Wednesday, March 28, 2012

Patient or Carer???

Last week was a really bad week with my pain and by Friday night, I really didn’t know what to do, because the pain in my face and head was extreme.

Thankfully it started to calm down over the weekend.

By Tuesday, when  I was feeling a good bit better (isn't that typical), I had an appointment to see my GP.

I am sure her other patients must hate me. I must have been in her room for a lot longer than the allotted appointment time . She has increased my Tegretol now to the maximum allowed dose, and she is looking into another drug, should the Tegretol still not work. The problem is trying to work out how the new drug would work alongside the drugs I am on already. She'll figure it out. She tries so hard to help me. I can see in her face that she is actually disappointed when the meds don’t work.

Back at home, my husband.......well, where would I be without him? He’s down to earth, not all slushy and gushy, but when I am needing his help, he is right there. Getting tablets, making sure I eat, trying to help in whatever way he can. But most especially, trying to take my mind off the pain and still trying to make me laugh. I am so grateful for that.

But anyway....two carers. One, my GP; the other, my husband.

Now, obviously, I couldn’t trade places with my doctor....I don’t have the qualifications for that.

But my husband, I have to say that I would never, ever want to trade places with him. I would rather keep the pain than give it to him. I would never want to give him my pain, just so I could be pain free. Never.

Besides that, I would hate to do the job he does. I would hate to be the carer of a loved one. I don’t mean that I would hate to do the physical job of looking after my husband. Of course, I would do that. I would do whatever I was physically able to do for him.

I would hate to watch my husband suffer from the pain of Trigeminal Neuralgia or some other form of chronic pain. I would be crying seeing him in that pain. I couldn’t try to distract him by making him laugh. If he was in so much pain that he was almost crying, I would do the crying for him.

So no matter how bad my Trigeminal Neuralgia or my back pain ever gets, I would rather take the pain than have the tables turned and watch him suffer from it. The physical part of caring is not the issue. It is the emotional part of watching the person you love most in the world suffer, knowing that you can’t rid them of their pain.

His isn’t an easy job. And I really don’t think that spouses or other family members who are carers get enough credit for what they do. At times, it must be physically tiring. But it also must be emotionally exhausting some of the time.

By the way, my husband doesn't read my blog, so I'm not just writing this so that he will read it and know that I appreciate him.  I am sure he already knows that. And the reason he doesn't read it - he says that he lives with me, he sees my pain every day. He copes with it all, but if he were to read my blog, actually read about my pain in black and white, he reckons he would hit a breaking point. Then he couldn't cope.

The chronic pain patient doesn't get it easy. But I believe that their carer doesn't get it too easy either.

Thursday, March 22, 2012

Telesales People

Don’t you just hate them? I certainly do.

I really hate them. I even registered with the Telephone Preference Service so that I wouldn’t receive any of the dreaded phone calls. But we have had a lot slipping through the net recently.

“Just doing a quick survey.....will only take five minutes of your time” Those five minutes are precious to me. I could be sleeping. Or eating. Or doing anything other than answering my phone to someone I don’t know.

The worst one is, “We’re in your street and so many of your neighbours are getting double glazing, would you be interested?” my street???? I don’t even live in a street. I don’t have neighbours.

Seriously I don’t like getting them. They make me angry sometimes, and I am not an easily angered person.

I got one call last week and I suddenly went into school teacher mode (I have never been a school teacher, but maybe  I discovered a new talent) I had the phone by my side, so I picked it up as soon as it rang. The young man at the other side obviously didn’t realise that I had answered. He was having a conversation with a friend or colleague. There were a few swear words in the conversation. After my second hello, he realised I had answered and started his little prepared speech. “Good afternoon, Mrs S. I am calling on behalf of blah, blah, blah....” I told him that I wasn’t interested, then he was polite enough to tell me that he was sorry for taking up my time. There was no deflation in his voice. He was obviously used to being rejected.

He was about to hang up, when I asked him to hold on a minute. Maybe he thought I was having second thoughts. Maybe I was interested after all. But he was wrong. I told him off for his language at the start of the call. I said that in future when he is making calls and waiting for them to be answered, that he should NOT engage in conversation with someone else, and he should definitely NOT swear. At first he told me that he hadn’t been talking to anyone. He didn't swear. “Yes, you did,” I told him. “I heard you! As soon as I picked up the phone, I heard you talking and you WERE swearing.” At that point he apologised. He had been caught. I said that I was only telling him so that he thinks about what he’s doing before he makes his calls. He couldn’t get off the phone fast enough.

And I would have imagined that there is a big red cross next to my name now with the words DO NOT CALL THIS WOMAN!!!

But no.......we’re still getting them.

Just got one earlier. I’m having a bad pain day, so I really wasn’t in the mood for answering the phone. It was some solar power company. I said I wasn’t interested, but the woman insisted, telling me it it wasn’t a sales call. Just an information call! But if I want information about something, I Google it. I told her that I still wasn’t interested and hung up.

Maybe I should have given her some information about how bad my face is hurting. How much it hurts to talk. Then she might have hung up on me instead of the other way around.

In fact, maybe I should take their numbers and call them back.

“Oh, don’t panic, it’s not a sales call," I could say, just to copy one of their own lines. "I’m only calling to give you some information about Trigeminal Neuralgia. In fact, if you have a free day, I could come and give you a demonstration.” Then I could go visit them. Kick them in the face several times. Pull a few teeth with pliers, then take out that vice. “Now, just stick your head in here, please. It won’t take up too much of your time.......”

Sunday, March 18, 2012

Mother's Day

It's Mother's Day here in the UK today.

Another one of those days for people who no longer have their Mums to sit and think, "I wish....."

Well, actually, it doesn't take Mother's Day to make me wish that my Mum was still here. That happens every day and I don't suppose I'll ever stop feeling like that. I loved her so much and I miss her so much.

But I still consider myself so lucky that I did have my Mum for so long. I was in my early forties when I lost her....not everyone has their Mum for as long as that. So I look back and I appreciate every moment I had with her.

She was very special and I was very lucky.

I still am lucky.....I have been married to Ian for nearly twenty years. After I had been going out with him for a wee while, he took me to meet his Mum for the first time. I was a bit nervous, but when I met her, I found I had no reason to be nervous. I just felt relaxed in her company. Ian and I got married, she became my mother-in-law, and the bond between us has grown so much over the last twenty years.

She has always been there offering help. An ear to listen to me, and a shoulder to lean on any time I've needed it.

I remember being in Ian's Mum and Dad's house on the morning before we took my Mum to the Beatson Hospital in Glasgow to see the cancer specialist. We were trying not to expect a miracle, but we still really hoped for one. I stood on the doorstep before leaving their house, and Ian's Mum gave me a hug, which I will never, ever forget.

Being in her arms,  I felt like I was in the safest place in the world that day. She was trying to hold back her own tears and she told me to go and be strong for my Mum. And I did try my hardest to be strong for my Mum that day, and over the following few weeks. But at that moment, that morning, I just wanted to stay in her arms forever.

She is very special and Ian and I are both so lucky. We both love her so much.

Nobody can ever replace my Mum. But nobody could ever replace Ian's Mum either.

Mums are extra special friends
Who are always there for you
They are there during the good times
And the not so good ones too
They are proud of your achievements
And hold your hand if you are shy
They laugh when you are laughing
And hold you close while you cry

Mums are extra special gifts
And I am so lucky to have been given you
Because I couldn’t have had better
And I know for sure that's true

So.......back to Mother's Day.......a day when people are meant to show their love and appreciation to their Mums. But in my mind, people shouldn't need a special day on the calendar to show that.

That should happen all the time.

Tuesday, March 13, 2012

Word Of The Day - JINX

And it wasn't used in Scrabble.

No, quite simply, it's me. I am a jinx.

Well, I had a few better days since my last med increase. My GP increased my Tegretol, and prescribed it in the slow release form. After a couple of weeks, I felt a difference. In fact, I was starting to feel like I could get my life back. I had less pain in my face and it felt so good. I even managed to do some drawing a few days ago. The pain hadn't gone, I don't expect it ever to do that, but it was better.

My only problem......I actually had the audacity to tell people.

I wanted to share it. I wanted to share it with people who care about me. I wanted to share it with people with the same problem, in the hope that maybe my combination of meds could help them.

Of course, after telling people, the pain has come back with a vengeance.

I suppose it's just like saying that we are having lovely weather, then we get rain the next day.

I just hope that this little nasty spell is just a little glitch, and I'll get my good days back. Please.....I did enjoy them. I didn't abuse it. I didn't go out in the cold or anything like that. I didn't eat ice-cream.

But, hey, it was nice while it lasted!

It was good, a few days with a bit less pain
But maybe I should have used my brain
But instead, I was happy, and wanted to share
So I told some people, the ones who care
It's happened before, so I should know better
But, no....I had to spell it out, letter by letter
Like I said, I was happy, and I wanted to share
Then it comes back like a's so unfair!
I shouldn't have said anything, that's what hubby thinks
And I have to agree.......I am a JINX


Thursday, March 08, 2012

Country Living

We live out in the country. I mean, REALLY out in the country. Our nearest neighbours are, in fact, not very near.

We love living rurally. I know it’s not everyone’s cup of tea, but it certainly is ours. We have learned to cope with bad winters. We have learned to stock up on basic provisions so that we don’t run out. And if we do occasionally run out of milk or sugar, it’s no big deal to us. We just do without. Petrol is too expensive to make a trip to town just for some milk. We wait until we have another reason to go out. I could have a hospital or doctor appointment, so we turn that into a shopping trip too. Or if we are visiting family, we always do a shopping then.

There are a couple of downsides to living so rurally. In order to get television, we need to have Sky TV, otherwise we would be watching snow on television all day. But with analogue television disappearing, most people are having to pay for Sky or something similar anyway. So I don’t suppose we are really any different from everyone else in that respect.

The other problem was a harder one to deal with -  getting an internet connection. We live too far from the telephone exchange so normal telephone line broadband wouldn’t work for us, meaning that we had to use dial-up to get online. Can you remember those days? You could actually hear the number being dialled. You even heard it ringing out.  And sometimes you were met with that dreaded ‘failed to connect’ box. Oh, it used to drive us nuts. And, of course, it meant that our phone was always engaged, so it also drove everyone else nuts too!!!

We thought there was never going to be a solution to that problem. 

However, suddenly, a few years ago, a solution seemed to be on the horizon, thanks to the Scottish government, who decided that broadband internet should be accessible to everyone. Eventually we had the chance of getting satellite internet. It seemed very expensive compared to normal broadband, but we felt as if we were getting all our Christmases at once. Finally, we were able to get online at a reasonable speed like the rest of the world. Due to my health problems, I am in the house nearly all the time, so I love my internet. Most of my friends live inside my computer! Hubby loves the internet too. However, I think that is more due to an eBay obsession ;-)

We frequently get phone calls from BT asking us to join their broadband. You would think that they should know by now that we can’t get it. That it is physically impossible to get it. It is their telephone exchange after all!

The last phone call from them was just a few weeks ago. I explained to this lovely young man that I would love to have their broadband, but unfortunately, we live too far from their exchange. But he insisted that things may have changed since we last tried! “Hmm....well, my house hasn’t moved, has your exchange?” I asked him. He did finally realise why we are not able to get normal, telephone line broadband, and said he would put a note on our file to prevent further phone calls. So did the last guy. And the one before him. No doubt, we will get another phone call from them soon.

So, until such times as the telephone exchange moves closer to us, we consider ourselves lucky to have satellite broadband, even though it costs an arm and a leg.

I really wish it didn’t cost an arm and a leg. I’d like to keep them. I’d rather it cost my face.

Actually I’d happily give them my face. But I don’t suppose they’d want that. Seems they only deal in arms and legs!

Tuesday, March 06, 2012

Directions Please???

I’m getting there.

That is something I say a lot.

I don’t have a clue where there is, but I am forever saying that.

People ask me how I’m feeling and I have noticed that I often say, "I'm getting there."

And if they ask  how I am when I am having a really bad day, I tell them how I am, then I always finish by saying, “don’t worry, I will get there!”

But I would really like to know where there is.

Any answers? Suggestions? Anybody?

Because if I know where it is, then I might actually be able to get there!

But not to worry, if nobody knows, I'm sure I will still get there....might just take a little while longer.

Saturday, March 03, 2012

Taking In The Sun

Today, the sun is shining here. A freezing cold wind blowing outside, but right now the sun is shining. I love just standing at the window, taking in that sunshine. I feel like I am giving my body a wee boost. Most people go on a summer holiday for that. But I am quite happy to get that sunshine through the window of my house.

Holidays, I think, are a thing of the past for me. It’s not the actual holiday which is the problem.....just the getting there.

I remember one time going on holiday, many, many years ago, I was getting airport assistance. At the British airports, that meant a wheelchair with someone to push it. In Amsterdam, where I had to change flights, it meant going aboard an electric buggy and a woman driving at a great speed. I had to say goodbye to my family, and I could only hope that I was deposited in the correct departure lounge to meet up with them again. 

The woman who was driving looked at me, and told me I looked good. It was one of those looks that said that she thought I looked too well to be needing airport assistance. I actually thanked her for telling me I looked good and left it at that....she didn’t need to know why I needed airport assistance. She only had to get me to the correct departure lounge.

Actually, I felt lucky, in fact, privileged to be starting my holiday on one of my better days. It could have been the opposite, so I was grateful to be looking good.

Obviously I needed airport assistance due to my back and my inability to walk about two miles across Amsterdam airport. Assistance wouldn’t have been given for my Trigeminal Neuralgia, since obviously I don’t walk using my face. (Although sometimes it feels like somebody is walking ON my face!)

But people do look at you sometimes and question whether you are really ‘sick’ or have a disability. People can often see that my back is painful by the way I am walking. But when it comes to my face.....nothing shows. Nothing at all. And considering the pain, I wish people could sometimes see it. It must be hard for people to understand how much pain someone can be in when they cannot see anything. I know all my family and friends try to understand it, but other people really can’t get it.

It’s like you break your arm, you have a plaster.

You get a bad cut, you get stitches.

Even if you have the flu, people can see that.

But Trigeminal Neuralgia and other invisible illnesses don’t have anything to show for themselves. So sometimes people can look at us and tell us we are looking well. Other than walking about with an axe through my head, and a drill in my teeth, nobody would know that I have any form of facial pain.

But you know what.......even though I might be feel absolutely lousy inside, it is still nice to be told you’re looking good. Especially at my age!!! Though I guess that's nice at any age.

Anyway, enough writing for today.

Off to take in some more sun.