SPEAKER_00: you guys i have such an incredible interview for you today this is a really special one this is not something that comes along every day or every week i am so excited to help share the incredible story of someone who was very unwell with mecfs for thirty three years at times severely unwell bed bound just really struggling and is now here today to share her full recovery story from mecfs i'm here with irene o'brien over in surrey in england and the story is so special to me personally because my mother was sick with mecfs for almost thirty years and i have a really good sense of what that looks like and how easy it can be to give up so i'm excited to see that once again we have so many examples that it's never too late no matter how severe no matter how sick no matter how long there is still hope and there are still ways out of this so please join me in welcoming the amazing irene irene so great to have you here today thank you so much for doing this thank

SPEAKER_01: you very much for having me yeah you help anybody

SPEAKER_00: yeah so amazing that you are doing this today sharing your story and i know that you've persevered through people watching a solid half hour of technical problems that were my fault

SPEAKER_00: this woman has so much patience clearly if you lived with cfs for so many years and didn't give up so you've had quite the journey with this so tell us about that

SPEAKER_01: yeah well it sort of came out of the blue obviously as it does for most people i was quite had a very active life you know sort of running around all over the place doing looking after three little children i did all sorts of extra activities you know i ran a youth group i ran a sunday school i did volunteer work at the school fundraising was in a bible study so burnt the candle at both ends i was i think i used to sleep from about two three o'clock in the morning and i'd be awake at five and just on the go but i had lots of energy so it didn't matter one day i just was driving home from school having done a fundraising thing and halfway up the hill i thought i don't know what's wrong with me i just can't go any further and i stopped at my friend's house and she said to her i just don't know what's wrong with me i'm i just can't do anything so she took me home and i was there for the next eighteen months was in bed i felt fine when i laid down and then i felt like i had energy and i think i'll go and bake a cake the minute i stood up i just couldn't do anything i just drained of energy completely so i was there for eighteen months and i was very lucky with the three children i had quite a support group lovely support group who fetched and carried and did everything for me had a lady that used to do the cooking and yeah so the children were well looked after and they used to come home in the afternoons and sit in the bed with me and would do homework things like that and then after the eighteen months well back in those days they just said well you've got yuppie flu as it was called

SPEAKER_01: and all you need to do is exercise and eat well and that's fine but exercise was completely out of the question but after eighteen months of being in bed i did sort of recover slowly but never completely so i was able to live a fairly good life but always tired constantly tired so i mean that went on for many years then i came over the uk because i was in africa at that time and i came over to the uk with my daughter for the first couple of years it was fine but then i started overdoing things again i was walking like ten miles every day just to try and get exercise i picked up a couple of viruses because i was working in a care home and i picked up two viruses and i was on leave for a month at the end of the month i woke up at five in the morning to get ready to go to work and i just i just can't get out of bed i can't do this again i'm back to where i was in the beginning so i actually had to retire at that stage and then being retired again then i thought no i've got to keep up the exercise so i kept pushing myself pushing myself and then i moved and that was quite traumatic

SPEAKER_01: and then i started again going on this sort of exercise thing i had to walk there's a place called box hill which is near us which is where they did the olympics cycling i took to walking up that if i couldn't do a long walk i would walk up the steps to the top it's about maybe i think it's two hundred meters or so the top ascent but yeah even when i was tired i wouldn't let myself not go i'd wake up in the morning at five o'clock and make sure my clothes my walking clothes were in the bathroom so as soon as i got up to go to the bathroom i put my clothes on grab my bag and i was gone before i'd had anything to drink or eat or anything i just went walking i'd be back by seven eight nine o'clock sometimes have a shower and of course i got to the stage where then i couldn't really do anything for myself you know so once i got back i just had to lie down because i couldn't i didn't have the energy to cook or anything else so it was okay but if i prepared my breakfast but if i hadn't then it was a problem then i would eat anything that i could just put hand to you know i put on a lot of weight which of course then exacerbates it because you get on like a treadmill and then one day when i walked i was going up box hill it was about six o'clock in the morning and i got to a certain place and i thought i don't sit down i'm going to fall down so i sat down on a tree trunk that was there and normally there were people walking up and down you know doing training for marathons i suppose they were running up and down there was nobody there that morning and i sort of sat there for a bit and i thought but i can't stay here as i'm sort of halfway up the hill well three quarters of the way up the hill if i don't go up i can't go down and i've got to go so i stood up and fell over i just collapsed but i got myself up eventually and went up to the top went down the hill and that was it went to the doctors and i said i just don't know what's wrong with me i mean i you know i knew i had me but i had shelved it i just wasn't going to have it and they just sort of said well no there's nothing much we can do for you and they sent me on a course with the nhs to try and get help and they did all the tests you know the usual tests and things that they did but they basically said look there's not much we can do you've got kind of learn to live with it you've got to just pace yourself do what you can

SPEAKER_01: but i've never been one to actually accept that that's going to be the rest of my life because at that stage i wasn't able to do anything i mean showering was something that i did if i'd saved up two weeks worth of energy to go and have a shower if i had to share a shower and wash my hair then it was going to be another two weeks afterwards that i was not able to do anything so yeah it was very difficult at that stage and just before lockdown so that was what twenty was it twenty twenty one i suppose yeah i think we went into lockdown twenty twenty one a friend of mine had come over from south africa to help me just to see if there was anything they could manage to do and of course ended up being in lockdown with us with me

SPEAKER_01: which was quite it was a blessing for me because then i had somebody do the cooking and the washing and everything else so they kind of took over and looked after me but i did get to the stage where i sort of thought okay i'm feeling better so i think i can do this but the moment i had to start doing my own cooking washing and everything else i was back to square one and you know couldn't really do much luckily i had all my groceries brought in because with lockdown we could do that we could have it delivered

SPEAKER_01: and i used to watch a lot of your interviews that you used to give what you still do the interviews that you give and this friend of mine was looking watching and i got you know sort of i don't know whether i'm just lazy or whether it's just that i just didn't have the energy to actually do all the things that one's supposed to do to try and get better you know i'd read a few books as i get halfway through and then i just i just can't do that i try a different way of eating and then it would just be too much it's just everything was just too much and then i heard you jason and that i can thrive and you were talking about brain retraining rewiring your brain and my first reaction was oh no raylan no when do you start telling me it's all on my brain it's

SPEAKER_01: and i was not impressed i thought no i'm going to find somebody else to watch because raylan's gone to the other side you know

SPEAKER_01: to say it's all in your mind anyway then i saw another one of yours again with jason and i thought okay so what you're saying is it's not actually in your mind i think it was more jason saying not in your mind it is that your mind if you retrain your brain to think let me try and say that again

SPEAKER_01: because your brain is stuck in that flight or flight mode and that's just because of having overdone things all the time your body is trying to protect you so your mind then would just shut down the moment you did something because it was scared you're going to overdo it if you know what i mean does that make sense

SPEAKER_01: so you know when he when i heard him explaining all that that in fact your body has switched down some of the genes that you have and now you're stuck in this fight too much you know it just started making sense to me because quite a laid back sort of person always have been but i suddenly found myself stressing about silly things the doorbell rang for instance i would shoot through the roof you know just like i was a gibbering wreck that's stupid even if i was expecting the doorbell to ring it was just i was finding my shoulders creeping up what are you doing you know and i had to physically relax so that was

SPEAKER_01: then i contacted jason and went onto his program because it actually really made sense and after chatting to him i think it's something i could do for quite a while i've been looking for something you know that i can do that i know i'll follow through and so it sort of clicked for me and then having done worked with him i found it really really helpful because i've never ever thought i'm not going to get better you know i've always thought i know i can i can get on top of it maybe not be healed from it that was something i had a problem with as well when people talked about being healed from it no i don't think you can be healed from it i think you can go into what do you call it remission yes remission that's it and i don't think you ever get healed from it i think my mindset's not changed and i think you can actually be healed from it yeah and in the process i mean i've learnt to listen to myself listen to my body i think that's so yes there's been a lifestyle change in a way i've had to it's been a journey of getting to know myself work out what my triggers are and i think that's that's been the biggest part for me is learning what i need to do to keep myself healthy instead of going back if that makes sense to you

SPEAKER_00: it does yeah something i hear a lot of people say in interviews about their journey definitely seems to be a reoccurring theme with people i find it so interesting and amazing that you made it through all those years those hard years and still never gave up that belief that you were going to recover i'm sure you had days where you weren't like yes you probably had your down days but overall you held onto that and it would be very easy to get jaded and give up all hope after all of that time so do you have any idea what it was do you think that kept you in that

SPEAKER_01: mindset i'm just a very positive person i think i'm also obstinate

SPEAKER_01: you're not going to tell me how i'm going to be for the rest of my life

SPEAKER_01: so i think part is just my personality is like that i never ever felt in fact i was almost like in denial so like you know i'd go to the doctor and say well i'm really struggling but you do know you have me don't you yes well i do but yeah well okay fine

SPEAKER_01: but i think it was a lot of that is just not really accepting it i just i mean i knew i had it and i knew that it came with all that fatigue but part of it was probably just ignorance

SPEAKER_01: be part of it

SPEAKER_00: when you finally got onto this path where you were making progress you found what was kind of making sense for you how long did it take you from that point to get to a place where you're like yeah i think i'm pretty much fully here back

SPEAKER_01: well it didn't take long it didn't take long at all i think like i was getting to the stage of my illness where i thought i'm not going to give into it but i am going to have to make life changes i can't carry on dreaming about the fact that one day i will be carrying going up box hill again and going out for walks in the forests and things like that my life is going to have to change from that point of view so i think that's sort of the closest i got to saying okay this is never going to happen but then working with jason it was quite soon as soon as i you know he he goes through like relaxation and then this is the other one well there's quite a few things that he goes through but then being positive you know trying to think what he would call it but that for me as i said was the easiest one because he said to me oh like we go through certain steps what would you like to go through today and i think he thought that that would be the hardest maybe for some people that is the hardest is just accepting that i am going to get better so i had no problem in believing that at all the problem i have is the one full relaxation i'm not good at relaxing i'm really really not good at relaxing so i've always found that a struggle you know people say do meditation and this meditation is something i just

SPEAKER_01: i've always struggled with it so that sort of came into line though once i went through all that yeah i can do this i am confident that this is this is going to work this is a good thing and then the relaxation took a bit more work so i think once i once i've got into it probably about two weeks i could feel the difference

SPEAKER_01: it was quite quick but it's been while longer that it's taken me to yeah to get back to knowing that i'm fine now i'm fine i still have my days when i'm tired get me wrong but then i know i've overdone it you know so i now can stop myself before i actually get to the stage where i'm really pushing pushing boundaries you know i mean the other day i thought i walked from here i walked about six kilometers to another little village caught the bus from there to another town and then when i was sitting waiting to come back on the bus i thought my bus is fifteen minutes time and this one is ten minutes i can go on this bus so i jumped on this bus it was going to take me to another place which was two and a half hours away from where i needed to be but it went through another village and i thought you know what i'm tired so i think i'm going to get off here because i can get home in half an hour otherwise if i carry on on this path

SPEAKER_01: it's going to be another at least two hours before i get home so i was able to stop myself from that no i'm doing this because that's what i set up to do so you know i think it's things like that

SPEAKER_00: yeah i think it's really like the brain training continues even once you're in that recovery phase because all of those old habits and personality traits are there it's pretty ingrained it's you think it's just knowing that it's not good for you i was naive that's what i thought i'm like okay i've seen the light this isn't the way you're supposed to live i'm going to do better and then i thought i could just flick a switch and be a whole new person

SPEAKER_00: and it's still something that i'm working on

SPEAKER_01: i think you do it's something that you constantly having to be worked on because i think a lot of people with chronic fatigue are people pleasers yeah well you know i think that's quite a common theme so there's things i've had to put in place where you know like if my phone rings i let it go to voicemail if it's not you know if it's one of my children obviously i'm not going to do that but they might be watching

SPEAKER_01: you guys just everybody else

SPEAKER_01: i just did it go to voicemail because i can deal with it when i want to as that's something i'm not i know i'm not good at is when something comes up and people ask me to do something they don't expect you to do it now they'll say at some stage could you do this that doesn't work for me if you've given me something to do i want to do it get it done so now i do let my phone go to voicemail and i can just ignore it and eventually sort of pick it up later when i when i know i've got the time and i feel like doing something so it's yeah it's it's learning boundaries

SPEAKER_01: the hardest for me was learning boundaries

SPEAKER_00: boundaries with ourselves and with everybody else

SPEAKER_00: when to get off the bus and call it a day and also want to put it to voicemail exactly yeah and i also think recognizing that you need rest for the rest of your life and your body will have limits even once you're well so you know i just so many people i talk to have interviewed have talked about this concept of like real rest like what so many of us think these days of as rest and when i'm like oh i'm a bit tired maybe i should sit down and watch tv for a bit or scroll instagram but that's not really rejuvenating so now i make myself every day lay down and take a nap or do some meditation and i actually smile and i say to myself in my head i'm like real rest and i'm just trying to kind of retrain that habit of like this is a good thing you healthy people do this

SPEAKER_00: yeah i

SPEAKER_01: think that is important i'm not good at resting i really am not as you say i'll sit there for a bit and then i think let me just see what's on my phone you know just

SPEAKER_01: let me just check facebook

SPEAKER_01: you really don't need to

SPEAKER_01: being aware of the things that encroach in your life like the phones in the evenings i just leave mine in the lounge when i go to bed that i'm not in the morning when i'm awake and i feel like getting up then i can look at my phone

SPEAKER_01: yeah it is it's training yourself all the time realizing what put you where you were and then going forward

SPEAKER_00: what is your family or your friends people around you think of this you were unwell and struggling in various degrees sometimes really severely for a really long time do you tell them that you recovered through something called primarily brain retraining or what do they think what is those conversations look like

SPEAKER_01: well i mean my my family have been very supportive obviously they've seen me at my worst they said to me i even look better you know they can't believe the difference and how much better i look obviously i'm able to do things i'm not sure if they really understand the brain retraining they well they were people in signs so this would like question things more but they can see the difference that it's made and they understand the whole thing behind it so they actually

SPEAKER_01: people that don't really get it the people who never got the cfs in the first place you know the people who

SPEAKER_01: mustn't isolate yourself no no no you're doing this all wrong because you're becoming a recluse and you just keeping yourself away from people because i would just stay in my flat obviously because i didn't have the energy to do anything else so they never understood it then they certainly don't understand it now

SPEAKER_01: maybe if you had done more you would have got better quick because they didn't understand it in the first place

SPEAKER_00: yeah i think there's just a certain level of acceptance that has to happen for all of us that just the majority of people as much as we want them to are just never going to get it what it is

SPEAKER_01: that i do have to at the moment try and control my wouldn't say temper

SPEAKER_01: i can flare up when people say silly things sometimes

SPEAKER_01: why do i need to worry because i don't really care what people think to be honest i don't but then sometimes i will just flare up when somebody says something that clearly shows you don't understand

SPEAKER_01: why are you even pretending to try and understand when you're not even you're not

SPEAKER_01: you know and that's something i struggle with but i'll get

SPEAKER_00: i think that's pretty normal i suspect virtually all of us have our limits where we're like okay my patience is gone my acceptance is gone

SPEAKER_01: what's wrong with you

SPEAKER_01: but yeah i'm not used to being to flaring up with things

SPEAKER_01: but i think it's because i know i know what i've been through my family know what i've been through when somebody minimizes it you can think no

SPEAKER_01: you know it is hard it is hard for anybody who's been through that gone through it

SPEAKER_00: yeah yeah it still gets me as well i obviously get a lot of comments and stuff and the majority of people are really positive and supportive but everyone get people they're like oh if you recovered and you were never sick and it still gets me i still have those trigger points like how dare you you don't know what i've been through it was a nightmare it was but it's just

SPEAKER_00: i don't think we're ever going to escape it

SPEAKER_01: you just have to let it go it doesn't matter

SPEAKER_00: irene thank you so much it is so incredible that you took the time is very generous of you to do this with your time and energy and i know it's not an easy thing to do these sorts of things i know lots of people out there are going to really appreciate it so really genuinely thank you so much for doing this today irene this was incredible

SPEAKER_01: well as i say thank you very much for letting me come talk to you because i hope it helps somebody you know

SPEAKER_00: yeah i just there's so many people out there that have been struggling for years or decades it can start to feel pretty hopeless so seeing that people are recovering at all different stages after all different amounts of time different levels of severity i think just putting that information out there helps people have the hope they need to have that fuel to keep going because it's a tough journey for people watching of course everything if you want information about the program that irene used it will all be linked in the video description for jason mctiernan tiernan his program is called i can thrive and yeah just thank you again for people watching i'm sending massive hugs to you keep at it you have totally got this don't give up until you find your answers i hope irene is an incredible example of that so yeah thank you for watching
