The Eyes Have It

Hi all,

I've just read the header of my blog...the bit where it says about my wonderful family and my ordinary life. I do, indeed, have a wonderful family but an ordinary life? I don't think anyone ever has an ordinary life do they? My life is far from ordinary so maybe I need to reword my header.

It's been another up and down week for me. More ups than downs which is great. Unfortunately there was some very sad news to take on board. The kind of news that makes you want to live your life to the very limit and get as many experiences as you can. The kind of news that makes you want to love and laugh and have fun all the time. Life is precious and should never be taken for granted. My love goes to those affected.

Also, last Tuesday we received a call from my poorly father in law's GP to say that we had to get him to the local A&E department as soon as we could following results of his delayed blood test. Hubby and I picked him up and got him to hospital where he was admitted and where he remains for now. He has been treated for severe dehydration and a chest infection at the very least and has been responding well to treatment. His memory has improved greatly so there are no more dementia worries for now. His mobility remains the main concern which is hardly surprising for an 85 year old man who has lost a stone since Christmas and who is convinced that he doesn't need to eat because he's not hungry! We await further news and he is getting frequent visits from various sons on a daily basis. He's actually a very lucky man to have such strong support from his family. We have been told many times over the last few months that lots of elderly people get no visits from anyone from one week to another. Let's hope that he makes a good recovery and isn't left with too many difficulties to face.

Now for the totally amazing good news. My middle daughter has had both of her scheduled eye surgeries. The cataracts have been removed and been replaced with lenses which means that she can actually see better now than she has ever done in her whole life. How incredible is that?! At the moment she doesn't need glasses for distance viewing and we picked up a £4.50 pair of reading glasses from the local newsagent at the hospital and she can see with them really well.
One surgery was completed on Friday and the other one took place on Monday. Each operation took roughly 20 minutes, although she had to have a general anaesthetic on each occasion as the cataracts themselves were complicated. Apparently, cataract surgery these days is done under a local anaesthetic which sounds horrible to me!
The surgery took place at Addenbrookes Hospital which has a specialist diagnostic clinic for Stickler Syndrome. The pioneering team who specialise in this condition is headed up by Martin Snead who is an opthalmic surgeon extraordinaire and who appears to be the king of all things Stickler as far as the nurses who work around him are concerned.

                                                        Pre op glamour

After op 1, almost immediately my daughter was aware of the brightness of everything. After years of things appearing stained with smoke and tinted brown she could see white walls. She could see patterns on the lampshade in the room that we were staying in and the swirls in the Artex on the ceiling. Most moving was the fact that she could see her 12 week old son's face clearly for the first time and she she could see him smiling from a long way away!

After op 2, she was able to see car number plates which she has never been able to see before. We went to Starbucks for a coffee on the morning after the second surgery and she stood and read the menu board at a distance without any glasses at all. She was able to read the very bottom line with no problem....the middle menu and the very bottom line...

The two post op checks were successful and we finally set off for home on Tuesday morning. On the journey home my daughter picked a hair off of my jumper that was annoying her. She did it without even thinking. She would have been completely unaware of that rogue hair just a day before.
So now she is thinking about learning to drive...something that she was always told would be highly unlikely and something that, if it was to happen, would transform her life and the lives of her family.

While I am completely overwhelmed with the enormity of the surgeries outcomes, my daughter is much more pragmatic and is taking it all in her stride, I think, as the days go by, as she starts to retrace the steps that she has been taking over the last year when her sight has been so very poor, she will be more and more amazed at the difference this is going to make to her. She is, by no means, taking it for granted but she is taking it a day at a time.

While we were staying at the hospital there were daily telephone conversations between my daughter and the three children that she had to leave at home with their Daddy. Her eldest daughter, who is 5 going on 15, asked how Mummy's eyes were and Mummy said 'I'll be able to read you a bedtime story now that my eyes are better'. The reply 'Really Mummy? Hooray!!' moved me to tears.

To be the mother of any child who has disabilities or long term medical conditions can be fraught with worry and fear. The responsibility and guilt and anguish and  stress that you feel cannot and should not be underestimated. In my experience at least, things often don't go as planned or as expected and there can be disappointment and tears along the way so I am very, very happy to shout about our experience in this  instance from the rooftops.

As a consequence of our experience,and due to lack of contact with or from the Stickler Syndrome Support Group regarding our fundraising for them as mentioned in my last update, I have changed my mind about which charity I am going to fundraise for this year, The Stickler Syndrome Diagnostic Clinc, based at Addenbrookes Hospital in Cambridge, is doing truly wonderful work for families and individuals affected by this genetic condition. It is the only such clinic in the UK. When my eldest daughter was born and we had the condition diagnosed, there was no information available. I had to explain Stickler Syndrome to almost every medical and nursing person that I met. Nobody had heard of it. We were given the gloomiest of predictions for my daughter(s) , none of which has come to fruition and I am eternally grateful for that every single day. Knowing that there is a specialist centre for families like mine is a wonderful thing.

I have been in touch with Martin Snead about fundraising and he is delighted that we hope to raise money for the clinic. Following our experiences there in the last week i hope that anyone who reads this will be happy for me to change my choice of 'charity' for want of a better word. Any funds and, indeed, any donations will be going straight to Martin Snead and should be made payable to 'University of Cambridge-Retinal Research Account'. This should ensure that the funds go directly to the clinic and for further research into Stickler Syndrome and not be swallowed up into the black hole that is Addenbrookes which, like all other hospitals, is struggling from underfunding etc.

Finally, a word  about my wonderful grandchildren who have been absolutely brilliant by all accounts while their Mummy has been away from them. Their Daddy has been a star and their routines have gone ahead as usual. The three little people who stayed at home with Daddy have been helpful and well behaved. I love them so very much, The fourth little person who stayed with Mummy and I while we were in Cambridge and who charmed everyone he met and who was so, so good deserves a special mention in dispatches. Waking up to this little face every day has been a joy...

It's been a full on week and it's not over yet. Tomorrow sees me going to a funeral and then working a night duty. Then it's the weekend and more work. Life goes on.

Thanks for reading this and I make no apologies for going on a bit!!

xxxxx

Family, Food and Fundraising!

Hi all and welcome to another update. I'm going to launch straight into it this time so here goes...

Firstly, it has been a harsh week on the emotional front. I have received several pieces of distressing news. My father in law, who has been out of sorts for a week or so, has been prescribed medication for a chest infection. Good news is that he is still at home and on the mends it seems. He is still adamant that he hasn't got - and never has had - an infection but that's just him! We were worried about his lethargy and confusion but he seems to be back on some kind of even keel. I am going to see him tomorrow so I will be able to see for myself how he's doing.
Another piece of news was a diagnosis of a degenerative condition for an 18 year old young man that I know. The outcome of his illness means that he will eventually end up in a wheelchair and need full time care. For him and his family the news has come as a terrible shock. I haven't seen him since he found out what was wrong but I hear that his attitude is positive so I do hope that he continues to feel well and enjoy every day.
The saddest news that I have heard is of the death of an estranged member of my family. The word 'estranged' makes it sound like there was a big falling out but that isn't the case. 'Estranged' here just means that we lost touch and that I hadn't had any contact with him for probably about 10 years or so.
In my head I still think of him as a boy or a teenager struggling with the world and desperately trying to make sense of it all. All I really want to say is that I always felt that he was lost and I felt that I wanted to look after him. Hopefully he is at peace now and he's probably having a good old catch up with Dad.
Obviously, when anyone receives sad news about someone that they care about it stirs all sorts of memories and feelings around. Memories that you may not want to recall. Feelings of guilt. There are some people who don't want to be helped or can't accept it when it is offered. People who fight their demons in the best way that they can and who choose to do it alone. We will all have our own experiences. Suffice to say that I have had my own thoughts and feelings over the last few days and have worked through them in my own way.

Now, on to better stuff....

My daughter has had confirmation of new dates for her cancelled eye surgeries and I have managed to swap my shifts around at work and I have the time off that I need so that I can go with her. This is a great relief to me. The hospital have told us that my daughter is a priority as they are aware how bad her eyesight has become and also the fact that they have cancelled previous ops means that they are less likely to cancel again. Time will tell but so far, so good.

I have also been doing a bit of cooking and have experimented with a few dishes from The Hairy Bikers recipe books that I was given a few years ago. The recipes are easy to follow, the ingredients are simple and the end results have been positive. Take a look....

 Sticky ginger and soy chicken wings.....delicious!

Mince stew with dumplings....dumplings! Haven't made them in years and they were lush.

Old fashioned chicken stew....my favourite. Amazing flavour and leftovers for the freezer.

Rocky Road....indulgent, laden with calories but soooo yummy.

Cooking and baking is great and I love the recipes but I'm afraid I have no willpower when it comes to regulating my intake. If nice food is in the house I'm going to eat it which is why I often give some of my culinary offerings away....to save me from myself and in an effort to stop me from putting on even more weight than I already have done!

And on the subject of weight (and health), I have decided that February is the month that I make a concerted effort with exercise and food. I know that I'm not active enough and I know that I don't drink enough water or eat enough fruit and veg so next month will see me juicing and keep fitting and similar. I'm not yet signed up to any challenge unlike this time last year when I had the Silverstone half marathon on the horizon. I'm keeping my eye on challenges and hope to sign up for something soon but it needs to be right.

Finally, for now, I have decided to throw my considerable weight behind a cause that I know a lot about and which is close to my heart. I have blogged before about Stickler Syndrome and the fact that it affects members of my family. I rarely come across anyone who has ever heard of it, be that doctor, health visitor etc. There is a support group (SSSG) - Stickler Syndrome Support Group- that I have had a connection with over the years.
 I have decided that my mission for this year is to try to raise funds for the group so that it can continue to provide information of the condition to professionals and anyone who requires it. I also want to try to raise awareness of this condition which, I know through my own experiences, can disrupt lives and cause anxiety and stress to a lot of people.
Any fundraising that I do this year (except for the Poppy Picnic which raises money for Royal British Legion) will be done for SSSG. I've not thought it all through totally (well, there's no surprise there really, is there?!) but I'm already thinking wristbands, I'm thinking selling homemade jams and preserves. Proceeds from anything that I sell on eBay and so on can go to my 'Stickler' fund. I have already donated £10 which came from an eBay item so that's a great start.
This is just the beginning really. I feel like I can grab this and run with it - well, not really run due to the old knees! - but I feel that I can make a real difference and it's personal which makes it even more exciting.

That's it from me for now. I'll be back soon......!!

Everyone Needs A Helping Hand

www.stickler.org.uk

xxxxxx

Hospital Hiccups

Hi all,

It's been an interesting few days.

First, I must mention the terrible events that have taken place in France. I am not a political person and I don't like to make statements about events because I don't think I have enough knowledge to back up my gut feelings which is what I always go by.
The 'Charlie Hebdo' massacre was a tragedy and an outrage and, earlier this evening, I sat and watched live BBC coverage of two hostage situations being brought to an end. 12 innocent people slaughtered one day and 4 hostages killed today. Apparently, 2 of the murderers were brothers who were well known to authorities around the world. How on earth were they able to walk freely among the French people, get weapons and enter a building and shoot people? Reports say that they were both shot by police and they were shot down after they ran at the police shooting at random. I suppose, in their heads, they were making the ultimate sacrifice and dying as heroes. How very sad that my immediate reaction was that I was glad they had been killed. That feeling goes against everything I think I believe in but those two men murdered 12 innocent people in cold blood.

Anyway, moving on....over the last week or so plans have been afoot to get my daughter and her 10 week old son to Addenbrookes so that she could undergo 2 lots of eye surgery for complex cataracts caused by her genetic condition. One operation to take place on Thursday and the second op on the following Monday. Her cataracts are dense and complex and there is only one surgeon who has experience of them and who is able to do the surgery. He also operated on my other daughter fairly recently and we know he is the best in his field.
My daughter has 4 children aged 5 and under and the little one had to come with us because she is still feeding him. I had to go as someone had to look after the baby while my daughter was having the surgeries.
My son in law has had to take time off work to look after the 3 remaining little ones and I have had to alter my work shifts to enable me to accompany them. The little one have been prepped for Mummy being away for a few days so that she can make her eyes better.
We set off to Addenbrookes with a little trepidation as we had heard on the news that it was one of the hospitals that had announced a major incident due to overcrowding at A and E and basic bed blocking due to lack of social care packages that would enable many people to return to their own homes.
We got to the hospital with time to spare for the scheduled pre-op appointment where measurements were taken and so forth and when I spent some time sitting next to Warwick Davies and his family. He was asleep in the chair next to me and his family were taking photos of him and laughing!
All of the time we were at the clinic, my daughter was asked how far she had travelled and so forth and she said that she felt that they were trying to prepare her for a cancellation announcement but we left the clinic with eye drops and instructions about the procedure to take place the following morning.
These days, at this hospital at least, they don't admit you as a patient the day before surgery. You have to book into a local b&b the night before surgery, get to the hospital early the next morning, have the surgery and then go back to the b&b for another night, go back to the hospital for a check up the next morning and then, all being well, you can go home. I managed to secure some accommodation on the hospital campus at £50 which was pretty reasonable I thought. It was a bugger to find but, once located, it was spotlessly clean and, although basic,perfectly suitable for us.
We unpacked our 5 days worth of baggage - we had to have enough with us to cover for both lots of surgery so that's clothing and nappies etc for baby, clothing for daughter and for myself including my works uniform as I was having to drive back from Cambridge to Surrey to fulfill my work commitments! We also had to buy food and drink for the duration of our stay so planning was vital.
At 7.15pm my daughter received a voicemail message to say that her operation due 12 hours later had been cancelled. I was annoyed. My daughter was philosophical. She had felt all along that the op would not take place as planned.
We had a nice night actually once the dust had settled. I got to spend time with the baby and with my daughter and it was lovely. We went to bed and slept pretty well.

After repacking our bags, we set off back to the eye clinic to see what was going to happen about the cancelled surgery and what the prospects were for the surgery due on Monday.  A very apologetic secretary came to see us and said that the first surgery had been cancelled because out surgeon was needed to be on call and would be on call (I'm assuming due to the major incident status) for all of the weekend. This would mean that, come Monday, he would have been on call for 4 days in a row. How is that even legal?? The secretary said that she felt that he would, therefore, at some point, make the decision to cancel Monday's surgery too but she couldn't say for certain. We couldn't take the chance that Monday's surgery would take place. It would mean coming back up to the hospital on Sunday night again, staying in the rented accommodation, and so forth. The uncertainty was just too much. in our heads we had no choice. We were then offered dates towards the end of the month and we have no choice but to accept them and just hope that the same thing doesn't happen again. I have to try to reschedule my work shifts again, son in law will need more time off work, the little ones will be upset again because Mummy isn't there and my daughter will have to prepare herself again.

In all of this, it's my daughter who I feel for so much. Her sight is so limited now. She can't distinguish faces and can't really see her baby smile. She manages, somehow without ever complaining (at least, not to me!) about how difficult her situation is. She still walks the children to school and nursery but feels vulnerable and is scared for the children each time she does it. Nobody meeting her would know that her sight is so badly affected and that is testament to her and her attitude. She says that her condition is annoying but, ultimately, she can live with it. It isn't terminal. She can have surgery that will make her better. What an attitude!

Apologies for the ramble...I've got a bit carried away again. I would never slate the NHS. I think it's a fantastic institution and we are incredibly lucky as a country to have it. It has just been an incredibly frustrating few days,

Lastly, I must give my sister a quick mention. It's her birthday today. I won't say her age, suffice to say that she is younger than me! I hope she has had a fabulous day. She really deserves it. She works really hard and is a wonderful Mum and a brilliant Nanny. I love her very much.

Hope you all have a safe and happy weekend.


xxxxx

Sleep...zzzzzzzzzz. If only!

Good morning all.

I'm typing this at a ridiculous hour again. It's 4.37 am and I've been awake since 3. I decided that I might as well just get up and forget about trying to get to sleep.
I'm not sure what else I can try (except prescribed medication which I'd rather not have) . I have tried relaxation and breathing techniques. I have tried natural remedies including Kalms which don't appear to have any effect at all on me. I have taken Sominex 1 a night which help a bit but which give me very, very vivid dreams and I usually wake in fright or fear, covered in sweat at an ungodly hour so it would seem that Sominex is not for me either.
I am fond of a daytime snooze - usually in an effort to catch up on lost sleep- and I have stopped that as well in an effort to get a good nights rest but to no avail. I take regular exercise and get lots of fresh air. I don't eat a big meal before bed and  if I have a bath I make sure it's not too hot.
To be honest I'm at my wits end with it but I am trying not to let it take over my life! I have read many times that lack of sleep is incredibly bad for you and your health which is a bit of a worry.

I'm not sure where this all started. I don't recall having sleep issues in my younger years although once I had children I had to be vigilant to any nighttime noise and I think that may have been where it started. Those years passed and it was on to the teenage years of my offspring and the sleepless nights that come with that - where are they? what are they doing? are they OK? why aren't they answering their phones? etc etc. So maybe it has become ingrained in me and is a habit that is almost impossible to break.

I have had sleeping pills prescribed for me on a couple of occasions, usually when I have been suffering from acute anxiety. I think I was given 5 pills each time - allegedly enough to break the cycle of lack of sleep and not enough to make you become addicted!

I also wonder how much my age has to do with it. You know, the dreaded menopause and hormones all over the place. I have had dreadful night sweats over the past few years and am currently trying medication to ease them which is also supposed to make you sleepy?! Well, I'm not sleepy and I still wake up from time to time absolutely boiling hot so obviously either those pills aren't doing their job or the menopause isn't the problem. I know insomnia can some as part of the deal with the menopause but I don't know when lack of sleep becomes insomnia.

I got  an app for my iPhone the other day which monitors your sleep patterns while you are in bed and it's really interesting and very clever! It records what time you go to bed, when you are asleep and the level at which you are sleeping ( light sleep, deep sleep or awake) and at what time. It puts all of the information on a graph. It gives your overall sleep efficiency too and I'm looking forward to seeing the results over the coming weeks. After two days my sleep efficiency was 91% which is good but once today's figures are added that may be a different story.

What else has been going on? Well, I'm back to work later on today after a few weeks off. As I work in a school , today will be an inset day so I expect we will only be in for a few hours. It will be nice to see everyone again and see how their holidays were.
I have also spent the last couple of days trying to sort out the photos that are stored on my laptop. That has been a labour of love I can tell you.
I have got into the habit of uploading the photos from my iPhone to free up some memory and not actually organising the photos into folders and so on. So, many, many hours (days) later, I have got some order to my pics. All of the photos are in folders. All I have to do now is go through the folders to get rid of the rubbish shots. It is actually much easier to delete photos than it is to physically through a photo away. I am a terrible hoarder of photos and have a chest (and many, many photo albums) full of pics that I don't need and would be of no interest to anyone else. I just have to make myself sit down and go through them. But then I find photos that I haven't seen for years or find pics of Mum or Dad that set me off on another train of thought. I did start to go through the photos before we moved but it wasn't a very successful procedure to be honest.
What I did do was get a lot of my father in law's old projector slides put onto a disc and had a calendar made up for him for Christmas. He loved it! I am going to see him today and I am taking my laptop with me so that I can show him all 70 of the slides and see if it jogs his memory at all.

Here are a few of the pics I have been sorting out:

Well, it's now 5.24 am and sleep is still elusive. Unfortunately, it's too dark and too early to take the dog out for a walk. Maybe I'll have  another cup of tea and then go back to bed for an hour or maybe I'll make some cakes or something. One thing is for sure, if I go back to sleep I won't want to get up when the alarm goes off at 7.15 am.

I hope you all have a lovely day and any advice re the sleeping issue would be much appreciated!

xxxxx

Out With The Old. In With The New.

Happy New Year everyone!

Hi and welcome to 2015. I hope it brings you all you dreamed of and that we all stay happy and healthy.

We saw the New Year in by making our first visit to our local curry house with various 'kids' and their partners. They all returned to us after completing their post Christmas gallivanting and it was lovely to have them back with us again. As I type, they are all still sleeping soundly. It's 8 am so it's hardly a surprise. I, however, have been awake since 5 am again. The dishwasher is in full swing, the dog has been fed and is back on the sofa next to me stretched out as far as he can so that he has 3/4 of the sofa and I am perched on the remaining 1/4. The table is set for breakfast with matching crockery as well!
In the background the TV is reminding me of all of the famous faces that left us last year. Of all of them,Robin Williams is the death that still upsets me the most. 'Captain, my captain'. Goosebumps as I type that.

Anyway, our curry was lovely. I think everyone enjoyed it and it made a really nice change. There was a lot of food on our table but I like to think that we made a good go of demolishing it all. Then it was back up the hill to our lovely house where we made pina coladas and margaritas, played games and then had our own fireworks in the garden just before midnight - nothing spectacular but enough for us and lots of sparklers!  As our garden overlooks a valley of sorts we were able to see all of the surrounding fireworks from various local gardens and  there were even distant strains of 'Auld Land Syne' to be heard.
I retired to bed at about 1 am which makes my ridiculous 5 am wake up even more annoying because I know that I'll be knackered later!

As is usual for the start of a new year, it is a time to reflect on events of the previous year and I have to say that 2014 was a really, really good one for me. Highlights were:

Completing the Silverstone half marathon and raising a wonderful amount of money for White Lodge.

Going on a wonderful family holiday to Florida. It was everything we had hoped it would be and so much more.

Being able to be a part of the brilliant poppy installation at The Tower of London and planting the poppies with my sister and my niece.

Having a wonderful day at my Poppy Picnic at my beach hut which raised money for The British Legion. The weather was fantastic and friends and family supported my efforts and it was one of my favourite days of the year.

We celebrated our silver wedding anniversary and went to The Ivy, to Edinburgh and to Salcombe as part of it. We still have dinner at The Ritz to come when I get round to booking it. Something to look forward to!

The safe arrival of our 4th grandson at the end of October on the same day that we exchanged contracts on our house move.

Finally realising my dream of moving a week later (Nov 7th) to a house that I love and that feels like home already.

And the last bit of brilliant news was that hubby was offered a salaried job in December after more than a year of doing bits and pieces and feeling he was on the scrapheap. Roll on February, a company car and a happy hubby!

Add to this my own personal achievement of having CBT and finding it brilliant, believing in myself more and feeling more in control of myself and that is a snapshot of my 2014.

You see.....it was fabulous. I have a feeling that 2015 is going to be equally wonderful. None of us know what is around the corner and I'm sure that there will be trials to be faced as there always are but I am looking forward to positive things. I want to explore our new locality. I want to be part of the community. I want to make a difference to somebody somewhere. I want to take up yoga again and stick at it. I want to get back to cooking and baking. I want to go to places that I haven't been before but mainly I want to be healthy and well and I want my family and friends to have the same.

Thank you to anyone who has read any of my ramblings on this blog. While I know that it's just about me and my life and that it's really like a diary for me, I do really appreciate the fact that anyone at all would read any of it.

 Happy New Year from Harvey!

I wish all of you a truly wonderful 2015.

xxxxx