Friday, May 25, 2012

In Sickness and In Health

I remember standing at the altar saying our vows when we got married. Ian always tries to make me laugh, and even then he didn't miss the opportunity. The line, 'in sickness, in health', he gave me a look which had me chuckling a wee bit. I had warned him not to do that. That was my biggest fear...standing at the front of the church, giggling uncontrollably and unable to speak. Somehow, I regained composure and I carried on.

But that wee bit of laughter is a sign of how we've lived ever since, even throughout health issues. Throughout the pain, throughout the hardly able to move days, Ian has always managed to make me laugh. Laughing can be bad when you have trigeminal neuralgia, but that's a breeze compared to laughing when you have a broken rib!

It's probably important to stress that Ian isn't actually laughing at me, but laughing with me. And a bit of laughter while I am in a lot of pain is so good for my mind and soul. It makes life a wee bit nicer. And if he has succeeded in making me laugh, I am sure it has made his life a wee bit nicer too.

I always say that my pain not only affects me, but my husband too. How true this is. For every person who lives with any kind of chronic illness, there is most likely at least one person living with it along with them.



Living with a chronic health condition

It's not easy.....but it's not easy for the partner either

It's frightening......but it's frightening for the partner too

It's stressful.....but it's also stressful for the partner

It affects so many aspects of life.....for their partner too

It affects social life, work life, home life....for both


I don't know where I would be without Ian. He is the one who keeps me strong. He looks after me when I am needing looked after. He is the one who picks me up when I am down. And yes, he picks me up when I fall down! He is my carer.....but he still my husband.

I don't know how he copes. He sees me when my pain is at its worst. He watches me count out my meds every day, sometimes he has to get them for me in the middle of the night. He takes me to countless doctor and hospital appointments. He sees the way the meds affect me some days.......I'm sure I must drive him crazy at times. I drive myself crazy. Like when I sleep most of the day. Like when the words won't come. Like when the memory doesn't remember. Like when I just do plain silly things sometimes. Like when I tripped over my own big feet and nearly landed in the chicken plucker! (Rest assured that I am bruised, but unplucked!)

But he just raises his eyebrows and shakes his head and laughs it off. I'm not trying to say he's a saint. He's not.....but neither am I. But I am extremely lucky. Somehow, we cope with it all together.

Perhaps, along with the meds which we are dished out, maybe doctors should think about our partners too. I know that there is no magic pill to make life easier, just like there is no magic pill to take away the TN. But maybe if partners knew that the doctor was looking out for them too, it could maybe help a little. Sometimes a little care for the carer is in order to make sure they are coping.


Tuesday, May 22, 2012

Beautiful sunny weather here today, so I have been sitting outside. Inside the car, believe it or not. Even although it is sunny, there is still a breeze which I don't want near my face. Breeze and TN do not go well together.

I couldn't take my eyes off the side wall of the house. We have housemartins nesting there. These birds amaze me the way the swoop about in the sky looking for food, all the time chattering away to each other. Every year about the beginning of May they start to appear, having flown here from Africa. Some nests were still there from last year, but there are new birds who start building new ones. They come, they lay eggs, rear their young, then at the beginning of Autumn, they leave for Africa again. This is like their holiday home.

But the part that really amazes me is how on earth do they find their way every year to the same spot? I can hardly make it to my local Tesco without using a sat-nav. I know it's the same for other birds. They travel half way across the world every year. No maps, no AA route planner, no sat-navs. They just find their way.

I know there are several theories including earth's magnetism, position of the moon or the sun. But I don't think anyone really knows. I just think they are extremely clever. Humans are supposed to be the intelligent life on the planet, but I think there are other species on earth which are a lot smarter than us.

Ian used to keep homing pigeons. At this time of year the pigeon racing started. Prior to the racing, Ian took his birds out for a training session a couple of times a week. That involved packing his pigeons in a basket, me packing a picnic, and off we went for a drive. We would arrive at our destination, have our picnic while the pigeons settled after their drive. Then Ian opened their basket and released them. We always watched them as they circled about in the sky a few times, then headed off for home. We got back in the car and drove home, and inevitabely, the pigeons were sitting on the roof waiting for us. They nearly always arrived home before us. As the destination got further, I stayed at home, while he went away to realease the birds. My job was to watch for them coming home, so I could let him know which bird arrived home first.

Pigeon racing became a serious hobby for Ian. He looked after his pigeons, or doos, as they're called in Scotland, with such care and attention.  On a Friday night, he carefully selected which birds would go to the club, to be taken away to a destination and realeased the following morning. The destinations could be sixty miles away, or a few hundred miles away.

Then on the Saturday morning the fun began. The waiting. Nothing was allowed to get in the way of the doo races. We had to be at home for the arrival. Well, Ian had. I wasn't quite so keen. Not at the beginning anyway. But I have to admit that the excitement did grow on me. But I tended to sit in the house looking out the window, while Ian waited for them outside. I could hear him whistling, calling them, shaking a can of peanuts to encourage them to go into the loft. Sometimes, it, or rather he, was a great source of amusement to me and I often put pen to paper, writing poems about Ian and his doos.

Ian's doos actually did quite well and won several of the races. I didn't really take much to do with them. Well, actually, I took nothing to do with them! I wasn't too keen on being too close to "things" which fly. But one Saturday, Ian had to go out and asked me to clock the birds in. I was so nervous, and worried, but I did agree. He kept phoning to ask me if any of his doos were home. Sadly, no, they hadn't arrived. I felt guilty, as if it was my fault. But finally, out of nowhere, a pigeon appeared above me and flew to the pigeon loft. I quickly got the rubber ring off its leg, and put it into the special clock. Then another bird arrived, then another.....

Now I knew why Ian had been so excited by pigeon racing. It did give me a thrill seeing those birds come home from a race. The next time he phoned to see if any had arrived home and I was able to proudly tell him that I had four race rings in the pigeon clock. Later that night we found his birds had taken the top four prizes in the racing club. I was so proud of myself....but all I had done was put the rings in the clock. It was those birds who had done the hard work. The glory was all theirs.

But how, just how do they do it?

Shortly after that race, we moved house, so no longer had the pigeons. But I often sit and read those poems I wrote and remember those race days. Do I miss them? No.....but they are good days to look back on. Even on the worst of days, I can raise a smile thinking of the day I timed in the first four pigeons in the club.

Ian and his Doos
He talks about nothing else. It's just "Doos, doos, doos!"
At least he's not in the pub every night, downing lots of booze
But I am wondering if it's the doos he loves
The way he treats them with kid gloves
He scrapes them out faithfully, checking all their motions
Gives them all that special feeding, never mind the pills and potions
He puts garlic in their water and even gives them herbal tea
Honestly, I’m sure they are better fed than me
He puts them in their basket, then takes them for a run
Then whispers sweet nothings about going to have some fun
"Look, the sun is shining....it really is the perfect day
A nice wee spot in the country," that's what I've heard him say
Then off he goes to the perfect spot with his precious pigeons
And I'm left at home.........timing in the guid yins!
Then he calls on his way back home with sweet nothings just for me
"Are they home yet?"then he asks me what's for tea! 
E.S.






Tuesday, May 15, 2012

The Country Road

There is no denying that living with constant chronic pain is not easy.

Through the internet, I have come to meet many people living with pain. We try to support one another. We try to lift each other's spirits. We just try to help one another.

But from time to time, we all wish we could do the things we used to do and to be able to do things faster. But perhaps we need to learn to take small steps, and in taking those small steps, we will notice the things which people taking larger steps just don't notice. Things they take for granted.

Supposing we all have a destination. We have a choice.....we can go on the busy motorway, get really stressed out along the way about the busy, fast moving traffic, or we can choose to go on the quiet country roads, the much more scenic route. The motorway journey will get us there twice as fast, but that country road is slow. We just never know who we might get stuck behind - it could take forever.

But here we are, the chronic pain sufferers, we have no choice, we can't take that motorway journey.

We must take that country road.

We'll get there just the same. But it will be a much longer journey. But imagine what we might see along the way? We have to take our time. That means we can enjoy the scenery. We can take the time to watch the clouds in the sky. We can take the time to look at the birds in the air.

But most of all, we have time for other people on that same journey. And they have time for us. They might stop to spend a few minutes with us, even though it makes their own journey a bit longer. They might even point out something that they noticed along the way.  And, if you need a bit of help, it is guaranteed that someone will come along and give you whatever you need.  If you break down on that country road, a fellow traveller will help you out. They will understand why you have broken down. They will help you. They will support you. They will let you lean on them until you are able to carry on.

Does that happen on the motorway?

Thankfully, there will always be some people who are not chronic pain sufferers who choose to take that country road along with us. They take it because they want to help the people who have no choice. There are many people out there like that. And if you are one of those people I thank you, because you are making someone's journey a little bit easier.

If you live with chronic pain, I hope that you can find some good points to your journey. Take a look across at your fellow travellers and say hello, because maybe right now, they could use a rest and a chat.



Saturday, May 12, 2012

Coping

I had an appointment at my pain clinic through the week. We were discussing how people have to learn to cope with living with chronic pain, as opposed to sitting feeling sorry for ourselves, waiting for a miraculous cure. We also need to learn to cope with living with a certain degree of side effects with the meds. (What I can’t figure out is why side effects affect me worse some days than other days.....but that’s a whole other blog post)

I think that’s where acceptance comes in. I know I’ve mentioned it before with regard to my back pain. But for any type of chronic pain, I think there needs to be a degree of acceptance in order to cope. If you can’t accept what you have to deal with, you get angry, upset and annoyed with it. All that does is wear you down. Tires you out. And trust me, when you are dealing with chronic pain, you need every single ounce of energy.

It is the same with the meds. They might help, but they also might give us a few extra pounds to carry about. They might make us a bit more tired and a bit woozy. But if they help the pain a bit, then maybe it’s worth accepting those side effects. (Obviously not, if the side effects are serious)



I’m not trying to say that we shouldn’t moan sometimes. We need to do that from time to time. It’s like a release valve. Get it out of our systems.....then get on with living again.

I’m also not saying that we should just accept that we have chronic pain, and curl up and do nothing. But maybe we should accept it, and also accept that there are some things in life that we can’t do any more because of it. But......we can find other things instead. Even if it is something as crazy as writing a blog!

Sometimes coping means using a distraction. For me, a distraction could be anything from watching Britain’s Got Talent to counting just how many sleeping positions my dog can get into in the space of one hour. Literally anything, rather than think about how much pain I’m in. I am still working towards getting back to drawing and painting. I managed it one day a few weeks ago....and I will get back to it again. I will! That would be the perfect distraction for me, but going back to the acceptance part - I have to accept that some days I just can’t even think about trying to draw a straight line.

The other problem nearly all chronic patients suffer from is the feeling of isolation. The feeling that nobody ‘really’ understands. Sometimes they have that feeling even if they are surrounded by loving, caring family, so can you imagine what it must be like for people who live alone with their pain? To be honest, I can’t really imagine how bad that would be. I think that is why support groups are so good. Whether on-line or actual real life groups, I am convinced that they must help people who feel isolated. To feel that there is someone out there who really understands the pain you are in really does make a difference.

So.....you’ll probably think that I’ve got it all worked out now.....no more bad days. Hmmm.....if only.
 I actually started writing this on Wednesday evenening, after my pain clinic appointment. The following day we were out, and my pain got worse. By Friday, I was hardly out of my bed. My face and head were so painful. Today, the pain has calmed down a little bit, but I have that woozy feeling I mentioned earlier.

It's not always easy not to get upset at having this kind of life. It's not always easy not to get angry with this pain. It's not always easy to find a distraction when you're in terrible pain.


But we can only try.......and that's what counts.


Monday, May 07, 2012

Food Glorious Food

A few days ago, my sister asked me if I wanted to join her for lunch today. She was going to be spending an afternoon at a health spa near me with a group of friends, and before it, they were all having lunch together at a restaurant close by. She asked if I wanted to join them there for lunch.

I never really know how I am going to be feeling from one day to the next, and I have come to really hate making plans in advance. Besides, I kind of panicked at the thought of going for lunch with eight people, most of whom I don’t know. And, I have to eat so slowly because of my face, I would probably still have been eating when they were all having to leave for their relaxing afternoon at the spa. I don’t know what would be worse - having lunch with people I don’t know, or being such a slow coach and sitting in a restaurant finishing my lunch myself. So I opted out. I did however enjoy a plate of Ian’s homemade minestrone soup, which is delicious, so don’t go feeling sorry for me.

Eating, when you suffer from trigeminal neuralgia can often become a huge problem. Even drinking can be difficult. Nothing too hot, nothing too cold, food can’t be too hard, too crunchy, too chewy. Some things are just a definite no.
This isn't Ian's ministrone by the way. I have to say that I used
the photo from a recipe on http://www.twopeasandtheirpod.com

I love soup and I practically survive on it. I’m not complaining - I really do love soup. Ian makes most of our soup, and he does make a really good pot of soup, so we always have containers of it in the freezer. But I do actually enjoy the trigeminal neuralgia diet, also known as the ‘soft food diet’. Soup, mashed potatoes, rice pudding, custard etc.

Of course, I do miss some things, especially ice-cream, but that’s just one of those things which I have come to accept. Eating ice cream would be like me going out in a freezing cold wind with no scarf covering my face......in other words, a bit stupid. So no point in crying over what I can’t have.

I suppose it’s just like life really.

Sometimes we waste too much time yearning for the things we don’t or can't have, instead of appreciating the things that we do have. So every time we wish for something, maybe we should take a step back and just look around at what we do have instead.


Wednesday, May 02, 2012

Fairies Have Limits.....But I Don't


Anyone who is my friend on Facebook would have known that over the weekend my pain had been bad again. I did something I don’t normally do, and I actually broadcast it as my facebook status. Well, not quite in so many words, but I’m sure they figured it out.

What I wrote was this -

Joke for the day



A fairy suddenly appeared in front of three women waving her magic wand. "I have three wishes," she said, "you can each have one."

The first woman quickly said that she wished she could have lots of money. Immediately, her mobile phone rang with a text telling her she had all six numbers in the lottery.

The second woman said she wanted to find a man who would love her forever. Instantly, a man appeared with a dozen red roses professing his undying love for her.

The third woman was in so much pain that she could barely talk. "Money doesn't mean anything to me. I already have a husband who loves me. But I live with Trigeminal Neuralgia, just like thousands of other people world wide. So my wish is that you could take away this disease from everyone." The fairy waved her wand. Nothing happened. She tried again. Still nothing. She called fairy headquarters to ask what was wrong. They told her that the third wish had been just too much to expect. Even fairies have their limits.


The moral of this is that you can make a joke out of a lot of things in life. But living with a disease like Trigeminal Neuralgia is no joke and never will be a joke.


Thankfully, I did perk up a bit the next day and I found my smile again. I hate it when I lose that. Having the pain is bad enough, but when I lose my smile too, that’s a whole other story.

So you will be pleased to know that the smile is firmly planted on my face and I am really trying to keep it there. Life definitely seems better when you smile.

Fairies may have their limits, but that doesn't mean that I need to have limits as well. In fact, I think I need to try to push my limits sometimes.

Yesterday, I tried to do that.

I actually drove to town to collect a prescription for Ian who has a chest infection. This was the first time that I have driven for weeks. If my pain is at its worst, I just wouldn’t drive. And some days, the effect of my tablets make me feel as though my head is full of cotton wool, so on these days, I definitely wouldn’t drive. But yesterday, my head felt clearer, so I knew I would manage the twenty minute journey.

I picked up Ian’s prescription, then nipped to the supermarket for a few things. Well, trust me, I landed there just as the local primary schools were coming out. All the Mums had also decided to nip to the supermarket for a few things with all their kids in tow. The noise was crazy. I suffer from constant ringing in my ears. Like fuzzy electricity, buzzing away inside my head all the time. I don’t know if it’s just another one of my ‘things’, or if it’s just another side effect of my medication. But all the noise inside my head plus all the noise of squealing children in the supermarket nearly had me going demented. By the time I got to the cereal aisle, I was ready to scream. So I quickly paid for my shopping, and headed home.

Of course, by the time I arrived home, I was shattered and went straight to bed for a sleep. But I was pleased with myself that I had actually gone out and done something for a change.


I had pushed my limits a little bit.

I know a twenty minute journey to the shops means nothing to most people, but for me, that was quite a big deal. My face is worse today from the cold yesterday, even though I was dressed as if it was the middle of January and not the first of May. That cold was enough to make my face worse. But I am still glad that I went out. I achieved something.  I pushed my limits and it made me feel good.