Anya

The Daily Mail is tabloid muck…I saw straight through it! This hapless duo were after publicity and money and were probably paid a pittance for the privilege of their stories to be dressed up, misrepresented and mocked! I didn’t believe any of it!!! Someone I know is a Mail journalist & told me I could be paid £50 for ‘my’ story if it could be sensationalised & facts twisted!! As for the comments…silly folk!

A pause for reflection; It is nearly six years and life has got rosier and more positive but I live it everyday and I’m most definitely not who I used to be! In the early days of recovery, I felt like an alien. I still have part of me missing. My friend Jayne reminded me today how far I have come. She used to rehabilitate patients with head injuries in the States, so when she first met me walking the dog, she knew instantly I had suffered a brain trauma, of some description, as she said, I spoke utter b*ll*cks! Now I am fully intelligible, engaging and ‘with it’. I do find I laugh much more…my sense of humour seems enhanced…maybe that’s a sign of contentment or madness! But it has been a solemn reminder of how short & fragile this life is and how we must rise up, keep with the struggle to heal and piece ourselves together to become whole again. Kel, it was very sad to hear what your friend said…forgive her as she wasn’t thinking! Anyhow, no-one would understand except those who’ve walked in your shoes, as we have.

Hi Jen; take it easy for the rest of the day…you’ve endured a lot! I have to tell you my story of returning as a medical secretary (although I once was a nurse!). It was probably six months following on from a sah, I bounced in pretending all was normal and well, trying to appear normal! What a massive mistake!! As soon as my bottom hit the seat, it was all systems go…answering phones, message playbacks, audio letters, phoning drs, making/changing appointments, etc. As the first day wore on I felt I was mentally wading through treacle, later becoming concrete; my brain was so fatigued it stopped working! By the third day I couldn’t even get out of bed, never mind attempt to get to work! It was crucifying and mortifying. I think there’s nothing more mentally taxing than having to multi task and juggle! Instead, I moved down a gear and became a childminder for a while, exercising like crazy to regain stamina and physical strength. In Scandinavian countries they take this approach to rehabilitating stroke victims (I speak from personal experience!). They set them rigorous physical exercises in gyms and rehabilitating them mentally, psychologically and physically before discharging them. We are so behind on this, it makes my blood boil!! Our energies, mental and coping abilities are finite at the beginning and you must do all you can to get physically and mentally fit and reserve and replenish when you can – find a balance! Just thought I would present a glimpse of what it was like for me in my first year! Love Anya xx

You are such an inspiration!! Remind us again, how long was your neuro rehab program and what did it consist of? I’m looking forward to reading ‘Your Story’ as a prelude to your book!! The only rehab I received came in the form of physio in the acute stage, other than that, I just pulled myself up and got on with life! However, five and a half years pass and suddenly, Winchester Clinical Psychology department, are offering cognitive testing and support. Today, my first session, focused on short & long term memory; which I found gruelling heavy work. Next Friday’s will be on assessing skills at decision making, organisation and planning. With these results it is hoped a programme will be designed specifically to meet my cognitive needs! My memory once was brilliant and if they can devise a program to recover it, that would be magic! I don’t think it’s ever too late to repair and strengthen these core skills, and as you say, we should all keep on a cognitive program for life!! Anya xx

Hey JD, It’s just dawned on me about the breathing under water with scuba diving…I think I too might have been terrified of losing the plot!! I can well imagine though how spiritually cathartic it was to swim amongst such amazing colours of coral and fish in a spectacular underwater landscape….how rich and mysterious! It’s probably one of the few unspoilt places left to explore, and a serene, if not a surreal experience, once you've mastered it. I shall be going to the faroe isles for much the same. Its majestic mountainous coastline, its mysticism and its mists!! The houses aren’t much to look at but the landscape looks awe inspiring; altogether an alternative world - a bit like Phillip Pulman's 'Northern Lights! Will tell all when I've been in April!

How interesting that you braved scuba diving…good on you, and as you said, you gauged how you felt and took precautions with the ‘depths’. You’ve put me in mind of what my Neuro consultant said. He was so nonchalant, I asked, whether it was okay to bungi jump, scuba dive or parachute (as a joke) to which he replied YES!!! However, I haven’t a death wish; although scuba diving does sound fab! Well done you!! We do need to take care with risks and to challenge our confidence and abilities still! I have flown since my sah with no effects and plan to again in April…to the Faroe Isles. I might contemplate an abseil or two…or a whizz in a helicopter!! Anya

Hi Caz, I am in west hants so we’re neighbours! I am roughly 4 yrs & 8 months past ‘the event’! I ditto all your symptoms, only now they’ve radically diminished except for the low tolerance to loud noise which I still cannot cope with! I work part-time and study the rest so enjoy this new balance. I did have zilch confidence with memory and, being expected to remember facts would be scarey and overwhelming…a case of believing I can’t cope, so won’t cope!! Returning to study, using my brain has boosted confidence and vastly improved memory…so I’m inclined to think this can be repaired over time the more you use your brain! Although not fully intact, I do take a dictaphone on walks if there’s a lot of thinking to be done. If your headaches are severe and all too regular then visit the gp and see if he can prescribe something really more effective. The main objective is to ensure that you eat well, sleep well and rest when you need to; o’h and keep a structure to your day so that you can improve your physical/mental/emotional stamina. As to the question ‘who am I now’, its okay, you’lle slowly but surely reconnect to your former self…albeit undergone a change, but it will come back; don’t be disheartened…it will take time! You take good care! Anya

Hi again, just to say if you would like to email me at any time I would be most happy to help. However, I will just say I'm preparing for a presentation to give tomorrow at college, but anytime after sunday is fine by me! Ax

Dear Sas, Please take good care of yourself at this time. You have suffered many losses and you are grieving for many things. A counsellor would be supportive in helping you process all of this. I am in training to be a psychotherapist/counsellor myself and as painful as my experiences of loss have been it has proved cathartic and strengthened my core. It will certainly help you gain focus, clarity and healing. My mother passed away middle of last month and I have felt totally shattered by this loss, but I am processing it with my counsellor. It is a bumpy road to examine your losses but once processed properly it will discharge so much grief and you will gain so much by it. Again, take good care!! Love, Anya x

Hello Anne, I would say it is normal to still feel fuzzy at your early stage. I recall until my third year still having brain fog issues, where my brain felt numb. I am past four years now and I definitely feel my head and thoughts are clearer, with more improvements all the while. Obviously it depends on your state of mind and I am feeling so much more positive, focused and alert. I would say the first three years are profoundly marked with symptoms, but if you can look positively and be pro-active in learning again, this has greatly helped. Best Wishes, Anya x

O’h hun, I wobbled all over the place as feelings were intense. Be assured that in time you will see how far you’ve come emotionally and you’ll feel stronger and more confident. Also dropped and knocked in to everything as didn't have the spacial awareness, just basically clumsy. My memory was significantly impacted but has massively improved now (four years on). The funny sensations in your head, more particularly around the site, are your membranes and synaptics restoring. The brain fog you’re experiencing are all normal too; with some days better than others. Try to focus on the positives, as hard as it is, times will get better; believe that they will and in yourself! Keep strong! Anya xx

Hi Michelle, Thank you for posting. It’s perfectly normal to ponder on what to do with the rest of your life - after such a huge life changing event…I had a light bulb moment with mine and decided to re-train as previous work did not agree with the new self! I won’t mention just yet what that is as I am struggling with it presently, but I just reintegrated gently back to part-time work in a job that’s enjoyable, freeing my time up to study. All I’ll say is take one day at a time, pace and remain positive that in time you’ll feel more normal. I’m in to my fourth year now, but clearly remember how much of a journey its been in my recovery. Good news is, recovery keeps happening even past four years and Jill Bolte Taylor notices it even eight years on - so this gives massive hope, that not all is lost, as you may be feeling! It’s a struggle at times with kids but they bring positives and better focus on the road ahead. Always remain hopeful and pro-active in your recovery and time whizzes past, then you will look back and see how far you’ve come!! Best Wishes, Anya x

I’m glad you raised this issue. It brings back a happy memory…in the first year of my recovery I thought it a good idea to take my daughter, Poppy, to the remote hebridean island of Colonsay for half term end of October. We flew from Southampton to Glasgow, train to Oban and ferry across. Was this marathon journey worth it??? You bet!!! I could have heard a pin drop!! It was like being on the moon…earily quiet. My daughter 16 at the time, has since sworn never to go again as all you could hear was my screaming at her to pedal faster and stop being a complaining brat!! I got my revenge that week!!!

Yes I’m afraid I know just what you mean….noise makes me intolerant, any loud sudden noise (kids squeeling) makes me shout or run!!! It does ease a little, or maybe I’ve become more tolerant. Bright lights also or overloaded senses bring out the worst. I do have the radio on if I’m in the house…but only listen if its calm. I would say noise intolerance has been second to headaches/fatigue and I don’t think I will ever feel differently. Silence restores everything! Anya

Hi Joanne! My BP is kept stable on a small dose of cozaar, I’m also trying to step up the exercise (walking and swimming) and reduce a little weight! I would prefer to make life style changes but recognise that high BP carries the risk of a repeat….will in any event pop along to my gp for a review as lately concerned with increase in headaches. Sounds like you are making good progress. Your 'cotton wool' head, which I describe as brain fog will lift...weather is foul and is probably affecting it too. Don’t be pushed back to work too soon; agree to nothing, until you’ve weighed up how you feel physically and emotionally! I consider I was very fit pre-sah, and afterwards I made it my goal to regain my former physical strength and emotions before I returned to work, a year later…to something different and far more enjoyable and interesting. My previous work was stressful, mentally exhausting, and now…I work to the hours I want to do whilst retraining for something different!! This is just what I HAD to do, but while you’re signed off work recovering, take stock of your life and re-evaluate, make changes that suit YOU! Keep positive! Anya

Hello Joanne, I suffered the same, and would strongly advise you don’t agree to a phased return until you have recovered from the initial post trauma, for starters! You just shouldn’t jump back in so soon, but what you need do is focus on restoring your emotions, strength, stamina and faculties. You’ve a bit more distance to go in your recovery but you will get there if you guard against overdoing it, a case of learning to walk before you run again. Take time out to restore yourself fully before even a thought arises about work! Wishing you well. Anya

Greetings to you Charu! You are certainly a high achiever, studying your Msc IT at University, so I must congratulate you on your achievement. The symptoms you describe (severe head pain, dripping effect over brain, loss of speech, sensitivity to light) may well be indicative of a brain bleed and will hopefully be picked up by a ct scan. It would be hugely important to resolve this to help you re-focus, to move on, and to know that your brain is now ok. I appreciate, as a student you undergo a huge amount of stress during exams etc, therefore it is important to keep a watch on your blood pressure and to try & rest when you do feel extremely stressed and tired. I would mention your health worries to your course tutor; and explain you will be having a ct scan. You haven’t mentioned whether you’ve seen a doctor (gp) here and what he supposes. I think this would be crucial. I imagine you are very young, With youth on your side, you have made a remarkable recovery and this is a blessing! I most certainly understand your concerns with wanting a diagnosis and whether there may be any further concerns. Karen, who set up this wonderful website, had a similar experience when she had her first bleed. I am sure you will hear from her when she reads your post. Meantime, unless you are suffering further symptoms which need urgent medical attention, try to remain calm and focused. Again, you have done extremely well to have managed to study such a complex course and I really wish you all success in completing it. Keep us updated on your progress. Kind Regards Anya

Hi Babs, Try to focus on the positives and in getting yourself in peak shape. My sah, like yours, was diagnosed as cause unknow, at Southampton. My spell in hospital was like being on a conveyor belt…told I’d survived, now go home and recuperate! The consultant told me I could pursue anything with no ill effect & I took that advice to heart! Well its been four years and I have come a long way…still plagued with the headaches (weather influenced) and tiredness if I’ve overdone things, but emotionally I can take on the world again!!!I really wish I’d remembered to keep a diary of my progress - think it will help you if you did! Remember to be kind and patient with yourself…if you’ve good friends keep active in meeting up, etc, any lifelines are good. I know it’s a massive dent to confidence and stamina, but if it were not for my friends, I think I would have gone mad a long time ago!!! You have to strike a balance somehow and try hard not to overdo things, rest when necessary (which will be masses in the beginning) and try to keep upbeat. I hope your gp is supportive. You will have good days and bad, where you wobble all over the place, try not to put yourself in stressful situations (impossible I know with four kids), find a place to be quiet!! Stay away from shops, which I expect you’re doing & order the lot online!!! It is a salutary reminder of how fragile we are, but try not to dwell on your lucky escape!! Best Wishes… Anya

Hi Zola, Sorry I missed the clue about your memory, just goes to show mines shot too! Don't beat yourself up about it....more stress less memory. I do carry around a dictaphone when out walking the dog, so as when I get a flash of inspiration I record it!! I have to keep a journal of my inner thoughts for my course that I'm doing. I recognise my organisational skills are shot along with memory; its a b****r!! I keep three favourite passwords for different accounts which I can cope with. I know some of my memory problems are psychological...not trusting my memory causes psychological blocks to my memory, whereas if I believe my memory to be good...hey presto, it behaves a little better. But if I'm stressed everything goes out the window!! I find reading excellent for improving it, and doing this course has sharpened my focus and memory. I haven't bothered to tell the tutor and others I have a problem, as I'm sure mine is affected by confidence. It's brightening up outside so I'm off to walk the dog! Hope you have a good w/e! Anya

Hi Mutti, I think I know what you mean, although haven't had one for a while now, but mine used to happen when I was thinking of a memory and once underway I couldn't nip it in the bud with distractions. In the early days it felt like a deja vue experience where I switched on a different synaptic connection which made me feel awful - as you describe, a micro seizure going on in the brain, but it didn't have a physical effect just a deep feeling of foreboding that I just needed to ride out. My neurologist didn't rate it as a fit, but that is how I imagine one to feel. In the last few months I have been on permanent medication for headaches & this has helped keep them at bay, then again it could be just the brain healing! There was no connection with tiredness/stress that I can recall; I wish I'd kept a record. Perhaps you could do this and see if there's a pattern; but hopefully for you it will be a temporary symptom. Best Wishes Anya

Hi there! So glad you posted....its always fascinating to learn how sufferers of sah fair years down the line! I am sorry to hear you've only recently noticed effects on sensitivities & techno difficulties, even though you haven't been affected physically, nor very much your memory...it is quite amazing! With regard to dreams, the quality of mine is affected by what I am studying/reading sometimes, also governed by how much good sleep I manage. Strangely, my dreaming has picked up since my course started. I can only put this down to the course strengthening my powers of concentration and focus, which rubs off on my dreams! Please keep us up-to-date on your progress & good luck with the scans! Best Wishes Anya!!