Subscribe to blog via Email

Raisie Bay

easter

Second Week of Easter Holiday (and I’m surviving, just about!)

by 4 Comments

Easter School

We have another week of the holiday left here. In fact we have a whole week and two days because the kids don’t go back until next Wednesday. That is apart from Boo who is doing Easter School in the mornings this week. She needs to get the extra practice in for her SATS in May. I could get on my soap box about the SATS but I feel I’ve done that enough already; and it’s totally up to Boo whether she wants to go to school this week or not. She can’t go every day because we have a few appointments that clash.

Stickers

Last week turned out to be pretty busy, I actually went out four days in a row! Of course, I had to go to hospital for two of those days. Then we did some food shopping and then some more fun shopping. The kids ended up with lots of new goodies last week, but mostly books, pens and decorations to use on their Littlest Pet Shop toys. It’s amazing how thrilled the girls are to be in possession of a new packet of shiny stickers. I also bought them some clay to do some customisation’s. The Little Man wanted a Minecraft Sticker book which was a good buy as he has spent ages sticking in it. He also enjoyed sticking his football player stickers into his Panini World Cup album.

We decided to stay in all weekend, but the Little Man still popped out with his Dad to run some errands. It really has been a life saver having Graham driving. He’s only had his licence for just over a year but he does most the driving now. I’m still waiting to see if the DVLA will let me have my licence back after medical checks. I haven’t been behind the wheel in a long time. Fingers crossed that I won’t lose my licence, I’ll be devastated at the thought of never driving again.

Plans

 

This week will be busy later on with hospital and clinic appointments for Star and the Little Man. We are also hoping to fit in something fun but I have to be careful now as we overspent last week.

Next Monday we are going out for a meal on my niece’s birthday which should be a nice family get together. I’m thinking of going without my wheelchair, if Graham can drop me right outside the door I know I can navigate inside the pub on my crutches.

I have felt some benefit from my treatment last week, although there was a wobble this weekend when I ran out of medication. Graham went to pick it up from the chemist that had my prescription on Saturday morning, but it was closed. I survived on a lower dose, but I really noticed the difference.

While I was in hospital last week the nurse asked me if I’d considered having the treatment at home. I was a bit flabbergasted and told her I knew nothing about it.

It then got me thinking so I asked about it on my help group. A few overseas patients take the immunoglobulins with a subcutaneous injection so I looked up the system that they used. It is available here but it depends on whether your consultant can get it approved and you have to be trained how to use it. The more I think about it the more it appeals to me. I will think about asking my consultant next time I see him. But I’ll also ask that nurse for more information too.

 

Debs Random Writings

 

IVIG, Easter, Curry and Casualty – Keeping it Real

by 6 Comments

IVIG

Today I’m off to the hospital to have my IVIG. Just in case you are wondering it’s intravenous immunoglobulin and it’s an infusion which is one of the few treatments for my condition, Stiff Person Syndrome. It’s not bad, I go in, sit in a recliner chair and have my weight and bloods tested before being fitted with a cannula and receiving my infusion. Then I sit and rest for around four hours. Every half an hour an alarm bleeps and the infusion is pushed through a little faster. Then I’m given a little flush of saline through the drip and sent home, usually with the cannula in place so they don’t have to fit it again the next day.

 

I have my treatment on a day ward along with around five other patients. Sometimes I chat, sometimes I read and sometimes I drop off to sleep. It’s all very relaxed. This week I have a new audio book to listen too if I’m in the mood. Before I’ve been there for five days, but this week I think it’s only two. I say think because it will depend on whether they can fit me in again next month. I normally have five days every three months, but my consultant wants me to change to two days every month.

Easter

I’ve always enjoyed the Easter holiday but this year I’ve not really been feeling it. I’ve not been well for a few days now which hasn’t helped but that’s not all I mean.

In the past I’ve enjoyed Easter Celebrations at church. But I’ve not found a church like my old church where we used to live. It’s strange because it felt like my family there and when we moved we tried a new church which made my old church seem boring and stuffy. But the new church didn’t work out because I didn’t feel comfortable there. So, there has been no church.

In the past I’ve enjoyed Easter celebrations at the kids’ school. Easter Bonnet parades, egg decorating competitions, Easter assembly. This year there was nothing! I can understand it with the girls as they are older now, but my youngest is only seven and his school did nothing to celebrate Easter.

7 different pics of my kid in easter bonnets that we have made in past years

here’s one (or seven) we made earlier!

In the past I’ve enjoyed Easter activities with the kids, baking Easter biscuits or making our own chocolate bars but I felt too ill this year and the kids were not interested. We just about managed a little Easter Egg hunt on Easter morning. I felt proud that I’d managed to label the eggs and hide them. That was my effort.

Easter lunch was nice, hubby cooked a fabulous lamb dinner. I didn’t even get up to help him. I think the highlight of the day was probably watching Charlie and the Chocolate Factory with Star in the evening.

We didn’t manage to go out on our planned Easter Egg hunt at a National Trust Property.

We still have two weeks left to fit in some fun activities though. I’m thinking of surprising them with a trip to the Science museum, but it really depends on my health. Fingers crossed.

Curry and Casualty

Hubby went out again on Saturday Evening. I felt ill but I said I could manage the kids alone for one night. We didn’t even have a take out! Go me, I cooked dinner, albeit a curry from a jar. Boo made some fantastic naan bread all by herself, what a star she was, she insisted on helping me with dinner.

Usually when hubby goes out I have the kids in our room and we snuggle on the bed to watch Casualty* before they go to their own beds to sleep. They watched it last week where it ended in a car crash with some of the main characters. They survived the car crash but we all knew that the man was already dying with a brain tumor. Anyway, to cut a long story short, he died, but right at the end of the program. We were all in tears it was so sad, but I’m so glad that I let them watch it because of the way he died. You see, they could have killed him off in the car accident, which is probably what you expect from a television drama, but no, he died peacefully, with his wife and baby daughter by his side. There was no struggle, no pain, just a peaceful slipping away which was so sad, but then so lovely. I was glad that my kids could see that death doesn’t have to be so awful. It was very moving.

*Casualty – A BBC hospital drama

 

Debs Random Writings

My Sunday Photo – Easter 2018

by 9 Comments

Happy Easter

It’s hard to imagine it’s Easter when it’s so dark and miserable, I normally associate it with spring. However, I’ve been around long enough to know that it’s not always good weather at Easter. I’ve even seen it snow before.

As I’m writing this the eggs are all labelled and hidden around the house for the kids to find when they get up. They have enough for breakfast, lunch and dinner, and I’ll mop up the sick later! (I’m joking of cause!)

I did think about buying some small eggs to hide, but thinking is about as far as I got. Like I thought about making a Simnel Cake and a chocolate cake for the kids grandma. I also thought about baking some Easter biscuits with the kids, or making some decorations or cards.

I guess  I’ve not been well, or, even worse than usual. My energy levels are at zero and motivation is failing me. My family should count themselves lucky I’m getting out of bed in the morning. (I don’t want to!)

I was hoping to take the kids on a Cadbury Easter Egg Hunt at a National Trust property, but the weather forecast is so miserable we’ll have to give it a miss. My wheelchair doesn’t like rain, or mud.

It’s okay though, we have plenty of time to make amends. I’m only in hospital for two days next week now, instead of five, so that gives us time to do something. And, in less than three weeks we will be spending the weekend in Somerset.

Whatever you are doing this Easter, I hope you have a wonderful time.

 

Photalife

 

Sunday Snap

 

Hospital, Easter and Another Take Out – Keeping it Real

by 6 Comments

IVIG

I’m off to see my consultant today, my appointment was pushed back from January. I guess a couple of months is not too bad, I’ve had appointments pushed back by eight months in the past. My consultant is a very busy man, as well as his hospital duties he’s also a teacher at the university. My consultant must also be a very rich man!

I feel a little unprepared if I’m honest. Normally I’d have a long list of things I want to ask but today there is just one thing…give me more IVIG* and more frequently. I’m in hospital next week for my fourth round of IVIG and each time I’ve had it, it gives me better results. I’m like a junkie waiting for my next fix, I want it so bad, I want to feel some relief from these horrid daily symptoms.

The first time I had IVIG the results were disappointing. I thought it would be a miracle cure and that I’d be able to walk again and get on with my life. It works for some people, so I wanted it to work for me. Sadly, I was so upset that I failed to notice any improvements despite there being some. After the second one I was so ill with side affects I was wary about having any more but my family had noticed improvements even if I hadn’t so they pressed me to try it once more at least.

The third one I went in with fewer expectations and I prepared well for the side effects. It was good, not only did I take more notice of the little improvements, I relished them. I took note of every night I slept without waking in spasm and pain. I took note of the longer time I could stand at the kitchen counter without the burning sensation in my legs that forced me to sit. I took note of the time I could sit and crochet, or use the lap top without the myoclonus jerking. I took note of the fewer spasms and cramps. I particularly took notice of the lack of side affects! The preparation had worked.

Then I took notice of when my symptoms started to get worse again.

That’s why I really want to ask to have them more frequently. My last IVIG was in January and the benefits lasted just a few weeks. I’m hoping my consultant is feeling generous, IVIG is expensive, but I need it.

*IVIG = Intravenous Immunoglobulin.

Take Out

If you’ve been here regularly you will have seen my tales of Take Out Woe! Well, this week it changed to Take Out Wow!

Graham went out again on Saturday so I decided to risk another take out despite the last two being complete disasters. First I asked the little ones if they’d like food from Sophie’s, a nearby chip shop that delivered. They were perfectly happy and Boo and the Little Man ordered a battered sausage and chips and Star asked for chicken and chips. Then the oldest two said they wouldn’t mind chip shop food. So more sausages and a pie for the big son were ordered and I relished paying less than half the price of the usual take out.

I ordered way too much food but I didn’t mind as it had been so much cheaper and everyone was full and content. It was a chip shop take out win for this week!

Easter

I haven’t bought a single Easter egg yet!! I’m hoping to get some today, we are going to pop to the supermarket before going to the hospital.

The kids break up from school on Friday 29th March and don’t go back until April 18th! I love the Easter holiday but this one is going to be  bit different with my being in hospital for most of next week. Thankfully, I don’t have to be there until lunch time each day, but I’ll be there until about 5pm. Because it’s bank holiday on Monday I won’t be in then, but I’ll probably have to go in on the following Monday for my final treatment.

Star also has a hospital appointment the following week and Star and the Little Man are also due in the clinic. So, it’s going to be an appointment filled holiday.

We are hoping to have some fun though, and I’ve already planned that we spend this Saturday doing a Cadbury Easter Egg Hunt at a local National Trust Property.

If you need some inspiration for Easter don’t forget to check out  My Top Picks for Celebrating Easter.

Photo by Rod Long on Unsplash

 

Debs Random Writings

 

My Top Picks for Celebrating Easter 2018

by 1 Comment

It’s nearly Easter, and I’ve been browsing the Internet for ideas. So, if you are looking for eggs or something a little different then hopefully I can help.

Chocolate Eggs

You can’t have an Easter post without chocolate eggs so here are my picks.

The Entertainer have some fabulous personalised egg boxes containing six chocolate eggs. What I love about these is that they are available in some fabulous designs that the kids will love, like Jo Jo Siwa, Paw Patrol, Unicorns, Manchester City and West Ham United. Perfect if you are looking for something a little different.

For more traditional eggs then pop on over to Cadbury’s Gift Shop. Be quick and you can get 15% off your order by adding the code RABBIT at the checkout. (limited time offer.)

Thorntons are offering some great offers on a daily basis. Currently you can get two large eggs for £15

or you can buy 2 smaller eggs for just £5, and some you can even personalise.

Chocolate and Sweet Gifts

These gifts are still for those with a sweet tooth but are not the traditional eggs.

Prezzy Box is a site full of the more unusual but lovely gifts. Do you know someone who loves Ferrero Rocher? How about getting them a personalised sweet tree.

 

If Ferrero Rochers is not your thing, they also do Malteser Trees, Lindor Trees and even Liquorice Allsorts Trees! Plenty of choice.

Girly Gifts

You can’t beat Claire’s for some quirky gifts that girls will love. Their  Easter collection features bunnies and chicks and prices range from £3.50 and go up to £15. Currently Claire’s are offering buy one get one free on almost everything!!

cute bunny notebook £6

 

Boy Gifts

Probably not very Easter like but you can always get the boys a box of Lego. At Geek Box they are currently giving away a lego gift with every £20 purchase of Lego.

A Tea Lovers Easter

know someone avoiding the chocolate and trying to improve their health who loves tea? (Just like me!)

How about this lovely Happy Healthy Easter Bag from Twinings.

Book Lover’s Easter

How about a book treat? There are lots of books for kids all about Easter and I’m sure the little ones would love this Peppa’s Easter Egg Hunt.

Or for the adults you could just browse the Books of the Month for March.

Flowers

Why not brighten up someone’s Easter with a gorgeous bunch of spring flowers. At Prestige Flowers they have a beautiful selection to choose from and lots of other Easter gifts starting from just £9.99

Easter Crafts

Finally, how about making your own Easter gifts and decorations? At Hobby Craft there are loads of ideas for adults and kids. You can get everything you need to help your kids make their Easter Bonnets, Easter Cards or decorate their eggs. You can also find a load of Easter baking goodies for making cakes or even having a go at making your own chocolate eggs or treats. (One of our favourites is Easter Bark, pretty simple and lots of fun.) Or if you fancy a bit of crafting yourself, how about making a gorgeous Easter Wreath?

 

Easter Egg Hunts

You can make your own Easter Egg Hunt at home, we often do, but at Easter Cadbury’s team up with the National Trust for some special Easter Egg Hunts. There are over 250 venues to choose from at National Trust properties. We will be going this year but you can read all about our adventures last Easter at Packwood House.

I hope my post has given you some ideas for this Easter. Whatever you do, I hope you have a lovely holiday. Easter is my favourite time of year, the weather is warming, the kids have two weeks off school and there is chocolate involved. What’s not to like. 🙂