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

 

Mancala in Pyjamas

 

Earlier this week I published a post about gifting your children with your favourite pastimes and I also introduced my kids to Mancala.

Originating in Africa, this is an ancient game of moving markers around a wooden board. The rules are simple enough to learn as you go along, but once learnt that’s when you start your strategies. Thinking ahead is vital and children also learn counting skills. It’s also great for teaching a little finger dexterity.

My mancala board and stones are more than sixteen years old! I’m surprised that I’ve never lost one of the little glass stones, which look like flattened marbles. I think the main reason is that they never have to leave the board an when playing is over the board folds up with the stones inside. If I did lose some though they could always be replaced with garden stones, buttons or basically anything so long as they were not too big. Sometimes you end up with quite a few in the little pot.

If you didn’t have a board though, you could always make your own. Egg boxes are perfect as you have the six little pots needed. You’d just need two with two end pots. I like this egg box up cycling version

photo from artcrackers.com

 

Have you ever played Mancala? Have you passed on one of your favourite games to your children?

 

Photalife

 

Sunday Snap

Some days motivation is just so hard to find don’t you think?

I’ve been feeling like this for while now and I’ve been trying to get out of this slump. I’ve been reading motivational posts and looking at motivational quotes and nothing. I’ve felt no motivation at all.

So, I’ve decided to take a different approach and look at what kills motivation.

Impatience

I always pride myself as being a patient person. In fact a lot of people have praised me on my patience. Many people have admired my patience and said things like ‘I wish I was as patient as you.’

Sometimes, I don’t feel patient. In fact lately I’ve been looking at my life and thinking ‘what the hell!’ How did I get so far along without achieving anywhere near as much as I had hoped to. There are so many things I wanted to do, so many things I still wanted to do. Then it creeps into me, that nasty little word, impatience. Time is running out, get it sorted now. Do it now. I can’t wait anymore, I want it now.

In a way, it’s hard to get past. I know I’m running out of time. I know I have so much still left to do. But feeling impatient isn’t going to help  me. If I run out of time I have to accept it. I have to accept that not everyone achieves everything in life. Would I go back and change it all? Well, it would be nice to be somewhere else in my life right now, but changing it would change the things I have right now, and  that’s not all bad. In fact there are so many things I wouldn’t change at all. Which brings me nicely into my next motivation killer.

Ingratitude

You know when you are told to keep a gratitude diary, or even to just write down the things you are grateful for? Well, I’ve always found this so hard. Yes, I’m grateful for my family, I’m grateful for the roof over my head, errr, I’m grateful for the sky and the sun and the stars and the moon and bloody hell, I’m so ungrateful, my life is a load of crap. Who would be grateful for legs that don’t work properly, for constant pain day and night, for arguing siblings, a partner who doesn’t understand, the shit way my life has turned out.

There it is, ingratitude, rearing it’s ugly head…that didn’t take too much digging did it!

“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. – Melody Beattie”

Time to turn that around on it’s heals.

It’s so easy to feel ingratitude, but feeling grateful is so much nicer.

Let’s get back to writing that list. I’m not grateful for the constant pain, but I’m grateful for the doctors that listen to me complain, take all my worries on board and provide me with treatment.

I’m not grateful for arguing siblings, but when they play together they make me feel so happy. Everyone has to experience the little bad things to appreciate the good things more.

I’m not grateful that my partner doesn’t understand, how could he, would I really want him to feel the same? I am grateful for everything he does for me. He doesn’t always get it right, and sometimes he drives me up the wall, but I wouldn’t be without him. Never mind losing my legs, without him would be like losing my arms as well.

As for the way my life has turned out, well, it could have been worse. I could have still been with my ex husband (haha, sorry if you read this Dave, but it’s true, what a nightmare for us both.) I could have never had children, I might never have experienced some of the wonderful jobs I’ve had, met the lovely friends I’ve met, oh I know life could have been so much worse. With every bad thing there has been good. Nothing is ever as bad as it seems.

If you have trouble finding gratitude in life, then try this simple thing.

Write a letter, or a note, or a card to someone you care about. It could be a friend, a family member or even someone as obscure as a bus driver or shop assistant. Let them know what you are thankful for, minding your kids, helping you out, always being friendly, being someone you can talk to….anything at all, big or small. You don’t even have to give them the letter afterwards if you don’t want to, but just writing it down has given you the opportunity to express gratitude and unlocking the fullness of life.

Envy

I’ve always prided myself as not being the jealous type but sometimes envy gets to everyone. Are you on Facebook? Do you see posts of friends enjoying fabulous holidays that you know you could never afford, or someone showing off their brand new house, or baby or even kitten? Maybe, if you are a blogger, you see someone reviewing the latest gadget that you really would have loved to have reviewed, or going to the most fantastic event  that you would have loved to have attended.

Hands up! I pride myself as not being jealous, but that’s only because I would never admit it in public. The truth is, there is always someone who is going to be ‘seeming’ to be bigger and better than you. But I say seeming to be, because that’s just it. Life is what you make it and if you let envy get in the way then you are less likely to go out and make it better for yourself.

Envy is a trick, it will make you forget that the only life worth living is your own!

Being Overwhelmed

Ever felt that there is just not enough time in the day? Ever feel that you have so much to do you just don’t know where to start? Ever feel that life is passing you by and all you can think about is everything you need to do?

I know I do. I know I get overwhelmed a lot.

Being overwhelmed can take over your entire life. When I’m overwhelmed I struggle to get out of bed because I’m thinking of everything I have to do, then I get on my computer and mess around on Social Media or play silly games, read lots of pages that are interesting but not really helping me get everything done that I need to do. By the time I get to bed in the evening I’m still feeling overwhelmed and I can’t sleep because I didn’t get everything done that I needed to do that day.

How do you get over being overwhelmed? Certainly not by getting everything done, because then you’ll have a whole heap of new things to do.

It’s a case of breaking everything down. Start by making a list of what you need to get done. Then strike out everything that is not absolutely necessary. Don’t put things off , strike them off. Then think about what you really need to do first, maybe it’s a little thing that you’ve been putting off because you have so many bigger things to do. Just do it, get it out of the way.

Schedule your tasks and work your way through them at your own pace. Once you’ve cut down your list of things to do and got the little things out of the way you probably won’t feel so overwhelmed by the rest.

So, I’ve done all this, taken my own advice, but still feel overwhelmed. The next step is not to be so hard on myself. I’m not superhuman, I can only do what I can do. I’m going to stop beating myself up over what I’ve not achieved and appreciate myself for what I have.

Poor Health

Health and motivation go hand in hand. If I’m ill then my motivation to do anything at all just disappears. Last week I was so poorly for a few days and I achieved so little. This is probably why I’m so overwhelmed this week, I’m playing catch up!

Sometimes you can’t help being sick, I couldn’t help it last week. But, if you look after yourself properly then even though you can’t always beat the bugs, you can keep yourself going throughout the day.

So, just by eating better, getting as much sleep as you can and taking a little exercise you can boost your energy and your willingness to get things done. Get rid of the sluggishness and get yourself motivated instead.

 

I hope you’ve found this interesting or helpful. I’d love to know how you stay motivated or what kills your motivation?

 

Naptime Natter
Monday Stumble Linky

Pastimes aren’t always something that we should place a value on. Not least some kind of inherent moral value as some things seemed to be in the past. However, when you have children, and you see them beginning to form their own views and personalities, it’s a complex conundrum. Children are so innocent and should be left to discover the world on their own. Yet we can’t help ourselves as parents to want to gift them something of our generation. Seeing little parts of your personality in them, makes you wonder could they possibly love what you did when you were growing up? Maybe you could give the gift of passing on pastimes to them and see if they resonate within them.

six children playing on the grass outside

Photo by Kyra Malicse

 

Sport and physical games

With the advent of modern technology, it seems as though children get more fun out of staying still than they do moving around. A shocking paradox as many parents will know, getting the kids to sit still while at the dentist was once a chore in itself. Now they have games on their smartphones, tablets which are all portable. However growing up in a simpler time might get you looks of sympathy from your kids until they try out the games you once played. Teach them how to play rounders, teach them the classic games of tag, and hide and seek. Get them to a park where they can run around and practice hopscotch, play with other children in a game of capture the flag, jump rope and double dutch. These games that once brought you so much joy playing with friends shouldn’t be lost to the ages.

a victorian dolls house

Image credit Vassil

Virtual to real

Indeed there are virtual game creators that you cannot deny are brilliant, no matter how distracted they make your child. The complex coding alone just for the backgrounds let alone the interactive nature should be respected. No wonder children get lost in video games because they afford them the ability to make something their own. That’s why dollhouses were much loved because they gave you the ability to make the home however you wanted. There were assortments of decor, lots of delicate pieces like lamps, paintings, mirrors, pictures and other finer details. Buying your son or daughter their own dollhouse which you can then both collect and build together will add a new layer to your bond. There are still companies that make dolls house furniture and make them in a more contemporary and traditional type of manner and style. All rooms are supplemented for, kitchens, bathrooms, living rooms, even study offices.

Birthday games

It’s harsh to admit, but some kids just won’t want to play the droll old games mum and dad used to play. So you can sneak them in when it’s their birthday. Games like musical chairs, crack the whip, pass the parcel etc. are games that have a ‘last man standing’ trait. The person who can win these games is awarded a prize. It adds a competitive layer to it and thus creates an incentive for kids to drop their video games and get involved.

It truly is a gift of memory when you introduce children to your pastimes. The games create moments of pure joy that when they’re older, they will miss. Hopefully, when we’re gone, our children can pass on the games we taught them to their own children.

Are there any pastimes from your childhood that you have passed on to your children?

 

Disclosure: collaborative post

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. 🙂

 

Disclosure: This post contains affiliate links