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Mike157

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Everything posted by Mike157

  1. Hi Mandy. Support and understanding from family members is harder than from friends and colleagues. Family see you every day and see you dealing with things differently. One of the easiest ways to show family how hard it is for you is to let them read some of our stories on BTG... There is a great video, explaining with words and pictures of your concerns. I found it a few years ago and have a copy. Its freely available to view by the way. Secondly, now people see us busy, trying hard and doing relatively normal things, don't see the internal strife that we suffer. It can be found here I hope it helps your loved ones understand better? As an EMT your knowledge of life saving techniques is invaluable. Have you looked in to becoming an instructor for this? Look at giving demonstrations with employers/ees so they know the basics, adding information about strokes, how to know what to say, do or how you can help? This isn't limited to this either! Support groups of most kinds, or ideas similar to this?... I use this video to show what difficulties that I may have, I also am very open with my emotions and feelings. I talk about my condition finally I ask them what they feel is right or wrong too... Here is a link to lots of useful information that may help as well, if they read the fact sheets. https://www.headway.org.uk/about-brain-injury/individuals/information-library/ I'll drop by to read any responses... Michael
  2. V.mama. have a word with your Dr. Ask if they can check for migraine issues, these often go hand in hand with a brain injury, these can be treated or monitored using blood tests/medication... Consider making a diary of activities rests, meals, sleep patterns and drinks too. You may find a pattern of stressful situations and then you can adjust the times to suit...
  3. Daffodil. I too have Hydrocephalus and a shunt, diabetic, Epilepsy, high/low blood pressure, diabetic highs and lows, now a possible heart condition to boot! The stress gives me headaches, like you too I use Aromatherapy too, I actually qualified as a very young fit man. I had a business in this field. I currently have 87 different essential oils in my collection.. several great base oils, 3 different burners/misters. One mister in my bedroom uses, Lavender, Sandalwood, Ylang Ylang and tea tree oils. All combined help keep my head and body very relaxed and now quite pain free. In the last month I've only used 8 Paracetamol. Normally I have it on repeat prescription at a high dose, but no more, now only 500mg as needed. Over drinking in a short period can cause pain believe it or not! It's called Hyponatremia. You can also get intoxicated by drinking to fast too. This can cause pain... little and often...
  4. SarahLS a word you should take onboard is acceptance. It's an important word for you. Your old life is now different from the one you now live. Once you accept you are different your mind starts to respond to your new way of life. It took me nearly 8 years to do this.. but boy what a new life I have now.... A new word can be restart. Take a few aspects of how you lived before and try to adjust them to how you are now. I myself was caught in this trap for a very long time. Over the past 18 months my life has blossomed to something that I thought couldn't happen again. Reading some of my posts, I share how I do things each day. I used to drive a lot! 15 times the normal average minimum. (10,000 miles) Swishy you say you struggle with changing in a dressing room! Adapt, how? Why not use a camping chair that folds up into not a lot of space? Cost is nominal too. Easy to carry, you can also ask for one to use, shops are required to provide one! Although not many people know this... Second option is a walking stick chair see here https://www.co-opmobility.co.uk/mobility-aids/walking-sticks/walking-stick-seats/ For you my word is determination. Look and improvise. There are many solutions to the many problems that are sent to test us. Just ask and sometimes someone has solved the problem themselves... just a thought here... Mike
  5. I've checked my sites that I use very often for information. In my usual search engine I typed in 'armchair exercises' I changed the search method to videos. Very similar to what I was taught by my instructor. Having spent 26 weeks rehabilitating I found them very easy on my body. I also use an exercise band to as it adds tension, but is generally gentle on you. Reading your records is a way to learn what has happened to you, but asking questions will give you better answers! I have my highs and lows in quick succession, making me feel like I'm a yoyo! How do I get over this? I train my brain in the most different ways possible. Shopping, Arithmetic, studies, posting on various forums, social, legal and informational too. I have routines that are quite restrictive at times, that's until I can complete them repeatedly and safely. I look for crazy ways to occupy my damaged mind so much so I've learnt to retain, retrain and use my brain in a totally different way to what is expected of me, especially at my level of damage. Which is significant by the way. But I admit I love the things I do, I get so much out of life now, much more than I ever thought possible. I'll respond with more information soon as its teatime. My curry calls me... (I cooked it from scratch). This is my way of keeping busy and happy... Michael
  6. 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
  7. 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
  8. 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
  9. Oh, Jan if you want to know more read my large anni-versary post at 2137 on Saturday!
  10. 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......
  11. 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
  12. 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
  13. 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.....
  14. Sorry to hear about your loss, your tribute is very moving. Thankyou for sharing... Mike
  15. 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....
  16. 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....
  17. 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...
  18. 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
  19. 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
  20. 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.
  21. 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
  22. 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
  23. 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
  24. 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..
  25. 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...
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