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Everything posted by Mike157

  1. 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
  2. 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
  3. 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.
  4. 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
  5. 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
  6. 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
  7. 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..
  8. 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...
  9. 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.
  10. 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...
  11. 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...
  12. 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!
  13. 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...
  14. Further information about this can be found by clicking on the link. https://www.gov.uk/the-warm-home-discount-scheme
  15. Please don't forget to apply for the extra £140 payment you can apply for from your suppliers. British gas has already opened to apply. EDF is due to open on the 16/10/2018. This is worth asking for and the award is given later in the year. Useless trivial but worthwhile applying for.. you can Google winter warm discount for further information...
  16. Since my ability to remember things like passwords and usernames is like a sieve I've not been able to get back on there. Now I am I've written it in my managers book. Thank you for those kind words they help so much. My beastie as I call him is currently laying at my left hip as I type. I know his friendship has help me so much, like when to feed him or play silly games. A lot has happened since my last visit, all of it good. I'm settling in for the cooler evening and have already printed my warning notice for putting up next week. It warns of the cooler days, to take my man bag, wear appropriate clothing and general things like that.
  17. A few years ago I was offered the chance to work for the CAB I had to decline because they have set rules about how they operate. They don't do as thorough job as I do. I can only deal with one or two people at a time, sometimes just one due to the very heavy content that I study too. I have also have the responsibility of being the vice chair of my Residents Association as well as working very closly with the Police on Borough and ward issues too.. I feel things are going well for the moment and that it's very comfortable too..
  18. Since there is a new day every day I am now 2738 days post op and life is now only returning to normal for me to a point. The journey has been fraught with some amazing days weeks and if I am lucky months. I have had some really bad days that got me down but my dear friend Fluffy was always around to remind me that I have responsibilities, not just for myself but for him as well. Fluffy is my huge and very fluffy cat. A little while ago I was diagnosed with an inoperable 2nd incidental aneurysm which is sited close to the scar tissue of my first one. The news knocked my confidence and recovery back to the start again, but I have gotten up and dusted myself off and started all over again. Being a strong guy I didn't let it get me down too much. I still don't have much support nowadays but get by the best I can. I have made some exceptional advances' during this time. I now live alone and am doing remarkably well given my situation. I now have a large amount of friends that I can see often and have a laugh with. Xmas was great for me (this year I got 10 cards and two stockings) but I was alone for the holidays which was hard. Many years ago I didn't have this but with a lot of hard work I have managed to change this for the better. I had spent a number of years struggling alone and helping others as well at the same time. At the beginning I didn't know what a smile was unless it was on someone else's face and not mine. But, I am so happy to report that I rarely have a frown on my face now and have been given the nickname Mr Smiley. Don't get me wrong I still have my bad days, I get by when I go to my local park to the duck pond and feed all and sundry (birds) even the pigeons' come and feed from my hands which is lovely. Some passers by think I'm crazy some stop and chat for a while, whilst some look at me and walk on by without a comment. I am still unable to work as I have been told it is very unsafe, so I cant earn like most that can, I want too work so vey much, sadly I cant. All I can say to the newest readers is that recovery can be quick or it take a lot longer, if the later get support and a great circle of friends and before you know it time will have moved on at a remarkable pace. I now have a love of life and it's now so much fun, something in the early days that simply passed me by, I am glad its caught up with me and has shown me that life can be so great. The best thing is I now have a beautiful girlfriend and although new it's shown me that fun love and laughter can heal almost anything. My lady is the most amazing thing that has happened since my bleed, so although its only been a few months now but the love and friendship has made all the difference to me, so much so I often forget that I have a brain injury. I am now full of life, love and so looking forward to an even better year than the last, come on 2018 show me the best you have to offer I'm ready for it now, bring it on!
  19. Some people may be having issues with their benefits and being denied them or had them reduced. Especially those transferring from Disability Living Allowance (DLA) to Personal Independence Payment (PIP). Sometime The Department For Work and Pensions (DWP) get it very wrong. You can find some case law and some great information by following this link >> https://www.disabilityrightsuk.org/selected-upper-tribunal-decisions-april-2017-march-2018#Employment Although the transition should be smooth sometimes it isn't and you may need to know where to look to see how others have won appeals at all levels. The DWP commissioned Ipsos MORI to quantitative and qualitative research with PIP claimants designed to give an in-depth understanding of claimants’ experiences of the various stages of the PIP process.. The new interim report presents headline findings from the quantitative strand comprising of 1,203 telephone interviews with claimants during February 2017 that focused on the assessment and decision stage of the PIP process Now I have been helping some with their forms and appeals at all levels for a few years now and can see some may need to know how to get what they are entitled to receive..
  20. Winter Warm Discount 2017/18. Time is fast running out for you to be able to apply for this years discount which is worth £140.00 You could get £140 off your electricity bill for winter 2017 to 2018 under the Warm Home Discount Scheme. The money isn’t paid to you - it’s a one-off discount on your electricity bill, between September and March. You may be able to get the discount on your gas bill instead if your supplier provides you with both gas and electricity. Contact your supplier to find out. The discount won’t affect your Cold Weather Payment or Winter Fuel Payment. For more information in full please see this link. >> https://www.gov.uk/the-warm-home-discount-scheme To see if your supplier is part of the scheme please follow this link >> https://www.gov.uk/the-warm-home-discount-scheme/energy-suppliers
  21. You may also find a useful template on how your disabilities affect you on the CAB website. It's called PIP diary a 12 point sheet
  22. I like you, wish to keep a little fitter. I have found a group under the NHS called staying steady. It runs for 24 weeks and then 4 weeks extra. Suffice to say once it's over it's over. Suffice to say I found that disappointing so we have started a group with a Council approved Instructor.. When I say we, that is our Residents Association. It's well attended and It's me in the armchair format. Very gentle exercise followed by coffee and tea... You may find something similar in your area try the NHS or L.A. sites for more information...
  23. Please also consider running the free benefits advisor that can be found easily. One of those useful benefits is Council Tax. You can reduce or have awarded a zero contribution for your bill. You may be entitled to the Severely Mentally Impairment (SMI) discount. Most Local Authories (LAs) will give you any information that you need to apply. You may also find this by checking out your LAs website and applying for it online. Please don't be put off by the title SMI as you are entitled to this if your brain injury affects you to a level that is enough to fulfil the requirements. A few years ago I created a quick guide to useful links for the disabled. I did this in 2015 and has been useful for many in my area. I have also written several papers on the Personal Independence payment (PiP) as well as ESA and how to fill both of these forms in correctly so you get all you are entitled too. pip-diary.PDF
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