Hospital and Family Memories

Last week I left you as I tackled my roller coaster life. Well, I’ve been so busy since then, but things seems to be getting better. With school visits, shopping and a day out at an inflatable theme park spirits have been lifted a little. Even though I’m a little exhausted too.

Hospital Memories

This week I will be in hospital for the first two days, so I may not be around much. Or I might be if I can get on the internet while in the hospital and I’m bored enough. The hospital is like my second home now, I don’t even have to give my name when I walk into the reception of my usual ward.

It takes me back to just a few years ago when it was the same for Star at the Children’s Hospital. It was Christmas 2013 when she was first fitted with a halo, how appropriate. She earned her nickname Star for all that she went through, she truly shone despite the pain and sadness. Now she has to see her consultant just once a year, but she still has to see a nurse every three months and has another appointment with the very busy geneticist next year. The good news is that she seems to be doing just fine, and she copes so well with her pain. Yes, she is a Star!

Family Memories

This weekend Graham’s brother came up to visit from his home in Dorset. He brought his two young children with him. We had Graham’s Mum come to visit too and they all stayed for the day. It was so lovely to have family around, the kids ran riot and made an awful mess, but I loved it. I do think that my kids are way to quiet and tidy sometimes. When my older two were little the house was never tidy, but they didn’t have laptops or phones to play on. They did have the Nintendo, but still liked to play and make mess. My kids, even when not on devices, will do quiet stuff like draw or read. The Little Man loves his Lego, but he always puts it away after playing. 

Having family around brought back memories for both me and Graham. When we were young the house was often full of cousins and aunts and uncles. We used to have visitors all the time, or we’d be the ones visiting. My mum had five sisters and two brothers, so there were many, many cousins. Usually, me and my two cousins of a similar age would be on tea duty and be sent to the kitchen on a regular basis to make pots of tea for everyone. 

These days it seems a rare occasion when we have lots of family visiting, or we visit family. Most of my family dissipated when my Nan passed away, but one of the main issues is the age differences in my own family. Two of my  brothers are a lot older than me and their children are even older than my eldest children. So the only cousins my youngest kids have are Graham’s brother’s and, as I said before, they live in Dorset. 

Families tend to be smaller these days and families don’t always live close together any more. I know that when I was little, four of my aunties and my Nan all lived in walking distance from us. 

I do miss those family days though. Even though it meant more arguments, more mess, and definitely more cups of tea. It was never dull.

Do you come from a large family, or have a large family now? Do you get together a lot with family?

I’ll leave you with a photo of a tired out Christmas cat 🙂 

black and white cat sleeping on the back of the settee with Christmas decorations in the background.
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Tales From Mamaville

Debs Random Writings

Word of the Week 7th December 2018

Hello and welcome to the new home of Word of the Week, a nice and simple weekly linky, with everyone welcome to pop by and share. You reflect back on the past week and sum it up in one word. Then share your word with us in a blog post, with as little or as much explanation as you like.

There are not too many rules with this linky, just remember to read at least another couple of posts in the link up after adding your link. Do try to stick to the theme of summing your week up. I will read and comment on all posts and tweet them out for you. Please add the badge below to your post so that others may find us and join in. If you comment or tweet then please use the hashtag #WotW

If you are unfamiliar with the Word of the Week linky then please feel free to ask any questions. New linkers are always welcome, we love to hear what you have been up to in the past week.

My Word of the Week

bees being very busy

Photo by Eric Ward on Unsplash

I have been so incredibly busy since last week. On Saturday we put up the tree and decorations.

On Sunday we had a very exciting visit to an inflatable theme park, InflataNation.

On Monday we visited the Little Man’s School for a Christmas crafting evening, along with hot chocolate and carols. I’ll be posting photos on Sunday, but it was a wonderful evening and I’m so glad we’ve made the right choice of school for our youngest.

Tuesday I had to go an buy some birthday cards for my niece’s 21st. I also stocked up on some Christmas cards and visited the £1 shop for some cheap treats. 

Wednesday I attempted some supermarket shopping. I always do my shop online as I find it much easier, but I am also finding myself buying the same things week in week out. Time for a change, so we went shopping. It wasn’t too bad until some ignorant shopper tried to push me out of the way with his trolley. I have a power chair and it doesn’t push. I just get shunted if someone tries to push me. Anyway, he managed to squeeze past and rush off and I called after him ‘you only had to ask me to move!’ But he was way too keen to get out of there.

Thursday, I had to go to an appointment. It didn’t take long but it did mean that I have been out of the house every day this week since Sunday! 

Today, Friday, I’m not going out. The idea is to get some housework done and maybe even a little baking. We have Graham’s family coming to visit tomorrow. I also have to wrap their Christmas presents as we won’t be seeing some of them again until next year.

Talking about Christmas presents, do you wrap as you go along or do it all in one go? I’ve tried both, but my memory gets hazy as to what the gifts are if I wrap them too soon. 

 

Raisie Bay – Word of the Week



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Boobs and Me! Blogtober 2018

I’ve decided to join in with Blogtober this year again, I missed a year last year but I did join in in 2016. With Blogtober you are given a prompt to write about each day during October. As it’s the 2nd of October I’m already a day late so I am combining two posts in one. The first prompt is All About Me and the second is Boobs, Breast Cancer Awareness.

All About Me

As I said, I’ve joined in Blogtober before, in 2016 and here is my All About Me post from then for comparison.

I’ve gained a couple of years since then, no surprise! But I’ve also had a few major changes. I got married!! So my surname has changed. I also had a new diagnosis for my illness. Back then I was diagnosed with Transverse Myelitis from which I had a good chance of recovery. A few months later my diagnosis was changed to Stiff Person Syndrome with PERM. This condition is progressive and can also be fatal. I’m working with my consultant on the right course of treatment, but it’s not easy with the condition being as rare as one in a million world wide. 

I’m a mum of five, two adults and three younger ones. My children all live at home still and we have a five bedroomed house in South Birmingham. Life is very chaotic at times! 

a selfie photo with me in the middle, the Little Man to my left and Boo hiding behind my shoulder.
A selfie of me and my two youngest

Raisie Bay

This blog was born in 2011, a year after my youngest child. Until then I’d blogged about him in another Blog, Baby Number Five. Prior to that I’d also blogged about my  journey to conceive my third daughter who is now 13. The blog spread over two years so you could say I’ve been blogging for 15 years now. However, even more impressively, my first ever blog was set up in 1998 and was all about my life as a university librarian. I had no blogging platform back then and had to write the whole site in HTML. 

Raisie Bay started out as a record of my younger kids life and that is still a major part of my blog. But as the kids get older, and seem less reluctant about appearing here, my blog has started recording more of my life in general. Basically, it’s changed from a Mummy blog to a lifestyle blog. My family is still at the heart of everything I write though.

Header form my blog I started in 2003!

Boobs

My type of Stiff Person Syndrome is often apparent in cancer patients. Generally, when the cancer is treated, then the Stiff Person Syndrome is treated too. This is why some forms of chemotherapy may be the answer to curing my condition. I have been tested for all types of cancer and so far I’m okay.

I am insured against Breast Cancer. I took out the insurance 12 years ago when a friend was diagnosed with an aggressive form of Breast cancer and we both had babies. Sadly, she passed away when her child was just five years old. Since then I have had five friends succumb to the same awful condition. They are still around and still fighting. 

I hate cancer, it’s a cruel disease that takes away so much. The sooner it is caught then the best chance there is of beating it though, so awareness is so important, as is checking yourself often. Find out more information on this here on the NHS site.

To find out more about Blogtober and see all the other bloggers taking part please click the button below or visit Big Family Organised Chaos

#Blogtober18

My Sunday Photo – July 6th 2018

The Twisted Tree

 

Just like this tree, sometimes I think I have many stories to tell, with lots of twists and turns. If I wrote a book about my life I’d probably have to write three volumes!

A long time ago, when I was a teenager, my brother and his wife would take me out to pubs with their three young children. I would see it as a real treat, but I guess they saw it as someone to look after the three little ones outside while they could have a drink in peace. They would even sneak me a drink sometimes, Snowballs were my favourite, or maybe a Babycham. To me it was the best of both worlds, a scamper around the woods or park playing with the kids and a very grown up drink! Oh to be 14 again!

Hopwood House

One of the places they would take me too was a lovely pub next to a canal. Outside was a wooden area and a park with swings and a roundabout. It was really lovely there outside, one of my favourite places to go.

The canal is actually the one that runs alongside my current home and the pub is just a few miles down the road….but, I haven’t been there for many years, very many years.

We wanted to go to a pub for lunch and as the kids were off school on an inset day, we wanted it to be somewhere for them to play outside. I remembered this childhood venue and I was sure the kids would like it. We have our very own (almost) teenager so we knew they would be able to play outside, but Graham still kept popping out to see how they were getting on.

One thing I’d only vaguely remembered were all the steps to this pub. There was wheelchair access but I wanted to use my sticks. I’m glad I did, because the ramps went such a long way around and once inside you had to go up in one of those tiny open lifts that are just big enough for a wheelchair. There is nothing wrong with all this of course, I appreciate that they are there. But sometimes I just like to be a little more ‘invisible.’

So, once inside I was kind of glued to my seat while the kids and their Dad where coming and going. I’d have loved to have roamed about outside, see if any memories came flooding back to me, but it wasn’t to be. Those days are history now. But, it’s still nice that my kids can enjoy themselves like I once did.

They came in for food and regaled me with stories of broken picnic tables and fallen trees. They had made believe that there had been a hurricane and they were there to see if there were any survivors in the rubble. (I’m sure it wasn’t that bad, but it was enough to awaken their imaginations.)

The food was pretty nice too and I was so proud of my kids for ignoring the chips on offer and going for more healthier options. All washed down with milk and squash. I think it will be a long time before Star gets interested in alcohol.

Now we have rediscovered this place, I’m sure we will be visiting again. Do you have any childhood places you like to take your kids?

 

Photalife

 

Sunday Snap

 

Beauty Exists Not in Sameness But in Difference

Last month I spent a lot of time on Instagram promoting Rare Disease Day, 28th February. I also wrote two posts, one about my rare condition and one about my daughter’s. How lucky are we to be so different and have two rare conditions in one family. (hint of sarcasm!)

In fact we don’t have a normal family situation either. I live in a house with four adults and three young children which makes life pretty interesting. The other two adults besides me and my husband, are my older children from a previous marriage. They have yet to leave home and make their own life.

Sometimes I wonder why we have to be so different, why we have so many issues to deal with. I read blogs, lots of them and I see so many ‘normal’ families, enjoying life as it should be. I wish we could be like that. Then I realise that if I think like that I will never be happy. Sometimes being different is okay.

Then I found this story from one of my favourite authors, Paulo Coelho.

Beauty exists not in sameness but in difference.

Who could imagine a giraffe without its long neck or a cactus without its spines?
The irregularity of the mountain peaks that surround us is what makes them so imposing. If we tried to make them all the same, they would no longer command our respect.

It is the imperfect that astonishes and attracts us.

When we look at a cedar tree, we don’t think: ‘The branches should be all the same length.’
We think: ‘How strong it is.’

When we see a snake, we never say: ‘He is crawling along the ground, while I am walking with head erect.’
We think: ‘He might be small, but his skin is colourful, his movements elegant, and he is more powerful than me.’

When the camel crosses the desert and takes us to the place we want to reach, we never say: ‘He’s humpbacked and has ugly teeth.’
We think: ‘He deserves my love for his loyalty and help. Without him, I would never be able to explore the world.’

A sunset is always more beautiful when it is covered with irregularly shaped clouds, because only then can it reflect the many colours out of which dreams and poetry are made.

Pity those who think: ‘I am not beautiful. That’s why Love has not knocked at my door.’
In fact, Love did knock, but when they opened the door, they weren’t prepared to welcome Love in.

They were too busy trying to make themselves beautiful first, when, in fact, they were fine as they were.
They were trying to imitate others, when Love was looking for something original.

They were trying to reflect what came from outside, forgetting that the brightest light comes from within.

taken from A Manuscript Found in Accra, Paulo Coelho

We may be different, we may not lead the same lives as others, but inside we have light and love.

a beautiful sunset shining through the clouds

 

 

 

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A little Note About Positive Reviews on Raisie Bay

A little Note About Positive Reviews on Raisie Bay

Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I’ve also seen negative feedback with say things like, I had to return this item because the colour did not suit me…is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I’ve loved. If I don’t love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It’s always the latter.

This is my blog, my place and I’ll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.