Jane - Interview 19
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Jane has osteopenia and wants to keep the strength she has gained in her bones. She wishes she...
And then if the change of life just comes along and, and I know loads of like friends who’ve gone through the change of life who’ve never quite noticed it. So if it’s a secret one, then I’ll have another loss of bone. And so the pre-emptive side doesn’t happen in hospitals. Doesn’t happen with consultants. I think they’re reactionary but not pre-emptive. And so if I was a consultant I’d be thinking, “We’ll get her before it goes.” Or, and I know the, I can’t say their names but the bi -, the Fosamax things, they don’t give me them because I can have a baby. Whereas I’m quite happy to get sterilised. Because I couldn’t go through another pregnancy, ever.
After her spinal fractures Jane was allocated six twenty minute sessions of physiotherapy which...
I’d always been quite physically fit and quite adventurous. And then found out that I could do nothing really. And then was quite scared of not being able to do anything. And terrified that if I did anything I’d probably end up fractured. Because at the time I still, I’ve still a low count on the osteoporosis. And so I did nothing really. And I did have a physio but physio lasted for six sessions or something and then it would be, and then it would be over. And so there was no long term and I was also introduced to the word chronic. Which puts me in a category of, I don’t know, I felt as soon as the word chronic was introduced it’s almost like not a quick fix person.
And so the physio came at six week spurts and because a few of my fractures were in my neck, because I’ve got, I’ve five crushed vertebrae, the one in my neck, because everything’s inter-related, just used to affect how I’d move. And so I could do something and get caught in a spasm and think I’d fractured and get into a panic. And then get six weeks’ physio, which is six sessions and then get a bit better and then put back on the street and then the same would happen. So there’s never a kind of if you do this, like if you did a regular Thai Chi or a regular low impact sport, although in my head I know I’ve got to do high impact in order to keep the osteoporosis, but there was never any kind of just very straight forward medical cleverness about how just to keep as well as you could, bearing in mind that everything you did was painful.
And the fear factor was, will I fracture? Or is this normal? Or is this, because all the pain’s quite new. And so I’ve probably lived for about two years in kind of terrified mode.
And then physio was, physio and stuff was really helpful but I think having to get to physio is quite traumatic really. And, so even here, now, if I get, if I do something to my, my back or my neck I’ll get physio but it takes me something like one hour and 20 minutes to get to physio for 20 minutes physio, and then I just weigh it up and it’s not worth going. And so I don’t know if you can do home physio, which I know sounds quite a bit, or, or group physio in doctor’s surgeries, or something. But, physio’s kind of quite hard to get actually to if you are physically not able. And so, I don’t bother with it anymore.
So it’s the time that takes and the distance …?
Well it’s the, it’s the distance, it’s getting on a bus and, and being jiggled along. By the time I get there it’s kind of already feel knackered. And then the physio kind of, if it had begun at the beginning of the process would have been all right, but, and then I’ve got to get home again. And I suppose the weirdest, I just look normal, I just look like a normal girl. So I hop up off a chair when anyone older than me needs a seat. Or, or you know, so you just, I like the fact that I look normal but inside of me I know I’m not normal. And I know I’m not as bad, you know, but it’s just, yeah.
So it the effort that it takes you in term of time, and like …..?
Just pain really, because it’s not the time. I’m quite willing to do the time, but I know that, I know that, like if there’s physio was along my high street, they’re not NHS I’ve got to pay for them. And they see physio as very long term whereas NHS physios, it’s only six weeks. So, I don’t know what the difference is other than money really.
Janes pain affects much of her day-to-day life and as a result she feels that she is different...
Jane is concerned about exercising because she is frightened of falling and causing fractures.
So I do Pilates and stuff. And, and so when the teacher goes, “Has anyone got any health problems?” I actually don’t say now, because it’s, they, I know that I know it better than what they do, as I know what I can do and what I can’t do. But I knew, if I knew that I did that every week of my life that I’d get more flexible, which I’m not getting any more flexible, then you know that you could do something that was like long term going to help you.
I can’t usually do much but Pilates is good because it, it’s supposed to increase your core strength. And because I know mine’s very weak, so I work at probably a third of the level or everyone, and I brace with every movement that I do anyhow, generally, but I can’t, like my knees won’t bend any more so I can’t do any positions with a bent knee. I look a bit kind of ridiculous. And then anything to with sit up, which is the, using the whole stomach muscles that have never worked since I had a baby, I know that’s always, there’s a bit in my head that goes, “I wonder what’s going to happen with my back?” And then if I try to forget about it, then it works better. But I predominantly have like a fear, of trust in my body again.
Jane believes some medical professionals lack creativity in their thinking.
Think creatively when you are listening to someones symptoms.
If you’re a young fit doctor, I don’t’ think it’s, it’s quite hard really to understand someone’s pain. I think you, you do count, it is one, is it one to ten, and you’re like half of you’s going, “Well, I can’t really say 10, and I can’t say 15, oh I’ll say, I’ll say 7.” You know, because, and then I’ll sound as if I’m being like overly, you know, pathetic. And so a 1 to 10 scale of pain really is, I suppose I can understand them doing it, but I don’t really know because I know they haven’t got time really. So it’s not actually, it’s not actually them it’s probably, you know, government. But I know things have to get paid for.
But I think creativity is probably, and a lateral thinking of associating things together. So if you do have somebody who sits there and goes, “I'm covered in this rash, it’s really itchy and I can’t walk. And I’ve had irritable bowel since I was 9,” then, in my head when I hear stories like that I think of linking things together. And I think that, think because it’s textbook taught to very pragmatic minds, I think it’s hard to be creative about what could be wrong with somebody. Because also there’s lots of people there that there’s nothing wrong with them. So they’ve got that to diffuse out. But I think listening to, when somebody talks about their problems, and if you think creatively about it you can link things together. And so if anyone had noticed dermatitis herpitiformis all over my body, including all the doctors I saw, but it wasn’t in classical places. So it wasn’t on my elbows and my knees, which is understandable, then somebody might link that I actually had coeliac disease. Which then could have meant that somebody could have stopped eating bread and took lots of calcium and then I wouldn’t have gone through having my body ripped to pieces really. I think you’ve got to listen.