I’d want to tell them how frightening it is, just making the effort to go and see them. You know, I just felt like it was the biggest ordeal in the world going to see the GP because I was so frightened of not being believed. And I think like if the doctor had said to me, ‘It’s ok I believe what you’re saying. I would have been able to tell them a lot more. But I felt like they looked at me like a teenager or, you know, ok I was a little bit older than that. But they looked at me and they were just sort of making judgements about me because of who they thought I was. And I didn’t, you know I didn’t want to be this. I didn’t want them to think of me as like someone who is just lazy or someone who is trying to get attention.

You know like I’m a young female. I lost a lot of weight so they started saying things about me being anorexic and it was just because they judged my age and who. You know, they didn’t know anything about me and I felt like, you know, I just wanted to scream at them and say, ‘No that is not what’s happening. But I think, you know, I’d want to say to them just listen to what I am saying and try and make it easier for me to explain. And don’t just like make judgements on who you think I am.

But I think it’s also really hard for doctors to like appreciate when you’re making a real effort because I was so nervous, you know, I talked to the floor and I didn’t want to say very much at all. So then they couldn’t really engage with me and I think it would have been really helpful if like a doctor, you know the doctor had said to me, ‘I can see you’re, you know, you’re nervous and I can see that you’re making a real effort to be here. And I think like that’s the thing I would say. It’s that, like, acknowledge that it’s really frightening and acknowledge that it is really hard to talk to a doctor when you’re sort of talking about things that, you know, you’re not really sure what’s going on yourself. And I think like, you know, doctors always, they can come across as being very factual. They have lots of facts and often you don’t have any facts and you don’t know how to explain it in like big words. So you don’t explain it at all. And you know, then that’s really silly because if I had explained some of the things I think they’d have been able to help me more.

So by that time it had been going on for about a year and I was getting really upset because I still really wanted to finish my degree. And so we went to see the university and they said that there was a part-time course that I could do where I only had to go for two evenings a week. And so I thought, sort of thought about it and I thought well it’s not going to be the life that I wanted to have at university but, you know, I really wanted to get my degree so I gave it a go. And that was brilliant because the people that were on the course were all mature students so they were all like, they treated me like their granddaughters most of them. And lots of them were in their 60s or 70s and wanted to just to it, do the course for their own, you know, interest really. But they all had like, they all had so much life experience that they didn’t really care that I was different. And they didn’t really care that, you know, I’d get really tired and probably need to go and have a rest in the middle of the class or whatever. They weren’t bothered about that because they all had people in their lives whod, you know, had different experiences. So they, they weren’t like, like teenagers who judge you and sort of think, ‘Oh you’re different why can’t you do things?’ They were just like, oh, you know, that’s just the way I was. So that really gave me loads of confidence. And it took me five years to get the degree in the end but I did it [laugh].
At the moment I’ve just finished a Masters degree which was something I really, really badly wanted to do. And I actually wrote to the university when I started the course. On my application I explained to them about having M.E. and I actually sent them some leaflets from AIM that explained what M.E. is and explained the Functional Ability Scale. And I sort of basically did my whole application based on the fact that I now believe that I can manage my day-to-day activities. And that you know, I’ve learnt from that how to manage doing university work as well. And they were really impressed with that and they came back to me. And they said that it was really nice just to see somebody whod made something, something negative actually become something that can basically go on your CV or could be a work skill. Because they said that I’d shown that because I’d learnt to manage my daily life, you know, I would be able to, to manage university work.
And basically doing my MA was a case of really being quite strict with myself and planning. Whenever I’d got an essay coming up. Ok so that might involve a few late nights [laugh]. So you know, how am I going to plan for that and when are my lectures? So how am I going to make sure that I get rest times the day before? How am I going to make sure that, you know, I get the work in on time without making M.E. an excuse? Because I really, really hate to be the sort of person who has to go and say, ‘Oh I didn’t do this because of my M.E. Because then I always feel like it’s won. So I always want to be able to, to say, ‘Yeah I got my work in on time and M.E. wasn’t a factor in that.
So, you know, I just wanted to be really strict with myself and I wanted to prove that I could do it as well. You know, I saw the whole thing as an exercise in proving that I can be in control of this and that, you know, I can get my work in on time and that I don’t have to go and apologise because I’ve failed it again, you know. But it was very scary because going back to uni and committing. The course was for a year. So committing to a year’s course having basically had to pull out of the fulltime undergraduate course was really scary. Because I just thought what if this happens again? You know, what if I’m pushing myself too much and I get ill and I have to fall out again.

And that was when I decided that I wanted to get a part-time job as well. I just have a Saturday job in a library. And like again it was like a massive step for me because I was so nervous about sending a CV to anybody because my CV has nothing on it. You know I don’t have any work experience and I have a big gap where I started uni and then stopped uni. And I just thought any employer’s going to look at that and, and not want to know. And I felt very nervous about having to go to an interview and explain why there was those gaps as well. But in the end it was worth it because, you know, in the interview the people didn’t really seem to mind that much. They were more interested in what sort of skills I had in time management and what sort of skills I had with people. And of course those were things that I’d had to learn anyway [laugh]. So it in a way, you know, again that was like a positive thing because I was able to sort of say, ‘Well ok I don’t have office experience but this is the experiences that I do have. And so, you know, that became a positive thing then. And it made me stand out in the interview because it was different from some of the people that, you know, were going in there with the same certificates. And, you know, they’d all got the same things.

So yeah now I have a part-time job. That’s a Saturday job so that’s kind of really nice as well because I can earn my own money for the first time. And you know, that money is just mine and I’m not always borrowing from my mum because you know, that was what. Another restrictive thing is that you feel like at 23 or 24 years old you’re having to ask your mum for money. And I felt so bad about that because you know, I just thought no parent expects to have to be paying for their child when they’re that age. And it’s bad enough that I’m living at home with her still at that age but, you know, now at least I can have my own money and you know, do some of the things that I pay for myself.

What about your family? Were family relationships affected?

I think the hardest thing was for my mum definitely because she was like, you know, the person who had to look after me all of the time. And I think it must have been really hard for her to have her friends come and visit, you know, and I was still upstairs in bed or you know, she’d have to keep making sure I was ok. And that must have been really restrictive for her and she couldn’t go out very much because I was always there. And I, yeah I definitely felt really guilty about that a lot and it, you know, I used to worry about it a lot. And I also used to get really angry because I felt like I was a little child again because, you know, I was so dependent on her.

And then I think, like because I got more healthy and more able to go out and do things then she’d really worry about me. You know, she’d be sort of saying, ‘Are you sure you can do this? You know, you must be back at this time. And I’d get really frustrated because I was like, ‘Mum I’m 22 years old. You know I can take care of myself. But of course because I hadn’t been able to take care of myself for so long she couldn’t help it. She was just worried about me.

But then on the other side I think I got to know her a lot better than maybe I would have done. You know, I didn’t move away to go to university. I had to stay at home to do it. So, you know, I definitely have a better relationship with her because I know her and, you know, she definitely knows me really well now. So I think in a way that was a good thing. But you know, it definitely made it more difficult.

And again I think some of my friends couldn’t quite understand because I’d sort of say, ‘Well you know I’m just going to call my mum and tell her we’re going to be 20 minutes late. And they’d be like, ‘Why, you know, you’re 22 years old?’ And I’d be saying, ‘Yeah but I know that she’s going to be worried about me and I know that she’s doing it because she cares about me. And they’d be like, ‘Oh, you know, my mum’s always fussing over me. I never ring her. And I’d just sort of think, well that’s fine but I’m still going to ring my mum because I know she’s not fussing. I know she’s just trying to help me.

And I think like that was a really good thing was having that support. You know, I knew that she wanted to help me and sometimes I did need somebody to say, ‘Oi you’re doing too much. You know, sometimes she would say to me, ‘You look exhausted. I know you’re doing too much. Stop. And I need her to sort of just say that and, and you know, maybe I’d need her to ring, ring somebody or ring a friend and just say, ‘Actually, you know, she’s not coming out today. And, you know, I probably maybe wouldn’t have been quite so strict with myself if I didn’t know that she was also supporting me. And also I, you know, I didn’t want to let her down. I didn’t want her to, to sort of, you know, have given up all that time and all effort and worry making me better for me to then go and do something silly and let it, let her down.

But then like the other side of it was having friends whod also had M.E. that I got to know because then I could talk about things like that with them because there were some things I just didn’t want to talk to my mum about.

Like what?

I always used to really hate telling her if I felt worse because I knew that she’d worry more. So I didn’t ever want to say to her, ‘Mum I feel really bad today. Because I knew that she’d get upset and she’d, you know, she’d be worrying. And also I didn’t always want to tell her how scared I was about

I think probably just like listen to yourself and be honest with yourself. I was really guilty of denying a lot of things and trying to pretend it wasn’t happening. And I know now that, if I look back, if I’d gone to the university earlier and explained to them what was going on I wouldn’t have had to give up that first course because I know they would have helped me. And I know they would have, you know, taken the pressure off. But I didn’t want to admit it because I didn’t want it to be true.

And I think that’s like the biggest advice I would give, is just be honest and, you know. Be honest with yourself. Instead of sort of saying, ‘Yeah I can still do this. I’ll be fine. Think actually can I really do this?’ And I think the other thing is being patient. I wanted it yesterday. You know everybody wants to be better yesterday. Everyone wants it over and done with and it is really, really hard to be patient. But I think if you can just give your body the chance, you know.

You hear of people who rush out to get every cure they can find and they take all these strange, weird, wonderful tablets and you sort of think, ‘Yeah but now you can’t know what’s helping you and what’s not helping you. And maybe it is just listen to your body and listen to what it’s asking you which is just to rest. And maybe that. You just have to be really patient and just do that. But like I know hard [laugh] it is and I, so I didn’t want [laugh] to do it myself. But yeah I mean I think if, you know, if I could do it again I wish somebody had said that to me. Just try and relax and just be patient. Then I probably would have found it a bit easier.

And then things began to change as you were able to do more things?

Yeah, yeah.

Can you take me through that in more detail?

Yeah well basically that was when I was about 19 was when, that was literally when I kind of had to give uni and I, you know, I couldn’t go out and do anything. And I probably had about a year where I literally only had about one or two friends that I would see or would answer the phone to and the rest of the time I just sort of, well I’d just have my mum looking after me.

And when it got to about 20, just after I was about 20 that was when I started to be a little bit more physically able to do things. And that was when I wanted to go back to university. And that was, that was a massive ordeal because I was so frightened of what people would think of me. And I was so frightened of not being able to finish the course and if I drop out again are the university going to think I’m just taking the mickey. Are they going to think I’m just lazy. And that was why it was so nice to, to go on the part-time course with older students because they didn’t judge me at all. And that was really my first kind of thing about getting back into sort of being around people.

And like, I like, I remember, I always remember going there the first day and I was actually shaking and I just felt so sick and there was a lady who said, ‘Oh you can’t be in this class because you’re much younger than us. And I said, ‘No I am. And I just thought, ‘Oh I can’t do this, you know this is awful. But actually it was really weird because the reason they thought I was different was because I was younger, not because I was ill. And it was just like, ok so that, that’s. Ok I can cope with that because, you know, I can’t change my age. And once they realised that yes I was meant to be in that class then they just didn’t really take any notice. They were just like, you know, just treated me like I was just one of the, the group.

And it does make me different but it can make me different in a positive way. It can make me stronger. It can make me more mature. And it, it’s given me opportunities that I wouldn’t have had to meet people and do things I wouldn’t have had. I wouldn’t have been able to get involved with the EPP Project if I hadn’t had it. And it makes me understand people a bit more, like I’m more accepting of other people because of it.

And that’s when we started looking on the Internet. My mum actually looked on the Internet to find out information about M.E. and she wanted to find out if there were any kind of groups for just young people. And that’s when I got involved with AYM which is the Association of Young People with M.E. And that, they have like a website and they have a newsletter that they, they send out. It’s like a magazine now because I think it’s grown since I’ve been [laugh] involved. And that was just the first time that I realised there was lots of other young people who had it. And it was the first time that, you know, I actually had some leaflets that explained what M.E. is. And they, they produce a leaflet that shows the Functional Ability Scale which is essentially 0% is when you’re totally bedridden and you can’t do anything for yourself at all. And then it grades up to 100% which is obviously when you’re better. And that, on, on that ability scale you can have a look and see whereabouts your, you know, condition is. And at one point I was about 20% because I could just about sit up in bed but I couldn’t hold a glass and I couldn’t. You know I had to have somebody hold the glass up for me. But that grew, you know, I was very lucky. It improved quite quickly to around about 60% which is where you can go out for a short period of the day. And then it sort of hovered around there for a good sort of five or six years and now it’s gone right up, you know, to about 90% I think. And that was the first time I really had any information was just by going and looking for it. I mean my mum went to look for it herself. And it probably was because I didn’t ask the GP because I was scared of asking the GP and I was scared to ask, you know, that they might think that I was trying to sort of, you know, make a bigger deal of it than they wanted to. They, I felt like they really wanted to underplay it. And I felt like they really wanted to sort of, you know, that they were quite. I’m sure they were quite sure scared themselves because they didn’t know what to do. And that goes so against a doctor’s whole training isn’t it. They like to be able to cure you. And I felt like the GP was sort of saying, ‘Well there’s nothing we can give you. There’s nothing we can do for you. And I don’t think she felt very comfortable having to say that. So I didn’t want to then ask, ‘Well can I have some more information. Because I felt like, you know, I just felt nervous about doing that really.

But at the same, that was at the same time that I started volunteering for AYME (Voluntary organisation for young people with M.E ). And they run a, or they ran a yearly conference and I sort of got in touch with this girl who was also volunteering for AYME. And we’d written some letters to each other and some e-mails and things and she said to me, ‘Did I want to go to conference?’ And I was absolutely terrified. I just thought three days away with total strangers. I just don’t know if I want to do this. But I, I thought you know, you’ve got to, you’ve got to make an effort. I’ve got to be brave and it’s going to be with people who at least do understand M.E. So I took that plunge and went. I have never been so scared in my life. And I remember getting there and just walking through the door and thinking, ‘I can’t handle this. I shouldn’t have come. I don’t want to be here.

And then two or three people just sort of started talking to me and just being kind of really friendly but not sort of, you know, pushing me too much. And I thought, well ok just stick with it for a little bit longer. And I had a really, really good weekend. And this girl that I’d been writing to it was like we had known each other our whole lives. It was really funny. We just really hit it off and we were just like laughing immediately and having a good time. And I learnt a lot there because there was a lot of people whod had the same experiences and it was like, it’s about the first time that I ever sort of thought, ‘Hey it’s not just me. I’m not just a freak. There’s lots of people that are having this happen to them too. And it wasn’t so much the physical things. It was like the way they’d felt about what was happening and the way they felt like they didn’t want to make friends with anyone. You know that was really weird to be in a group of people all laughing and joking saying, ‘Yeah I’d felt like I didn’t want to make friends with anyone. Because you’re like, yeah why are we all here? And I guess it’s like there is always that part of you that, you know, you do it as a safety system. You sort of think, right I’m not going to be friends with anybody because that way no one can know about me. No one can hurt me. And then when you do make that effort you think, ‘Ok well I might say I don’t want to be friends with anyone but actually I really do because these people are, you know really nice. And that gave me a massive confidence boost.

And then I did, I did a lot more volunteering with AIM. And they have, they run service teams. They have six service teams that run all of the services for the charity. And so I became a team leader for one of the service teams and I had something like 23 children or young people who were working for my team. And I was in charge of like making sure that they all did their jobs and they were all happy and things. And that was like the first time I got back to having responsibility again because, you know, at school I used to be. I was, I was head girl and I had responsibility and then all that had gone away. And that was the first time I got back to being like, ‘Hey I can do this again. You know, I can achieve things. So that gave me like a massive confidence boost.

What do you think is the best and more effective way to give young people information about how, about self-managing?
I think other young people having done the workshops that we’ve done, it’s amazing just. You can, you can have two young people who are in a room and they can be like, I’ve never met somebody else with the same condition as me. And that can just make all the difference to them. You know you see very shy, very nervous, very frightened people come in. By the end of the day they are laughing and they’re relaxed because they feel like it’s not just me. And I think like that’s what happened to me too was going to that conference made me see it wasn’t just me. There were other people around and they still liked me even though I had a condition. And I think, you can’t achieve that by, by literature or by telling somebody. You have to let them experience it. And the only, you know, young people want to be accepted by their peers first and foremost. And so making it possible for them to do I think is like one of the most reassuring things that I could think of. And I think also just like giving them a chance to do it in their own time as well. You know not forcing it. I was really lucky in that I was never forced to go and get over it and, you know, go out and get on with it. I was given the time to just get my head around it the way I wanted to get my head around it. And largely it was just me thinking it through myself and not. I didn’t always tell anybody how I felt. It was just, I just needed the time to, to bring myself to go and you know, look at the information that was available.

Yeah it wasn’t really my friends’ fault because you know, when you’re at uni it’s a really busy time. And there’s so much happening and you’re changing and you’re growing up and you’re making all these new friends and there’s so much going on. And because I just couldn’t do it, I couldn’t join in, lots of them just moved on without me. But it was really, like I felt really lonely because I was just at home every day. And just like the biggest achievement of my day was if I could make it down to the sofa to sit down on the sofa for an hour or so. And so it just didn’t really match to them, you know, having passed their exams and you know, they were all getting new flats and like talking about who they were going to live with next and whatever. And I was just like, ‘Yeah I, I drank a glass of water today’ was my big achievement. So they kind of all moved on so it was like, yeah I felt really isolated and really just, you know, on my own with it.

And then my mum had to leave work because I couldn’t really stay on my own all day because I couldn’t really. I could probably just about get out of bed to go to the toilet but I couldn’t get myself a drink or anything like that. So she stayed at home with me and she was getting really, really like worried about me because you know it’s not normal just to want to sleep all day. I could sleep for like seven or eight hours during the day and then sleep the whole night as well. But like every time I woke up I didn’t feel like I’d had a refreshing sleep. It just felt I was still absolutely exhausted but it wasn’t the kind of. I always sort of say it’s not the kind of exhaustion when if you go for a really good run and you sit down and you know you feel like, ‘Hey I’m really tired but I feel good about it. It’s not that kind of tiredness. It’s just like something’s been sucked out of you and everything’s like sort of a big, big lead weight is sitting on top of you and you can’t move it and you can’t do anything to get it off you.