What it is like Living with a Chronic Illness

I can’t speak for everyone because we are all different. But living with a chronic illness is often misunderstood.

Imagine that the next time you get one of those horrid colds that knock you off your feet, disturb your sleep and make you feel like crap for a few days.

Then you get better and go back to normal, glad that it’s over, you survived intact.

Now imagine you don’t get better and it just carries on like that for weeks on end. Or maybe it gets better for a while but you know it will be back again in a week or two. That’s what living with a chronic illness is like.

The Spoon Theory

six silver spoons

A lot of people refer to the Spoon theory. When you are not well you can imagine a day where you wake up with a number of spoons. Then after every activity you take away a spoon until there are none left. Sometimes they can last all day and you may even have an extra one for the next day. But you can also have days where the spoons get spent very quickly and you are left unable to do anything else for the rest of the day. You can even overdo things one day, leaving you with fewer spoons for the next day.

A lot of chronically ill people refer to themselves as spoonies, I am a spoonie.

My Story

Three years ago I was taken ill quite suddenly. I don’t know what caused it but I’ve learnt since that shocks can trigger your body into attacking itself. And I’d had a shock when my Father-in-Law had suddenly dropped dead in front of me with a heart attack,while I was taking him for a hospital appointment.

Two days later I was back in the same hospital myself, virtually paralysed. Totally numb. I was originally diagnosed with Transverse Myelitis and told I would recover within a couple of months. A year later I was diagnosed with Stiff Person Syndrome plus PERM and told that recovery was unlikely.

Things I have Learned Since I Have Had a Chronic Illness

Life with a chronic illness is hard, harder than you can imagine.

Life is also difficult for loved ones, they have to watch you suffer and see someone they depended on become someone they have to look after instead.

It’s difficult to carry on with a normal lifestyle, even if you are well enough to continue working you will need to take lots of time off sick.

It’s hard being a Mum, especially when your child needs you and you can’t be there for them.

You’re mental health deteriorates, you may start out feeling positive that you can beat the illness, but as time goes by you feel like it’s just not worth living any more.

People don’t like to be around sick people.

You find that people just don’t understand how you can be ill so often.

People stop asking how you are.

You stop being invited to events because people just assume you won’t be well enough to go.

It’s difficult to plan for anything because you don’t know if you will be well enough.

A lot of partners cannot cope with life with a chronically ill person and decide to leave them.

Staying Positive

It’s amazing what a difference having a positive attitude can have. I am not always positive, but when I pull myself out of my self-pity and hold my head up I feel so much better.

Life is not always easy, not for anyone whether you have a chronic illness or not. But, it’s up to you how you approach life, how you deal with it, that makes things better. I may not find any relief from my pain, but it certainly makes me feel better when I can laugh and have fun with friends and family.

I’ve just had an awful weekend, I’m not sure if it was side effects from my infusions, or related to something else but I really was ill. I could barely do anything but watch television. My family just left me to it. But there is only so much I can take, I will push myself to do things, not give in to the pain, probably even make myself feel worse in the end. But, in my mind I want to be the winner, not the giver upper!

There has to be a balance though. Sometimes when you are rock bottom it’s okay to admit it and give in, so long as you are willing to fight for it when you are ready. I gave in, I watched 3 hours of Friends and 4 hours of Doctor Who over the weekend. I’d had enough by then, enough lying around and giving in. But I’d also allowed myself to wallow and rest. It was time to fight.

One day I know the fight will be gone, but until then I’m going to polish my spoons and keep on keeping on.

courage is not having the strength to go on, i'ts going on when you don't have the strength
Debs Random Writings

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Education Now and Then

old fashioned typewriter

Photo by Patrick Fore on Unsplash

Last night the girls were watching Back in Time for School. They thought that the lessons the girl’s were taught were quite hilarious. We watched them learning how to make up a cloth nappy and put it on a baby doll. The girl’s were quite amazed when I told them that I’d done that at school.

I had the nappy lessons and how to make up a baby bottle and feed a doll. For the exam in Childcare, which was an actual subject, we had to make up a bottle of formula in front of the whole class. I hated it, I really didn’t want to think about babies at the age of 16, it wasn’t on my agenda. (Yes, I am a Mum of five!)

One thing that always bothered me was the computer room. I’d walk past watching the boys file in and try to get a look at these elusive computers through the window. Then I’d go down the corridor to my typing lessons. I have to admit, though, I did like typing. The feel of my fingers tapping along the keys while looking at the document to my right made me feel like I was learning something special. My fingers were learning those keys and it’s something I’ve never forgotten. Of course, I was never interested in an office job either.

It was interesting to see how little had changed from the TV program to my school days despite it being more than 20 year later. Thankfully, my girls have much more opportunities at school these days. There are no limitations, they can learn what they want. The typewriters and dolls with nappies are long gone, and the computers are not kept for the boys use only.

School Today

I like to give updates every now and then on how my kid’s are getting on at school and this seems like a good time.

Star, is now my longest lasting child to manage main stream school. She is in year nine and thriving. The school fits her needs perfectly and she has even made a couple of friends. She told me that a lot of her peers are more mature now and the teasing and bullying is no longer an issue. I’m sure it goes on elsewhere, but for Star it’s not a problem which is great. She is doing well in her lessons, learning well and being treated with respect for her disabilities.

Boo is coping well with Secondary school. Her transition was painless as she was already at the school from year six. Being in the building and getting used to the teachers helped loads, she even picked up the playground and lunch time rules with ease. She is not super bright but she tries very hard and works well so I’m sure she’ll succeed. She listens to her teachers and behaves well. She has a lovely group of friends who she gets on so well with and is generally happy.

The Little Man has settled in well in his new school. I’m so glad we found this school for him, he’s already doing better than before and is much happier. There is no bullying and although he still gets into trouble occasionally, it’s not every single day like before. I don’t know if he will still be going through an assessment but I think as long as he’s doing well then I’m not going to worry. He will spend another two years in this school after this one and I’m sure any issues will be ironed out by then.

But one of the things I’ve really enjoyed recently is the lack of head lice! It must have been the Little Man’s old school that was the problem because since he left we have eradicated the little blighters completely. Any Mum that has had to deal with frequent attacks of nits with more than one child will understand my excitement in this.

Lucy At Home UK parenting blogger
Twin Mummy and Daddy

Word of the Week #2 of 2019

Hello and welcome to the 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

Routine

snowflake picture with the words, Back to Routine after a lazy couple of weeks

Ahh the lazy days of Christmas holidays are over and the kids back at school and we are all back into a routine.

The Little Man went back on Monday and was quite excited to get back to his routine. The girls had a couple more lazy days before they went back. Thankfully, we never really change much of our bedtime and getting up routines, even when on holiday. It means I never get a lie in, but it also means it’s less of a shock to the system having to get up again.

We do however change the routine of things we do in the day time and I will admit we have been really lazy. I kind of feel bad, but on the other hand, if there is one time of the year that calls for laziness, it has to be Christmas. It’s cold, the kid’s have new toys to play with, there is loads on the television to watch.

I promise that next time they have a school holiday I will do more with them. Even if it’s still cold.

Now it’s your turn, what have you been up to this week?

Raisie Bay



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The Gift, Cecelia Ahern. Book Review

The Gift – Cecelia Ahern

book cover, black background with a  gift tag attached to a snowdrop.

The Blurb

Everyday Lou Suffern battled with the clock. He always had two places to be at the same time. He always had two things to do at once. When asleep he dreamed. In between dreams, he ran through the events of the day while making plans for the next. When at home with his wife and family, his mind was always someplace else.
On his way into work one early winter morning, Lou meets Gabe, a homeless man sitting outside the office building. Intrigued by him and on discovering that he could also be very useful to have around, Lou gets Gabe a job in the post room.

But soon Lou begins to regret helping Gabe. His very presence unsettles Lou and how does Gabe appear to be in two places at the same time?

As Christmas draws closer, Lou starts to understand the value of time. He sees what is truly important in life yet at the same time he learns the harshest lesson of all.

This is a story about people who not unlike parcels, hide secrets.They cover themselves in layers until the right person unwraps them and discovers what’s inside. Sometimes you have to be unravelled in order to find out who you really are. For Lou Suffern, that took time.

My Review

I listened to this book on Audible, the narrator, Mark Meadows, had an Irish accent which fitted perfect with the Irish characters. In fact, I think Mark Meadows could become a favourite of mine, he’s so good to listen to.

The story revolves around the main characters Lou and Gabe, but their story is told to a young boy being held at the Police station after throwing a frozen turkey through a window.

Lou first appears as a generous and kind character as he takes a homeless person, Gabe, off the streets and gives him a job in his office block. As the story progresses we see Lou as an uncaring, selfish and cheating character, trying to get to the top position in his office in whatever way he can. He has a beautiful wife and two little children, but he rarely makes time for them. He ends up upsetting most of his wider family members too when he takes over his Dad’s 70th birthday party, but passes the buck to his secretary.

Gabe, however, sees something good in Lou, and despite the fact that Lou is rude to him, he seems adamant to make him see the error of his ways and help him any way he can.

There is an air of mystery in the story as strange things begin to happen, reality has to be suspended as we see Lou getting his wish of being able to be in two places at the same time. It’s only by having the extra time this gives him that he realises just what he is sacrificing and what is really important to him.

Will he choose the big job or his family?

The ending of Lou’s story gives a twist that you may be expecting, or not. It all reminded me a little of ‘Tales of the Unexpected.’

Verdict

I really enjoyed this book, if mostly for the narrator. The story was based around Christmas time and we get a look at the joys of Christmas celebrations Dublin style. The imagery is just right and although the minor characters are not written in too much detail, it doesn’t really matter. The focus is mainly on Lou and Gabe.

The story was a little extraordinary but I’m not complaining about that. The ending did feel like I was being preached too, but I guess the point was a good one to make. I think you could probably cut all that out and people would still get the message. Because that what this whole story is about, delivering a message.

If you don’t wish to listen on Audible you can buy this book on Amazon for £7.99

Disclosure: This post contains affiliate links.

Mix It Up Linky

Back to Normal

So Christmas is over for another year, it’s official, the tree is down and decorations banished to the cupboard for another year.

Here’s a query for you…for many years I took my decorations down on January 6th which is the Epiphany. It was what my Mum did and I followed suit. But, then I discovered that most people take their decorations down on 12th night which is January 5th. Despite my Mum teaching me it was incredibly unlucky to take them down before the 6th, I have in the past couple of years taken the opportunity to be rid of Christmas a day earlier, sorry Mum. So, what do you believe is the right time to take down the tree and decorations? Maybe you are like a lot of my friends who like them gone before January?

This Christmas passed peacefully and we had a lot of fun as a family. I think maybe I got stressed out in the run up, not because of the usual things, but because we are renowned to have disastrous Christmas holidays and I was worried it would go wrong again. Our track record includes 3 family deaths, pet deaths, huge fall outs, and calls to the police and ambulance services. Even I didn’t escape as only 3 years ago I ended up in hospital on New Years Day. You know what, we only need a murder to fully compete with an Eastenders Christmas script.

New Year!

Sadly we did begin the New Year on a bad note as my Mother-in-law’s dog passed away during the night on the 4th January. I’m not a huge dog lover but Sasha was such a gentle friendly dog, she will be missed.

a head view of a staffordshire bull terrier dog
In Memory of Sasha

On 7th January I am having my hospital treatment which is much needed. I think I totally wore myself out over the Christmas period. Bad eating, too much alcohol and too many late nights have taken their toll.

The Little Man is back at school on the 7th and the Girl’s go back on the 9th. It will be strange getting back into a routine. But, I’ve found the solution to a lot of my woes. My son bought me a new tumble dryer for my Birthday back at the end of November, and last week I bought myself a new washing machine. Both new machines are 10kg loads and super quick, I can’t believe what a difference it has made to my washing mountain. (my old machines were both 7kg loads) I’m almost looking forward to tackling the school uniforms and p.e. kits again. (almost)

The Blog

I’m migrating my blog this week to a new host so I may disappear for a while. I should be back by Friday for my Word of the Week though. Nothing will change, Raisie Bay will still look the same. (hopefully)

Thanks for reading x

Mix It Up Linky
Debs Random Writings

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.