just wondered if anyone else suffered from being strong willed to the point of it being a problem. I feel isolated since the stroke, which is almost two years ago. Even though I have gone back to work full time. It’s not easy but I manage, I feel hopeless because I am unable to drive myself and am reliant on others. That in itself feels restrictive because I am unable to get up and go when I like. I have to wait for someone to be free and I hate it. I feel nervous about going out on my own and although I’m working on it I haven’t managed it yet . I’m okay at work but I think that’s because it’s safe and familiar and there’s always people about. I work in a secondary school.I don’t feel able to ‘burden’ other people with the trivial things I feel.l hate asking for help.i even hate admitting I might need some help. I don’t want to receive help and would just rather people suggested doing something than me asking. It makes me feel pathetic and needy. I can do things myself or at least find a way but it’s a terribly sad place. On one hand I don’t need help and on the other hand it feels like no one cares. I was always fiercely independent and life has taught me not to expect too much from people . Sad but true. I was always the giver, putting myself out for others so I guess it has been a mindset of mine but now it feels isolating and lonely. I just want understanding without the stigma that now goes with it. Sometimes the days seem like a real struggle doing things as simple as talking or walking that it just leaves me exhausted.
sorry for the rant.
Hi, i can fully understand exactly what you are saying, i really do. I had my stroke in January 2018. My employer has left my job open for a whole year, i too work in a secondary school. I was hoping to return in January 2019 but i feel too overwhelmed with so many things. I have cognitive problems, along with Asphasia plus Balance issues and right side weakness. I cant go an hour without feeling the dredded fatigue . In my job you need to be able to type efficiently (i used to be fast and accurate speed typist ) and now so clumsy and slow. My confidence has gone. Like you everything exhausts me, talking , walking and thinking.i was going to take the leap back to work but have decided to resign from my post and when ready perhaps do some voluntary work as i dont know what skills i could offer now. I do admire you for working and trying to cope. I wish more people were educated about what we are going through. I always have people come up to me saying "are you better now?, you do look well...." and i look at them and just smile....they havent got a clue and it angers me inside. Im probably ranting now lol. I think my SS truly understand . I hope in time things do improve for you . Take care
Stubborn pride (which is not a criticism) is hard to overcome. The general lack of self-confidence I experienced, the unwillingness to acknowledge that I was not my old self and determination that I would 'fix' everything myself was a hurdle I had to overcome.
It took my quite a while, though. Accepting I needed some help was the first step. After thst, I decided just to be honest with everyone. It turned out really well. Most of the people around me (family, friends and work colleagues) felt a sense of relief. They were dancing on eggshells around me, worried that they would upset or offend me. Opening the door and letting them into my 'world' was one of the best things I did. Most folk walked through that door - very few didn't.
I started writing a blog where I share my story and thoughts. This has proved a good way to tell people about me in a calm and safe way. I don't need to worry about getting words confused (as I do sometimes when speaking in a busy environment) as I can re-read and correct anything before I publish it. I've found getting my thoughts 'out' has helped terrifically. If you're not up to doing a blog, maybe keep a diary - not just about the day's events, but your thoughts and emotions.
A final tip. Don't refuse any offers of help, no matter how insignificant you may think they are. Remember the Tesco strap line.
Happy New Year.
hi I could have written that post I know exactly how you feeling I had my stroke 2 years ago tomorrow always a strong self-willed independent woman now as you say feeling pathetic and needy because I have to ask. luckily I am back to driving but still choose to spend time at home as it's easier and I still nervous but have been told by doctors I shall not be working in the near future. That was hard to hear.
I still find it very difficult to Believe I Can Feel This tired just from standing up and feeling a few potatoes?
Dear Sharry (and Karen and Adrian and Sunshine)
I read your posts and became quite emotional. I guess its because you guys are all saying what I know to be true but have a struggle to admit.
You guys mention loss of confidence and nervousness. That is affecting me big time right now, I cant really fathom why.
No way could I go to work. Luckily I dont need to work. I have taken on a tiny voluntary job and that crushes me when I need to take action. I also take on mundane jobs of making tea and clearing tables. I cope with that and get much more satisfaction from doing something simple.
I am impressed with the way you get on with other people. I cant get on with anyone. Old friends and family ran for the hills long ago. I just do not have the spare energy to get along with others. I think the crux of the matter is that we are new people in old shells. We learnt how to cope when we were teenagers and now we need to unlearn and start afresh. Alomost impossible. I know I joke about it, but all us SS moving to the Isle of Wight so we can have lots of people who understand, is in fact what we need.
I am now three years. The "tiredness" which I call SF (Stroke fatigue) and the doctors call post stroke tiredness is overwheming. I get about three hours a day when I function. Usually four spells of 45 minutes. And I have to work to get that. Proper sleep is essential. The rest of my world sees me as reasonably capable during my good minutes and can not adjust when I turn off. There seems no help nor guidance at all. And then there are all the other issues, usually involving visits to the GP or hospital, that need to be dealt with. These issues are reducing quite a lot so I offer that crumb of comfort to you guys in the earlier stages.
Just reading that you guys have similar issues is very comforting. There must be thousands of us. So how do we get in to society ?
best wishes to you all
Dear Sharry and others. Please take comfort from your strong wills, which an asset to both survival and recovery. I am now, like Colin, almost three years post stroke. Were I Of working age, I would be very low indeed but, fortunately, am retired. Unlike Colin, I do little in the way of volunteering, but I do remind myself that I have ‘done my whack’.
Like Colin, my main bugbear is post stroke fatigue. It is now noon and I have only been up four hours, but I will soon have to have my midday rest. After that I will be okay until 11.30pm. On New Year’s Eve I stayed up till 1 am, but that required a big effort,
Fortunately, I am good humoured and can still enjoy life and laugh a lot. Yes, some old friends couldn’t cope when stroke hit me, but there were others who did more than make up for their inability to cope with the new me.
Every day is a challenge, but I try to rise to meet it. The way is always forwards and never back.
Thank you all for your reply’s . I guess I was feeling fed up and cross with my lot so it helps hugely to know I’m not the only one feeling this way. It is real contradiction in terms that one minute I feel ok and the next I can feel incredibly low. Especially as it is not-in my nature to feel so helpless. I’ve been through a lot in my life but even on the darkest days there has been something that made me pick myself up and carry on. I suppose time has given me space to think and I realise that everything I did, two demanding jobs in special needs , studying for a masters in autism, running a house single handed plus A meaningless relationship probably contributed to the situation I’m in and that while leaves me mourning the loss also makes me angry that I couldn’t or wouldn’t see what damage i was doing to myself; never asking for help, saying yes when I should’ve probably said no and striving to be something instead of realising I already was something. I’m trying to take stock but it’s hard to find things to positively fill the huge gap as well as to deal with the extra things that we have to now deal /cope with. It’s so exhausting because all I want to do is go for a long walk in the fresh air and clear my head something which is for the time being too difficult. Still on a more positive note I see this phase as a hiccup,it might be difficult and soul destroying but time will make sure this experience is not what defines me and the stubbornness actually will help in a positive way. I hope so anyway. After all I wouldn’t be in the job I’m in being a positive role model if I let this get the better of me x
The after math of stroke is often variable from day to day. Another reason why only another SS can grasp what you are going through.
Maybe your life style was too stressful but I doubt that you have caused the stroke. A stroke will come out the blue for apparently no reason.
What will make a difference is if you can be positive. Which I sense is definitely something you can do. Be positive. Look at what you can do and not what you can not.
I have been looking for a way of describing my longing to have the fog lifted from my head. Your long walk words have described it perfectly. Thank you. On two occasions I did have that wonderful feeling when the SF lifted. Once for two whole days and once for a few hours. It was fabulous.
I am an FCA (retired) so I would help people with their taxes and pensions. Thats gone. I now make tea and coffee, clear tables and then have a tiny voluntary job, for about three hours a month. I really do have to change my life pretty much 100%.
I have been unsure how much to tell others that i have had a stroke. On balance I think you are right to ensure that stroke does not define me.
Im sorry to hear that you're feeling that way ,, im a very independent woman and always have been I think I put too much value on my friends around me and my family always doing things for those always put myself out for those but when I had my stroke in 2017 not many people bothered with me not my friends and they family I have live too fare away ,, my son can't be bothered to help me,my friends started not bothering to come and see me or calling me ,,, they all drifted away ,, as I changed after the stroke I was finding it difficult to get out they all want to socialise at the pub I couldn't do that they gave me an operation for my heart in 25th of February 2017 because of the stroke on the 3rd as I was diagnosed with complex tachycardia arrhythmia and my femoral artery and nerves were damaged in the operation it damaged my leg through keyhole surgery so now I'm disabled as well ,, I found it very hard to do anything for myself but I still persist exhausting myself ,, so I can understand what you are feeling,, people around you that you had value for drop you like a hot rock and it makes you feel so deflated and unvalued they can't even drop your call or see how you doing if you need anything nothing nothing happened like that for me ,,