Jow do I keep going?

Hello I am new here and I had my stroke on 31st of May. A haemorrhagic stroke I believe caused by high blood pressure. Everyone tells me that my recovery has been fantastic I am able to walk from room to room using FES. I don't have any voluntary movement in my arm and luckily, my speech, reasoning and memory seem to be unaffected. I know it is crucial to stay positive and determined to keep going but I am starting to feel as though my strength is ebbing away. A couple of days ago I reflected that if I did have another stroke I wouldn't want to survive it as I feel this life is difficult to live. I know people work through and achieve amazing things so I'm looking for some tips on how to keep going. I have very supportive family friends and colleagues so I can't ask for any more in that direction. I only want to be able to do simple things independently such as go to my allotment, cook a meal or walk to the pub surely that isn't too much to ask.

33 Replies

  • Hi.

    A very "Big Welcome" to our site !!!!

    I had my Stroke "Bleed" in 1998 at the age off 32 in Spain on the 1st day off a family holiday.

    Yes I stayed very "Positive" & I proved all off the medics wrong big time.

    Things have been like a "roller coaster" since though.

    "Still Positive"

    I'm glad you have got a fes.

    No I don't worry about another "Stoke"

    I now what too look out for this time as never knew them in 1998 the 1st Stroke.

    Yes ironically this happened too me in 2005 when I did have the signs off another Stroke & I got hospital treatment instantly everthing another one in the end.

    I have become an "Expert Patient" in Strokes now !!!

    Please please don't let things ebb away as you have done fantastic already.

    Yes yes you will be able to do as much as you can !!!

    It just takes "TIME"

    Remember Rome wasn't "Built in One Day"

    Please let me know if can help you further ???


  • Hi Steve I would be interested to hear how you proved the medics wrong

  • !!!!! No problem !!!!

    Let's just say that I was

    "Written Off"

    !!!!!! Big Time !!!!!!

    Well I was like a

    Red Rag to a Bull"

    "Bring it On"


  • That's good to hear, I have a reputation as being a strong, determined even bloody-minded person but this strength feels like it's ebbing away just when I need it!

  • Hi. That's the right attitude being "strong & determined & bloody minded"

    No we need to keep this going as we will move forward & you will reap the benefits.

    We need to stay Positive all the time.



  • Thanks Steve I appreciate your words of encouragement.

  • No problem anytime.

    We all need to stay "Strong & Support" each other on this site !!!!!

    Please let me know if I can help !!!!!!


  • I can sympathise with you. I am told I am strong and determined. But I seem to be using it all up.

  • Luckilybtime is whatvwe have now. I didbnt have any signs beforevmy stroke and still dont know what to look out for aybe headaches. Younare right staynpositive. All the best for the future.

  • Hi Franny

    So sorry to read you are having such negative thoughts. It happens to us all at times I am sure. But look at what you can do and try to be content with that for now. Improvement can be slow and frustrating for us stroke sufferers. Have you looked for help re your mood? Have you considered mindfulness? Do you have a lot of people you can call on for support?

    You are human so will have low times but they should be less frequent as time goes by.

    I have suffered the negative feelings too but I try to keep my brain active and find someone to correspond with either on computer or suggest a meet for a coffee. Dont know if this helps ?


  • So happy for younthatb craft has helped. My hobbies were knitting and beading but with no strength and little movement in my left arm and hand both the occupations are proving newly impossible. I am getting bored with reading and watching tv. Can't do the garden anymore in case I fall over. I also fimnd talking to friends tiring. Thank goodness for the computer. All the best.

  • I understand how you feel, i had my stroke 2014 fell and had to have my hip pinned so like you i feel like you having to ask for help. Being able to go anywhere when you want without having to ask is one of the worst things but going back to some of the activites i used to do like my knitting club, craft club has helped me to get over it a little. I get taken there and my friends treat me as they used to do offering me help when i ask has made me feel a little better. Hope this helps a little, but keep going.

  • I know like some of the others what it feels like. I had my stroke in 2014 and it effected my left side. Have some use in my leg and arm. Now wear a splint on my left leg to stop it dragging on the floor and it helps a little. I also have good days and bad ones and have a supportive husband children and friends. If you had a hobby before the stroke is it possible to try and do it again, mine was knitting and have found a way to continue with the help of our knitting club. I also have joined a craft club find that a little more difficult cutting out and sewing but they help me and it makes my hand work. I joined our local adult colouring club to help ease the stress. We meet at our local library, sit and colour pictures in and it has a calming affect. Hope this helps a little and know there are lots of us out here in the same position.

  • Hi Brenda, unfortunately my main hobby before the stroke was gardening. My husband has been doing a great job of looking after my allotment and we have been enjoying plenty of home-grown organic vegetables. I have feeling he is starting to get the same thrill from this that I used to get. I am very much ashamed to say that I feel intensely jealous on a sunny morning when he informs me he is going to do some picking. I bought a crochet hook to see if I could manage to start that, I haven't made anything for years. It feels like I should be doing something like that as my first grandchild is due to arrive in January 2017. Unless my left arm starts to get a grip I won't even be able to hold that baby. I feel a little brighter since my first posting and of course I have no alternative but to keep on keeping on. Thanks for your message.

  • Thanks for the reply. I have tried backwards stairs but my husband bought a stair lift imwalk up and ride down.

  • I quite understand your frustration. I also can walk , talk , see and hear but can't put my earring in or do the garden and am not stable enough to walk the dog. But keep plodding onwards now has got to be better than the alternative I also have good support from friends and a fantastic husband. I also would like to do the simple things I did before, but as very one says it is great that I can do some things. Keep on trying. Things could be worse. I know this does not help but it bus true. Keep telling yourself that one day you will wake up and feel better. Keep,positive. Had but worth it. Good luck I am going to try riding for the disabled to try to build my strength and energy up. Onwards and upwards. Thank you for the reply.

  • Hello thought you might like to know that my physio has just cheered me up immensely by coaching me to walk backwards down the treacherous steep concrete steps at the front of our house. One more step towards freedom. Keep working on those earrings. Good luck

  • I'd never have thought of myself as the kind of person who has the strength of will to fight back but to my astonishment here I am still with people telling me how well I'm doing and how "brave" I am. You gotta just keep on chugging away at it and there WILL be days when you thank the heavens that you kept at it. In my case, time with my granddaughters, and sitting in the park near my home watching the radio controlled model yachts whizzing up and down the's always encouraging to get messages through the Facebook "I've had a Stroke. What's your excuse?" group, who will welcome you with open hearts My wife died the year before the stroke and the last thing she said to me was to me was that I was to carry on and enjoy life on her behalf as she no longer had the choice,so I don't really have any choice in the matter. Just gotta keep battlin' on for my Nicky;-(

  • Thanks for your message Gregor. I am feeling a bit stronger since my fantastic physio returned from holidays and encouraged me to have a go at walking down the steep concrete steps at the front of our house backwards. This opens the possibility of release from my house arrest eventually. Sorry to hear about your wife, it's amazing that the impact of her words can carry you forwards into the future. All the best.

  • Keep on trying. I managed to ditch the wheelchair and walk round the shop today. All of five minutes but I feel as though I have spent the day in a gym. So tired and weary. It is so frustrating . My sim is to cook Christmas dinner for my husband and son.keep your fingers crossed for me please. Thanks.

  • Hi although it's quite a number of weeks away I have been thinking about Christmas and the challenges it will present. I think most families have their rituals Christmas around food and other activities and this is bound to highlight the changes since the previous year. Like you it will be important for me to be able to do as much as I can for the traditional Christmas dinner. I guess there will need to be a risk assessment over the basting of roast potatoes! The best of luck to you to reach this goal.

  • I know exactly how you feel. Although I am on the other side. My husband had the stroke and I am his carer. But we have said its like we have been imprisoned by it. I watch people walk together down the road with longing now. Something so simple that we all take for granted seems so far away. But.... I have met several people who have been through this and come out the other side leading a fairly normal life. It all depends how hard you work at it. And I am hoping you are having some counselling. If not contact the stroke association and they will arrange it for you x

  • Thanks for this it is encouraging to know that you have met others who have been through this stage successfully.

    I have had some psychotherapy help from the community/team but this is now finished and I need to put into practice the strategies they have tried to teach me to manage the negative thoughts when they arise.

    Thanks for your encouragement I hope you will get there to. I have developed quite good competence with the stairs and am hopeful that I will be able to sleep in my own bed again from this weekend. That will be a big deal for me.

  • Getting back to my own bed was fantastic. It felt like the height of luxury! Enjoy.....

  • I had my stroke nearly a year ago - I was very lucky and only long term effect is that i can't type as well as I used to. It has taken me a year to really get back on track - you'll find it comes in tiny steps. At first I had no appetite and was exhausted and depressed - gladly my taste came back and now I'm less tired. Do a little bit a day and let your body tell you if you need to sleep - I am very gentle on myself now. I'm worth it and so are you. Start with smaller simple things - walking, talking, making a cup of tea is a step to making a meal so you're probably closer than you think. The depression is hard - I used to cry a lot - I don't now....

    It will all happen - just take your time.

  • Dear Kate

    thanks for your words of encouragement. I assumed fairly early on that I would never get back to proper typing and I am having a fair bit of success using Dragon professional dictation software. It's fairly easy to use and has greatly improved from the earlier versions which I understand took ages to get used to a new voice.

    I am glad to hear that the weeping doesn't last for ever. I suppose it is taboo to feel sorry for yourself. I think it is inevitable from time to time. Looking back carefully I can see that I am making progress just hard to notice the tiny things at the time. Thanks once again take care. Frances

  • Thanks I used Dragon too but am keen to key those fingers going. What I did learn is not to make any big decisions - I've booked the wrong flights and holidays all through mush brain...lost ££££!.

    I now get someone to sit with me if I'm doing money type activities so that i know I've done it correctly and also to celebrate I've done it.

    Stay strong.


  • i was like u how do i move on as i was allways bizy and took things for granted i am now one year to the day down the line some things are still hard, i am juas back from holiday in benadorm diffrent kind of holiday as i dont have the same energy but at least i am here things are diffrent but i can still do most things like watch my 2 gran daughters grow ,tryed to go back to work but made a mess of that as they say i am a health and safty issue as my memory isnt good i work in home care and now no how it feels to be on the receiving end.but i have came far in the year i can walk talk make tea have fun with my gran kids ,life is a bit diffrent just need to take things slower now and leave it another while and try work again if they will let me at least i give every thing a try if a fail at least i did try cant beleive i am saying that now as at one point i was so flustrated a just gave up now i try to think diffrent and keep saying to my self no what i did my best that all i can do it better than letting the stupid stroke win

  • I knw how you feel i had my stroke six months ago. I can getbwtround the house but want to be able to walk my dog and do the garden when it stops raining. My bggest ptobleem ids that imhave no strength or stamina. I too have a helpful family and in the horriblre event that imhad another stroke inwould want tomrecover for my family. If they can survive it so can i .good luck fotr thr future and staynpositive. The alternateive eould be worse. The troublevis we want to domwhatvwe did before and it is frustrating not living the life we had before. Lifre goes on theybstay. Keep smiling. And good luck.

  • Life goes on but not as we know or want it. Just hsve to reinvent ourselves

  • That describes my stroke but i have lost the use of my left side to a certain extent. That was 2 yrs ago 2014 but was determined to try and get my hand and arm back to some sort of use but while trying that i fell and broke my hip on left side and whilst trying to get back found i had dislocated my shoulder and still have problems with my shoulder but have managed to get back to knitting which i love making use of my left hand and taken up crafts. Still dont have the use i had before but it helps and the people at the groups i attend help me if i get stuck. I know is very frustraighting and you feel its a loosing battle but dont give up we are all behind each other supporting you in our thoughts and messages we send to each other to show you are not alone

  • Welcome. As stroke survivors we all have down days. I keep going by thinking of a younger former work colleague who has terminal cancer, the inspirational Paralympians and those in the Services who have overcome great disability and, when I've been told that I had been close to death before the stroke but my body and mind was hell bent on being alive. I now volunteer to clear scrub in a nature reserve, I'm a mystery patient for medical students and, I was featured in a video shown to clinicians in the UK and USA about the consequences of having atrial fibrillation and not taking an anticoagulant (a stroke), but if you have a stroke and belatedly take an anticoagulant that you can still be active. Come and chat as often as you like.


  • My stroke i have been told was due to high blood pressure. It has left me with not being able to use my left side very well. There are lots of things i cannot do but with the help of some aids i find i can peel potatoes and make a Sunday lunch for my husband, make myself a cup of tea and a sandwich. It all takes time and learning to do things a different way. I have taught myself to knit again and with help i can embrioder and sew buttons on. So dont give up it might take time but you will get there in the end. Sometimes i feel like throwing in the towel

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