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Explains that flare ups can be frightening to the point that you can be worried about being able to get to the toilet.
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Well it happened the other day there. I just didn't move. I hardly moved. I just stayed home and sort of molly coddled myself, for want of a better description.
Before, in the early stages, I didn't do that so much because I kept on thinking “Well, if you do this, you know, you're going to be like this for the rest of your life. You're not going to be able to do anything and everyone will think you are useless and so on and so forth” but after you've experienced a few times, like there have been times in the last few years like as late as last year when I couldn't move. I couldn't walk. I was worried about I was in so much pain.
I'd walked up a hill to get to a friend's car and it just knocked my SI and hip out and I couldn't move and I was worried about not being able to get to the bathroom. I was worried about soiling my own bed and lying in it because I couldn't move. That didn't happen I am delighted to say, but the panic of something like that is just, it's frightening, so in the few years, the last few years I've gone through a few occasions like that and when I have it's always made me resolve, on the days when I can move, my goodness I'm going to move as much as I can.
Now that's sometimes not always smart because sometimes you do it too much but you know you just learn, I've learned to pace myself but it's taken a long time and I'm amazed how, I'm astonished at how long it's taken me to learn this but I suppose it's a conflict of emotions going on all the time, you know. |
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When she has a flare up she tries stretching and taking a bath but says that sometimes a good cry can be therapeutic.
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Right, so you withdraw into yourself but rather than just sitting there feeling miserable if you can stretch like even if you can, if you cannot stand like supposing you are just too sore to stand I will preferably get into the bath tub and stretch, but I have trouble getting out so it's not always advisable these days.
But I pour a bath and get in and stretch and luckily in Scotland or in Britain in general as opposed to the United States, the bath tubs here are nice and long. Bath tubs in America are never long so... but if you, if for some reason you cannot do that, if getting into a bath tub just seems like too much of a, too much like hard work, just stretching out on your bed and especially moving your feet and, without any pain, you know, don't do it if it hurts, but just stretching anything you can to me is the best way to go.
That's the way and give in to the tears. If you are all by yourself give in to the tears. Or even if you're not by yourself if you've got a loved one that can relate to you let them see it so that they know what's going on. But, I think, tears are therapeutic. |
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Her doctor was not helpful when she was having problems gripping her walking stick but the nurse was more help.
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When I went to my GP I said that “Did he have any suggestions because when I was using my stick my hands will no longer grip properly.” It's just a regular walking stick but metal, you know, with the ridged handle. And that's fine if you've got a half decent grip but if you don't.
And he was very dismissive. “Well that's what it is. That's what we have”. And I said “There's got to be something else. This has been in fashion for a hundred years. There must be other people like me.” So what I'm saying is that I had to be very pushy almost and he finally said to me “Well, make a 20 minute appointment with the nurse” and, but I mean, he didn't volunteer that I had to kind of as I say get a bit, you know what I mean, why didn't he tell me that in the very beginning. You know when I mentioned it. Why did he say “Oh there might be something, get in touch with the nurse because that's what they deal with”. No. It's just that's it. That's what we use. Well, you know.
So anyway I eventually did get in touch with, I was able to make an appointment with the nurse in the surgery and they made enquiries and there is, there's a special, there is a special walking stick just for people like me that cannot grip. |
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Finds it painful to shake hands which inhibits her with people she doesn't know very well.
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I don't go out as much as I would like. I really don't but, I... and I'm still frightened of... I'm still very frightened, like when we were... one of the things that I would love someone to tell me and this is some, one reason I'm going to go along to the support group is, how can I communicate to someone, “Excuse me, I won't shake your hand because it hurts me so much”.
How can I say that without making myself sound like a whinger? I don't know, I've never come up with a suggestion. With friends, close friends I give them a hug. It inhibits me as far as mixing with the opposite sex is concerned. I don't really feel comfortable about... I'm alright speaking on a surface level with them, men, but the very thought of telling someone that I'm just one big ache.
You'll have to, you'll have to bear with me if I suddenly can't move or something like that. It's just frightening to me. That really bothers me. The social aspect or the lack of social aspect is very difficult and I have no family so but I do have good friends. But it is still very difficult. |
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Advises people to make notes and book a double appointment with their GP if they have a lot to discuss.
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What advice would you have for somebody going to their GP and asking for help?
Is, the advice I would have is before you go perhaps make a few notes about how you really, really, feel. And perhaps even in the beginning when they are speaking to them ask the doctor “Do you specialise in pain?” Or, you know, approach it, you know, be quite, go right into it and say “Have you, you know, are you familiar with people who have a lot of pain or have you any expertise in that area, because I really feel that it's debilitating me in my, in my everyday life and I think I need help.
How to deal with it and I know there are pain support groups, but on a practical level I may need some different kind of help and I was wondering if you have any other suggestions.” But be strong.
But I think writing it down, because you know what else just irritates me and I know they have to do it and I know everyone's under a time constraint is when you go to the doctor and that, people are typing into a computer and you don't know whether to stop saying what you're saying or ask them. I think it's better to stop when they are typing. That's what I would do now. I just stop, stop speaking. In other words, stop telling them what's bothering you and then hopefully they, so that you have their undivided attention, I think it's very important.
And perhaps before you go to the GP, before you see the GP, you might have to ask for a 20 minute appointment, you know, and if the receptionist or whatever goes “What do you mean a 20 minute appointment” You say “I have some discussion with the doctor and I don't want to, it disrupt the whole patient schedule”. That's the biggest, it's the time. So ask for the time and make sure that you get your what's wrong over to him or her and ask for their help. |
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Advises people to stretch every morning and try swimming or even just walking in the water as exercise.
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Just what I've said try and, treat yourself as best as you can and stretch everyday. As soon as you wake up, stretch. The first thing anyone should do with chronic pain is stretch before you even, I stretch in bed before I get out of bed. Do you ever notice a cat or a dog, especially a cat, a cat never jumps up unless they are frightened but when a cat is you know they always go “aaaaahhhh”. I do that in bed and then I just think, doing things that make you feel happy that's the best.
Planning things. Plan your life don't say “Oh well, you know I might be in a lot of pain that day I won't do that”. Make the arrangement or make the commitment and then plan your life as best as you can to be you know to be available in fit form. And the water.
Go to the swimming pool, swimming or just walking in the water or do anything in the water but just get in there because we are weight less in the water and you often find you can do exercises in the water that you cannot do on land. And I think that's good because it makes you feel better about yourself, you know. |
