For your own personal independence you have to keep fighting for it. If you know there’s something wrong you have to keep going and telling them that something’s wrong until they fix it. And if they don’t fix it and something does, does happen you still have to keep fighting then to get things back to the way they used to be and you can’t just give up.

So be persistent in making sure that you get the help that you need?

Yeah.

The people that I’ve spoke to are just of any age. At the time I would have preferred to speak to more younger stroke survivors and I did look for young support groups which in the area where I live there isn’t any. Or not too far away, there’s not any services there either. So that was a bit difficult but at the time you just make do with you, what’s there for you.

So, five months went by where you had these sort of small, mini attacks and can you tell me what happened after that?

Yes, that was in December 2007. I woke up one morning and I was so tired I went down for a drink. I had a drink and then I went back to bed. And I woke up two, two hours later. And I felt OK, I felt fine. There was no, I didn’t feel any different but when I came downstairs my, my mum said to me, Why are you walking funny? Why are you dragging your leg And I said, I didn’t know I was. So she said, Are you OK And I said, Yeah And I started feeling a little bit confused at that point And then my mum rang for a, oh no, we went to the hospital and we went all through A&E to EMU ward and they did assessments and they still never diagnosed a stroke. It, I had to come back the following day to see a consultant. And he did a CT scan and it was only from there that they’d seen I’d had a stroke.

So how long was the problem with the leg, how long did that last?

That was an ongoing thing until I’d finished
Oh right, so
…recovery.

so all during the time when you were in the hospital that
Yeah.

you were having that problem?

So it was like possibly 48, 72 hours after, before they diagnosed a stroke.

And you were admitted, and you stayed in?

No, not overnight.

No?

No, they sent me home the first night and I had to go back the following morning to see the consultant and that’s when he gave me the CT scan.

I think if they’d had, if they’d had realised what was happening earlier they could have possibly stopped the big stroke from being as severe as it was and then my symptoms wouldn’t be as bad as they are. And it wouldn’t have impacted on me as bad.

So do you feel quite, a bit bitter about that? That they didn’t act on that, or understand what was going on in the first place to, to prevent that from happening?

Yeah.

Yeah?

Hm.

So, in terms of your message for the health professionals in that case, what would that be?

Just because of the age doesn’t rule out anything. Young babies, children can have TIAs, stroke and people that are presenting with them kind of symptoms should be checked and not just disregarded.

Nobody said it was a TIA or anything until I had the big stroke and they’d seen in my notes what had happened five months previous and said, Oh, that was a TIA, somebody should have, you know, picked up on it So that’s when we first got told it was, these were mini ones leading up to the big one.

So you went for five months just feeling intermittently

Yeah, having constant like mini TIAs. Some could last minutes, some could last days, hours.

Were the symptoms, once the symptoms had died down then you were fine for a bit, were you

Then I was OK, yeah. But I knew something was wrong because they was going to come back. But it was hard trying to get the doctor to listen that it wasn’t anxiety problems, it was something different going on.

So how did you feel when the doctor was telling you about the anxiety, that they were treating you for that? And you perhaps didn’t really feel that was right?

I was really upset and mad and confused because I knew something was wrong and what was happening but because of what was happening it was making me more confused so I couldn’t express what I was trying to say properly.

Frustrating.

Yeah. I guess it was for both parts really. Because you don’t expect somebody so young to be having these kind of things.

I was constantly going back and to the GP with different symptoms and he would diagnose different things such as the neuralgia and [sighs] rheumatism and all different things but like I said, mainly it was in my face and they were just emotional, anxiety problems, that’s what they was putting it down to. So
So, I mean, in terms of your feelings about health professionals that you’ve been in contact with, how do you feel about them and the way that they operate?

Very negative. Even now, very, I’ll avoid going to any kind of GP, hospital.

They didn’t explain things like [sighs] I don’t know. They didn’t explain why it was happening. And for me that made it much worse because if they had explained to me I could have understood.

Did it feel difficult to ask questions? Would it have felt difficult, do you think?

It did, yeah. Because they’re much, much used for it for older people so they just kind of do, did what they would normally do,, for me, for them, which wasn’t acceptable.

Do you think that they were inexperienced in dealing with a younger person that had a stroke?

For younger people, yeah.

Right. And so in the ward that you were in, were you, were there anybody else your age or was it mostly older people? Do you remember?

I would say the youngest person there was about 70.

Right. I mean, in, in the whole scheme of things then how did that make you feel being in the hospital and the health professionals not really communicating very effectively with you?

I think that really impacted on my recovery, because I really suffered afterwards.

In what way?

I kind of like went into a depression but it wasn’t a depression, normal depression it was from the stroke. But it was so bad, even medication didn’t help.

I think relationship-wise when you first meet somebody and say, Oh yeah, I had a stroke when I was 2 that’s kind of hard for somebody to get their head round and they kind of run away from it a bit, so
Has that happened?

Hmm.

Yeah. And does it make you feel upset talking about it to somebody else? It kind, knowing that that might be their reaction?

Yeah.

Yeah?

Because it doesn’t matter how much information I can give them, they’re still too scared if you like to take on the situation, so in comparison to how scared they feel to how I feel.

Because we live too far away to the hospital, they couldn’t actually get an ambulance up the mountain where we live, so I had to get or my mum did, sorry, the next, next door neighbour from where we live to take us to the hospital. And it was a weekend because it was an out of hours and we got there [sighs] and he did examination, blood pressure and he checked my ears and he said I had viral infection. And just to go to see my normal GP in the week, the next week. So we did. And, and from there I was having, I don’t really, funny sensations. The doctor thought it was neuralgia, anxiety…

What sort of funny sensations?

It was more in my face like, not like pins and needles, it’s not like that or, like something running on your skin. Kind of like that. But it would go numb and then come back and, but it was, it was more on my face than anywhere else on my body. And a lot of the doctors thought it was a severe anxiety problem and they was giving me medication to treat anxiety which in one way prolonged the stroke but didn’t really investigate TIA, the possibility of TIA at all, the lead up to a stroke.

When was that first mentioned then? TIA?

TIA was after I’d had the big stroke.

Oh really?

Which was five months later.

Ok, so you hadn’t realised that you’d had a mini-stroke?

No, nobody said it was a TIA or anything until I had the big stroke and they’d seen in my notes what had happened five months previous and said, Oh, that was a TIA, somebody should have, you know, picked up on it So that’s when we first got told it was, these were mini ones leading up to the big one.

So you went for five months just feeling intermittently

Yeah, having constant like mini TIAs. Some could last minutes, some could last days, hours.

Were the symptoms, once the symptoms had died down then you were fine for a bit, were you

R’ Then I was OK, yeah. But I knew something was wrong because they was going to come back. But it was hard trying to get the doctor to listen that it wasn’t anxiety problems, it was something different going on.

Because we live too far away to the hospital, they couldn’t actually get an ambulance up the mountain where we live, so I had to get or my mum did, sorry, the next, next door neighbour from where we live to take us to the hospital. And it was a weekend because it was an out of hours and we got there [sighs] and he did examination, blood pressure and he checked my ears and he said I had viral infection. And just to go to see my normal GP in the week, the next week. So we did. And, and from there I was having, I don’t really, funny sensations. The doctor thought it was neuralgia, anxiety.

What sort of funny sensations?

It was more in my face like, not like pins and needles, it’s not like that or, like something running on your skin. Kind of like that. But it would go numb and then come back and, but it was, it was more on my face than anywhere else on my body. And a lot of the doctors thought it was a severe anxiety problem and they was giving me medication to treat anxiety which in one way prolonged the stroke but didn’t really investigate TIA, the possibility of TIA at all, the lead up to a stroke.

When was that first mentioned then? TIA?

TIA was after I’d had the big stroke.

Oh really?

Which was five months later.

Ok, so you hadn’t realised that you’d had a mini-stroke?

No, nobody said it was a TIA or anything until I had the big stroke and they’d seen in my notes what had happened five months previous and said, Oh, that was a TIA, somebody should have, you know, picked up on it So that’s when we first got told it was, these were mini ones leading up to the big one.

So you went for five months just feeling intermittently
Yeah, having constant like mini TIAs. Some could last minutes, some could last days, hours.

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I mean, what, when, when you, you heard the word stroke and that, told that’s what’s happened, what did you feel?

I was really shocked to be honest because the, it wasn’t even the doctor that told me, it was my dad. As I came out from the CT scanner there was no doctors there and I could see by my dad’s face. And I said, What’s wrong And he said, You’ve had a stroke

How did he know?

I don’t know.

Oh.

I presume the doctor must have been in the room when I was being scanned and he’s come out and told my dad I’d, I don’t know.

Are you monitored, do you have to go for appointments and things still?

I have six monthly blood checks but that’s it. OK.

I was in the hospital for three weeks and I would say at least three, possibly four weeks whilst I was still at home recovering, and in between them I would get different feelings and slowly it came back in my leg.

When you were at home recovering, what did that consist of? Did you, were you given things to, that you had to do like physio and stuff, that you carried on
Yeah
doing?

I had physio that came, I think it was twice a week.

Somebody came to the house?

Yeah.

Right.

And occupational therapy, they came.

What was that like? Doing the physio and the occupational therapy?

Doing the exercises that they gave me, I couldn’t really see the point of what they was trying to do. I did them but I can’t see how doing the exercises that they did made it any better or any worse. Because even if I didn’t do them things were still happening and so
Right. So was the same kind of communication issue with the physio and the occupational health people, were they not as good at explaining things as perhaps they could be?

Not really, no.

We’d been out gardening and we’d gone inside for a drink and I sat down on the sofa and I just felt completely fine one minute and the next minute everything just went black. I couldn’t see anything. I had like brain fog. You just couldn’t think, or, get the, I could get the thoughts but not the words to come out. I managed to get my mum’s attention and she could see that there was something wrong by my eyes, I don’t, I’m not quite sure how. And I just lay down on the sofa because I thought it was just like I was going to faint. And that lasted for about five to ten minutes. And I don’t really remember much but the next thing I remember was going to the hospital.

I used the Stroke Association website. And there was another website I used to use as well where I would talk to other stroke survivors. Not sure what that’s called now.

Do you find that helpful having been able to chat to other people?

At the time I did. Not so much now, no.

What was helpful about it at the time? What made it helpful?

I think at the time everybody that was on the website had recently either just had a stroke not like two or three years later so it was kind of, we was all doing the, feeling the same thing together rather than being at different stages of it.

And so, did it give you a kind of sense that you weren’t alone in that?

Yeah. Yeah.

Do you think that’s quite important?

Yeah.

I mean I’m guessing being at, you know, coming out of hospital and being sort of left to it must be quite isolating in some ways?

Hmm.

Is that, did that feel like that to you?

Yeah. Even, even for people that’s looking after you and carers, even though they’re there and they can see the physical and emotional, you know, impact it’s had on you, I still, they still don’t understand. It doesn’t matter how you try to explain things or try and tell them, they just don’t understand.

We, we’re looking into possibly starting a support group in my, in this area. But I would need help and support from the Stroke Association, whether they decide it’s appropriate or not.

Is that something you’ve started discussing with somebody there, then?

Yeah.

Oh that’s, and is that something that you feel that you would want to get involved in organising?

Yes. I think if I, if, from what happened to me could benefit or help somebody else then, yeah, I would, and I would help.

So it would be almost like trying to put into place something that you would have found helpful that

Yeah.

Hopefully other people might benefit from?

Hm.

Now I have to stop and think of the implications like I have to know the limits, how far I can push myself and when I need to stop and rest.

When you say things, are you talking about kind of thing where you’re exerting yourself, like doing exercise or that sort of thing? What sort of things do you mean?

Everything in, in general, work-wise.

Are you back at work now?

Part-time, yeah.

Right. And how do you find working? Does it impact on your, does, does your condition impact on that at all?

I just get very tired, very easily and I suppose most people can take a lot, a lot of things and keep it there. Where for me I can only take a small bit and then I have to shut everything off because then that kind of makes me worse and then my blood pressure goes up and, so I have to know when I, you know, when to stop?

I mean, you’re working part-time, is that because of the what’s happened to you that you’re not doing full-time? Or is that just something that you wanted to do?

No, physically I can’t, I couldn’t do full-time yet because I get too tired too easily. But that is what I’m pushing for.

So you’d like to get back to work…

Yeah.

.. in a, on a more normal sort of basis?

Yeah.

So at the moment you’re kind of constrained by, still by your health condition. What, when do you, do you see that, is there sort of a time in the future when you see that happening? Or is it just all up in the air at the moment? What would it depend on? Going back to work full-time?

I’m not sure.

No. You, you said you get quite tired at the moment. I suppose perhaps
it’s
…is it something to do with
… building yourself back up to being able to go for 100% all the time.

…stamina?

Yeah.

Yeah.

Hm.

Right. So is that something that you’ll do gradually? Like increased your hours a bit maybe over time, something like that? Or have, I mean, well, have, have your employers actually said anything to you about what they would expect or want you to do?

No, they’re quite flexible with my, with my hours. And I can do more if I want to. Which I have done. And then feel worse for it afterwards. So I, I know now still, it’s too much too soon. But, yeah, I do gradually very slowly, work your way up.

Yeah.

And that can be frustrating because it does take a long time and you can’t, at that time you can’t really see that you are progressing, even though you are. But you can’t just stay and do nothing because that makes you feel so much worse. You have to keep doing things.

I couldn’t just sit and do nothing. You just don’t get better doing that. You have to keep pushing yourself constantly all the time.

They didn’t explain why it was happening. And for me that made it much worse because if they had explained to me I could have understood.

Did it feel difficult to ask questions? Would it have felt difficult, do you think?

It did, yeah. Because they’re much, much used for it for older people so they just kind of do, did what they would normally do,, for me, for them, which wasn’t acceptable.

Do you think that they were inexperienced in dealing with a younger person that had a stroke?

For younger people, yeah.

Right. And so in the ward that you were in, were you, were there anybody else your age or was it mostly older people? Do you remember?

I would say the youngest person there was about 70.

I think because we are a lot younger doesn’t necessarily mean we don’t want to know what’s going on. Instead of going to parents or partners they need to focus more on the, on the patient and tell them what’s going on rather than everybody else because if we don’t’ understand that makes it so much worse for us.