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Hello.... Neil - improving.


neil_f
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Hello everyone,
 
I have been a member for 3months but not felt up to posting, until my head became clearer quite recently.  I’m 47 and (was) very active, enjoying a number of extreme sports.  I regularly pushed myself to the limits and suffered occasional migraines due to dehydration.  I’m a driven person in all areas and my wife thinks the bleed was as a result of exhaustion.
 
The SAH occurred after a very active weekend and I assumed it was a severe migraine and a trapped nerve.  It felt like I had been hit on the back of the neck with a hammer.  I fought off the tunnel vision and stupidly climbed up off my knees and clambered up to bed.  My daughter had her last A-level exam the following morning and I tried my best not to disturb her.  I spent the night in agony with some vomiting and high temperature and in the morning my wife rang the GP, who promptly called an ambulance.
 
The A&E CT scan showed I had a significant bleed and they took me to a HDU at another hospital.  I was ultra-photophobic, couldn’t cope with any noise and in constant pain for 3 weeks in hospital.  At times communication was difficult because of the pain but I was aware of everything happening to me.  I had 2 angiograms, 4 CT scans, 2 MRI scans and a lumbar puncture but no cause was found.
 
When I first came home from hospital I had double vision, a couple of infections and had lost 8Kg in weight.  I slept for almost a week before trying to get up and about.  I couldn’t walk very well and could just manage 20ft to the end of my road and back.  I slept after almost every meal and regularly left the meal table to go and collapse on the couch.  Conversation was difficult, so it was hard to have visitors and I couldn’t cope with television or radio.
 
A couple of weeks after being discharged I had a massive migraine and ended up back in A&E.  This was probably the scariest experience because, although no one said it, we all thought it was another bleed and understood what that might mean.  The migraine lasted 10 hours but there was no bleed and the lumbar puncture result was clear.
 
It was difficult to speak with the doctors in hospital and I was really looking forward to meeting my neurosurgeon at the 2 month review.  The meeting turned out to be a disappointing experience and I was taken aback when he told me he didn’t know the cause of the SAH or if it might happen again.  He showed me images of my brain and pointed out the blood and told me not to do anything active for at least 6 months.
 
This was the only information that I had received since having the SAH and I was shocked.  I thought I was on the mend and would be up to full strength within a matter of weeks.  I now know this was unrealistic but had no other information to base my expectations upon.  This forum has been really helpful and I’m super grateful to those who have described similar experiences and coping mechanisms.
 
I have tried to take it easy since the meeting and have been monitoring my physical activity, which has helped me to understand my limits.  After 4 months I was walking up to 5 miles a day, except when I needed to rest.  I now rarely sleep during the day unless I am recovering from overdoing it.
 
The neuro psychologist was really good to talk with and helped my anxiety considerably.  The cognitive tests gave me headaches, so I had to have breaks and reduce the length of the meetings.  The results showed no indication of significant damage but there were issues with communication between different areas of the brain.  Hopefully this will improve with time.
 
Short term memory, loud noises, music and background noise are a problem for me and I struggle to concentrate for long.  If I try too hard then I get a pain behind my left eye which develops into a bad headache.  I still get headaches most days but some days aren’t too bad at all.  The cotton wool type foggy sensation in my head has improved a lot in the last month and the world seems to be in sharper focus now. 
 
I also started dreaming again for the first time since the SAH.  I used to wake up very abruptly, not knowing what time of day it was or where I was.  Unfortunately the dreams became so vivid that they woke me and I wasn’t sleeping much.   It was really bad for a couple of weeks but things seem to be settling down now.
 
At the moment I am still suffering with fatigue and it seems that whilst I have taken a step forward with my cognitive ability, my fatigue level and physical stamina have taken 2 steps back.  I guess there is a price to pay for being clearer headed and hope this will improve soon.
 
I’m a self employed engineering consultant and my main clients are based in the Middle East.  Working on-site and travelling can often be stressful so I’m taking a forced break from work.  Having no income is a real worry but there is little I can do about it just yet. 
 
Christmas Eve marked 6 months from the SAH and I am still anxious and very concerned that I might not be able to work again or get back to doing the things I love.  I’m a lot more hesitant and less confident than I used to be and sometimes it’s hard to stop thinking about what has happened to me and how different things are now. I hate not having any energy or stamina and really miss my sports and being out in the mountains, rivers and seas with my friends. 
 
It hasn’t been easy for my wife and children and it seems so unfair to them.  We had so many plans for this summer, before my eldest daughter left for University this year.  I’m trying to focus on how much I have improved but to be honest I just want my life back.  I’m very fortunate to have a loving and understanding family, an awesome dog and many good friends.  I’m determined and confident I will get there. 
 
Will let you know how I get on…..
 
Wishing you a happy and healthy New Year,
 
Neil

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Hi Neil,

 

A very warm welcome to BTG.

 

I'm so sorry you had the misfortune to suffer a sah and all that goes with them. It always saddens me when these strike and people's lives are changed in an instant.  On reading your story, I do think however, that you have made remarkable progress in the six months since it happened - recovery can be such a slow process, but it will continue for you as the weeks and months go by.

 

I presume you were at the Royal Hallamshire with being from Sheffield.  I live in the Hope Valley, so that's where I went following my sah 7 years ago (aged 46). In fact I'm still under their care and really can't fault the team there. 

 

It'll be good to hear how you get on - your positive attitude will definitely help - I wish you all the best,

 

Sarah

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Hello Neil,

 

I know how you feel as I have been there also, I awoke after being in cuckoo land for approx. 1 year.

 

I was told by my Surgeon "No Stress whatsoever"  so I try and sing or smile anything that keeps me away from stress.

 

I am glad to be here and to say to you " life gets better but it is a long haul"

 

I still have trouble walking,  lower back pains aghh !! 

 

This site helped my Daughter and myself, I wish you all the best in your recovery. 

 

Good luck and well done to Daughter also.

 

Winb143 xx This is a good place to come when down.

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Hi Neil

 

Warm welcome to the site, so glad that you found us, and glad you have posted.

 

It all takes time to slot into place so to speak, I've noticed through this page and my own experiences that It takes a long time not like a broken bone the brain is so complex, but It does happen you find that if there's something you cant do then you find another way of doing it..

 

Confidence and determinations are great tools good for you onward and forward...

 

take care..

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HI Neil,

 

So sorry for what has happened to you, we all know what you are going through,

 

I think you are doing remarkably well for six months down the line since your SAH,

 

It is such a traumatic thing to go through, our brains are injured and this takes time

to heal, speaking of my own experience, I`m nearly 19 months into my recovery and

things do get better.

 

Give yourself a pat on the back, you are doing well, it might not feel like it, but you are. 

You will regain your confidence as time goes on, with the positive attitude you`ve got

you will get there, it`s just that it takes time,

 

It sounds like you have a lovely wife and family giving you a lot of support, they just want

you well again, listen to your body and your brain, these are the things that will let you know

if you try to rush your recovery.

 

I found plenty of rest and drinking lots of water helped with the headaches, 19 months on and 

I`m still drinking lots of water, it worked for me.

 

Anyway I wish you and your family well, keep posting, we are all here to help.

 

Love

Michelle

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Hi Neil

 

Good to hear your story, so glad you joined BTG and am sure it will help in your recovery.

 

Your bleed sounds very similar to mine except I had hydrocephalus and an EVD. I can read so many similarities in our recoveries from your intro. I too was fairly fit, in fact mine happened while running, and I have got back to the physical activity. I am 11 months post bleed and never imagined that I would feel like I do so long after the event.

 

Overall I am well but still get head and neck aches and find my concentration is poor. I too find it hard not to think about what happened, I wonder if that will ever stop. I used to say I want my life back but now feel that this is my life and I am learning to accept it. Normal is now the new normal.

 

You sound like you are doing well. Take things slowly and as everyone else says drink water and plenty of it! Look forward to hearing more from you.

 

Clare xx

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Welcome Neil, sounds like you have had a tough time but that you are making a good recovery. I struggled in the early months with my confidence and sometimes felt like I was on an emotional roller coaster. I too doubted I would get back to work, but did return after six months with a months phased return, so it is early days but I am sure you will get back to work at some stage.

 

I guess your health and recovery have to be the most important thing. I wish you well for the future and look forward to hearing how your recovery goes.

Take Care

Sharon

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Hi Neil,

A warm welcome to the BTG family.

Your positive attitude is amazing, very refreshing to read. You are doing so well with your recovery, be proud of how far you have come.

Perhaps read 'A letter From Your Brain' under inspiration on the Home Page. It's a fantastic piece of writing.

It's over 5 years since my SAH, it's been a very long, and at times very lonely, road to recovery. I had awful head aches and temple pressure, visual and balance issues. They eased off after a couple of years but I still have them now and again, mainly when I've done too much.

It took me over a year to return to work, and it floored me. I never gave up though and went for a complete career change (and studies) nearly two years ago. Still can't believe I did that! It was the best thing I ever did.

Yes, I still have short term memory issues. Yes, I still can't multi task and I still can't cope with noise/radio/tv, brain just doesn't filter things the same way.

Oh and I stopped dreaming too for about a year, but oh boy once I was dreaming again it was awful for a while! I could have written horror books!

Yes, life has changed, however I prefer the 'new' me, I'm much happier. I don't waste time worrying about things that I can't change.

Sadly, I've lost friends who I thought would stand by me, but I've made many new friends.

Fatigue issues have stayed with me, but I've learnt to adapt and pace, and I have acceptance, well, most of the time! I still have a paddy now and again!

Have patience and understanding with yourself. Your family and friends strength will become your strength.

Remember not to compare yourself to how you were before your SAH, but how far you've come since.

Keep up with the fitness, I find it very important to match my mental and physical states.

I love to walk, and have pushed myself to continue to do so, even if I do look drunk because my balance can get so bad!

I've managed just over 7 miles and want and will do more.

I wish you well in your recovery,

Take care,

SarahLou Xx

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Hi Neil,

I was 47 when I had mine. No known cause for the bleed. Thee angiograms, MRIs, CTs, etc... I am 2-1/2 yrs and it's been a long haul. It took me at least 4 months just to walk one mile so congrats on the five miles. I was high energy as well and I do work and back at work but I do suffer from fatigue and when I've done too much or not gotten enough sleep (which is typical) I tend to feel heavy headed and dizzy. I hate it. Wet rainy days just make me miserable.

I remember when I was at the six month mark and I went to see my surgeon and he said it would take 12-18 months to feel better. He was not kidding. Still healing and still looking forward to my five year mark. It's life changing and adapting. My family had to adjust but that is what you do, adjust.

You will have good days and cherish them and then there will be days that are not so good and the pattern goes on. Good and blah.

You have had a life changing event and you are not the same and it takes time to accept. Believe me I know. I am still trying to do what I used to do and I can but not like I did.

Chin up an forward moving!

iola

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Hi Neil,

 

Well done - you won your first and biggest battle by surviving!

 

Your next quest is to adapt to your changed circumstances. Over time you will recover some functions to varying degrees but you will need to change some things in order to cope.

 

For instance, you are self employed - can you adjust your working pattern to suit yourself more.  Can you travel less? Can you Skype more? Can you delegate?  Can you take on less?  Money is nice, but it isn't everything. The last thing you want to do is to try to do too much too soon or you will set yourself back.  If you always do what you always do you will always get what you always got! 

 

So change.  Take stock and re-evaluate.  This is a golden opportunity for you to radically change life for the better. Value your family, value yourself.  They are better with you in it, you are better with them in it.

 

Yes, you want your life back but we all have to change, for instance as we get older we slow down and adapt. Change has been brought on you rather abruptly, but it does give you the chance to change things.  

 

Change in life is inevitable.  Embrace it and move forwards or look back and fall flat!  I had a very responsible job that involved lots of budgets, staff and travel, meetings, risk assessments, consultancy and the like.

 

I adjusted, and when I did I wondered why I hadn't done it before.  It was because I didn't make the time to do it and believed I was indestructible.  How wrong could I have been?

 

I didn't look for the change. It found me and made me pay for not paying heed to the signals, increasing workload, increasing age, increasing responsibility, increasing travel, increasing time away from home and the rest!

 

Think about it Neil, think about what is truly important in life, we're only here once and you have been given a second opportunity. Take it.  Life is not a rehearsal.

 

I am happier now than I have ever been - I don't have as much money - or pressure, or commuting and everything else.  The quality of my life is much better.  I'm not saying give up work altogether - just break it down into more manageable chunks!

 

Best wishes,

 

Macca

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Hello Neil,

 

Thanks for deciding to share your SAH experience on BTG.

So glad that you have found the site early and already used it for support.

 

You have had great advice since you posted - you say you led a busy, pressured life-please take heed of the comments to be patient with your recovery, and be realistic when your brain says no. So, so difficult to do, but so, so important in your recovery.

 

You mention that you value the support from your family and friends-and dog. While you are trying so hard to get some normality back into your life, please remember that your wife and children are also trying to cope. Not only with seeing you twice in hospital in as many weeks, but also trying to cope with a husband and dad who needs time to deal with life post SAH. Please talk with them a lot, and try and share with them what you are experiencing. Let them know your fears and frustrations. Remember and ask them how they are too.

 

Time does heal. You have mentioned so many reasons why you want to be back to your normal self, but do remember that you will give yourself a better chance if you are patient now.

 

Wishing you and your family every strength to cope with the challenges of the months ahead.

 

 

Subs

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Hello,

 

Thank you so much for the incredibly friendly and warm welcome, I'm touched and grateful.

It’s great to speak with people who understand.  I look fit and healthy and appear to be absolutely fine to most people so, quite understandably, most people don’t see there is any problem at all.   

I was treated in the Royal Hallamshire too Sarah and agree the care received was very good.  My friend is the senior training staff nurse on the neuro-HDU ward, so I was lucky to see a friendly face when I was in a bad way.

 

I greatly appreciate all your support and advice and for being kind enough to share your experiences.  It has really helped to hear of similar events and feelings and I don’t have the words to express my appreciation.  It also helps give me some perspective, however, I do feel sad (and a little guilty) that many people have had a more difficult time and are still living with issues, that are worse than mine.

 

After my first hang-over free New Year’s Day in over 30 years, I made a resolution to be more patient and to get back on track with my plan for physical recovery.

 

Thanks once again,

 

Neil

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Neil,

 

When I first had my SAH I thought my time was up lol, until I found this site.  There is a life after what we have been through.

 

So head up and shoulders back we will get there,  be it longer than we expected but we will make it and when down Sing !!

Sounds daft but you have to keep a positive attitude for the off days.

 

I was told I wouldn't walk again, but okay a small distance before back aches and on good days 100 yards before I feel rough with back pain but we will make it and on a Very Very good day approx. 150 yards.

 

So if you are told you wont do it just believe in you xx and prove the others wrong xx

 

All the Best

 

Win xx

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Hi Win,

I’m hugely impressed by how well you are coping and your ability to keep a positive attitude.  I wish you all the best with your recovery and hope to have a fraction of your courage and strength.

 

No one has said that I won’t be able to do my outdoor pursuits but they really don’t want me to push it just yet.  It doesn’t help when they don’t understand why anyone would do what I do in the first place.  If I start singing as well they will really start to worry!

 

Have a great evening,

Neil

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Neil,

 

Do not be impressed as Tuesday was a bad day for me, I had the tears flowing and felt really down,  but nothing a hug from my Daughter  couldn't cure.  

 

So okay we'll not sing but if one day you look in the Green room and see a song typed there it is either from Carolyn or myself.

Beware of Carolyn she was a Hippie !! ha  xx

 

Good luck to you and Family xx

 

Win xx 

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Hi Neil
I haven't welcomed you to the group yet so sending a big hello and glad to hear things are levelling for you a bit.

Making adjustments post SAH is something that comes to all of us to varying degrees, understanding that life did change for us in the moment of our bleed and we cannot rewind and have things just as they were. So keep the positive outlook, keep looking forward and in time you will find new things that excite and stimulate your senses, maybe not as extreme actions and adventures as before but something new, just different.

You mention "Short term memory, loud noises, music and background noise are a problem for me and I struggle to concentrate for long. " again this is a common challenge , I couldn't go anywhere loud and busy post SAH for quite a while and still know this will use my brain energy very quickly.

 

Ear plugs and sunglasses helped with that but it really knocked my confidence having been so used to taking all kinds of things in my stride but it will improve, build it up slow and steady, it's not a 'push through' kind of event, you have to regain that mental stamina capacity by retraining your brain to things you want to do with consideration and kindness for your injury.

Working abroad sounds tricky right now but I would hope you could find ways to use your knowledge and experience differently until you feel ready to maybe try it out again
Anyhow, keep going chap. Onwards.

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Thanks for the welcome, the sound advice and a big hello to you too. Sorry for not responding sooner, I have been steadily working my way through the old threads in the NASAH forum.  There are a lot of really helpful posts in there and I have been completely lost in it for several days.

 

Since the New Year I have been out walking every day.  Some days I have needed to push myself to do it and have accepted that I need to go slower and often sleep afterward.  It’s steadily getting easier and I’m enjoying being out in the woods again.  Physical activity helps me relax and think straight, so I’m glad to be getting out more.

 

On Sunday I went kayaking with my local club and had a great time.  I was careful not to overdo it, slept afterwards and was on a gentle endorphin high when I woke.  It felt fantastic to be back on the river again and for the best part of 3 hours I almost forgot about my SAH.

 

My plan is to take it steady, keep up with the walking and to occasionally try the more demanding stuff when I feel up to it.  I’m not sure if I will ever be able to participate at the same level as before but it’s still early days and don’t want to give up on it just yet.  I’m keen to start paragliding again but don’t trust my decision making and risk assessment abilities at the moment. 

 

Work is going to be a problem for a while yet and the stress of overseas travel can wait for a good while longer.  I’m trying to keep a UK project moving, whilst being clueless about timescales, which is difficult, however, I’m learning to be more patient with myself and trying to stay realistic about my capabilities.

 

I’m also a big fan of ear plugs.  I took them when I went to a pub for the first time last week but didn’t need them.  We found a quiet table and had a great evening.  There is no way I could have done this, without leaving after just a short while, as recently as only last month.  Best of all, despite having more to drink than I intended, didn’t suffer too badly the next day.

 

All the best,

Neil

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  • 5 months later...

Well it’s been a year since my head blew a fuse.  It’s been the most difficult year of my life but I have made a lot of progress.  I struggle with fatigue and don’t have the strength and stamina I used to but I’m able to do most things and am very much enjoying life again.  Every now and then I check on the forum and it is really helpful to read similar experiences.  Thank you to anyone who takes the time to offer support and advice on here.

 

My biggest improvements started around eight months after the SAH.  My daily headaches stopped, my head became clearer and my mental stamina improved significantly.  I could listen to music again without it sounding wrong (I think my brain processed high and low frequency sounds at different rates) and I no longer needed to use ear plugs and sunglasses.

 

I started to enjoy reading books again and discovered I could beat my previous high scores on cognitive tests without even trying.  The regular pain that developed behind my left eye, which turned into my problem headaches, started to occur less and less frequently, to the point where it only happens if I don’t get enough sleep or if I’m suffering from stress.

 

I started to kayak again and was surprised how well I coped with serious white water and rescue type situations.  I always feel a bit rough for a day or so afterward, so have to plan my days around my activities.  I have dropped out at the last minute on a couple of sea kayak trips because it just didn’t feel right.  It might be anxiety but it may just be a healthy respect for the sea and not wanting to cause a problem for me or my friends.

 

I hope to get out on the sea later this summer and maybe a longer trip later in the year.  I cycle occasionally and find I am a lot slower than I used to be and need to take rests but I’m working on it and enjoying what I can do.

 

The biggest surprise has been my ability to fly my paraglider.  It doesn’t seem that long ago when I thought I would never be able to do my main sport ever again.  I tried a short flight earlier in the year and 20 minutes in the air put me in bed for a week.  Four months later and I flew a 5 ½ hour flight all around the peak district.  I had a special moment when I flew out to Sheffield and pulled a couple of victory loops over the Royal Hallamshire hospital.  I struggle if I try to fly on two consecutive days and need to have a rest day afterward but for the first time since the SAH I feel truly lucky and recognise things could be a lot worse.

 

This weekend I went camping with my eldest daughter and we went kayaking together.  It’s been a difficult time for my family and I think we all appreciate each other a little more.  My youngest is in the middle of her exams and we are looking forward to a family holiday later this summer.

 

I’m doing some work but still very much taking it easy.  It continues to be a worry but I don’t want to make any long term career decisions until I have a better understanding of what I will be capable of and if my stamina/fatigue will improve.  I’m attempting some fairly ambitious DIY projects and using this as a measure for what I can do and what I can cope with.  I seem to be ok as long as I don’t attempt too much, try to stick to timescales when I’m struggling with fatigue or allow myself to get stressed by my current limitations.

 

I still enjoy walking but weirdly found my stamina level has dropped significantly in the last couple of months.  The same thing happened at around the six month point, when I went through a significant cognitive improvement.  It improved after a month or so and I hope to experience the same recovery of my stamina soon.  It may be that I’m just doing more of everything else but fatigue seems to be my biggest on-going issue for now.

 

Sorry if this is all a bit lengthy.  Whilst our recovery stories are all different, I thought it may give hope to someone in a similar situation to me last year.  Things are still a struggle but I’m able to do so much more than just a few months ago.  I get frustrated from time to time and get taken by surprise with the odd day where I struggle to be able to think straight, remember a minor recent event or achieve anything useful but on the whole I’m surprising myself with how well I’m doing.  My anxiety levels are now much lower, I feel more confident, much more capable and a bit more like my old self again.

 

Wishing you all the best,

 

Neil

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Congratulations on reaching the 1 year mark and further congratulations for all you have achieved during that year!

 

Your recovery (excluding the desire to do extreme sports!) is pretty typical in regards to the fact that we are not able to do things quite the same as we did before the sah, but I can see from your determination that you will not sit back and let this prevent you from doing the things you enjoy.  

 

Next time you fly over the Peak District, I'll give you a wave!

 

Take care,

Sarah

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Congratulations Neil :)

 

Thank you so much for sharing, as it will most certainly give so much hope to others.

Well done on all your achievements this past year. Fabulous news you are back paragliding !

 

Its great to read your anxiety levels are now much lower, you feel more confident, much more capable and a bit more like your old self again.

 

Wishing you well and look forward to your next update.

Take care

Tina xx

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I just edited my previous post because I had mixed up a few of the paragraphs when cutting and pasting.  Sorry if it read a bit strangely in places, my attention to detail must have been a bit off last night.  :-)

 

Thanks for the good wishes. 

 

Sarah, I already do wave every time I fly over the Hope Valley.

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That's okay Neil I lost a post and retyped it so shhh Mods I need help lol

 

You are doing really well Neil and All what Tina put I agree with.

 

Bet you never thought you'd be back on your feet at one time and I am so pleased for you xx

 

Take care and be Happy and never give up.  Congratulations on your progress xx (puts me to shame) !! lol

 

Best wishes to you

 

Win xx

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You know what Neil I think we have all flown over Hope Valley every day since haven't we :)

well done for the baby and big steps you have made and keep on keeping on. Go steady with things but still pushing the envelope nonetheless.

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