.30am to walk his dog (his choice), but often then spends time gardening, or managing jobs around the house.  I keep trying to drag him off on holiday!!  But currently, having been awake and active since silly o'clock, he's crashed out on the sofa having at least 40 winks.  I know that if he has this restorative sleep when he needs it, he'll feel so much better for the rest of the day - to me that's a small price to pay!

Sorry for rambling on!  All the best, Nic    

Rups, I have just seen your post and I am sitting here in tears! You have expressed exactly how I feel. Even a couple of weeks after having a stroke one family member said ‚Äúbut I thought you were getting better, you seem ok‚ÄĚ. No-one who hasn‚Äôt had a stroke can understand how we feel inside (indeed I didn‚Äôt until I had one). The challenges we have to face daily despite looking relatively normal. All I want is a bit of TLC and I don‚Äôt get it. It‚Äôs just like you are expected to carry on life as you did before the stroke and we all know that is impossible. Thank you for posting this Rups. Love and best wishes to you in your recovery x

1 Like