How to say no!

Emotional effects
1

I had a stroke last October. A blood clot in the brain ,paralysed down left side .

Now ,nearly 5 months later, on all the tablets you get, like a goody bag....I am,

on paper,recovering very well."Remarkable", my GP said. However, no one 

takes any notice of the emotional feelings.

I am a very capable ,active  71 yr old woman,living alone. But the pulls on my 

time ,from family ....babysitting , baking , shopping ,homework help. etc. all the 

things I did before stroke, I don't /can't  do anymore. I don't want to be helpful, I 

want to be helped and yes, spoilt ,a bit. Everyone thinks I'm fine,but I am not.

Any suggestions? 

 

o

 

2

Hi June. Welcome to the forum. You are a survivor and now in the early stages of recovery. Before my stroke I led a very active life and did a lot of voluntary work. When I came out of hospital, many ‘friends’ expected me to pick up where I left off and take up the voluntary work I had already told them I could not do. In the end I had to tell them bluntly that I could not do these little jobs and the expectation that I could was stressing me out. They seemed surprised.

What people do not understand is that Stroke is a brain injury and recovery takes a long time. Most of us have to cope with post stroke fatigue as well and simple everyday tasks tend to overwork our damaged brains and so we get tired out easily. This does change and the brain does re-wire itself, but first survivors have to slow down, rest when necessary and do tasks a bit at a time.

I was a keen cook and baker before my stroke and I thought stroke had ended all that. Then one day I decided that if I broke a simple baking task down into stages, I could at least make a cake. I began by greasing the cake tin, lining it and then resting. An hour later I assembled the ingredients then rested. After the rest I measured the ingredients, rested, then mixed them, then rested. Several hours after starting, I baked the cake. It was an important step for me to take and I built on that. I even bought myself a new food processor and can now make bread too. Over three years, my cooking has increased. I have to be very safety conscious, but cuts, breaking crockery and scattering chopped onion around the kitchen is all part of the course.

Please make it clear to friends and family what you can and cannot do. Even then they may only half listen and tell you ‘you look well’. Looking well is not the same as feeling well. Stroke knocks our emotions about as well as our bodies. Good luck on your recovery journey.

3

Good morning June  -  so sorry to hear about your stroke, and the effects it has had on your life.  You won't need to read many posts on this site, to discover that, sadly, your story is not unusual.  Many stroke survivors experience just what you are going through, and I know that you will receive many supportive replies.

In terms of trying to educate your friends and families, I suggest you google "Letter from your Brain", it seems to capture some of the experiences of stroke survivors, and will be useful to show your friends + family as it will give them an insight into what your are going through.  When my husband had his stroke he had an MRI scan, we asked for a copy and that has proved helpful in trying to show people the damage to the brain.  When you can see the damage it is easier to understand why you having all these problems - as my husband says "There's a ****** great big hole in my brain".  It doesn't make it all go away, but at least you have the evidence in front of you as to why you are struggling.  

You will have to learn to say 'NO' when you are expected to do the things you did pre-stroke. Accept any help that is offered, even if you have to make heavy hints initially to get the help. You need to channel all your resources towards your recovery - plenty of rest is essential while your brain re-wires and heals. 

Keep posting and try to find some time to read the stroke survivor stories on this site, they will inspire and encourage you.  Take care, stay strong, xxx

4

Dear June

So sorry to learn of the stroke that bit you. Welcome to the forum. Lots of us are here for you.

John and Nic have already made good points. Some other ideas that might help are:

Recovery is years not days. Recovery will not take you back to prestroke. It cant. A bit of your brain is permanently disabled so you will not be the same person. You will be "new June" and maybe in some respects you will be even better than the old June.

If you had your leg amputated then everyone can see that and act with some compassion. They wont expect you to join in the gkids sports day. Your amputation is inside your head and others can not see it. If needs be, in response to the "you look well" is "can you see inside my head".

I too am 71 so please dont think age has a great deal to do with anything. The mobility side of recovery is easier than the "cognitive". Most of us have SF (stroke fatigue, medically termed post stroke tiredness) we have emotionality, whereby we cry without suitable reason, a few of us laugh which is possibly worse. We get overwhelmed. We get anxious. Our confidence goes walk about. Our memories are impaired and now work differently. In my case I have probably forgotten several basic points for this post.

Going to the local stroke group is very helpful. Only another SS really understands. I found counselling very helpful. Has to be a stroke trained counsellor.

Do come online and ask about anything.

Your final sentence refers, I think, to wanting some help from those that have been helped by you. Do not hold your breath. Those that will truly help are probably already helping. Many of us have families that run for the hills. They might be OK for six weeks, but I think our human nature doesnt cope with anything more than six weeks.

Of course you say no to helping others, as you did pre stroke, I have then worked on finding what I can help with. In context, I am an FCA and used to volunteer to help with peoples tax and pensions. And do the church accounts etc. It took me two years to be able to wait on tables, make tea and coffee and then take up a voluntary admin job of about three hours a month. Not that you will follow my example, but I am trying to explain the depths we have to go to during our recovery.

I quite like making tea and coffee. And doing the odd things that I can cope with..

I also have learnt to rabbit on far too much

Smile a lot.

Be positive. All those things you can do, not the things you can not.

You are not alone

Colin

 

5

Thanks for your reply,Colin. I never said NO to helping pre stroke,even if I was tired out. I was a head teacher,lots of irons in lots of fires. So I thrived on being busy. I smiled when I read your comments about those running for the hills . I think I should lower my expectations of people then I won't feel let down . I've always been independent ....after a stroke , I feel as if I've lost that.  No more moaning.....I will keep in touch with this wonderful site. I spent ages yesterday reading through all the posts ,very enlightening.Thanks again,I no longer feel alone.x

6

Thank you ....exactly how I feel. I will not feel as if I HAVE TO anymore and do things in my own time . x

7

Dear June

Your positive attitude will help your recovery a lot.

As I was told some years ago, the ones who have had some decent recovery are the ones with a positive attitude. You have this in buckets full and you will reap a big reward from that.

Saying no to others is hard. In my case it was essential, because my brain wouldnt work and so I couldnt help. But still I was pestered for two years before I was left in peace.

My independence has grown. So will yours. Driving a car isnt everything, but I drove after one month and that helped a lot. I live in the countyside, in a large village, and short car journeys get me around. I am sure you will get independence. I now do help people. But they are people I have chosen to help and they get my assistance in ways that I can cope with. Not the financial advice I used to give, but simple things like making tea. Others might return to their former skill sets, but I cant and so I do different, much simpler, things. Thus I make new friends and thats a lot better.

best wishes

Colin

8

Hi John, thank you for your words of wisdom. You certainly hit the nail on the head....people telling me I look so well.I have used A Letter from my Brain,and asked my friends and family to read it. One of my daughters said she understood more now. I do what I feel like doing ,what I feel capable of doing before I get tired,therefore making life more pleasant. 

Thanks again, June x