I think it depends; it kind of depends upon what you’re doing that day. I try and think of it as when you go to sleep you hit, you kind of fill this metre you have of energy okay and I if you do too much through the day, so if you do a lot of activity or a lot of thinking or writing, you use that energy up quite a lot. I think that’s the same for anyone with or whether without AS but I think for someone like me with AS, the metre is slightly smaller so it doesn’t allow for as much energy. So if you conserve that energy I think you could maybe go quite a long time. You know, you may be able to not feel tiredness until quite later on but if you do what I would normally do, someone of my age would normally do, I’d be very tired very quickly.

Yeah, well.

Yeah.

Thank you. So it affects university?

Yes.

What else? What else does it affect, this fatigue?

Because I mentioned earlier that exercise is very good for AS but it’s difficult because, although you’re trying to help yourself with the condition, if you exercise you use quite a lot of energy and I tend to try and exercise in the morning before I’ve got things to do during the day. So that means you’re using quite a lot of energy before your day’s even started. So it can affect your ability to do certain tasks later on. Not so much in actually doing them, but your performance within them, so they might not be as well as you’d like to have done them.

The main thing that I suffer with on a daily basis is fatigue which is a thing that I think people really find difficult to understand because if I tell someone I’m in pain they kind of accept it but if I tell someone I’m tired they just think, ‘I’m what? I’m tired too. But when somebody else says they’re tired it’s almost certainly not what I’m feeling because I have a massive lack of energy sometimes to the point where I probably don’t have dinner at least twice a week because I just don’t have the energy to even put something in the oven let alone actually cook something from scratch. And if I’m on placement or working all day then I just, I come home and I can’t do anything because I’ve just got no energy left at all. So that’s probably the main symptom that I suffer with and that’s less easy to treat as well. When I get a flare up of the disease then I get more poorly so more pain, more tiredness and lack of appetite, weight loss. The best way I can describe it is imagine that you’ve got flu and because you’ve got flu your immune system is trying to fight off the virus so it’s, because your immune system’s overactive it’s making you feel tired, you haven’t got any appetite, you just feel achy all over and that’s what my immune system’s like all the time because my immune system’s overactive in the disease and that’s the best way I can describe it I think.

Does the medication make you drowsy?

Yes. Especially the morphine it will like slur my words, make me like feel conscious about myself, make me so itchy, and it makes me just feel like, and it, my Mum goes, Are you sure you haven’t taken anything else cos you look a bit out of it But, but yeah it makes you feel a bit light-headed and stuff like that.

And is that the morphine or the fatigue?

Both to be honest.

Interact.

When they like get mixed together it does play up your mind quite a lot.

Okay how does that affect your life?

As in like day to day?

Yeah.

Quite a lot, it affects me quite a lot because I’m, like in the morning it takes me about an hour to get out of bed, just, it doesn’t help that I’m not normally a morning person but the mornings are quite bad and if I have like a rough night I just feel like, Ah, I can’t be bothered at all And then when I have to like when I’m in my wheelchair that affects me because my elbows and shoulders and hands start to hurt, and it’s like ah I have to take some medicine for that all on top of the stuff I’m taking for my legs, which are hurting at that day and time. And then it’s like trying to get about on your own which is quite difficult but I have such a strong like group of friends that they’ve like done so much for me so yeah.

Friends have been important and I’d just quite like to ask about sleep. Is your sleep affected?

Yes definitely.

In what
Due to pain and uncomfortableness, and just yeah just the pain because it’s always in your mind and the swelling can be so uncomfortable as well, so that’s a big part of it. But otherwise I’ve tried so much like I’ve done like the tapes and listened to boring stuff and like tried like the scented candles and the lavender stuff but it never works so.

And do you find you’re in more pain when you’re tired or is it a case that the tiredness brings the pain, or is there not a relationship there really?

When I have pain and when I get tired the pain feels so much worse cos you’re, like your mind tells you not to do stuff because you’re tired and then you think, Oh no, I have to do it but then the pain kicks in when you’re doing it even more. So it’s like, Oh God. I shouldn’t have done this Or I shouldn’t have gone up the stairs and stuff like that so.

Occasionally, but that can, I think that mainly happens to me because, especially if I’ve forgotten to take my iron supplements, because of my anaemia as well, it just all sort of gets on top of it. I do find that if I’m having a particularly bad, bad day with my knee, with walking about and things like that I do get a lot more tired really quickly because it feels like an effort to do anything or go anywhere because it hurts, which drains you. And then if I’ve also forgotten to take my iron it’s just I’d crash and then get home or whatever and manage to get home and that’s it, I don’t move for hours and just doze in and out.

But I don’t know, I still, over my friends and things that are the same age I can still keep up with them, it’s just if I’m having a bad knee day as it were, I would just be like one or two paces behind and then it’s probably that I don’t spend as much time out or whatever than I would normally. But it doesn’t really make much difference, it’s just my anaemia really that depends on it.

I have a lot of trouble sleeping because I like to sleep on my arm, and if I have a bad wrist I can’t sleep on my arm. And then I take a long time to get to sleep and then I worry because I can’t get to sleep and I’ve got all this work to do. So I guess yeah I struggle to sleep often because I’m in pain, and then I worry, so then I can’t sleep even more and I’m more tired, and then more things start hurting. And then yeah, so I think it’s that, it’s either I can’t sleep on my arm or my back hurts, so one or the other.

And you mentioned medication, any medications that help with sleeping.

I haven’t, I tend to just take some painkillers before I go to bed in the hope that they’ll help that.

Are they off the shelf things from the supermarket?

I’ve got a mixture. Sometimes, depending on how bad I’m feeling I’ve got, I buy paracetamol by the bucket load and I’ve also got some stronger prescription painkillers which make me feel a bit drowsy so if I’m really tired I’ll take those cos they’ll help me get the sleep as well and stop the pain. So those are what I tend to do.

Yeah. I’ve actually been videoed by my mum and dad falling asleep in my dinner once. I mean things so stupid; no-one really understands how tired you can get. I mean at the moment I’m sleeping, I mean, I’m going to bed early, going to bed about half eight and waking up then at about twelve the next day. It’s so draining, doing the simplest of tasks can be so draining even going in the school. I would go in the school and by the end of the day I would be completely wiped out, complete, I mean I would fall asleep after I’d come home from school. I’ve fallen asleep on the buses once or twice as well which is again embarrassing. So yeah it’s something that really, you know, that’s one of the main symptoms I would say of arthritis or even having any kind of illness. And it’s really, really bad when you have a flare up because you don’t realise how much a flare up affects you. But whether you do have a flare up, yes you can get tired but compared to the tiredness you get when you have a flare-up is a lot more; I mean yes I fall asleep in places whereas when I’m, you know, OK and I’m a bit tired I can keep myself up. I keep myself awake, I can, I can, you know, do everything I have to do. Maybe not as well as I could do but not to the same extent as what happens when I have a flare-up because when that happens, I mean I just fall asleep. There is no waking, it is a very, very tough thing to deal with.

How have you coped with sleep? Can you, are you OK with sleep?

Sleep is another issue I have. You know I have problems sleeping sometimes because of the pain. Can’t find a comfy position, I can’t sleep on my back or my front because I can’t breathe. So I have to sleep on my sides but when my hips are both swollen it’s quite an ordeal trying to find a sleeping position. I found recently that I’ve had to take a tramadol to go to sleep. I’ve done that for the past three or four nights now because I am in the middle of a flare up. I’ve been offered sleeping tablets, I’ve turned them down but I’m getting to the stage where it is becoming a real issue. Beforehand there, you know, there were things I could do, medications I could take, I’ve got a different mattress, different pillows, you know, different things to try and help me but it is something that is an on-going problem.

And what about things like sleep. I know at the beginning you talked about you’re restless and you’re worried before and couldn’t get to sleep. Is your sleep affected now?

it’s still affected cause my knee hurts I won’t get to sleep as easy cause it’ll be too painful to get to sleep. Then when I start to go to sleep it’ll start hurting cause I’m lying there, and then once we tried putting a pillow underneath it and it got locked up over the pillow and I couldn’t move. When I first had, like when I was nine my Mum had to pick me out of bed and that and pick me out of the bath and that, and I found that really annoying cause I didn’t, cause I like, I didn’t mind my Mum doing it, it’s just I didn’t like it cause I really wanted to do it on my own. So it was annoying to me really.

And do you ever sleep over at friends’ houses?

No. I’ve stayed over a few times but twice I’ve came back cos my legs were hurting and I couldn’t sleep there cos my arthritis was hurting.

And was it, did they bring you back early in the morning?

Once I came back like at eleven because I was too stiff and it was hurting me too much to try and get to sleep.

Does it, I mean, you can say as much as you like, but does it affect being with friends?

Yeah

Your socialnbsp;

Because my friends like to like play out like for most of the day, when I’ll just play out for parts of it, and I would play out there for all day but I’d have to rest and not run around all day.

Do you feel that you get more tired than people your own age?

Yeah I do. I get more tired when I’m like, if I go to the cinema down like or anywhere and we’re walking and we’re going into shops, and I get tired and normally I say, Oh wait for me And then they’re running for the bus and then I’m like, I’m like there and they’re like all the way down there. it’s like, it’s embarrassing but they’re my friends so they don’t really like mind or anything. But yeah.

Does that ever happen around school and just with mates normally or is that quite rare?

It does happen, some, they’re normally like, if we’re walking together up the stairs, they’ll normally be on the next flight of stairs by the time I’m on the one they’ve just been on, which is kind of annoying but it’s a little funny at the same time.

Okay. How about tiredness in terms of sleep then?

I don’t get enough sleep. I normally go to bed around 10, but I normally can’t sleep till about 11, 12. Which only gives me about six hours 45, or 7 hours to sleep. And even then I’m waking up, then having trouble getting back to sleep so, it’s, yeah.

Is that because of your arthritis?

I don’t know, I think its part of being a teenager, and a little to do with my arthritis, cos when your joints are sore you can’t really get to sleep cos you can’t find a comfortable position. And then when you’re a teenager you don’t normally get a lot of sleep anyway, which is, cos you’re always up doing schoolwork or whatever, and then your brain can’t rest and it’s just annoying.

Okay do you find that you wake up in the night in pain?

Yeah.

How often does that happen?

Probably about once or twice a night.

Okay. And is that, is that your joints are just aching? How is that?

it’s normally aching, like aching in a certain place and I can’t find a position that like stops that place from hurting, or a comfortable position. And then I have trouble getting back to sleep, so I’m normally just lying in bed awake staring at the ceiling and it’s really uncomfortable and annoying and tiring.

It doesn’t help that you get such bad fatigue as well. I get really really bad fatigue that you, when you’re tired, when you’re not feeling well you’re gonna feel you know pretty low. I think you’ve just got to manage your expectations with it, and I think that’s definitely something that I got taught when I was, you know, going through everything as a kid just to manage the way I feel. But it is just, it’s just normal, not abnormal I’m sure.

Yeah the fatigue, I mean how does it impact on your life?

I feel like I’m sort of a bit robotic as in I can go for a long period of working quite long hours, especially at the moment, going out a lot. And then going out at weekends or going away for a weekend or doing something like that and then it’ll suddenly just get to a week, which I’m on at the moment actually, where I’ll just be hit with a really bad flare-up and then you just feel exhausted all the time. You know when I get out of bed you just, you can’t explain, it’s like you’ve got some sleeping disorder where you just want to sleep all the time. So yeah it’s pretty bad.

And any other feelings? Were you frustrated or angry or sad?

I got very frustrated that I was reliant on people. I liked to be independent. Do my own things but I was very frustrated especially when I was tired, waking up at night. And then coming home and just collapsing on the sofa with tiredness, you know. it’s very frustrating just not having been able to do what you wanted.

Or having the energy to do it?

Yup not having the energy.

Tell me more about fatigue because I know that pain is very debilitating?

Yup. I remember when I was in primary school and it was. By the time I got to lunchtime I was just so tired because I was working so hard just to keep going and, you know, not let the pain get me down. And in high school I was so determined to go to school and so determined not to miss things that because I was trying so hard not to just give up. You’re just working overtime and doing double what everyone else is doing just to keep on top of everything and not miss any school or miss anything. So with the pain as well it just makes you very, very tired. And I was very pale, lost a lot of weight. It was extremely hard going to school in the morning after being up all night with pain.

And I didn’t, I had to get the bus home every day cause I couldn’t walk and I didn’t like it being on the bus, the rowdy school bus. You’re really tired and just want to get home. didn’t and it’s just I didn’t like it at all.

Okay and is your sleep affected?

For me, yeah, personally, it’s massively affected. I think I think a lot of it is kind of habit that for so long I wasn’t sleeping well that now I’m just not used to having a good sleep. And again, yeah, it’s a lot of emotional aspects of your life I think you don’t really consider until, you know, it comes to night time and you go to bed and you try to put your mind at rest and you’ve got all these things kind of whirring through your mind. it’s very difficult to try and relax I suppose for me. So yeah, my sleep is affected but I try again, to not let that get me down too much because then I know the more I think about it the less I’m likely to sleep. So I just sleep as and when I need to, you know. If I feel tired during the day, I don’t let myself feel guilty about it, I’ll just go and have a lie down because I know that it will make me feel a bit better.

It is a very difficult one to try and explain and I think the only way I can try is by saying that when I’m in a lot of pain and warmth is the best thing for me but you’ve maybe found that loads of people say something warm that kind of calms your body down a bit. So you kind of I’ll curl up in my duvet and try and go to sleep and if I do fall asleep I tend to find that it’s not, you know how there’s like three different levels of sleep and one of them is where you’re kind of, you’re awake and you’re kind of aware of what’s going on but you’re tossing and you’re turning. A lot of my sleep is like that and it’s just because I can’t get my body comfortable enough to lie when I’m trying to get to sleep. So I can feel all the pain and when I move, even just springs in a bed, if you don’t have that properly cushioned, the slightest little imperfection in the mattress will dig into your joint and it makes it ten times worse than what it already is. That’s what happens for me. I toss. I turn. I’m up all night sometimes as well if I can’t get to sleep until maybe about two, three in the morning but I’ll be up for seven because I’ve got things to do. So insomnia, yeah.

Can you function okay without the sleep or with the disturbed nights?

Not really, no because what’s tending to happen now is that if I’m losing out on all this sleep, I mean you get I get really bad fatigue anyway because of my arthritis. So when, if I haven’t had that much sleep, if I do fall asleep I will sleep for hours as long as nothing disturbs me and I’m like any other person. I’m very crabby if my sleep is disturbed. So I tend to sleep a lot during the day now, a lot more than I used to. My sleep used to be fine. The older I’ve got and the more emotional I’ve got about it, the worse my sleep has got.

I try to eat well. Now when I say well, I don’t mean eat a lot. I try to I try to eat healthy because, although people that are tired might look for a quick fix, so such as a caffeine fix or a chocolate fix, I know that it’s very short term and within an hour you’ll have a huge crash and you’re often worse off than had you not ate anything at all. So it’s about eating sensibly. Not eating, you know, just vegetables, you know. Try and eat good meals, you know, and don’t leave too long between meals because if you leave, if you have a really early breakfast and a really late lunch, that can affect the performance for the rest of the day despite how much you eat. I try to take a lot of vitamins. There’s a few that, I can’t remember which vitamin, but some vitamins are quite good at making you energetic and I try to, there’s a few a few drinks. I don’t know what they are, but you can get these effervescent tablets that you drink and you mix with water and, you know, they can make you a bit energetic.

How do you kind of cope, how do you manage with these things?

It’s a very tough question. A positive outlook I think and support. I find that if you don’t accept the support, you know your pride. People don’t accept the support that’s offered to them. You know you should swallow that pride, you should take, I should take whatever support is on offer to me. When it comes to things it’s again having my mum playing devil’s advocate, you know, are you capable of doing this? Are you sure you’re not planning too much for yourself? You need, I mean I now I get myself days where, you know, I will not plan anything and although you know, people they say that’s lazy but having those days to kind of recoup and have a bit a, you know, have a nap or whatever. I mean even having naps on your busy days but I found that, I would go to school, I would come home, I would have a nap for an hour and then I’d get up, do my homework, have my dinner, have a bit of, you know, me time and then go to sleep and then of course, we had a routine. Now with university it’s a bit easier to find times to sleep than as I say you’re not in school the whole time you can have a sleep in and then start your work or go to your lecture which is a bit more friendly, you know, in terms of arthritis. But I’ve been trying to manage things like that, it’s, I mean, it’s so hard to describe how you do manage it. Sometimes you just have to get on with it no matter how mean I’ve been yawning all today, been having quite a bit of trouble trying to, you know, get into a place where I am. OK again but as I said it’s just trying to push through that and it’s unfortunate. I mean people shouldn’t really have to but it’s a sacrifice you need to, you need to make.