So I’m, kind of, interested in your, kind of, self-identity, if you like, because you were someone who was very fit into your seventies and then all of a sudden you find yourself in this, kind of, protracted business with the Health Service.

Yes.

And I, kind of, wonder how thathow thathow that affected you?

Well I think I was angry, I was angry that my for a start, that my health had let me down and that everything I did and thought I would be going to continue doing I can’t do and I was and I was angry with my husband for having a stroke, there’s noit’s not rational, but I was, you know, how dare you? How dare you have something that demands more help from me than I’m able to give? So we, you know, because I couldn’t look after him, I we got carers in for a bit and that’s a minefield that I don’t want to go into, you know, you pay out for these people and they’re just it’s horrible. I would say that even today, two years later, I haven’t come to terms with the rheumatoid, it has stopped everything that I did, absolutely everything. I used to sculpt and, paint, do lots of things like that, but with my hands, they’re just, you know, just they’re just too painful, I can’t lift for any length of time now because of the pain in my wrists. I used to walk, real, you know, proper hiking stuff and loved, absolutely adored it, I can’t do that now, you know, because my lungs make me very breathless after I’ve been walking for, you know.

Well I actually had some lung tests done just the other day, and it’s a six minute walk, among other things, that you do there and I was I was pretty jiggered at the end of the six minutes, you know.

I was always what they would call an A-type personality, so if I wanted something done I wanted it done yesterday, not tomorrow. And I think that’s partly getting older, I mean, I’m 70, so I think that as you get older you realise that things like that aren’t as important as you might have thought they were when you were young. But, no, I tolerate all sorts of things now that I would never have been able to tolerate when I was younger. Because, I was quite driven, I was I’ve always been very competitive, so, yes. But, now, no, I don’t, if it’s going to cause me pain, and I don’t need to do it, I don’t do it.

I try to be as positive as I can, but then at the same time I know that with age things are going to get harder, because I’m going to have kind of more pain as I grow up, and sometimes I use my walking stick, but I try not to use it at all, because I can’t I don’t know why, I kind of fight it; it helps me so much, it gives me a lot of support, but I have it’s this big wooden one, and I just feel embarrassed when I’m walking around with it; so I sometimes my pain can be awful, just because I’m too proud to walk round with a wooden walking stick.

I do feel that sometimessometimes I feel that I’ll never be able to work again, that scares me, because even, oh, growing up, I’ve volunteered. I’ve volunteered since I was about 11, to 18, so I’m used to working and kind of doing and courses and things like that. So now with with my brain injury I kind of I strug-, I used to love reading, I did English literature for my A-levels, and I kind of every ten pages I’ll have to go back five to know what happened, to remember what happened again; and that kind it’s kind of And I always worry if that’s going to get worse, so You see these horrible stories sometimes, like I’m if your diabetes isn’t the best, if you carry on with it not being good, there are people that have kind of like lost their feet, and things like that, and it’s a bit [pause] it’s a bit scary. It’s because I think I’m scared because I don’t I’m positive but I’m scared because I don’t know what’s going to happen in the future. Mm. That scares me a bit.

And I have and one of the reasons I go to my counsellor is because I found that if I’m going downstairs in my house, before I go to the down the stairs my instant thought would be, you’re going to fall down there and then you’ll break your neck. And when I closes the door, when I go if I go out, I’ve kind of half going to fall down these steps. So I’ve got this constant kind of like a constant voice in my head, with all these worst-case scenarios, and then I do touch wood, and I do that about 20 times a day, touch wood. Because I’m so because I know how bad I can get, because I I was basically dead twice during it, I’m very aware of how things can change. Like when I went into A&E they kind of were like, oh, there’s a four-hour wait; and I said, I’ve got some chest pains as well; and I got seen straightaway, and three hours after that I was being put in the High HDU and being sent to ITU. So it’s quite mad that if I hadn’t have told a white lie I kind of I probably wouldn’t be here now.

So because I’m used to the worst-case scenarios I always kind of have that fear. And I and now that I’m never going to work, and things like that. But I try not to I try to keep that to myself because if you if you tell your if you talk to your mum, that you feel like that, and your family members, and your support groups and things, no, it doesn’t just affect you, it affects the whole family, when you’ve a mental health condition and kind of with any health condition, so I try to keep That’s probably when my depression is worse than it is, because I keep my fears inside and I’m positive, but there’s always that person at the back of my mind saying, you shouldn’t be it’s kind of like a little devil.

And do you feel, your conditions, have they caused you to live your life differently? I appreciate that with the diabetes you perhaps modify diet and that type of thing, but you mentioned that it’s in the back of your mind.

Yes, of course, you know. Yes, of course, but I think a combination of both. You have to recognise your age. You have to recognise that you have certain difficulties and adapt your life around it. You can’t simply go in and have two stents and so on and come back and say nothing has happened. Whether they will cause any stress or damage you don’t know, but it’s always in the back of your mind because very much like you sit in a clapped out car and you know that there’s limitation. You know, it’s pointless putting it on a motorway and putting your foot down knowing that it is just not capable of doing that, and I think that applies with your own body as well. Simplest way I can put it.

It’s just, I don’t understand how people don’t realise how poorly you feel with diabetes. You know, there’s a lot of conditions where you can’t see it but it affects you so much, and it’s not only diabetes. There’s a lot of conditions but everyone sort of says, Oh you look well. And yet you feel absolutely terrible and that’s the only thing I it just seems to wear you down from inside. It’s just constantly on at you all the time.

And do you feel you’re ever able to, if somebody says, oh you look well, do you feel you’re able to say?

Oh, yeah, I always say, Well, I don’t feel it.

Right.

But I will say that or I’ll say, I wish I did feel well. But one thing you’ve got to have is a lot of faith. You’ve got to keep at it because it will get you down if you let it, well, or the conditions, they will slowly drag you down if you let them and every day you have to say, No, I am going to walk into town. I am going to do this. I am going to do that and I’m going to fight it. No matter how tired you get you’ve got to fight it and carry on.

Like, I’ve got ADHD as well, but I’ve not been specially diagnosed with ADHD, because they said, you don’t have, a specific, you know, diagnosis for it, but you have got ADHD. I’ve got OCD, ADHD [sighing], anxiety and depression. It’s, life can be very hard sometimes. But I’m, I think I’m still coping. But, I feel very lonely about it, because my family don’t understand it. And my sisters, brothers and sisters, they just don’t understand it, that there’s something wrong. But it’s very hard to explain when my tics come on, because I never see anyone. Excuse me.

That’s alright. And so the tics, is, do the tics come on, I don’t know, if you’re under stress, or something?

Under stress.

Or are they just there all the time?

No, they come on when, I’m under, severe pressure. And something triggers it on, if I’m thinking, and it’s getting me all worked up, I will tic, and it’s gonna, sometimes… well, everybody… no two people are the same with it. My tics are like, I make barking noises, screaming, and, it’s just, releasing your anxieties, really. I have to let it off. Which is really embarrassing in public, but, I’m afraid that’s me.

I think one of the hardest things is just constantly having to take medication to the fact that your life kind of you can’t be spontaneous, because you’ve got to suddenly think, Ooh, we, you know, do I need to take this with me? Do I need to have this with me? Or you can’t just kind of go off. Daft things, we, when we went on holiday last year, I think we probably spent more time trying to sort out travel insurance, letters confirming that I did need needles, the insulin, the drugs and all of that and it’s just, it weighs you down. You kind of think, I just, it would just be so nice just to walk out of the door and just go and do whatever.

And you feel very, very tired and I think it becomes, I mean currently I’m not able to work. I was due to start a new job last year and they went through the contact contract, when they found out of my, the kind of extent, I suppose, of my illnesses and to a degree, there was a discrimination but, unfortunately, at the time, I was not in the right state of mind or health to pursue it any further. But I think the problem, when you have illnesses like diabetes, like epilepsy, that because they’re not clearly visible on a day to day basis, there is this kind of people looking at you as if to say, Well, why aren’t you working? Why aren’t you doing this? Why aren’t you doing that? And it does become slightly frustrating that you think, Well, actually, I have got this to contend with and, you know, at any moment I could just keel over. And it does become very frustrating that you feel you have to justify yourself all the time. And it does define, I suppose, especially having had the epilepsy since I was mid-teens, you question sometimes what would I have done if I hadn’t have had this?

What would, where would I be? Would, you know, what could I have done with my life had this not been there? How much of my life has been defined by having these illnesses? And it’s, you know, I pick up my prescriptions now and there’s just this huge great big bag of pills and you just, it gets, it can be very hard and you think, Do you know what, I just don’t want to take them. I’ve got to take them but it would just be so nice not to, not to have to remember. And that’s another problem that comes with the epilepsy, is memory. And my epilepsy.

Is centred on the front temporal lobe, which is to do with mood and memory. My memory is appalling. I have to have reminders everywhere, notes everywhere, I can never remember people’s names. There’s an awful lot, my wedding day, for example, is now becoming remembered only purely by the photographs. I don’t actually remember it, and I suppose it gets highlighted how bad my memory is, because my husband sucks up information and can remember everything from what he was wearing on our first date, which I have absolutely no recollection of. I’ve got about three years at college where I don’t remember at all. So it’s just impacted and you do sit and wonder how much of you is defined by the conditions and not you as a person, and it becomes very frustrating.

On one level, I am really fit, you know, and able and I wouldn’t ever sort of give that up because, obviously, it’s doing me some good somewhere. My, you know, I don’t know, heart disease and things like this are all, with any luck, you know, does have some sort of stamina build-up in there. But the yeah, the drugs themselves definitely have that sort of zapping of energy and I read the side effects, which often isn’t a good thing and I know they write absolutely everything down, but the sort of muscle fatigue as well.

You know, and things like that, and I think I feel that sometimes. On the other hand I, you know, I am very busy physically and I’ve sort of made sure that, in a sort of stubborn way, you know, I won’t let the diabetes and the epilepsy stop me, you know, being what I always was really.

Sort of quite physically fit and able. I garden a lot at the moment. I went from teaching to gardening.

I know for a fact I’ve learnt to sort of play it down so much.

Right.

And again, even with the epilepsy, this is like managing it with other people, you know, I and certainly, strangers or people I’ve met for the first time I would never openly sort of complain about, yeah, how bad I feel or didn’t I get a lot of sleep last night because of my sugar level, you know. With this gardener, for instance, I just have to, I just choose to appear really positive, you know, and I can do anything you ask me to do because I’m as strong as the next person is and so on. And I don’t think that’s healthy, in a way, sort of psychologically, you know, I play this sort of I don’t know, it developed through the years. I almost have another me, don’t, I sort of, you know, my family see me complaining and moping around and up half the night, you know. And then this other sort of side is the gung-ho same as everyone and, you know, I just feel that that’s sort of necessary in a in a in another sense. It’s a, you know, it’s another world sort of thing. So yeah, identifying the symptoms or the fatigue that’s associated with these isn’t easy but on a, you know, I deal with it as it happens, if you see what I mean.