I think at that point I was first introduced to like the societies who look after my two illnesses. And it wasn’t, one was all right and I wasn’t particularly too impressed with the other one. Because it gave me my worst fears of life really, visually.

You can mention them.

Can I?

Yes.

Well the Osteoporosis Society just seemed to be this quite positive, older aged web page and society. But really I’m 36 and completely ruled by design and I didn’t really want to be associated with it and it scared me. And, and the whole of the back was to do with stair lifts and quick access panel out of baths. And really all I wanted to do was get fit and do as many things as I could that improved the quality of my life quickly and for a long time. And I couldn’t seem to find those really. And I couldn’t seem to find people who didn’t just say, Oh, you know, you’ve just got to get on with it But actually understood what a fractured vertebrae feels like and how it stops you doing a lot of things. And also the fear of, you know, being told by a consultant you know, don’t have a trauma, don’t fall down Suddenly you start to make you walk really funny because you think, God, I can’t fall down. I can’t ride a bike because what if I get knocked off it

I phoned them up because I got given the, a booklet on osteoporosis through pregnancy. So there was a nurse you could phone up. But I suppose it wasn’t what I was looking for really. Because at the time I was probably, I was wanting someone to say, If you do this, this and this and this then you should, you know, it will be all right And I got given a few numbers of women who had gone through similar thing but they, they’d gone through it like ten years’ previous, so they were well on the other side of it and then they were very up and at the time I was very down about it. And so, and I did, I offered all my consultants my name and number if anyone else comes in but no-one’s ever, you know, got in touch to talk aboutAnd the only time I ever heard about it ever’s some article in one of the newspapers. About a woman whod gone through a similar thing and it was, it was quite nice to read about it. And she wasn’t having a fantastic time, you know. She’d had a really rough time, so it was quite nice to be able to relate to it.

But, no, I didn’t, and then I was a member of theosteoporosis peoplefor about a year and then I stopped.

Why?

Because it was too depressing to read their magazine.

Well my mum, my grandma and my aunt all had osteoporosis. And I remember being quite, fairly concerned about it but being told by the GP that I saw that I was a lot taller and a different frame to my mum and obviously medically things had moved on quite a lot. And so didn’t really pay much issue to it. Hurt my neck doing snowboarding. Didn’t get anything done about it for about two years and then, and then went to a GP who x-rayed me and found out that I had a compression fracture in my neck. And so at that point I think I was about 34 and I wanted a DXA scan, but I was too young to get one. So I just couldn’t get one.

I think the theory is that you’re not at risk really, at that age. And you can’t, you, I think pain’s personal so when people, you know, you can cut your finger and say you’re in a lot of pain, and when you say you’re in a lot of pain because of your neck, people will just think, Yeah, low level pain threshold here So, they can’t see the actual level of pain in your neck.

And then about, literally about three hours after I first give milk I tried to reach for something and then there was a massive pain in my back. And then I couldn’t move. And then it all got a bit hilarious for the next six weeks and the fact that, even though I couldn’t move then, I still got shouted at by midwives who said I hadn’t changed my baby and it was just literally, there was no-one to ask for help. And I couldn’t move. And to think, through the pregnancy bit everybody just thought I was I had a low pain threshold. And so it all got a bit kind of traumatic in my head.

And so I got given a Zimmer frame to get home from the hospital. And then just had this series of just falling down, but not being able to move at all. And, and being in the most horrific pain considering I’d just had a baby, which was no pain. And ended up in Accident and Emergency a couple of times and just told to go home and get a life. And just sent to home on my own in order to walk out of the hospital. And falling down in reception and being just to left lying on the floor. And just classically being treated as being some kind of nutter parent whod has got post-natal depression or something.

And so that went on for six weeks. And then eventually went to stay with a friend and the same thing happened. And luckily my friend isn’t, isn’t me and she’s quite a little Jack Russell and wouldn’t let me leave until there’d been another, some, another doctor coming to see me. And then took my x-rays up to I think the spinal ward and then they were describing me and they said something about a baby and they, they went, Oh no. These are the, these are x-rays from an old woman And so then everything fell into place. As I say, it’s still, even now it still makes me really, just upset to think about it.

And then I saw a doctor, a professor there. And then about, he took some bloods and then about a week later the results came back that I had osteoporosis through pregnancy but also undiagnosed coeliac. Which the coeliac disease would have caused the osteoporosis really.

I suppose it does make me upset because it was kind of like it can, you know, it was six years ago now, so, but it can still catch. Probably because I think if anyone has got, has got a fracture of their spine, which is like the central part of your body, then I think that you’ll know the, the pain that I’m talking about really. And to have multiple of that pain and yet still be classified as making it up in hospital and by your ambulance driver who thrusts you up off the floor and doesn’t protect you because you don’t look, all you’ve done is you’ve stepped out of a bath and fallen over and haven’t done anything. So nothing adds up really. So all, I suppose it all looks fake. Especially when you’re young.

And so I feel as, I understand but also feel let down by the system. And, and it was quite horrific and the probably whole of what should have been like the best time of my life having a new little baby and being quite proud and showy offy just become some, some horrific nightmare that just kept going on and on and on. And even to the point where I’m quite sure that people around me, including my partner, thought I was making it all up. And I know my friends thought possibly all post-natal depression.

And then realised that I’d have to eventually go back to work. And then decided on a long commuted way of going to work which meant that I didn’t have to use public transport. I’d drive to work and go to somewhere where I could park quite easily, and so I never had to carry bags. And so I ended up, you know, living in one city and working in another city so that I could actually in my head have a more physically able life. And so I still do that now. And I still have to minimise everything that I carry. And but obviously mylittle baby’s a lot older now so I don’t have to carry him around so much now.

But economically the osteoporosis made an impact in the fact that I got made redundant as soon as I had, as soon as I was pregnant. Just, you know, coincidentally. And then went straight from I think the statutory pregnancy straight onto I think sick, a sick payment. So I went straight off the job market and into the doldrums of, you know, not having any money really. Because in my mental head when I had, when I had my son, it was like, yeah I’ll take this length of time off and I’ll do and I can do that and so it all went a bit down the Swanee really. And because you, you live somebody or you’re married, then you’re not entitled to anything at all really. And so economically I couldn’t afford a physio now.

I got like, a DLA award, a minor award and the doctor came out. He was just, like he was the most horrific person. And he was so like, and I don’t know why, maybe because he’s used to seeing lots of people who are making it up or something, but he just said, Oh so when, when was the last time you fractured then As if it was just like I when was the last time you sneezed. And so I started to cry when he asked me. And he went, What are you crying for And it was just like, you know, you’ve just got no idea, have you? And then he told me that I hadn’t any muscle wastage whatsoever. And I knew that all my knees had gone and the lot. And so you just end up just thinking, Oh God, this is just such a waste of time

Was this a medical examination?

Well he just looked at my knees. And he asked me to bend down. And he said, Oh, I’ll, you know, we’ll let you know But, you know, mobility-wise I went from having full total mobility to absolutely no mobility and then got told that I was fine. And you know, my life used to be quite big and my life now is quite little, You know, I know how to, there’s a certain, I’ll only do certain bus routes, I know that I’ll work out of my home town in order so that I can park. I know that, and so lately it’s got so little. I can’t go to the shops, I’ll carry three things. So it’s quite, and so, and then someone sits and goes, Yes, well, you know, there’s no, you’ve got no mobility problems it’s just like, OK

Hmm.

So [laughs].

And so even to the level where I’d been diagnosed with the osteoporosis, you even still have to sit in Gps surgeries when it involved my dad and my mum having to, you know, put me in a car and drag me there and look after a baby at the same time. And being told when I’m linking the symptoms together to doctors, that I’m told, that’s it, you, that’s enough, no more now today, and just told to go away. When I’m linking together the fact that you’ve given me Calcichew and my pooh is now white, which means, and I’m covered in, because you’re also, with coeliac you get, you can get a dermatitis herpetiformis and I was covered in them. And so there was no, nothing creative went on at all.

And in my head, because I am creative, I knew that all these things were connected. But then I think I realised that I was just not important, that you’re just this person whos sitting there going, you know, maw, maw, maw, maw, these are my symptoms. And I suppose GPs and doctors hear it all the time. But what it’s left me with is being I don’t trust them and I can’t communicate with them any more.

Do you feel strongly about it?

Yeah, I think it’s all, it seems to be that it’s altered my life now. As I, even badly, when I meet a friend or one of my son’s friends whos a GP, I can’t talk to them. I just can’t have that relationship with them because I know how they, kind of how the brain thinks, there’s a very logical, A + B + C, whereas life really doesn’t, necessarily go that way. And so it, you know, has had a detrimental affect on my being able to ask for help from a GP surgery. Because when I did think that things got bad GPs would be there, and consultants and stuff, they’re not really. But I hope they are if like my son’s ever ill. Then I hope that they, it will, they all work fantastically. But with something like osteoporosis it’s so, so meaningless and boring and not life threatening that I think it’s, it has it’s backstage somewhere.

That’s you view?

Yeah.

That’s how you think they look at it?

it’s an old people’s disease. it’s just like, there was something on the radio, only the other day about the fact because women are living longer then they’re, they’re more at risk of their bones thinning than at risk of not taking HRT and getting breast cancer. And so it’s told, you know, it’s an old people’s disease and so it’s put on the thing that you just naturally get when you’re old. And so I’m 42 now, I was 36 then, and I knew I’d become old.

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.

OK, so that’s the message?

Yeah. We should listen anyhow, though, but I listened to just one person they have to listen to hundreds of people with different stories. An x-ray. An x-ray would be quite useful. Because I didn’t get one for six weeks. So, and then someone to read it of course.

Well the way I got through having the baby was I had to go to my parents’ house where I’d grown up and actually my dad looked after my son. And my partner had to stay in our home in order to work. And his practice were very good and paid for him to go to visit me every weekend. But it was most kind of horrific but fairly levelling when you have a child the fact that I didn’t kind of get freaked out by anything about having a child because I was quite self-absorbed at the time just trying to wake up in the morning. And it was quite, you know, looking back on it was quite hilarious. But even to feed a child was quite, meant my dad had to get up at two oclock in the morning to carry my son to me, to feed him.

But the other horrific thing that I forgot to mention was that when I got diagnosed of having osteoporosis my consultant immediately said, You’ve got to stop breastfeeding And I, and breastfeeding up to that point, this is six weeks, had been horrific. And I’m quite firmly of the belief that there was no breast milk in my body whatsoever. And my son’s weight just dropped off the Richter chart. But because I was in between cities, you know, no one was really watching it. And I had a lovely midwife come to the house who told me to put on hold my medical interventions to give my son the best chance of having a healthy outcome. And to carry on breastfeeding, which I just thought was just horrific thing to say to me. And she was quite adamant that if I put him on formula that she’d just come from the hospital where a baby had almost died because they’d been put on formula.

And I suppose it keeps you very kind of sane because the said midwife was ordered out of the house because she obviously had no idea what a fractured spine felt like. And so I was, I did feel guilty that I couldn’t feed him but I was quite under the illusion that I wasn’t giving any breast milk any how. And I needed that milk. And so even when you’ve got a, somebody’s told you exactly what’s wrong with you, you’ve still got the medical profession telling you that you’re doing the bad, the worst thing to your son. And so that was the breastfeeding element.

So luckily when my dad got up at two oclock, and we were only making formula, because I couldn’t actually feed him from the breast because my back hurt so much. But it was all quite horrific. So but I was, there was no help from anyone else other than family. And I think the thing with the social services is that if your lifestyle becomes disabled then the intervention of social services is very limited if you’ve got family. And even if your family’s fairly old at the time, that’s how your, you should be looked after, which I don’t think is particularly healthy thing to happen. And obviously my mum and dad loved it, but they were old to have the responsibilities of waking up two or three times during the night to feed a baby. And so that was quite hilarious.

Tell me a little bit because you said you stayed with your parents for six weeks, what happened when you went back to your to the place where you lived? How did you cope then?

Well when I went back it was my partner’s company paid to have an au pair. And because social services at the time couldn’t decide on, if I deserved any care. But, I, you know, I kept trying to point out that I can’t actually look after my son. And so they talked about my partner giving up his job, and becoming my full-time carer. Which would have been, you know, mentally one of probably the worst things that, well second worst thing, being the first was to actually be sent home to get looked after at 36. And so they said that they’d pay in

Like I haven’t slept for lots of years now. And so I never sleep very well but I’ve become accustomed to that. And then I just have to pre-think everything. So, you know, I work away for, I stay one night away from home and, and, and all my, all the people I work with must think I’m really scuzzy because I literally work a wardrobe out where I just change an underwear. Because if I take my work and stuff with me then I can’t carry it. And so I’ll carry it all right for the first 20 minutes and then thereafter all I think about when I walk is pain. And so it’s just, that, my mind is just constant, all my thoughts are pain which is quite pathetic really but, and then during the day I suppose it’s hard because if there’s lots of stairs involved and I live in a house with lots of stairs, but, the idea of going up and down for another set is just like, and so I, I’m, and so I’m like under-active really. And it’s not that I’ll use the use the lift it’s just that I’ll just not go.

And so I become quite lazy. And so I tend to just sit where I sit and work, and I teach so, when I’m teaching my brain’s occupied by something else. And so that’s really nice when it’s not the predominant thing in your head. But when you’re just walking about it’s predominantly don’t, bus better not come now because I can’t run for you. Which, when I’m surrounded by all my peer group who are, area still young and still getting on with life and still, still going snowboarding and still being active, it’s a bit, I feel a lot, as if I’ve let myself go. Even though I don’t really have any control over it.

Yeah, I can walk, I can walk for a very long way. That’s why I get no, I’ll get no mobility assistance. But all I think about is pain.

Are you in pain when you are walking?

I’m in pain when I’m here, when I’m, you know, my neck, if I, because I’ve sat here for quite a bit now, talking about myself. And so that, you know, that, so everything hurts but it’s not an incapacity hurt, it’s just a fact that my brain just constantly thinks about pain. And so, and I know that you can do things, like say if I’m fully engaged I won’t think about but then the after effect is the fact it all catches up with you.

But if, if I go to walk it is literally how do I, can I walk that far? And, and the answer usually is yes I can? Can I carry anything? No. And so, and that’s where life’s got little in the fact that I can walk down to the end of our, our shop in the street but I can’t bring a pint of milk home with, you know, three or four other things because it’s too much to carry.

And then I am strong, bullish, so occasionally I will carry like big things. And I’m fully braced and I know exactly what I’m doing with my body. And then when I, and then when I put them down, just carrying them up a set of stairs, I’m like some old woman. And it’s like I’m bent over and my backs gone. And it’s just quite, just a bit fed up really with it.

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.

Because I can’t go back to where I was. And I know I will do eventually but I can’t, like I can’t describe the pain and I can’t go back. And so I’m terrified of going back. And so, as, I probably clam up in doctors’ surgeries because if they mention it because I think that, Have you got any idea[laughs] what the pain level is And so I think the whole being relaxed with your body’s finished really. And so although I want to go running round the park I can’t actually go running round the park. And I can visualise myself running around the park and then I, and then I realise who I am and I’ve put on a lot of weight because I’m more sedentary.

And so when, also I’m told by consultants that I have to start to be more active now, I sort of think, How, how do I do that? How do I know what’s good pain and bad pain when whatever I do, if I do any exercise, if I do Pilates, it, usually the day after I can’t even move And so if I’m doing that every week and yet I’m still the same.

And I know a lot of it is mental, but I, if you ask a consultant will I not fracture if I fall down, they can’t say, No, you won’t Because they can’t say that. And I know that I can’t fall down. I can’t go back. And so you’re held in this limbo of trying to maintain the quality of life you’ve got right now. Even though it might be quite, not as good as it was six years ago. But if I push it, do I lose it again? And I’m quite sure if there’s a psychologist in the room and they’ll be going, Oh no, she needs to push it But when you’ve got it weighed up with memory of pain you just think, Oh no, I don’t think so [laughs] So I’m a bit trapped by it really.

And then there’s also the question of drugs as well. So all I take is Calcichew. don’t take any other like Fosamax or whatever they are. And then I, and when, in, the first couple of years I was really up on research and then I’ve just, I kind of lost the will to find out anything more now.

I think because I’m, I’ve still like late child bearing age and haven’t gone through the menopause then I think from all the consultants I’ve seen it’s been a no drugs other than Calcichew. Two tablets a day. Which I was, I used to be really very good at taking. And I haven’t been as good at taking them of late, I think, because I just feel a bit fed up with it all. And it’s only a two little white tablets every day butI don’t’ know if there’s bit, see there’s a bit where I do actually want to fall down, just to see if I can get back up. But obviously I don’t want to fall down. And because I’ve got the osteo penini (osteopenia), Italian sandwich now, then I’ve gained bone and I want to keep it. I don’t want to give it away.

And then if the change of life just comes along and, and I know loads of like friends whove gone through the change of life whove 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.

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, physios 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.
&nbs