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  3. I know what you meant about Edinburgh festival Tattoo/Fringe I'm from Edinburgh & also know Dumfries too we nearly moved to Moffatt 12years ago didn't long story... Ah Daff bless you..
  4. I have 2 words when we are getting over this nasty thing that Docs do not put into practise and it is Human Spirit xxx I think if you can do a little bit (She says sitting in chair) to help yourself and not be deterred by what you have been told you will never do again. Walk, Always be as was (Hydrocephalus head) Not the same person, put her in home. All said by OT's who did sweet nothing for me. Didn't wonder why I couldn't do things just gave up on me. Didn't look what was stopping me doing normal things good job I remember a poem my Sister taught me when she looked after the elderly and she sang to them. The poem was "Crabbit Old Woman" I cried when she read it to me and every time I read it I think of OT's treating me like that woman makes me angry so remember the Human Spirit " is what gets us through the horrid time xxx All be positive as I will one day walk the whole of Sainsburys what an aim in life !! ha xxxxx
  5. 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...
  6. 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...
  7. 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
  8. Yikes that sounds a tricky situation DH. In some situations there is some support available through Access to work scheme http://www.disabilityscot.org.uk/info-guides/access-to-work/a2w-what-help-is-available/ and if your consultant is able to state it will take time for this to work out I’m sure that SAH is a qualifying criteria , maybe look into this to see if they’ll cover transport costs.
  9. Thank you all and Sarah you are not alone in how you feel... I work hard to keep up beat , I do...but it catches me now and then and drags me down like a rock...Today I went to try and buy myself a couple of summer shirts...it was awful...dressing and undressing, no seat in the dressing room and after 4 articles of clothing I was feeling "very swishy" sweaty and defeated... I will persist....only life I have and I am going to do my best to march on... Jean
  10. The phrase about losing your zest for life really encapsulates how I'm feeling right now, but couldn't vocalise, so thank you for giving me the words. I'm still trying to come to terms with no longer having the ability/stamina for taking part in my old hobbies and although walking/nature watching & photography are replacements they are reliant on good weather (and a husband/friend being willing to do the driving). Combined with a new job that I'm struggling with & a pay cut it all feels too overwhelming. I'm hoping that our forthcoming holiday will help kickstart things but as ever coming on here reassures me that I'm not alone in how I'm feeling, while at the same time feeling sad that others are also struggling. good wishes to all
  11. Hi Louise, Well, yes this isn't ideal. I was due a check on 2nd May after a month to see if this was any better - and has shown my vision has improved then - and again on 2nd June. Has it been proven for driving? No - but this needs to be checked. Practically, I've experienced better driving by others - set in the passenger seat of many others 😳 - and scared, but not by me! The problem isn't about me, Dumfries and Galloway has zero public transport options. There are 2 trains to Edinburgh which are ignored by local transport. The only way for me to get to work is a 40-mile around trip for somebody else, before breakfast time. This means I have to drag everyone else to help me out. Without an appointment, I need to book travel and accommodation in advance to avoid huge payments. Without a support date, this would help. Nobody can help. I have no option but to try private appointments to see what is going to be one way or the other way. Better than knowing nothing! Current view of 'maybe travel/maybe not' is not sustainable - not in the like of Edinburgh Festival! This week is OK while my sister gives me her own flat - she is away just now, but when she's back, my flat costs £300/week. Driving would save this. Yes, grim!
  12. I've found a love for gardening in the last 18 months as I can't exercise like I used to (gives me a massive headache) so gardening is a fairly light exercise but also very therapeutic.
  13. This is the lanyard. Just go to the assistance desk and ask them if they offer the scheme.
  14. Louise. Well done for sharing This! I found my experience using sunflower lanyard was amazing ; i and family were pulled out of queues for passport control and security checks so I didn’t have to stand in queues and it just generally helped, I will be wearing it this July when I head off through Birmingham again. Great to see Scheme use spreading , Interestingly I shared with a friend whose brother in Australia had a bleed and they contacted Sydney and think they have also started or triallled doing a similar scheme...would be good to know if similar exists in other countries and if it doesn’t why not get in touch and ask them to do it!!! Let us know here..Help spread our wings a little x
  15. 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
  16. Definitely v pillow and I still sleep upright for the most as I had Hydrocephalus too with bleed and now have Shunt, I found a heated wheat bag really helps with my pain , or hot water bottle as good. I also used to give myself a ‘self massage’ with a base oil and essential oil that I found relaxing an soothing, I used Rose or lavender but hubby might prefer something different. I personally didn’t want anyone to do that for me early on after discharge so did my own shoulders but you could offer to do his hands or shoulders if he is ok with that..very relaxing i was under the care of the Pain management team when I left and they stressed how important it was to ‘smooth ‘ the pain so not allowing it To peak and trough so that meant keep taking my pain relief medication consistently and I only tapered that off after my Shunt was placed which was a good few months after bleed. Eating frequently and well can help with the pain, look at getting plenty of protein and fibre and also anything that helps the vitamins in the body replenish the brain, sunshine and vitamin D was important to me . Sleeping and rest will Help with his pain control. Learning now where his red lights are and stopping before you get there and resting and doing NOTHING. Brain needs that pause space to helpit continue on its mammoth healing journey, all happening unseen. main thing though is if Pain is getting worse then seek help, don’t ignore that. It shouldn’t be escalating and if it is that needs to be looked at. Good luck and welcome to you and hubby.
  17. Jean, I know about that missing ‘Zest’ and I don’t think it’s all that unusual to hit a rut especially when something else drains your energy. Over this last year since my mum passed I feel I’m doing so much to just get through the day and that whilst every day feels fortunate to be here that there is a lot of just getting through it. My pacing is hard to juggle teen kids, working, home and somedays there’s nothing left to be honest and I’ve certainly not felt that joyful whilst learning to adapt to my grief and accommodate the addition and toll of that. My only advice is keep looking and exploring at what brings you some peace, some happiness, some joy. Be curious to new things, It’s there but it may be found in very different places to that where you found it prior to SAH. Exercise and strong core is best found through walking and maybe incorporate stretches for arms etc whilst on shift? I have also found my new found love of gardening also helps my balance, when I started post bleed I would often end up lying in the bed so to speak. Now I rarely fall but I make sure I have plenty of flowers so at least I can stop and smell the roses if I do . X
  18. Hi Mike, Thanks so much for reaching out to me I can look at my medical records on line and I did spend a great deal of time trying to research it the first 6 to 12 months after my events...I don't think my head was clear enough at that point to take it all in...The records include every MRI, every blood test, everything from my 1st hospital admit, through my days in intensive care and then on to my 2 weeks in rehab...I do have it on my mind to try to go through it again, perhaps making notes (perhaps a timeline) it seems a bit overwhelming for me when I think about it...I must get to it.. Ah the exercise thing...all good advice for sure...I did swim (well exercised in water)...did it for my neck as I have 3 herniated discs in my neck...I don't know that it did anything for my neck but it was good for the rest of me haha...trouble being I am not close to where I could afford the pool access ..also working the 3 shifts a week that I do takes most out of me... I am on my feet throughout my shift and often walking up and down hallways in and out of patients rooms... hmmm maybe some excuses here haha...I continue to do the exercises PT showed me and I think there is perhaps a bit of improvement...I don't feel like I might fall over when picking up something off the floor... I think perhaps I am in a bit of a rut at this point...I do what is expected and will accept invites for lunch etc, even went to Mexico...but truth I am pushing myself, I would like to say no....sort of feel I have lost some of my zest for life...makes me sad as I was the one always thinking of taking a trip planning a get together...I wonder if my friends notice? My husband knows, I think my kids do as well...not sure...anyway...thank you again Mike, we all have our mountains to climb...some days bigger than others... Jean
  19. Definitely get a V pillow!! I've used one since day one and still use it now - I take it everywhere I'm stopping over night too.
  20. That looks really interesting Louise. I may look into getting one for me self as I struggle with all the airport noise. Clare xx
  21. Daff, after you telling me last year about travelling through airport with a hidden disability I saw this today from Headway... https://www.headway.org.uk/news-and-campaigns/news/2019/sunflower-lanyards-take-off-for-passengers-with-hidden-disabilities/?fbclid=IwAR2oP0xe5NfQHu3qD90mkqiL4n9K0gdPwenDurqCGAEotOFNHQlcfMVxkNA Hope its ok Mods I can share this??
  22. The appointment thing sucks hope you get something soon.. Being prevented by consultant though is obvious for a reason I get your gutted and with the non appt not great but isn't it safer at the moment you don't drive?
  23. 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
  24. Hello and thanks for your comments. Relentless pain is so debilitating for your hubby and so hard for you as you feel helpless to offer any relief. As Jess comments, definitely continue to check with your medics. Also, as it seems to be worse during the night, has he tried sleeping in a more upright position. Elevating him with these longer `V` shaped pillows is worth considering. Subs
  25. Speak to the Drs as mine prescribe co-codomol and I still have headaches 17 years later but they have got better xxx
  26. Thank you. It's such a rollercoaster, the aftermath of SAH. My husband has had a few good days, relatively low pain. But nights are dreadful for him. He gets restless legs, and head pain seems to start around 2-3 am every morning. Yesterday was really bad, the worst he's had since he left hospital. It shakes both of us up when it's that bad. Paracetamol does nothing to reduce the pain. Can any of you comment on whether you found anything that worked to reduce the pain? There doesn't seem to be any predicting it. He drinks lots of water, he always has, and even more so now. He probably drinks around 1.5-2 litres overnight. He has also found that when the pain gets bad at night he has to get up and walk around, as being upright seems to reduce the pain. From reading the forum posts it seems that ongoing head pain is a big feature of recovering from SAH, and as many write, everyone is different on how long it persists and how bad it continues to be. Thank you for your replies. It is so good to talk with others who understand the journey. x V
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  28. Amazing stories here! I think my own sight will take a long time to get proper vision back. I'm not too worried about waiting... so long as I can drive.
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