Word of the Week #6 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. I also have a Pinterest board devoted to Word of the Week and I will add posts to Mix (formerly Stumble.) 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

This week has been dominated by illness. Star caught a virus which started making her feel ill on Sunday and is still hanging around.

On Monday we took Star to the GP and were told that it was ‘just a virus’ and that she just needed rest, fluids and paracetamol. Which is what we were doing anyway.

Then when Boo came home from school she went straight to bed. She’d felt unwell at school but they didn’t call us, so by the time she came home she felt really poorly.

By Tuesday, no1 Son also had the virus and he was really poorly too. It’s funny, but when he gets sick he remembers being a small child at my Mum’s where she would give him boiled lemonade and egg and soldiers. These are the things he asks for whenever he is sick. I like it because it reminds me of my Mum, but I’m pretty sure the cure is old fashioned now.

As of yet, the Little Man has managed to stay healthy, I think it’s because he’s kept as far away from his siblings as possible. Eldest daughter has barely come out of her room when she’s been home.

Graham hasn’t felt very well and I’m feeling a bit rough, but we are not as poorly as the others have been. Fingers crossed we don’t get any worse.

I’ve had to miss my treatment at the hospital, I really didn’t want to go carrying such a nasty virus around vulnerable sick people.

Raisie Bay



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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
Twin Mummy and Daddy

Mental Health Awareness Day

The prompt for Blogtober18 today is, Just Be Yourself #Mental Health Awareness Day.

World mental health day logo

My daughter saw on the television this morning that it was Mental Health Awareness Day and said that they would probably talk about mental health at school today. I replied that it was good to talk about it as everyone’s mental health was important. She looked confused for a while and then asked, “does everyone have mental health then?”

Then it was my turn to look a little confused but I soon cottoned on. She was taking the term mental health as meaning that something was wrong. It’s true that  a lot of us don’t think about our mental health until something goes wrong with it.

I explained to her that everyone has mental health just like they have physical health and that they both need taking care of because they can both get sick sometimes. If you get sick physically you seek help from a  doctor or the pharmacy, or maybe you just take extra care of yourself until you feel better. It’s the same with mental health, if things don’t feel right then you should seek help and possibly treatment just like with your physical health.

Keeping Well Mentally

We all try to take care of our physical health but do we take as much care over our mental health. Sadly, a lot of us don’t, but it’s not so difficult to do. Self care is really important, especially when professional care when something goes wrong is so difficult to get. 

So how do you take care of your mental health?

  • The first thing you should do is talk about your feelings. Find someone who is prepared to listen and connect. 
  • Look after yourself physically, get some more exercise or just fresh air occasionally
  • Eat well and moderate your alcohol intake.
  • Be more mindful, take time just to be in the moment, not thinking about the past or the future.
  • Find something new to learn, or even do some puzzles or crosswords. Give your mind something else to concentrate on.
  • Reach out and care for someone else, it can boost your self esteem and create a closer connection.

If you do feel your mental health is suffering then seek help. If you were physically ill you’d ask for help, it’s just the same, it’s your health.

Don’t Judge

No one walks in anyone else’s shoes. Judging when you don’t know the full story is the worst you can do.

It’s not only the ones with mental health issues but their families that suffer. People tend to hide mental health issues, find them difficult to talk to, particularly if they are the carer. Life can be difficult and awkward but they may feel less inclined to talk or explain why. 

Everyone deserves to be treated with kindness, no one should be judged

If you feel you have a poorly mental health then please find some help, even if it’s just someone to talk to. 

Linking up to A Blogging Good Time

Mummy in a Tutu

Mix It Up Linky
Lucy At Home UK gentle parenting blogger

Two and a Half Years (and a couple of weeks)

In the Beginning

Two and a half years and a couple of weeks ago I woke up with pins and needles and ended up in hospital paralysed. It seemingly came from nowhere, but I now believe I did have hints that something was happening with my body.

After two weeks in hospital I came home with a zimmer frame and the promise that after six weeks physio therapy I would be fine. Nine months later when I saw my consultant next I turned up in a wheelchair, things were not fine.

I’d had an MRI in hospital which hadn’t told them much about what was wrong with me, so my consultant did blood tests, muscle tests and nerve tests and I ended up with a diagnosis of Stiff Person Syndrome, or a specific type of SPS known as Progressive Encephemyelitis with Rigidity and Myoclonus, or PERM.

So for the first year I was expecting to get well, but exactly a year after my hospital admission I found out that not only was I not going to recover, but my illness was progressive.

Year Two

I am still in  a wheelchair although I can walk for short periods with aids. I walk around my home but I always have something to hold on to. I don’t walk outside very often, I’ve tried sticks, a rollator (walker with wheels) and crutches. They all help with balance but nothing can stop the pain and fatigue. I get so far and my body just doesn’t want to move any further.

I take a cocktail of drugs every day, but the pain is always there, I may be able to dull it, but it never goes away. Sometimes my body freezes up into a complete spasm. Sometimes I can’t swallow properly, sometimes I can’t breath properly, it’s unrelenting.

Apart from the drugs I’ve had intravenous steroids which helped in the first instance, but did little to help after the second round. I have regular doses of Intravenous Immunoglobulins (IVIG) but it doesn’t help much. I get reduced spasms and it helps the myoclonus (jerking) but it’s not a miracle cure as I’d first hoped it would be.

Parts of my body are always stiff, parts are always in pain, parts always have pins and needles or neurological pain. It affects my sleep, it affect my life, each and every day.

I also have startle reflex, so a loud noise or something to make me jump, or even an intense emotion can make me go stiff, if I’m standing I may fall, if I’m sitting or lying, it just hurts.

I also have vertigo which can come at any time and last anything from minute to hours. This makes me feel like I’ve just downed a bottle of vodka, but not in a good way. Double vision, dizziness, loss of balance, the rotten stuff.

I could go on and on with symptoms but I don’t want to bore you.

Year Three

Yes, I’m half way through my third year, my youngest can’t even remember the times when I could walk. When I used to chase him around the school playground while waiting for my older girls to come out of school.

People get fed up of you when you are sick for  a long time.  At first it’s concern;

“How are you?”

“Are you feeling any better?”

“When’s your next hospital appointment?”

“How did you get on at hospital?”

Then they get bored;

“Are you not well yet?”

“I thought you’d be walking again by now.”

I’ve even been accused of moaning too much and not getting on enjoying my life.

I’ve even been accused of competing with others for attention.

Yes, people have had enough of me and my sickness.

Do they not think that it would be my greatest joy to announce that I’ve had a treatment that has worked, that my pain has gone and I can walk again? No, for some reason I’m just a miserable old cow because I haven’t gotten any better.

The Future

Despite what some people think of me I have always been a positive person and I’ve approached each treatment with excitement and determination. Yes, it does get me down when it doesn’t work, I don’t think there is anyone who wouldn’t feel the same. I do get into some very dark places sometimes when I can see is the pain and disability and the hurt I cause others. Sometimes I think my family would be better off without me.

Then I bounce back and fill my life with happy things. I start projects that I can get excited about, something to look forward too. Plans, future plans. Even if things don’t get better I can cope if they stay the same. If I get worse then I’ll deal with that too, one day at a time.

I am working with some other Stiff Person Syndrome sufferers to gain awareness for our condition and hopefully trigger more research into diagnosis, treatments and even cures. I am reading studies, finding out all I can and most importantly, learning from others who are living with it. It seems daunting the amount of research I am doing, but it gives me a purpose and hope.

I have also decided on what I want to ask my consultant when I next see him. I’ve found out that there is a drug out there that have helped people just like me to get back some life. I don’t know if he will approve it but I’m going to ask all the same. Also, I will give up the IVIG, yes, it helps me a little but I know it’s in short supply and others gain more from it than me.

If you’ve read this far, then thank you, I know there are people out there who genuinely care. Just as I know I will never give up hoping to get well again.

 

 

Happy New Year!

Happy New Year to all my readers!

I know I’m a little late but we had an awful Christmas and New Year’s Eve, so last night we had our traditional munchies, film and family time and it was much more relaxed and finally we can celebrate the New Year.

Although it was a really tough week I’m happy to report that the kids had a great time. Their little face on Christmas day where all I needed to make Christmas special. There is nothing like that feeling and I will miss it when my young ones grow up.

So, with Christmas over it’s time to start thinking of the New Year and what it will bring. Yesterday marked my second anniversary of being ill. Next week is the one year anniversary of my actual diagnosis, Stiff Person Syndrome with Progressive Encephamyelitis with Rigidity and Myoclonus. 

Next week I go into hospital for the third round of IVIG (Intravenous Immunoglobulin.) The last time it left me with the most horrid migraines that I thought I was dying. Seriously, I’ve been a migraine sufferer for over 30 years and I’d never experienced anything like it. It was also a hemiplegic migraine which meant I also suffered paralysis and my poor hubby thought I was having a stroke and took me straight to A&E.  Next week I am going to be more prepared, plenty of water (at least 3 ltrs a day) and regular pain relief. I am staying positive. The first time I had IVIG I thought it was going to be my miracle treatment and when it didn’t work I plunged into depression. The second time, after the awful migraines had stopped, I did see some improvement. It wasn’t the miracle I seek, but a little relief from some of my symptoms was well received. Unfortunately they didn’t last. I can see myself getting worse all the time and this scares me so much. The life expectancy for someone with my condition is 3 years and I am now into my third year! The good news is that the condition is incredibly rare so it’s difficult to go by the original life expectancy because most of the deaths were in the early days before they had worked out any kind of treatment. Also, most of them had other conditions as well, cancer, diabetes and epilepsy. I don’t have any underlying condition that is life threatening.

Next week I am hoping for less side effects and more positive results, those who have IVIG regularly tell me that it works better each time (but it also stops working after time.) I have to stay positive!

I’ll be honest with you, my positivity has not been around for the past week or so. I wanted to take a break from my blog and social media because I felt that being negative was not the impression I like to give. I like to show my positivity, I’m faced with so much trauma every day but I find sharing positive blog posts and messages helps to keep me focused. However, when you are feeling low and close to wishing this life would end right now, it’s so hard to express exactly how you feel without it looking like you are seeking sympathy, or even worse, trying to make others feel bad.

Sometimes, though, you have to be honest, and honestly I’ve been feeling CRAP. Everyone around me, apart from my little ones, has made me feel sad and low. My illness has been awful, I have felt so so ill, and all the time all I’ve wanted to do is enjoy the holiday and feel the Christmas spirit. And my family has just made me feel worse. I’ve put up with so much sh*t in the past week, too much. If it wasn’t for my little ones I think I would have just given up on everything.

But, my little ones have been my joy in the madness. They have been so happy and carefree. I may have been frustrated with them a couple of times but it was nothing that I’m not used to. Also, my little Star became a young lady over the holiday. She’s really growing up now. I know she is behind in maturity, but some things you can’t delay, and a 5ft 5 inches you cannot think of her as a little child anymore.

So, today is a new day and despite the fact that my arm has gone into an incredibly painful spasm that has now lasted more than 12 hours, I am going to keep plodding on and dig deep because my positivity is in there somewhere. I cannot allow myself to go into this year feeling so low.

I have much to look forward to this year. I am staying hopeful that next weeks treatment will be a good one. Then in April I am going on a fabulous Blogger Retreat which I’m really looking forward too. In August we are having our first 7 day holiday in many years (We usually just have a short 4 day break) the kids are going to be so excited. There are places I want to go, things I want to see, memories I so want to create. If this is going to be my last year it’s going to be great! But of course, it’s not going to be my last year, I’m not ready for this stupid condition to beat me yet. I’m ready for a fight!

It doesn’t matter how many times I fall, I will always pick myself up and carry on. When I did the Activation Game  I exercised being the best possible version of me for a day. It’s always a great thing to strive for, being a better version of yourself, and something that I often try to practice.

How about you?

School Runs and Shopping Trolleys
Debs Random Writings
Naptime Natter



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.