Sunday, October 07, 2018

Trigeminal Neuralgia Awareness Day 2018


Well, it's here again. That day of the year when we work ourselves silly trying to get awareness.

At End Trigeminal Neuralgia, we used a couple of nice little characters, #MeetTina and #MeetTony, to explain how this condition affects us.



My fingers have been a bit lazy, (kind of like the rest of me!), so they haven't actually written a new blog post. (I know..this is a new blog post, but I don't think it counts) They did write a post for The Mighty though.


My friend also wrote a brilliant post about trigeminal neuralgia. Please read it and follow her blog.

Thank you to everyone who shares posts and supports those of us with this horrible condition.

Sunday, September 23, 2018

How can I smile?

Last week, I wrote a lighthearted post for Pain Awareness Month with some cartoon stick figures to depict my pain - Grand Prix of Pain. Someone left a comment on it to tell me that I wasn’t helping anyone with pain. They said I made it sound ‘too easy’. It’s played on my mind. It was certainly not my intention to upset other people who live with chronic pain.

That post was about my pain and about how I cope with it. And strange as it might seem to some people, a coping mechanism for me is to find things to smile about, and often even laughing at myself and my pain.

What some people don’t realise, is that when I drew those silly little stick figures, I could hardly move. I was having one of those weeks when everything decided to play up at the same time. I could easily have taken myself off to bed to hide under the duvet and cry  all week, but I didn’t. I got this idea into my head about writing that post and it kept my brain occupied. I still hurt. I still could hardly move. But I enjoyed writing that post. I smiled to myself as I drew those stick figures. It got me through some tough days. That wee bit of distraction was part of good pain management for me last week.

But I’m human. I have my moments when I struggle too. There are days when I do hide under the duvet. But even on the hardest of days, I still try to smile.

Smiling is important to me. And smiling, despite my pain, is especially important to me. I don't think I could cope otherwise. I hate to imagine life without smiling. There is always something in my life worth smiling about. 

When I write about smiling despite my pain, I am not in any way, undermining other people’s pain (or my own). I am simply talking about my life. And yes, I also hope I might pass something along to someone else and give them reason to smile too. So today, I am smiling at you. If you are reading my blog, I am smiling at you. And I hope you can smile back at me.






Saturday, September 15, 2018

Grand Prix of Pain

September is Pain Awareness Month.

I can't ignore it, can I?


I was going to write about coping, about not being defined by pain, but I changed my mind and decided to write about living with multiple painful conditions. If one pain has a day off, there's always another pain waiting to take its place. And they can often affect each other, a bit like the domino effect. But often, it is as though they compete with each other to be noticed.

Here's my lighthearted (but fairly accurate) view of chronic pain -












I hope you enjoyed this post and find some S.P.A. today.


Disclaimer - No stick figures were injured in the making of this post.


(The stick figures would love you to leave a comment below & share this post, but they're too embarrassed to ask themselves. So I'm asking on their behalf. Please...it will make them smile even more 😊)


Wednesday, June 20, 2018

It Takes a Village to Raise a Child...

Nobody knows the origin of that saying. It may have been an old African proverb. Or it may have been a Native American saying.

It doesn't matter who said it first though. What matters, is what it means.

It means we should all look out for children. Our own children. Our neighbour's children. All children. It means we all have a responsibility to ensure a child is safe.

It means that we shouldn't stand back, turning our heads, ignoring something which is harmful to a child.

We live in a village.

It's called the world.

And we are not doing a good job at raising children. It is up to us to look after all children, world-wide. Whether in our own country, or another country, we need to look out for them. The children's welfare should always matter. It should always come first. We should never stand back.

But we are standing back while the USA, one of the world leaders, is separating children from their parents and locking those children inside cages in warehouses. 

It is argued that the children are being looked after and they are safe. They have bedding comprising of a thin mattress on the floor and a foil blanket. Bright lights are on day and night. Older children are having to look after young children. Toddlers. Babies. Teenagers changing children's diapers. Trying to comfort and console them because nobody else is there for them.

That's not being looked after. It's not being kept safe. Those children are frightened, crying for their families. They are terrified about what will happen to them. Distraught and traumatised, they will be left with emotional scars from this.

If our neighbours were keeping their children like this we wouldn't turn our heads the other way, would we? If our neighbours were keeping their pet dog in a cage, most of us would be up in arms.

World leaders are keen to say it's not right. They are keen to say it wouldn't happen in their own country. But that's where it stops. They don't want to upset relationships with the USA, so they don't condemn it officially and do something about it.

I know most people are disgusted and appalled by what's happening. And that includes most people in the USA. People are angry and trying to act by protesting, writing to politicians and getting media attention.

But a minority of people don't seem too upset by it. They say it's right, because the parents shouldn't have crossed the borders in the first place. Seriously, where are those people's hearts?

Some people seem less concerned about the children and more concerned about trying to push the blame of what's happening onto a previous government. They'd rather keep Trump's name safe than look out for those children.

For the record, it wasn't a previous government. But right now, that doesn't even matter.

What does matter is that somebody needs to make it stop.

I know there are people who think the rest of the world shouldn't interfere in things like this. But we should. We interfere in plenty of other countries affairs. And I would expect other countries to interfere if the same thing were to happen here.

We should always interfere. We should always get angry and act. We are all part of this huge village. And it takes a village to raise a child.



Just before publishing this post, I have seen on the news that Trump has bowed to pressure and has stated that he will sign an Executive Order to end the child separation policy. I hope this does really happen and happen quickly.

Monday, May 14, 2018

Coeliac Disease

Until six months ago, I didn't really know much about coeliac disease. I presumed it was a stomach disorder which had people rushing to the loo.

Then I discovered there was a lot more to it.

I had been in and out of my doctor's surgery so often that they were on the point of inviting me to their Christmas party. My symptoms were many and varied. As well as all my usual back, rib, face, head and joint pain, I also had (still have) other neurological symptoms such as strange tingling sensations and numbness. I felt so tired all the time and I had weird heart palpitations. My doctor was doing her best to try to investigate all my symptoms, then she struck gold. Blood tests came back revealing deficiencies in several nutrients including vitamin B12, phosphate and folic acid. That made her think there was a malabsorption problem and she decided to check for coeliac disease.

I thought surely not. Coeliac involves the stomach. My stomach was fine. Well, kind of fine. I often felt really bloated, but a lot of people are like that. I was always constipated. But I'm on a lot of medication. So, no, surely I couldn't have coeliac disease.

Another blood test revealed that she was probably correct, but I needed further testing. I was sent for an endoscopy, which meant a tube with a camera was put down my throat into my stomach. A biopsy was taken and a few weeks later I had the result that I had severe damage to the lining of my stomach which was caused by eating gluten.

The test had confirmed that I do have coeliac disease.



There are little Christmas tree shaped things called villi on the lining of your stomach which help the body absorb nutrients. My little Christmas trees were flattened, so I'd not been absorbing nutrients. I had a healthy diet, but it wasn't doing me any good. And that was because I ate gluten. And the cure was not to eat gluten.

It was explained that coeliac is an autoimmune disease. The body attacks itself when gluten is in the diet. It can cause stomach problems and malabsorption of nutrients, which can lead to things like osteoporosis and neuropathic problems. And if it goes undetected, it can cause bowel cancer.

Apparently it is a lot more common than people realise. About 1 in 100 people have coeliac disease in this country, but that number may be a lot higher if people don't really have the stomach symptoms, so don't get tested. If someone has it, there is a 1 in 10 chance of a close family member also having it.

Since my diagnosis, I have not intentionally eaten any gluten. That sounds pretty simple - cut out bread, cut out weetabix, cut out biscuits - sorted! No, not quite that simple. Wheat, barley, rye and a few other cereals are the culprits - and they are to be found in so many foods. Sometimes unexpected foods. Like beans, bisto, soup, sausages, corn flakes, crisps, chocolate (yes, chocolate!). I have had to become an expert label reader. Sometimes it's just a 'may contain traces' on the label, but those traces will do damage.


If I go to a restaurant, it's a panic! They often serve gluten free food, but there is normally a disclaimer on their menus about the food being prepared next to non gluten free food, so cross contamination could be a problem. Those are the restaurants that know about coeliac. Other restaurants will say, "don't worry, the gluten's been burned off in the fryer" or "see you folk with your fad diets!" Gluten doesn't burn off and coeliac disease isn't a fad diet.

The cross-contamination issue is a big one. I need a separate toaster for my bread. Separate breadboard. Separate butter. No double dipping the jam or pickle spoon. If I touch my husband's normal bread, I need to wash my hands just in case a crumb makes its way into my mouth. If I accidentally eat a single tiny crumb of glutenous toast, I'm in trouble.

I didn't have stomach symptoms before, but I do now. My little Christmas tree-like villi are starting to recover and are enjoying a gluten free living space. But if the tiniest grain of gluten gets into their happy home, they are not quite so happy and like to let me know fairly quickly.

So looks like this silly yak is on a gluten free diet for the rest of her life.

Monday, September 04, 2017

Under the Weather

On the radio today, there was a discussion about conversation starters with strangers. The 'expert' said that people in the UK often talk about the weather but in other countries they never do, simply because their weather is more consistent. As I was driving in torrential rain at the time, I thought, no, Mr Expert, you have that wrong. Our weather is pretty consistent too. At least, here, in Scotland, it is. It's been consistently bad for a long time. Summer? What summer? We're now into September and it is definitely wintery. Miserable weather. No wonder we talk about it.

I do remember we had two nice days. The problem was I was in hospital and couldn't enjoy them. The sun decided to make an appearance while I was attached to a drip in the Borders General Hospital. I'm not going to complain though, because I had a scenic view and was well looked after. I even received a lovely phone call from afar, which caused great excitement to the staff and other patients as much as myself. The worst part was at night....why are hospitals so noisy at night?




My stay there really wasn't too bad. In fact, I liked it so much that I stayed another night a couple of weeks later. My GP was concerned about my level of post surgery pain, so had me readmitted. Turned out I had a broken rib. And no, I have no idea how I came to have a broken rib.

So, that was my summer taken care of. And now, here we are in September, looking as though we are jumping straight into winter. I'd like autumn. I like autumn colours. Actually, I love autumn colours. I don't want to jump straight into winter.

Sunday, April 16, 2017

Memories

I remember after moving here, all the family loved to visit. It was the place to make memories. Paddling in the river. Feeding the ducks. Watching the lambs. Barbecues. Picnics. Easter. Never Christmas, because the weather never complied. (But one year we did Christmas, complete with tree, decorations and turkey in April, just to prove Christmas could be celebrated anytime.)

It was decided that there were no better hills for Easter egg rolling than the hills where I live. One of my favourite memories is when my niece and nephew (and the adults) spent the morning painting boiled eggs. We created masterpieces, but if my memory serves me correctly, my Dad’s was best.

Ian drove up the hill on his quad with the boiled eggs. With my Mum on the back of the quad! Yep, my Mum, in her seventies, on the back of a quad for the first time in her life. She was game for anything. Oh, how I miss her. I have a picture in my head of her that day on the quad…she was loving it. She always put her faith in God. That day she put her faith in my husband instead, and he didn’t let her down. I knew he wouldn’t. I'm sure there is a photo of my Mum on that quad with Ian, but I have searched and searched and can't find it. Maybe there never was one...maybe the picture was only ever in my head. I'm sure this photo was taken the same day.



So the eggs were rolled, the kids ran to get the eggs, but my dog, my lovely Red, chased after the eggs too. He beat the kids. I also have a picture in my head of Red that day, running after those eggs, laughing. He loved to laugh. I stood at the bottom of the hill shouting not to let him have any more eggs. Everyone laughed at me…‘Leave him be…he’s having fun!’ Yes, he is, I thought….but I’d need to live with the result. Oh, our house certainly didn’t smell of roses for the next couple of days.

It was a fun day.

Everything has changed since then. The kids have grown up. I no longer have my Mum. I no longer have my Red. But the memories stay.

I like to remember days like that. I know they won’t happen again, but remembering makes me smile.

Memories are wonderful, aren’t they?