Hi I’m sharon I had multiple tia last September followed by partial seizures then 19 March this year woke up early hours because I need to go to the toilet only I couldn’t move my left side so I shouted my daughter for help I was scared dragged myself to the bathroom and fell back onto my left shoulder how I didn’t break it was beyond me I was so scared that I called my sister prolonging calling an ambulance although I knew I’d had a stroke I was in denial and eventually when the ambulance came ended up being moved from one ambulance to another 3 in total before there was room in a and e for me in total I was in hospital 13 weeks and pushed myself with the physio so I could come home I have been on a emotional roller coaster with my emotions couldn’t wait to come home to my dogs and 19 year old daughter what a huge shock for me I was so used to being so independent to having to rely on help washing getting dressed sleeping downstairs and washing in the kitchen since may it’s now end of July and still no further forward in getting upstairs sleeping and in my shower which is in the bath I managed it when I was having my 6 weeks physio and was always crying and putting myself down never praise myself for what I had achieved my home physio finished 5 weeks ago and now waiting for further physio upto 6 months waiting my moral is so low I’ve come to a standstill with my exercise as my back decided to give way on me as I’ve got spondylitis and just trying to walk with my walker is so painful I’m sometimes not making it to the downstairs toilet in time because my bad back has slowed me down immensely I’m finally under the crisis team because I’ve hit rock bottom I’m 55 and I’m grieving for myself I hate myself and I’m not normally a giver upper but a fighter my relationship with my daughter has gone from very close to constant arguing every day I feel such a burden I also have a 20 year old son in the army a divorcee and have to rely on one cater a day and my friends the odd days to help me I try to do as much as I can but then I’m in pain and totally exhausted all the time please someone tell me there’s light at the end of the tunnel please
Hi @sharlouwil52 welcome to the forum though I’m sorry to hear you’ve had a stroke.
It’s a shock for both yourself and your loved ones, you need to be kind to yourself, feeling low following a stroke is something many of us feel. Hopefully being under the crisis team will be beneficial for you.
I hope you have some pain meds for the spondylitis .
We’re here to offer support, there are many articles and information here that hopefully will assist.
Ask your GP to be referred for counselling as this may help with your low mood.
Wishing you all the very best, take care
@sharlouwil52 welcome to the forum. Boy, you’ve been through a lot. I’m not surprised you’re finding things difficult. It is a bit like grieving. You’ve list the old you right now & you’ve got to get used to the new you. This is a life changing event for you & your daughter. In effect the relationship has turned upside down I guess.
Stroke has many effects and dealing with all of them is exhausting but there is definitely light at the end of the tunnel. It takes hard work and determination but you will improve.
The gap between your home physio ending and waiting for further physio is a difficult time. So you don’t lose the gains you’ve made have a look online to see what exercises you can work on whilst you’re waiting. There are some Stroke Association exercise videos on YouTube too.
The Stroke Association also have loads of publications that you and your daughter could look through which may help you both understand more of what you’re experiencing.
Above all be kind to yourself, rest when you need to. This forum is great if you have any questions or just want to vent.
@sharlouwil52 welcome to our forum but sorry you have had more than one stroke. Life feels unfair when it happens, it is a big shock. Time is a great healer.
I feel for you grieving your old self as we totally understand this. I suggest some CBT counselling, they help give you strategies and how to look at things a bit differently. You can ask your Gp or stroke team if your interested. I’ve had this counselling and I’ve requested more, I’m 16 months post stroke, with knock on effects. Do you ever try meditation or deep breathing exercises I find these can distract me if something triggers my feelings off or if I’m in pain. I hope your pain will ease soon. I also hope your recovery speeds up soon.
I don’t know how else to try and help you but I hear you calling out. I hope you can find a lot of support from us and I wish you well. Best regards big hug Loraine
Hi Sharon welcome to the forum sorry you have been through so much no wonder you are finding it tough, hopefully you can start to get the help you need and begin to see improvements again, take time to rest though your body needs it. Could occupational therapy help with adaptations at home? There’s a lot of good advice on this forum hope some of it helps you,
Thank you for your kind words and understanding I’ve never felt so alone even though I have amazing friends and neighbors I just wish I had a closer family and I know my 19 and 20 year old kids are finding it extremely hard to come to terms with what has happened to me physio have sorted some adaptations but limited because I’m in a private rental house and can’t do much more for me than allowed to do I’m currently under the neurophysiology crisis team because I’m so suicidal I hate where all these dark thoughts are coming from it’s not me I’m normally a very bubbly person xxx
@sharlouwil52 i hope they are giving you the treatment you need. I’m just saying goodnight hope you sleep well. Loraine x
Welcome to the group you will find this group helpful and supportive feel free to share anything you want with kind regards des
Hi Sharon-- Yes there is light at the end of this tunnel. I know how you must be feeling, because I’ve been there. Many of us have. Coming back from a stroke does take a long time, so don’t let the time discourage you. As you know, the brain has to rewire as you “relearn” the things your brain/body knew how to do before the stroke. This takes a lot of time and constant trying/rehab–which is VERY TIRING. Are you getting treatment for your spondylitis? I read that it’s important not to let it go, but to treat it. Hopefully, the doctor can prescribe something that will also help with the pain. Then, as you are able you can take up your rehab again. I was very anxious and depressed after my stroke. The doctor wanted to prescribe medication for that. I wanted to try seeing a counselor first–which I did. I saw her about every 2 weeks for a few months. I had to wait awhile to get my first appointment, but it was really worth it–just to have someone neutral to talk things over with, and she gave me ideas for coping with the anxiety. ( You can also get counseling sessions remotely.) I would practice my own rehab at home when I wasn’t with a therapist. I ordered, therapy putty and 1-pound weights and practiced strengthening my affected hand/arm as I watched TV in the evening. By the way, it’s normal to feel exhausted all the time at this stage in your recovery. Doing the slightest thing is very taxing for the brain/body as it is healing. I used to keep a little notepad, and keep track of the things I did each day, so I could look back and see the improvement (albeit small and slow). This kept my spirits up. Also, I watched a lot of comedy shows on TV, so I laughed a lot. I always saved Seinfeld reruns or The Office for my last show of the night, so I went to bed after several good belly laughs. Laughter is the best healer. I used CBD oil drops under the tongue at night to calm my leg spasms and anxiety, so I could get to sleep. This was all 4 years ago, I am doing very well now. So hang in there! Try to do what you can to keep yourself feelling good–maybe reach out to help others in some way. I know it’s hard, but try to be positive. That alone will go a long way to mending the releationship with your daughter. Remember, you are not alone. There are many people just like you, and many folks on this website with ideas that may help. So I hope you’ll keep in touch with us. I’ll remember you in my prayers tonight. Jeanne
Good morning @sharlouwil52 . I am glad you have found our forum, it has really helped me know I am not alone and that there are people who understand. You’ve been given good advice already and what you have described about how you feel will resonate with many of us. Grief, exhaustion, feeling like a burden. Let it out. Even if you have to wait a while for it counselling/CBT to help put things into perspective and learn coping strategies. I also took antidepressants as I knew I wasn’t coping. Things do get easier, there is light at the end of the tunnel. Frustratingly slow granted, but don’t give up. Keep talking, wishing you all good things, Julia x
Welcome @sharlouwil52 and sorry that you have had a stroke and have so much to deal with. It IS normal to feel exhausted all the time and to grieve for what you have lost. I hope that the crisis team can prove useful for you and your children.
Shwmae @sharlouwil52, so sorry you are struggling at the minute. Stroke is a shock not only for our brain and body but it can play havoc on our emotions. You are not alone, although I know from my own experience that the feeling of being alone with one’s symptoms can be overbearing at times. However, seeking out small distractions can assist give the mind a break from overthinking. It can also help to get in touch with other stroke survivors and talk, there are stroke survivors meetings, some online and others face-to-face when you are ready to connect to others who can provide advice, compassion, and empathy.
It’s tough on others to experience a loved one suddenly met with this challenge. Sometimes reaching out to other stroke survivors can help lift the burden. I had trouble with peeing for about six months after stroke and had to keep a container I could seal beside the bed because I was shuffling and couldn’t get to the loo on time. I had six TIAs and a major stroke September 2020 at the age of 44. I was left with severe cognitive spatial-awareness issues among other symptoms. I went on an anti-anxiety medication to suppress panic attacks, and I practiced Mindfulness, as well as doing an online CBT session. Every advantage we can draw on to get through the experience is useful and beneficial.
I left all my emotional damage until last which was probably not a good idea. I put aside that the damage to my brain had also affected my ability to filter my emotions and behaviour. For days on end, I would wake up and think, is this my lot? But improvements have come, I kept a stroke diary to see my journey at a glance, it was a horrible year but peppered with delights also. I had to be brave, I had to distract myself at every turn with something that made me joyful, and I had to work on my symptoms every day. It was a tough slog, but small steps without pressure or expectation is key to moving forward.
I too had a stroke 3 1/2 months ago at the age of 53. It has turned my world upside down. I have positive days and then bad days with lots of exhaustion. On the bad days I try and distract myself. I am mobile so I get out into nature which really really helps. If you can or someone can take you I would urge some time in the outdoors especially woods.
Stay positive (it’s bloody hard at times) , stay as active as possible and time will help
Use the forum it’s been great for me
Yes good and bad days but staying positive and as active as you can is the way forward. Stroke support groups if you have one near you and you can get to them can give you a lift and break up the week. Mine is once a week for two hours and there’s a meet up for coffee at a local garden centre on a another day if you can make it. I don’t drive and am reliant on others for transport which is a bind. But just getting out into fresh air and observing nature in all its marvellous forms is a joy. Remember Blake’s poem from school. To see a world in a grain of sand and heaven in a wildflower, finding some form of distraction moves clouds along. And always come back here to Rant, we are not saints and we all do it. Good to have you with us. Pds
Hi Sharon I had been thinking about your first post, I have 2 Sons the youngest just turned 21 we have had many arguments he can’t understand the emotional changes, now when I feel irritated etc I go to my bedroom or the garden and just sit myself until the feeling passes … unfortunately for me my Son is a stubborn whatsit and often follows nagging away, but I am learning to close my eyes and block it out I just wanted to reach out really as you mentioned your daughter and say your not alone as @Pds said above exercise is a huge help, I still find it strange saying that as old me didn’t exercise but my exercise bike has been a huge help to me. I hope the forum helps you.
Hi my lovely I wish I could just get outside to escape and close my eyes as for exercise I have no room for an exercise bike and I still can’t bend or lift my left leg up/down and have drop foot and I am limited to certain stuff with my left arm as if I lift it to high it locks and gets painful I can’t grip very well I just feel like a caged animal trapped because of my mobility I was fortunate enough to have 2 amazing freinds visit me yesterday and brought me flowers I managed to sit outside with their help and laugh and cry and let off steam and hugs while my daughter was staying at her dads for the night what I hate about our arguing is the fact she’s very much my personality I created a strong minded young lady and she knows how to patronise me and that’s when I get angry and I end up crying as a release and then the suicidal thoughts come to head and I’m thinking I’m a burden to my kids I would love to be able to walk upstairs and lock myself away in my bedroom again I can’t get upstairs 🥲🥲thank you for your help and advice hun xxx
Morning @sharlouwil52 . I’m sorry you feel this bad sometimes. Your kids would be devastated if you weren’t there. Really push for some counselling. Some days just feel like there is no sense in anything and you just want to remove yourself from it. I’m not proud of it but I have crawled into a dark wardrobe cupboard and sat there on the floor for a couple of hours ( we live in a bungalow) just to try and disappear. I do not recommend this as it achieved nothing, I still had to come out and face things. Please seek some professional help, via CRISIS or your GP. You owe it to yourself and your kids will benefit too. This is so hard, there isn’t a manual, please know it can get easier over time. Keep talking, Julia x
Hello sharlouwil. Welcome to the forum I can just about relate to everything u say . I’m 11 months down the road but had a fall in the bathroom in April which put me back a bit . I have 2 daughters but they are not close by sadly so my husband is my carer we’ve argued but then I feel terrible for being horrible to him on a good day I know I’m lucky to have him . We must keep. Believing there’s light at the end of the tunnel working hard with our exercises and forgive people who really don’t know what it’s like . They mean well . I can walk round my local park with my rollator now and potter in my kitchen and dining room . I can dress and wash myself but sit in the shower still . It’s all a bit of an emotional roller coaster ! I didn’t consider myself old at 62 and was very active when I’m in the park now all these old people on rollator say hello haha further distances I go in my wheel chair but don’t like the sympathetic smiles I get . Tiredness is still my biggest issue sending u love keep going x
Greetings SharLouwil52 yes ! At times you sink very low and many on this site have been there, Anxiety and depression took me back to GP and A and E and like you thought I was tough Cookie but dealing with this is an uphill battle, don’t know what kicked in from somewhere but it did, and very grateful it did , and bit by bit mood changed enough for me to move on a bit. Now 18 months on can look back and say Yes ! There is light at end at end of tunnel AND THE GOOD NEWS IS, ITS NOT AN ONCOMING TRAIN . When you feel down in the dumps or want things to move along summon up that inner sleeping Amazon warrior that you have. Stay with us and ask us anything, Your’ll get a response keep Your pecker up Pds
so glad that you feel there is light at the end of the tunnel Rups - and that it isn’t an oncoming train. Having a tired and achey day today so it’s good to have some hope