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Everything posted by Mike157

  1. Swimming is a great way to help strengthen your core. In my early day I spent a lot of time in water. Why? It takes all of your weight off of your body, allowing you to have some pain free moments. I use a pool that is about 35m long, I pretend to run, literally. So instead of swimming you're in the upright position, it's a little harder to do but boy it worked for me. More benefits are that you can't fall over in the water so to speak. Use a flotation aid to give you some support too. Start slowly then build up doing a whole width at first then a length. If you find it helps, why not join the aqua-exercice group? It's from there you can join the gym again super slow starts.. If you want to know what happened with you on your night ask for a copy of your medical records. You'll get them and can read everything from them as well as keeping you informed. Mike
  2. Some great comments posted already, time, support therapy and Physio will all help you in the long run. Just ask away if you have any questions as we are open all hours. Taking your time restarting your life again is a must. Too much too soon and it may slow your recovery a little. Theres a lot of stories here on BTG, some will be of use, some may be funny, most are very informative and you can learn how we recovered and helped ourselves with help from other posters to get as far as we have. I wish you both the best of luck in starting your journey please return and let us help you help us? Regards Michael
  3. Welcome to your new group of friends. We all know what you feel, we have been there too. Just remember not to over do things, or do too much too soon. Things will seem very slow, recovery is different for each of us, some parts of each of our own stories may answer some of the questions that you might have. Theres a future for you to discover, take small steps, pause reflect, look forward and set small goals and continue your journey as it unfolds before you. Just pop in to the forums and find us, talk to us, share with us. Together we all learn... Michael
  4. Oh, Jan if you want to know more read my large anni-versary post at 2137 on Saturday!
  5. Morning Jan. I too am alone, (ish). But, I've made some very special new friends too. Depression, reared its ugly head some time ago. I looked into getting support. I found a group called resource therapy. This is run by my local Council and NHS, it helped me so much. I'm no longer depressed as you can see from my posts. Although I don't tell everyone else about how I feel, I do let Elaine and Cookie know. They are my closest support circle. I'm guess I'm lucky enough in a way because I get to be rather silly at times! Playing at my shop, being super silly with Elaine. In as much as making her jump at every opportunity I get. On yesterday's green room topic I have asked if people get anxious as their anniversary gets closer, you have given an answer to that without knowing about the question. Fear is real, but you can conquer it. Just find one thing that makes you smile, build on that, it's fun and will start to overflow into your daily life! Secondly, see if you can find something that gives you pleasure in doing. In my case its cooking. Going to charity shops looking for nice books full of recipes. Here's one I do often. I'll ask Elaine to sit at my feet to look away and listen and not to comment. I pour my emotions out, I feel that by asking her not to do or say anything at the time helps. Just by listening your partner will know what's wrong and maybe a few days later says or does something that makes you smile. Do this weekly and repeat as often as needed. When your lips curl up into a smile then you know you're on the right path. The rule of not saying anything is important. They MUST remain quiet during the talk. Leave notes around your home saying today I'll smile x times and do x things that make me happy. It works.... Occasionally going for a walk in to the middle of nowhere and screaming loudly is also good for you. If you can't go out then a pillow often works too... Once again a long reply for this I'm sorry. But at the end of the day a smile is warming, a scream is releasing and a hug is heaven......
  6. Hi Michelle. Time flies by so fast doesn't it? I remember my 5th so many years ago. But looking back now my life is so much better. Like you it was about the same time for me when I fell from grace. Luckily I was surrounded with my friends. I did get help, but it lasted a mere 4.5 hours. I was booted out and left me to fend for myself. I did, its been very hard. Like you too, I found a great friend, Elaine is her name. But this came only 18 months or so ago. Even this time has flown. I'm rather private with my friends, I keep a lot from them, but they aren't stupid either. They know me better than I do. Although I'm left to my own devices recently I still need help. I chat a lot on here, I don't go out much for social things, unless I'm with my very close group of friends. Even that's starting to dry up! Loneliness can be devastating at times, but a Godsend for others. They don't see the tears or heartbreak do they? For us, having this group is a amazing isn't it? We all know how we are, what we're going through. But we also offer support, love and advice from our point of view, it's like a premier club of people that have been through this before. Like today, my 90 minute journey to dance club and back just to have a flask of tea, feed the ponies and chat in the car, keeps me from going stir crazy at times. I'd love to meet some of you all, have a drink, a bite to eat, to chat endlessly about our lives, sadly I dont know anyone that lives near me... I'd love to WhatsApp message anyway all day, but people have their own lives to live, so we do the next best thing. We post here instead.... In my case, I feel a little bit too much... but not at the same time... Good luck for the next year, may it be full of surprises and happiness... Michael
  7. Don't forget the winter warm discount applications normally open from next month. This Government payment can help you stay warm during the winter. This is worth £140 per year. You need to contact your own suppliers to find out when this years is open. It's a little later this year but you can apply earlier to get on the list... The Warm Home Discount Scheme for winter 2018 to 2019 closed on 31 March 2019. The 2019 to 2020 scheme will start on 14 October 2019. Info from here https://www.gov.uk/the-warm-home-discount-scheme
  8. This for me explains so much about me as a person I thought I would have to share... I posted this on my Facebook tonight. Some of you know my difficulties, some help by being able to understand me more than others. I don't always see my deficits but my friends do, they are there to help, guide and reassure me that it's ok to be different. Most of all it may appear I am an arrogant person, not so, this is one of my many self protective qualities. If you read the link you'll realise that I am awfully ill. I try hard to please and get things right, but I often fail. Not on purpose but because I'm learning still. Even after 9 years next week I still struggle. I continue to learn and get better each day at what I do and say. It takes a lifetime to adapt, help me, help myself. Be there with and for me, help me be the best I can... With your help, support and guidance we can help each other understand I am different but I am me. I am Mike.....
  9. Sorry to hear about your loss, your tribute is very moving. Thankyou for sharing... Mike
  10. Macca, all. My journey started with the help from my daughter Cookie, then picked up by Elaine. Elaine has taught me how to love, how to remember I'm a man, different but still a man. Supportive, loving, caring and so giving. Elaine often asks why do I look at her with so much love in my eyes, I tell her why, I get the comment 'you're so soppy it's so cute' she says. I say no, 'thank you for giving me this experience'. Then I smile as she looks at me quizzically? But hey life is beautiful with her in my life, that's my reason for me to do well. As well as for myself too! In the end the better I feel the less I stress about my condition.... so much so I'll often forget that I'm really ill. One word to explain my life today is Heaven....
  11. Thanks for your thoughts Macca, life is hard for us, reading the stories in the Green room just show how different and similar we all are. The struggles, the journeys, most of all the acceptance of being as we are Learning how to be stronger, to cope better and sharing our journeys with each other so the next reader can see theres a future and all isn't lost. Each of us has to find a way, but seeing that others have walked your path before will help in the long run. After all life has a way of giving us hope a future best of all a reason to walk the new path....
  12. Well it's my 9th anniversary in 4 weeks time. Doesn't time fly when it means nothing anymore? How much has changed for me? Lots and lots. I've had a rollercoaster ride of a recovery. It used to be more downs than ups. But now? Wow! What a huge difference it's made. Although I'm still struggling with so much I've adapted, I've overcome and I've improvised too. It's been really difficult at times, too much on the odd occasion. Even now, it hurts to know I'll never be the man I once was! The new me has had several reincarnations, I've scrapped and reborn myself over and over again. This time it's much more stable, I have many more new friends in my life. All are very caring and loving. I lost many due to this condition but it's their loss not mine. With their rejection I found a new path each and every time. So I got better and better. My recovery has been fraught with dangers, concerns ultimately I now know I still have a long way to go. I've been scared, I've cried, laughed, worst of all I quit at one point. But now I love too. This has helped me so much. Something I never thought I'd ever find love again or a loving partner, that is understanding, warm, kind, considerate, loving but most of all a guiding spirit. I'm not out of the woods yet, lots of journeys to take and conquer. I've made mistakes, I'll continue to make mistakes, I will learn from them, gain knowledge from them. Best of all, 9 years on, guess what? I'm happy, I smile, I do much more today than I ever felt possible, In the beginning, I couldn't even brush my teeth. Now I can make extravagant meals, hold conversations, cope well, not as well as most, but I'm getting there very slowly. I'm a crazy old Coot and my friends love me for it, the customers love me as do their kids. Gosh even I love me too. I still cry a lot when I fail, I hide my failures, but most see me struggling and help me up to my feet again. Best of all I've learnt to waffle, I talk too much I write too much, thank you all for being my friends and reading my anniversary post. Love Michael Xx Ps. If I can do it we can all do it, practice takes time, time is in abundance, make the most of it, you never know what's around the corner...
  13. Bev. If I didn't know better I'd think i was talking about myself in your situation. Have a read of some of my posts, you may find something that might help you. Theres lots to read by the way. Time, yes time is on our side use it wisely, take your time for you. You need it to recover. Take time to do things much slower, it's not a race, look at the Rabbit and Tortoise story, theres the message right there. You hit your own answer in the very last sentence, it's hard, very hard. Sometimes it too hard. But. Some good news for you. Ready? Here we go. Theres always tomorrow, today was hard, yesterday worse, but tomorrow, oh it's going to be a good day, even for 1 hour itll be good. Now the weather is warmer, go in to your garden, take off your shoes and socks and walk on the cool grass, make fists of your toes. Breathe and relax. Hear the birds singing, feel the sun on your face then breathe, relax and do it all again. As often as you need to try this, its soothing and mind calming. It helps to relax, the headaches may not hurt as much, the sun with warm your tired bones. The cool grass under your feet will soothe. Take care Mike
  14. Jean, like you I have problems with various things. Locally we have a group called going steady It's a chair based exercise group, at 57 I'm the youngest. We do these exercises and at first they seem way too easy to look at. Oh how wrong was I. But, given it's only and hour doing this, it really increased my abilities to be stronger in stance and balance. Being able to sit down and exercise was brilliant. We use the exercise bands of differing resistances. I'm now on black. With these bands you can do so much, stretching, pulling and many more of the core exercises to strengthen your tummy, arms and legs. You can also use them in a rolled up tube to help with your gripping too. Although these bands are only 5 feet long they do wonders for your body. Give your local rehab unit a call and ask if there are such groups in your area? Secondly and much more fun is exercise in a swimming pool, it's a lot harder to fall over and cause injuries. Water resistance is surprisingly good at core repairing and strengthening too, combining both may offer a very nice end result. The nice thing about both of these is it appears to be a lazy way to exercise but take my word it's not, but I feel great after 36 weeks! Mike
  15. Hi, Looks like you're doing well? Doing too much too soon and your body gently let's you know. I'm nearly at 9 years post. Having had numerous hills to climb, my eyesight was one of them. My optician was aware and paid attention to the fact the pressure in my brain did affect my vision. Then I found out I had right side peripheral vision deficit. Secondly allegedly I have cataracts too. I was checked by the eye Hospital in London a few years back. It was confirmed that I did have the deficit. Due to numerous complications and medicine reviews, I had my anti seizure meds stopped for nearly 18 months. My sight started to return to normal I used to have to wear spectacles for day use and reading. A month or so ago, I had the great news that my eyesight is 20/20 again! I only need standard reading glasses. If you're on medication it may pay to ask your Pharmacist about side effects of combined drugs, sometimes there a conflict. Problems with your eyesight is very common due to the fluctuating pressures in your brain. Resting often can relieve this pressure and you may notice a difference in your vision. Strange question do you use sunglasses? I find the yellow driving anti glare ones often help with bright lights, even in doors. I also wear a baseball cap every time I go out to reflect the light and offer shade to my eyes. Everyone is different, this is what I do and it helps me. I also use tinted coloured lighting indoors too, soft pinks work for me.
  16. With my epilepsy I'd not had a really bad one for nearly 18 months, as some know I had a really bad one very recently. My warning signs are confusion, dizziness and unsteadiness, it takes a few seconds for it to take effect. I head for the nearest wall, in case I fall over and hit my head. Why a wall? You put your back against it and slide down being supported by the wall, so no falls to the ground. By the time it's over, I'm really tired and very confused. This is why I have my routes around town. I speak to shop keepers and let them know I'm ill. Then if I need help they know what to do. Only a few times have I been caught with an episode out of the blue, then it really hurts. I've now got the Headway brain injury card, it's advertised on this site somewhere. I got mine quickly. It's a nightmare when you're on public transport to have a fit, so notifying the driver is a good idea, as is telling them your stop. It's happened twice on a bus for me, the driver looked after me, kept me on the bus, then dropped me of on the return journey at my stop. Pointed out where I needed to go. Jimble, little and often, slow and safe, repeat steps 1 and 2 very often. Use visual reminders, eventually your mind will adapt to input in a different way, this is cognitive retraining. More later. Mike
  17. These results are normal for us, I have cognitive, functional and executive function disabilities. We adapt to each disability as we come across it. Practice makes perfect. We adapt in ways that seem strange to others but to us it's another step forward. Lists, reminders a great circle of friends are really good too. As is keeping a diary for yourself. I carry a pocket book to jot notes down as I need to. I also have made friends with various shops, why, they are places of safety for should I have the need for them. I've used them in the past when I mess up. Learning is going to be hard at times, hence note taking and asking for information in smaller easy to handle slots. Weakness in things we used to do but not at the moment are actually strengths, why because you already know it's a weakness and already starting to adapt and to make it a strength. Playing games is good too, as is the Nursery rhyme 'old McDonald had a farm'. Please don't laugh at me for this comment, but given you have to remember animals in an order, it becomes fun learn this new technique. Mike
  18. There is a place/support group called Headway, they are a charity that can often help when you feel all is getting to you. Some of us have heard of them, some of us have used their services. I know I have. It made such a difference for me, plus they also help our carers understand how hard our recovery will be. The support and visits they make are absolutely amazing, helpful and very supportive too. Above all, all of us know what you are feeling and going through. We will listen and offer an ear to listen and share your experiences and our thoughts with you. Fear of another bleed is very normal. I know I worry way too much too. Time is a great healer, as is our closest circle of understanding friends and family. Talking is another way of helping too. They can only help if we talk to them. Once you open up and let them in can they understand how you feel deep inside. Depression is a normal side affect and we all suffer it often. I have many tools I've built up on over my 8 years and when I start to feel low, I head for my closest friend, I ask her can I cry on your shoulder and let it all out. I can cry for hours like this, I'll then say sorry and then get a playful thump and told in no uncertain way, 'don't be daft' I'm here for you! I love to listen to thunderstorms on my PC, for me they relax me. Or I'll try to bake a cake or go and feed the ducks. We all have bad days, we have good days, all I can offer is talk, share and try everyday. It does get better over time and one day soon you may find your way. I hope it's soon. I wish you lots of happiness and hope your operation goes well. Regards Michael
  19. Don't forget that if you had a large bleed there may be areas that have been damaged a little by the swelling, in these areas the fluid build up of CFS can one often happens, it'll naturally drain away. Sometimes if there's a little more floating around you may notice this when you move suddenly. It's the same sort of sensation if you get up way to fast. It can be very unnerving at times and we worry a lot about it. I get it all the time too. I lay down and gentle roll my head and can often feel a drain happen, then the feeling goes away. I hate it when this happens when I'm walking as I get all wobbly and I think I'll topple over! Always rest often and take extra time to do what it is you're doing..
  20. I know from personal experience how difficult it is to calm our minds to a point we can relax and find peace. Recently due to the bad weather and storms, I actually found it very relaxing. The noise of the storm, the rolling thunder, the pitter patter of the rain hitting everything in sight making soothing noises. The strange sounds from the rain hitting the concrete, wood, metal, puddles and so on, was so amazingly relaxing I slept like a baby. Storms like this don't happen often here, but, I found a way to have a storm anytime I want. You can search online content for storm videos which are free to listen to and watch. I prefer a very dark room, the volume up a bit then for me the magic starts to work. I'm going to call my experience of this weather therapy, feelarama. You can, after several sessions be able to lay there enjoying the experience and feel like you're out in the storm but not getting wet. It works for me maybe for you too? Not sure, but just sharing how I relax...
  21. Kris Has any of your team spoken to you about hydrocephalus? Your draining of the cranial spinal fluid (CFS) could be more noticeable for you. Some of us suffer badly from it, as it gives the same feeling as vertigo. To explain more, it's like the tide going out all of a sudden and makes you feel awful. Just an observation by the way.
  22. Cognitive, executive and functional disability are common after a stroke. As is Photophobia, Dysarthria, emotional dissociation, (this a hard one to deal with). Maybe asking your team for an MRI to see if there is any scaring that may be the culprit. I've had all of the above badly at times. I've see and spoken to many different teams. But most of all learning that I've now changed was the first step. I've hurt many people in different ways too, as in the way I speak, act, react and worst of all withdrawal of myself in to myself. Hiding and not being open and asking for help was my downfall. Eventually I had a deep MRI, plus an ECG, both found terrible scarring on my brain. These were the main culprits. Once this was found I was offered support from many Hospital departments. I also read up on so much so I could understand why I was as I was. I am pleased to say I am now a warm kind loving man, in love and very happy. Not the self destructive old meanie I was. If I start to feel as though I'm slipping, the first thing I do is talk and ask those nearest to me if they see a change, if so what. We work together to deal with the problem and then I feel much better. Intimacy after a stroke is very hard, there are some great leaflets out there, just ask Google sex after a stroke. There is a real fear of intimacy after a stroke and it's possible to work around this read what you find and talking can really help. I have a folder on my PC loaded with information that has helped and I wish I could share it all...
  23. Hi, I'm 8 years post OP, it's been a seriously hard journey. The times my mind thinks hey it's time to crack on and get back to normal, but. The thing is my body as it is, now tells me stop, look and listen. It's been the advice for many over the years, including the Green X man too. At one time in my life I could drive 36 hours and be fine, I can now travel 4 bus stops and be ready for bed and or a snooze. I can solve complex studies, but I cannot look after my fridge or keep it in order. I can cook difficult curries but get lost with a fry up, go figure! I can sleep for 48 hours straight after doing some light activities. Then on the other hand I can do so much and not be able to sleep. The brain is like a muscle and needs rest. If over exercised it will need to rest. This is so true for those of us that have suffered some type of stroke or have had a significant injury too. Your mind and body work as one, but, one knows best. That is the body. It can only take so much before it'll take over and make you rest. Although he has the ability to do so much so soon is commendable. But too much too soon is also a bad thing. You may heard of heard the expression baby steps? If so, a gentle reminder that others can see what we cannot nor will not or don't want too! Having a shopping list is one of many aids that assist us to recover to a point we believe we can manage on our own without gentle reminders or aids. We often remember those amazing days pre-stroke with much gusto, we want to get back to them to become normal again. Remind him gently that there is a new him in his life and it's not as strong as his old self. It's now new and you both need to discover this together, as only together will you both realise things have changed. I used to hate myself after my stroke, why? The ability I had was gone, I needed to learn about so much from scratch. Now if you ask me do I love my life now? Yes I do, so does my partner of a year too. Because we have worked hard together to get over all of the barriers. I thank her from the bottom of my heart. I love the new me. The future is there and always will be, but it's now different especially since there's a possibility of a second aneurysm. Stress and over working is not not good in these circumstances. Secondly frustration and memory is second nature and you can explore this together and discover a much more gentler way adjust to your new situation. I too have been diagnosed with a second aneurysm and it scares me so much. But, I have a special group of friends now and we look out for me and we work together, to make sure I take my rest as I need and to make sure I don't do took much either. Advice? Slow and gentle, little and often if in doubt don't do it. If you rush too often, or do too much you may find it's got consequences in the long run. You always save more by going slower.... plus life is much better in the slow lane as you see more and can do more. Sorry for the long reply...
  24. Thanks Winb. Has it been 8 months since I started this thread? Oh my gosh doesn't time fly when you don't have a care in the world? Well the summer has come and gone to a point. I'm still lounging around on a very lovely day, the sun is out, it's very warm and I've just had myself a picnic. My 3rd this month! I am finally giving up living in my 12ft sq bedroom at last, I'm spending much more time in my lounge. The most amazing things happens on a daily basis. I may be laying on my bed and I get a text, then a call from my special lady. Since my voice goes all gooey my cat comes on to my bed, sits at my hip, starts to meow like crazy because he knows I'm talking to her. It's so funny to watch and see him behave so strangely. Most of all when she's here in person he likes to siddle up to her and keep a gap between us. If we get too close he's there nudging her away from 'his space'. I said to my daughter this week, am I doing better this year? Her reply? Why do you think I've not been over so much? Smug reply I say, you've been working too. Then I get that Smack in the gob reply, 'Dad you look really rough', I say "but hun I've just woken up" then realise it's gone 3 in the afternoon!
  25. Hi all. My biggest fear is that if I fall and hit my head will it cause issues. I then worry so much. I had such an incident recently and it was bad enough to warrant a CT scan. Luckily it was fine, that was a close call, I've had a major fear of this since day one. I have found that that are very few real life support groups for those of us that are many years in to recovery. Sadly the one group nearby is isn't worth attending as it's not the type of support longers like us can contribute to, which is a shame. One thing I've noticed is the medical teams are keen to wash their hands of us once we are able to cope better, but not fully able to cope without the close support of family and friends, if we have them that is! There is a word for worrying needlessly so I'm told that word is inappropriate medical behaviour! For the post above, Swishy, since you are US based you will already know one of the motto's used by the US Marines, that is improvise, adapt and overcome. I use this myself when things get tough. After all, each challenge is there to be beaten, one way or the other. When you do beat it and do so on your own, it may give you the boost in confidence to help you go even further. My motto is. Tomorrow is a new day, what can I do? What will I do and how well can I do it! Regards...
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