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  • You Can’t Pour From An Empty Cup

    there is a cartoon heart bleeding out and the caption says 'you can't pour from an empty cup'
    You can't pour from an empty cup

    Isn’t that heart just the best image for when you keep putting others needs above your own? You just end up bleeding out. 

    Now don’t get me wrong, I am so guilty of this too. I think as people who suffer from chronic illness we have this awful tendency to try and put others needs first out of guilt that so often we let them down or can’t be there for them in the way that we would if we weren’t sick. It’s like we bargain with ourselves that if we push and go to that  party or help that friend out, it will make up for all those times we couldn’t. The thing is it normally just lands us in a flare and has us cancelling other plans that we will feel guilty about. 

    (more…)

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  • My Pain Isn’t Magically Gone Just Because I Take Pills

    A cartoon unicorn with stars shooting from it's horn is next to a caption that reads, 'my pain isn't magically gone just because I take pills'
    My pain isn't magically gone because I take pills

    Chronic pain (that is pain that last for six months or more) is largely misunderstood and worse still when it comes to women and pain. Which is astounding considering that 70% of chronic pain patients are women but 80% of pain studies are carried out on men or male mice. That’s just not ok! We are given drugs that once finally tested on women tend to just be a load of side effects and little to no benefit which is not surprising when you consider that our immune systems are actually quite different to mens. It’s one of the reasons why scientists think we live longer but it could also be a massive factor in why we are more prone to issues that stem from the immune system. 

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  • All Things Access

    Two cartoon mice in crowns have a caption between them that reads, 'Everything you didn't know about access'
    Everything you didn't know about access

    I have a confession to make, I still worry about getting access needs wrong, so it’s no wonder non disabled people can often feel completely out of their depth with this too. 

    Access is an incredibly personal thing and I am a true believer of the idea that you will never truly understand access issues until you face them. I never really understood how important drop curbs were until I bought my mobility scooter and had to launch myself off pavements without them (it’s not as fun as it sounds and breaks your back!) but what I found is there is a wealth of information out there and some amazing people who are really breaking it down and making it, well, accessible!

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  • Podcast – Episode 1 – Transcript

    Intro Song
    I may not look like I’m sick or I might have to use a walking stick but regardless of where you think I should fit fuck your ableism.

    Hannah Hoskins
    Hello and welcome to another episode of Am I Disabled Now? A Not Your Grandma’s podcast. I recorded these episodes prior to the corona outbreak but I am releasing them now because I think we all need a gentle reminder that there is a whole community out there to support you.

    Hello and welcome back to my disabled now a Not Your Grandma’s podcast with me this week is Ali Hemsley and we are talking all things disability, fitness and choosing the right PT

    Why don’t we start with a little bit about you?

    Ali
    Yeah, so as you know, I’m Ali and 25 I’ve been suffering from ME and Fibromyalgia since I was 17. I’m a full time instagrammer which is exciting, but has its own challenges but it works best me. I’m at a place I’m pretty good pretty managing things with a lot of exercise and nutrition, but I don’t think I’d be able to work the sort of typical nine to five office job. So here I am instagramming.

    Hannah Hoskins
    Yeah great and um you’ve done a couple of things with other instagramers recently as well about using mobility aids and

    Ali
    Yeah I’ve done quite a few which has been really nice. I did one back in must of been March time, which was with two incredible girls, Daisy May who was eight at the time she’s now nine she is a double amputee, and is just absolutely sensational. She is now currently in New York and being the first double amputee child to talk in New York Fashion Week. And she’s going to be walking in Paris Fashion Week, and she will be the youngest ever to walk in that. So…

    Hannah Hoskins
    Wow!

    Ali
    she’s just yeah incredible. Her name is Yeah, Daisy May Dimitri, if you have time, check her out. She’s sensational. And then I also worked with Clara Holmes, who’s rolling funky on Instagram, and she’s got Ehlers-Danlos syndrome. And she’s a wheelchair user. And yeah, we put together this little video and photo shoot just about expressing ourselves through fashion and how you can still be fashionable even if you have a disability. I think there’s often that misconception that if you use mobility aids, you’re kind of not allowed to dress cute.

    Hannah Hoskins
    Yeah

    Ali
    I think there’s that thing of you feel you have to sort of wear big black baggy clothes and kind of cover yourself up and hide away from color and fun. And yeah, I feel like we really dispelled that

    Hannah Hoskins
    personally as someone from the community watching it, it was it was really amazing just to see you collaborate, and just those photos that had so much color and life

    Ali
    Yeah

    Hannah Hoskins
    I think it was like it was so different to what you normally see when you see mobility aids

    Ali
    Yes

    Hannah Hoskins
    and it was just, it was stunning to look at.

    Ali
    I definitely think there’s that age thing as well. When you think of mobility as you do think that’s something that people tend to use as they get older and you kind of overlook all the young people that need them? You know, Daisy she’s now nine, she was eight at the time. And you know, she’s bouncing around more energy than me.

    Hannah Hoskins
    We do have this misconception of, or this idea of how a person should look when they’re disabled. And I think it’s really good that you’re getting the online communities that are slowly kind of breaking it down and kind of saying, look, no, we’re here. This is who we are.

    Ali
    Yeah, definitely. And I feel like even the past few months, I’ve seen so many people sort of sharing their pictures now with their mobility aids and their colorful, fashionable outfit. And I’ve definitely noticed, I’m seeing a lot more my timeline. I don’t know whether that’s just who I follow, but I’ve definitely noticed an increase in it.

    Hannah Hoskins
    Yeah, I really agree with you. And I think there are a lot of people working on,including yourself, that are working on kind of changing that idea. And I think it’s really important.

    Ali
    Yeah

    Hannah Hoskins
    How did you feel the first time you used a mobility? always a good one.

    Ali
    Oh, my gosh, I it’s weird. I actually remember the first time ever that I used it out of the house, and I must have been it was when I was 17. But it was when I’d just been diagnosed and I went to get my haircut. And I don’t know why I did this, but I was having one of those, you know, teenage moments and I’d like I’m gonna get a side shave, and then I’m gonna get my ear pierced. And I looked a bit like a pirate.But

    Hannah Hoskins
    we’ve all had that hair cut.

    Ali
    We’ve all had that right, that was a thing. And it took forever to grow back. But I remember it was sort of the only thing I was like, I want to do this but I’m gonna have to, you know, use a walking stick to it because I wasn’t well enough and it was really scary. But I think because I had such a focus on what I wanted to achieve. It almost made it that little bit easier.

    Hannah Hoskins
    Yeah, I can understand that one. Like it just gave you that little bit like you’re, you have no other option.

    Ali
    Yeah. I was like, I want to look like a pirate. So I must do this.

    Hannah Hoskins
    Do you find that you noticed that people treated you differently?

    Ali
    yes, definitely. For me, it’s one I kind of shied away from those first few years of being ill. And it’s only really the past year that I’ve accepted how much I need to use a mobility aid and how helpful it is, for me those first few years, it was like, I’ll use it if I really need to, and if no one that I know is going to be there,

    Hannah Hoskins
    yeah.

    Ali
    Or I was like, or I’ll just stay home. So it definitely took a lot of time to come to where I am now. And I do notice people look at me and they do that double take of what’s wrong with her.

    Hannah Hoskins
    I mean, I think it’s really interesting because like, I also cuz I come from where I wasn’t disabled for for quite a number of years. And it was only once I got diagnosed that my mobility really went downhill. I do remember always struggling talking to disabled people, because I was never sure like the right thing to say.

    Ali
    Yeah

    Hannah Hoskins
    and I think people get caught up in that. So the minute they see a mobility aid, their brain just goes Oh, no what do I say, Oh no, I don’t. And then because it’s kind of doing that.

    Ali
    Yeah

    Hannah Hoskins
    They seem to say the worst things. It’s like the only things they can remember the worst things to say to a disabled person, like What’s wrong with you? And you’re like, nothing. Like,

    Ali
    Yeah becayse I use a walking stick. everyone assumes I’ve got some sort of leg injury. And everyone Oh, look, I can see them watching me walk going. She’s not limping.

    Hannah Hoskins
    I’ve had even like, complete strangers come up to me and ask me.

    Ali
    Yeah,

    Hannah Hoskins
    What is wrong with me? And it’s that thing that I always hate, which is, I feel like we have accidentally taught people that it’s perfectly okay to ask these questions and to expect some form of explanation from someone. I don’t know whether it’s come from like, where people break bones and stuff. And it’s just like a conversation starter.

    Ali
    Yeah.

    Hannah Hoskins
    And they’re like, Oh, I can see there’s an issue with you. Maybe I can start and it’s like, they don’t know that. It’s rude.

    Ali
    Yeah.

    Hannah Hoskins
    It’s how you tackle that do you know what I mean?

    Ali
    I had this conversation with a man in London a few weeks ago actually, I was just walking on my way to an event with my walkingstick. And this man I’m not even joking. Literally chased me down the street. Shouting excuse me, and I was like, I was turned around. Oh god, what have I dropped? And it wasn’t that he was like, I saw you walking along, and I just had to come and ask you, is that a fashion accessory? Or do you actually need your walkingstick?

    Hannah Hoskins
    Oh, no!

    Ali
    Yeah I said to him I went, do you not think that’s quite a rude question. He was like, No, I was like, Okay, I was like, would you like it if I came up to you, you know, a complete stranger and asked you questions about your health. He’s like, Oh, no, I don’t mind. I was like okay well I do so buh bye.

    Hannah Hoskins
    It’s really hard to have that conversation. They’re when they’re just like, No, I don’t mind I’m like, I’m sure you would. My friend has a perfect explanation to this. What she does is when they ask them she did, she just turns around and goes when was the last time you had sex?

    Ali
    Oh my god!

    Hannah Hoskins
    And you literally see their brains go ‘oh!’ They’re so shocked by it. But also they suddenly realize how rude it is. It’s like since we’re asking personal questions, when was the last time you had sex?

    Ali
    Yeah.

    Hannah Hoskins
    Like it’s just like, again, it reminds them that they shouldn’t be asking those things.

    Ali
    Yeah, you’re like you definitely would but I was, I was full on ready for a chat like, you know about his prostate or something like, no, he ran into pret and told me that I shouldn’t, I think was like, you shouldn’t take that so personally, I was like, I’m sorry. That question about my health from a stranger I took too personally.

    Hannah Hoskins
    How How is that taking it too? personally? You’re asking for personal information.

    Ali
    Yeah.

    Hannah Hoskins
    Well, moving moving on from from that question. What was your worst slash funniest experience with someone being ableist towards you or kind of really not getting you using a mobility aid.

    Ali
    I feel like, I feel like that one was quite bad.

    Hannah Hoskins
    That one was quite spectacular. Yeah.

    Ali
    I did have another one when I was at a train station, I’d had a really long day and I just like grabbed a McDonald’s and I was struggling so much to carry everything because obviously, when you’re using like a walking stick, you’ve only got one free hand.

    Hannah Hoskins
    Yep.

    Ali
    So to carry all my other stuff, I was really struggling and I went over to like the train guard. And I was like, ah, is there seats through on the platform? And he just looked at me and was like, do you need to rest your leg so I was like I do need to rest my legs. He’s like what have you injured, I was like nothing. I’ve not injured anything and he was up but you must have and I was like no, no. This is my body. Welcome.

    Hannah Hoskins
    Welcome to my life.

    Ali
    It was just so awkward. Obviously, it took him a good few minutes to realize that he hadn’t actually answered my question. So I had to be like Well, I’ll just go look for myself shall I? took my little McDonald’s along. It was yeah, I get a lot of that though. I do get a lot of that. What have you done or things like that. It’s this kind of awkward when it’s people that I think through blogging, I’ll know a lot of people, and they might not always see me use my stick, like on my Instagram and stuff like that. It was like I went to a meeting the other week. And I got there and the girl was like, Oh, no, what have you done? And I was like, Oh, my gosh, oh, this is awkward. I was like, No, no, this is me.

    Hannah Hoskins
    Yeah, just ignore the stick. It’s the least interesting thing about me.

    Ali
    Yes.

    Hannah Hoskins
    We talked about the experiences what what for you was the term I mean, do you identify as being disabled? Would you say that that’s a word that you kind of

    Ali
    Yeah

    Hannah Hoskins
    use or? Yeah. So when was sort of the first time that you claimed that and what was the tipping point?

    Ali
    Yeah, I think it’s, it’s been quite a hard one. I think, for me, and definitely, I think for my family, like my mum in particular, she’s really struggled with the word disabled. Like I remember the first time I said it I was like, yep, I’m disabled. And my mum was like, no, no, no, no, no, shush you’re not. And I was like actually, I think I realized that it’s just a word.

    Hannah Hoskins
    Yeah.

    Ali
    There’s nothing harmful or dirty or wrong about it. It’s just a word to describe myself and a whole bunch of other people. And

    Hannah Hoskins
    Do you find that you you were only using it instead, like, for me, I only used to use it in certain circumstances. So for me when I first found that I could do that it was is l Googled it, because of work and I was like, Am I disabled? I mean I read up on it. Because they asked me because someone saw my stick in work. And they’re like, Oh, do you count as disability then and I was like I don’t know, do I? Do you find that you kind of had that moment? Like you were you were sort of maybe using it but not publicly?

    Ali
    Yeah, I think when I went to university, it was only sort of a year just over a year after I became ill. And I remember I was like, applying for disabled students allowance and I was like, Oh, I’m applying for it, but I don’t I don’t really count. You know?

    Hannah Hoskins
    Yeah

    Ali
    and I think especially where you’ve got a health condition that fluctuates. Even though longer term health conditions are classed as disabled, I think you almost have that kind of gray area where you’re like I don’t want to offend people who are struggling all of the time. And I think there’s almost that thing of like, you don’t fit into disabled, you don’t quite fit into abled, and you kind of bounce between them. And I think that, for me, was kind of one of the big things why I didn’t want to claim that word as mine. Um but I think the more that I’ve learned from Instagram and all of the people that I’ve met on there, that’s what changed my thought process. And it was, this isn’t a competition, nobody’s gonna feel begrudged if I use the word disabled, no one’s going to be upset by that. All that’s going to do is allow me to get the help that I need and to express myself and to join a community.

    Hannah Hoskins
    I completely agree with you there I like I think that for me, when I started using it, it basically gave me a shorthand for being able to tell people what was wrong with me without having to give my entire medical history like here you go rolls out the parchment, like, what do you want to know? There’s like 50,000 things. But it is It’s that thing of like, for me, I found that the difference of being able to say that meant that I felt stronger in asking for my access needs, like, yeah, I felt better, kind of, if someone challenged me, I’d be like, no, sorry, I’m disabled. I can’t do that. It changes a lot of things. I think. I mean, did you did you find the same thing as well?

    Ali
    Yeah, I definitely think it just gives you that really short shutdown. If you don’t want to talk about things, you know, I sometimes get looks, you know, when I go and use like a disabled toilet, because for me, I’ll have a key because I can’t stand in a queue. And you just have to come out and just go, I’m disabled, and people are like oh, sorry. And it’s just that really short shutdown.

    Hannah Hoskins
    It just reminds them, doesn’t it. It’s like I don’t know how to explain it, it’s like sorry I’m having mush brain at the moment.

    Ali
    It’s fine I’ve had that so much today.

    Hannah Hoskins
    It’s like the amount of times that I have done these recordings and my brains just gone doopie doopie doo and like, wandered off. And I’m like left there going I did have something intelligent to say I swear. Like, some of them I’m just gonna leave in just so that other people don’t feel so weird. Because it is that moment. That’s what I really love about working with other people who understand it as well. It’s like, it’s like simple things like being able to be like, I’m not turning the camera on because I’m not dressed.

    Ali
    Exactly I was like oh good phew!

    Hannah Hoskins
    Exactly. I find like the worst one I ever had was where I forgot numbers. Um so I was on the phone in work of all places. And it was an open plan office so you could hear everything and I was on the phone and I had to go, you know, the round one. This woman on the other end was just like, Oh, my God what have I got myself into and my whole office just cracked up. It was just like I’m really sorry, I forgot what numbers are. I just I would have loved to have heard her retell the story to the rest of her office. Like I had this woman, she doesn’t even know what numbers are. Like it’s not my fault!

    Ali
    I’m just now here thinking about what happens if I get into that situation? And I’m like, well, eight looks like a snowman.

    Hannah Hoskins
    Yeah.

    Ali
    I’ve got the brown one in the snowman. I’ve got two down. We’re fine.

    Hannah Hoskins
    Yeah, exactly. That’s kind of all you need.

    Ali
    Yeah, zero and eight

    Hannah Hoskins
    The one that looks like a corner would be seven.

    Ali
    That’s too complicated. For me. I was like, what?

    Hannah Hoskins
    yeah, at least it was only zero that I forgot. It’s kind of an easy one. To be like, hey, so here’s this um, what would be the one thing that you have learned now that you wish that you could tell your newly diagnosed self?

    Ali
    That there’s so many people going through the same thing? I don’t know if it’s different now, but obviously, eight years ago when I was 17 I went on the internet. And all I found on the internet was like middle aged people who’d had it for 30 years. And I was like, oh my gosh. And you know, I couldn’t relate to anything. And I thought I must be the only 17 year old going through this. And I’m not. And even now, you know, this age. There’s so many people going through it so many ages, just so many of us, you know,

    Hannah Hoskins
    yeah, I mean, for me, even I got diagnosed, what, nearly four years ago now. And even for me there was when I searched a lot of it. Again, it’s like, I heard this conversation with other people about the fact that there was just the Facebook groups.

    Ali
    Yeah.

    Hannah Hoskins
    and the Facebook groups. Some of them are really lovely, and I’m not damning all of them with one brush. But a lot of them were very focused on how bad it is.

    Ali
    Yeah

    Hannah Hoskins
    and how difficult it is and how it never ends. And we all know that we all know that you’re not going to magically wake up better the next day. Do you know what I mean?

    Ali
    Yeah

    Hannah Hoskins
    There’s a kind of like a point where it’s not healthy to know that like, like to actually confront that. Sometimes it’s easier not to confront that because it makes getting through each day that bit easier. Because you’re not like, Oh, this is lifelong. You’re just getting through, what you can deal with in that moment and I think I agree with you there is that that whole thing of you need to know that you’re not alone?

    Ali
    Yeah, I think especially because I was housebound for six months, and it was just so isolating. And I was just there like, well, this is, you know, this is my life. I’m isolated. I’m on my own. I’m not gonna get out and meet people anymore. And actually, that’s not true. There’s so much you can do.

    Hannah Hoskins
    Yeah, I think the Internet has completely changed that as well. Did you find because you were younger people weren’t as understanding like your friends weren’t as understanding.

    Ali
    Yeah, definitely. I always remember this is really sad actually. It was at a time there was there was like this website where you could ask people questions anonymously.

    Hannah Hoskins
    Yes.

    Ali
    And I remember I just been diagnosed, and I’d only told two of my friends. And I got a message from someone talking about specifically things that I knew I’d only told these two people and saying basically being like, No, you’ve just made up because your attention seeking but it was very hard. I think I think at that age, you are so focused on yourself, you know, exploring all these new things and things like you know, being able to go out and, like socialize more and started to get into like, drinking and parties and all of that. And it was just like, people didn’t kind of just have the maturity to think

    Hannah Hoskins
    and kind of understand or put themselves in your shoes, I think is really interesting because I think when people get diagnosed at different ages, like for me, when I got diagnosed, I was obviously working and bless my friends. They actually hid it from my bosses until I was ready to tell them

    Ali
    yeah,

    Hannah Hoskins
    Like if a boss like if someone came over and was like, oh, Hannah, can you take this downstairs? like one of my friends would just take it downstairs. Instead,

    Ali
    oh, that’s really sweet.

    Hannah Hoskins
    I suppose the reason I was asking you is because I think a lot of people want to know when they’re younger and they’ve been diagnosed that people do get a bit better at dealing with it, and that you can choose who that who you keep in your life.

    Ali
    yeah, definitely.

    Hannah Hoskins
    Obviously, other than that one person, did you? How did your friends react to all of it?

    Ali
    I’ll be honest, I mean, I don’t know if it would be different now. Because I feel there is now a lot more awareness. But I lost the vast majority. And it was just simply that thing of I couldn’t keep up. You know, I couldn’t go out and do the things they wanted to do. And eventually, they kind of just I don’t think it was an intentional thing. I think it was just like, you’re not there. So they kind of forget that you’re still a person and still, you know, in the area.

    Hannah Hoskins
    Yeah, I think they like I think what I noticed certainly is I get less invitations to go and do things now.

    Ali
    Yeah. It’s sometimes nice just to have the offer just like I know you probably aren’t feeling up to it, or I know it might be a bit much, but we’re doing this if you’d like to come.

    Hannah Hoskins
    Yeah,Yeah, I do.

    That would have always been nice.

    Yeah. It’s just nice to know that someone’s thinking of you. But I think it’s a really hard one. I think it’s like, we talked a lot about dealing with the illness and all of that. And so we’re now even starting to talk about like, how you deal with the mental health side of it. Yeah, it’s really great that we’re talking about that as well. But I think we don’t talk about things like friendships and stuff, how they’re important. One of the best things for me is when I was diagnosed, my friend also has EDS, and she was diagnosed way before me and like, she was like my little Yoda, like have a walking stick. Do this, argue for this from your doctors do not, make your advocate for yourself when and like the difference that made for me, I think was that I became very quickly quite confident with being someone who is chronically ill and having to fight for myself. So like the Instagram community that I see growing now, I think really offers that opportunity to talk to like minded people to like be able to share the downs as much as the ups.

    Ali
    Yeah, I definitely think it’s it’s a lot more proactive.

    Hannah Hoskins
    I definitely agree with that. And I think I think it makes a difference. And I suppose what I’m saying is for anyone who is listening and going through it and really needs a friend, there are friends out there like I think, I mean, you were saying you’ve made some really close friends in terms of working with other

    Ali
    Yeah

    Hannah Hoskins
    Disability people on there like, and just being able to have someone to message and be like, I’m having a really, really shit day today.

    Ali
    Yeah.

    Hannah Hoskins
    And they’re like, I get it. They don’t try and fix you. They don’t try and tell you like, oh, I hope you get better soon. It’s just, I got it.

    Ali
    I got it. Here’s a hug. Here’s a picture of a puppy.

    Hannah Hoskins
    Exactly. And you’re like Yes!

    Ali
    yeah, cuz I don’t know if you’ve done anything similar, but I remember I went to like a, like a group. I don’t know support session or something like that, ooh it was not enjoyable.

    Hannah Hoskins
    I am about to. So, I don’t know. It’s slightly different here in Wales because they do sort of slightly different stuff. But I’ve just been invited to go to a patient’s experts meeting, which I think is a fancy way of saying one of those groups. But yeah, how was your experience with one of those? Just out of pure interest?

    Ali
    I, I mean, it was when I was quite newly diagnosed. And I remember, it was just the most disheartening, depressing thing I’ve ever been to. I think it was like a real life version of some of those Facebook groups.

    Hannah Hoskins
    Yeah.

    Ali
    yeah. And it was not good. So take them with a pinch of salt. I think remember, there’s tons of motivated, fun people still living life to the full, you know,

    Hannah Hoskins
    yeah.

    Ali
    as much as possible. And I think Instagrams where you’re more likely to connect with them.

    Hannah Hoskins
    Yeah, I completely agree with that. I think I think it’s like find your tribe, isn’t it?

    Ali
    Yeah.

    Hannah Hoskins
    Like, find people that make you feel okay about being disabled. Do you know what I mean? like other people that make you go do you know what it isn’t the most interesting thing about me. But I have a support system. And I can talk to people and say

    Ali
    yeah

    Hannah Hoskins
    how it is and talk about ableism and weird people chasing you down when you first use your mobility aids.

    Ali
    Yeah and to kind of compare them and laugh about them is is quite fun.

    Hannah Hoskins
    Yeah, it’s just easier to find them comical, because otherwise, it is really depressing. But I think that’s a lot within this illness. It is always that thing of you have to find the funny side sometimes. And that’s not to say that you can’t have downtimes, but there’s going to be a lot of not great times.

    Ali
    Yeah

    Hannah Hoskins
    And so to develop a sarcastic sense of humor to deal with it is probably the most life saving thing you could do!

    Ali
    Yeah I completely agree.

    Hannah Hoskins
    So I was gonna ask you a couple of questions as well going forward. It into kind of the exercise thing. And I’m really, really interested because I know that when you got worse that you had been training to be a PT, which I think it’s really interesting to get that kind of point of view from someone who actually is ill themselves.

    and kind of had to do it. I think the first one I want to ask you is how do you manage exercise and your illness like for me, it just seems like a mind blowing like I have small amounts of physio, but like for me, I’d love to get to the stage where you are, but I just don’t even know where I start with that without killing myself.

    Ali
    Yeah

    Yeah, it took a very long time. And I think this is one of the things that it’s hard because it’s like, I don’t want to depress people, but you have to be realistic. It took me like five years, probably, yeah, to be able to get to that place. And I think over those years, there was a lot of trial and error in working out what works for me and my body. I think you have to put all of that groundwork in like, I know how much I need to sleep, I know how regularly I need to eat, I know what I need to eat, you know, all of those things I know, you know what medications work or don’t work. And you have to kind of try all those other things first and get a really good foundation before you’re able to start implementing exercise into your routine.

    Hannah Hoskins
    I think that’s such a refreshing way to look at it. Because like, I find like a lot of doctors when you when you go there like Oh, just do some exercise.

    Ali
    Oh yeah

    Hannah Hoskins
    I think I think the thing is, is what no one ever realizes is that you can really damage yourself if you don’t do it.

    Ali
    Yeah

    Hannah Hoskins
    in the right way. And it’s really refreshing to hear you say that it takes time to build up to even being able to do the exercises.

    Ali
    Yeah, yeah, definitely. I think that’s what I think is one of the massive things that needs to change the mean especially for like, chronic fatigue the two treatments prescribed by the NHS are antidepressants and graduated exercise therapy. And it’s like, What? That’s not helpful, because you’re just gonna make yourself worse. And you need to have that foundation first of having all the other stuff as good as possible. And then you can start trying to just do little bits. And I think, like, I remember, last year, I was given a health coach through my doctors, it was beneficial in terms of she had some great ideas, but she just didn’t get the level of fatigue and how that can fluctuate. And, you know, I’d be saying, well, I, I can’t, I can’t gym this week or whatever, she will just go swimming instead. And it was like, No, no, when I say that, I mean, I can’t get out of bed. So if you’re gonna start looking into the gym and stuff like that having a doctor or a PT who has an understanding, like a real understanding of your illness is so important.

    Hannah Hoskins
    How would you like if someone was starting like And you’re trying to talk to a doctor about how your body is, is that were there tricks that you use to try and really get people to understand it? Or is it just a case of constantly just being like, No, I can’t do that, or no, that’s made me hurt, or

    Ali
    Yeah, I think doctors love to see that you’re really evaluating things. So if you’re going to a doctors and you find they’re not really listening to what you’re saying, keep a journal, but go through just a little bit every day and write down like your fatigue and what you’ve done or your pain levels or you know your symptoms, because they love stuff like that. That’s just one thing that I’ve discovered is doctors absolutely go gaga over and it shows you’re taking it seriously. And it’s not just like, Oh, no, I’m tired today. So I’m gonna say I’m tired. You’ve got that evidence there. Go, look, this is how that affected me.

    Hannah Hoskins
    Yeah.

    Ali
    And I think also, I’m, I’m really bad because I laugh when I’m uncomfortable. And I think that’s quite a common thing. And I mean, sometimes We will kind of laugh it off and laugh through the pain. And I think sometimes we need to let ourselves be a bit more vulnerable and really express how much something is affecting us.

    Hannah Hoskins
    I totally agree with you on that, like I am. I just started with a physiotherapist myself. And I actually did his exercise and then went in the next week like I was broken from it like it. Yeah. And it was very, very, like very he he adapted it as much as he possibly could. I walked in and I literally nearly fell over and got stuck on the bed and he was like, you’re pretty bad aren’t you and I was like, Yes. Your entire thing just broke me. He was like, I’m gonna try and work out a way. So he’s basically got it down even more and just tried to make it even and he’s like, Look, try it one day, see what happens. See if you end up having issues from it. And then if not then try it a bit more.

    Ali
    Yeah

    Hannah Hoskins
    but I think you’re right in that that thing of writing it down and making sure that you are really quite vocal.

    Ali
    It makes it much easier as well. Like, if you’re not confident in speaking through how you feel, you can just kind of give them this bit of paper and go, this is how I feel read it. And if you get back to me,

    Hannah Hoskins
    yeah, let me know what your thoughts are.

    Ali
    and it helps with the brain fog as well, because I will always forget something that’s happened or a symptom that I felt

    Hannah Hoskins
    Oh, yeah, I always go in with like a list. So like in terms of, of starting, I suppose. What I would really like to ask is, how did it start for you? Like, how did you start putting it back in like, if we go all the way back to those, those five years? What What did that look like when you were putting it back in?

    Ali
    Oh, gosh, it’s, it’s so hard because I’m not even really sure some of it. I think a lot of it started that I I got a job. So I got a part time job. I was at university. It was 10 hours a week. So it’s one four hour shift and one six hour shift. And I remember a six hour shift was a little bit better because I got a break, but the four hour shift, the first few times I did that, I was in absolute agony afterwards, I would have to rest that, you know, the whole of the next two days, and it was like this big thing, but it was almost manageable for a little while.

    Hannah Hoskins
    Yeah.

    Ali
    And as I progressed, you know, then I could stand for four hours. And it was like okay this is, you know, a vast improvement. And I think if you’ve got the opportunity to push yourself that little bit, but allow the rest afterward, that’s where you can make a lot of progress.

    Hannah Hoskins
    So it’s kind of like finding that, is that that sweet spot? Isn’t it is just doing enough to be a little bit more than what you have done before, but not so much that it sends you into a spiral and you spend the next week in bed?

    Ali
    Yeah. If you need to rest for a day, I’d say that’s pretty good. And then yeah, following on from that, I sort of rebuilt things by doing that. And then I got a different job and I was working longer hours and then I left my job because I was in and out of hospital having random stomach pains. And but so I left my job. And then I thought, well, I know that I’ve had a bit more energy. So what can I put that energy towards? And that’s when I started looking to the gym and seeing what I could do there and sort of almost replacing it. And I think it is very hard when you are working as well. I think there is only so much that you can do at once. Whether you’re working part time, full time. That is a lot. And I think a lot of us will underestimate the toll that take

    Hannah Hoskins
    Oh, yeah, there’s always that thing between what you want to do and what you can do.

    Ali
    Yeah.

    Hannah Hoskins
    And it’s good to push a little bit, but sometimes

    Ali
    No, but I think that’s the thing. Sometimes we kind of push ourselves too much. And we don’t realize that because I think we see what people without health difficulties are doing. And we’re like, well, I must be able to do all of that. And I think we just sometimes need to accept that no, we can’t.

    Hannah Hoskins
    Yeah, I think that’s the hardest thing, isn’t it? It’s coming to terms with that. Like I still do that. I’m like, I can definitely do this like but it is that thing of like you do so Sometimes overestimate

    Ali
    Yeah

    Hannah Hoskins
    What you can do.

    Ali
    That’s such like a spoonie thing you’re like, I can definitely do all of that on my own. And I think learning, learning what those things are that you probably shouldn’t do. That also really helps.

    Hannah Hoskins
    Yes. But also it’s okay when you get yourself stuck in the middle of something and you’re like, I have made bad bad choices.

    Ali
    Oh we all do it.

    Hannah Hoskins
    Oh, everyone does it like all the time, I think. And also that thing where you have a bit more energy like you were you were saying where you’re able to put something in again, I think sometimes you get overly excited by the, the fact that you’ve done it and then you’re like, I must do it every day and do all of this, but you do it with my physio.

    Ali
    I think sometimes when we feel something feels Okay, you’re then like, well, I can do it double as hard or double as much and you’re like, No, no, no, just let it be okay for a while and get like, kind of get used to that new normal. And then you can once you’re used to it and you’re you know your body can do that without too much of a repercussion. That’s when you can increase it.

    Hannah Hoskins
    Yeah. So talking about when you first started adding it back in, I was gonna ask you how those first few workouts felt.

    Ali
    It was tough. I think there was that strange sort of euphoria of oh my gosh, look what I’m doing. And I think that is often like we said, why we get into situations where we do do too much, because oh my gosh, it felt amazing. Yeah, I definitely struggled the first few days after I remember there was one workout I did when I was at uni, and I went to a class and no joke I had to be wheeled around on a desk chair for the next three days, including doing my cooking on a desk chair because I couldn’t bend to get into the fridge. But yeah, I think it was amazing. But it was also very tiring and needed that extra rest that I’d kind of I did allow for but I didn’t I don’t think I allowed for as much as I needed.

    Hannah Hoskins
    Yeah, I suppose what It’s good to tell other people is that it’s okay if you mess it up the first time. Like, you know, like you doing too much in your in your class and me having to go to my physio and be like I’m broken help me.

    Ali
    Yeah.

    Hannah Hoskins
    Out of interest as well. And there’s a lot of me purely asking, just out of my own like, how do you manage all the work? Like, I know that you’ve spoken quite openly on your Insta before about the fact that you know, you, you sacrifice a lot to do your workouts.

    Ali
    Yes.

    Hannah Hoskins
    What, what things would you want to tell people so that they understand kind of like, what sacrifices those are,

    Ali
    I’ll be completely honest, nine times out of ten that I’m leaving the house, it’s to go to the gym like I probably don’t have the biggest social life. You know, if you took out Instagram on my phone, I probably don’t see people other than my mom and my boyfriend that much. It’s quite nice for me because the gym is is a very social thing. I’ve got a lot of friends that go there. So I can kind of combine that in a safe, you know, safe way almost like, I can go to the gym and I don’t have to make plans to see people. So then I don’t have to cancel those plans. So that’s nice.

    Hannah Hoskins
    Yeah.

    Ali
    But yeah, I, I think there’s kind of a misconception about it. And I’ll be honest, like, if I’m going to the gym, I probably won’t do a lot else that day. That’s being brutally honest, you know? Or if I do, I’ll have to really rest the next day.

    Hannah Hoskins
    Yeah, I can understand it must be hard trying to balance all those bits like for me, like when I do the work on the business

    Ali
    Yeah

    Yeah.

    Hannah Hoskins
    I will do bits of it. But then I can’t really do anything else. And I think I suppose what I really wanted to get out in this podcast is that for different people, different things work like you putting in your happiness and like what what makes you happy and it’s so hard because you have so little energy, that sometimes a lot of your life becomes about not the things that make you happy.

    But we will make the sacrifices for the things that the most important IE I sacrifice for being able to do the business I will sometimes push myself a bit too hard or I won’t or or I sacrifice a social life. And that’s, I think what you’re saying as well.

    Ali
    Yeah

    Hannah Hoskins
    you don’t have that social life, like because your happy comes from doing the gym and being

    Ali
    Yeah

    Hannah Hoskins
    doing that kind of exercise and stuff. And I think it’s really important for people to know in this community, that it’s okay to prioritize certain things over others.

    Ali
    Yeah, I think we get a lot of guilt, like I feel it now. You know, there’s times and it’s like, it sounds awful. But sometimes I will prioritize, I will choose, you know, someone can offer me to do something and I’m like, I could do that. But I wouldn’t be able to go to the gym. And it’s just like, I know how much that helps me mentally and physically. You know, you start weighing up your friendships and going how much do I like you? Can we just text instead? And I would probably get the same amount of enjoyment and still, you know, go to the gym. That sounds awful on my friends. I’m so sorry.

    Hannah Hoskins
    But it isn’t it isn’t. It’s, it’s hard, I do the same thing. And I think it’s something that we do need to speak about em, because I think it’s really important for people to understand, like, I will sometimes not see my family or see, you know, my other half’s family, because I choose to do an hour or two on the business. Now that sounds like I’m being selfish in that sense. But when you’re someone who has so little energy, you do need to prioritize sometimes things that make you the happiest

    Ali
    Yeah

    Hannah Hoskins
    because otherwise you’re not going to get that in your life.

    Ali
    Yes, definitely. We just need I think it’s a conversation that just needs to be had more like it’s okay to not do everything. And I think there’s that comparison thing again with people who don’t have health problems of you know, they might be able to work a full time job. And, like, I look at my boyfriend, and you know, he works full time he plays football on a Tuesday on a Saturday. He is in a band, and he will often gig on a Friday or Saturday night, and he’ll see his friends and does all this stuff. And I couldn’t do probably any one of those things.

    Hannah Hoskins
    Yeah.

    Ali
    And that’s fine. I can do my things in my way. It doesn’t have to be the same. You know, I don’t need to compete with that, because I can’t

    Hannah Hoskins
    Yeah, I think it’s about learning not to fall into the comparison to people who are not you.

    Ali
    Yes.

    Hannah Hoskins
    Because yes, you could compare yourself to people who are ill, but even looking at between the two of us we have vastly different priorities where we put things on that completely. Okay. Do you know I mean, like when we’re this ill and we’re talking about chronic illness, like our happiness stops being something we talk about!

    Ali
    Yeah, yeah, definitely. I mean, I remember when I must have just been diagnosed, I’d been ill like six months, and I went to my doctor and I went, I think I’m depressed and he went well, yeah, you’re constantly in pain and constantly tired. Of course you’re depressed and I was like all right, okay. But I needed that answer. Because if you’re just focusing on those things of your pain and fatigue and all your symptoms, and you’re not putting that happiness in, yeah, you’re gonna be depressed.

    Hannah Hoskins
    Yes.

    Ali
    Simple as that really, isn’t it?

    Hannah Hoskins
    Yeah. And it sounds silly to have to say it, but it is something you have to say. Because I think when you’re newly diagnosed, everything becomes about the illness. And I think

    Ali
    Yeah

    Hannah Hoskins
    which I feel like my life stopped being all about the illness as the point where I was like, Okay, I’m gonna actually prioritize making myself happy.

    Ali
    Yeah.

    Hannah Hoskins
    And then it isn’t all about everything I can’t do because like, it was always like, Oh, I can’t do the cleaning in the house because I worked today and I can’t, you know, and I can’t do this. And I can’t cook dinner for my other half. Because…

    Ali
    Oh yeah but that’s fine, you know?

    Hannah Hoskins
    Yeah, and it is and it’s prioritizing it and like, I now sometimes have the energy to do those things. Because I am not killing myself trying to work 18 hours a day.

    Ali
    Yeah. Yeah, that’s the thing and accepting help from other people, you know?

    Hannah Hoskins
    Yeah, I think it really changes at the point where you start being able to ask for that help, isn’t it and accepting that people aren’t going to be angry at you for asking for it.

    Ali
    And if they are, they’re not the right people.

    Hannah Hoskins
    Exactly. What should someone be looking for in a PT? Like, if you were looking for a personal trainer now? What, what would you look for in terms of working with your illness?

    Ali
    Oh

    Hannah Hoskins
    yeah.

    Ali
    From a qualification standpoint, because obviously, because I trained to be a PT, yeah, obviously, any PT will be level three qualified. If they’re level four, it means they have a specialism. And it’s quite handy to look into what that specialism is if they have one because there’s lots of really good things, which will be very beneficial. So definitely look into that. See what they specialize in and see if they have any experience in dealing with other you know, chronically ill patients or things like that that’s really important. Just get their background history don’t just like jump into the first one that you see, I think they look fine. I think you have to have a very open and honest discussion with them and a really trusting relationship, I think and also you have to go in there ready to be as open as possible. You know, you there’s no point, you know, pushing yourself through those workouts going, Oh, gosh, I’m really in pain. This is gonna really hurt me later. There’s no point. They’re only going to work as well as you work with them.

    Hannah Hoskins
    That’s a good point. And do you think that you should shop around like if you don’t find you click with someone it’s perfectly okay to be like do you know what

    Ali
    Yeah, definitely. And I think a lot of pts will offer like taster sessions and stuff like that. And any good PT before they start should sit down and go through your medical history and your goals and stuff like that. So you should have a chance then to ask them a lot of questions. You know, and say to them, have you had any experience dealing with this before. I think there’s a lot of great pts out there, so you’re perfectly entitled to sort of, you know, try out a few and see who works best for you who you gel with. Because it’s got to be fun as well.

    Hannah Hoskins
    Yeah, I think the really difficult thing is, it is I was talking about before is that deconditioning is a is a hot word, shall we say, within our community. And the thing is, is that a lot of us are like, Oh, you know, you don’t want to talk about deconditioning. And a lot when we talk about it with mobility aids. I think there is a lot of fear around deconditioning. The other thing that we don’t talk enough about is that we are naturally going to decondition anyway because we’re not doing as much movement as other people. And so it’s really important like no, you don’t have to gym all the time or push yourself to a massive extent. But moving your body in a way that makes you happy.

    Ali
    Oh yeah. So beneficial.

    Hannah Hoskins
    Even if someone say couldn’t get to the gym, what is a good way even just doing some stretches on YouTube is probably a good way to just keep your body from.

    Ali
    Yeah, YouTube has got so many at home videos that you can find, with no weights it’s and stuff like that, what I would say, my top recommendations, especially if you’ve got like ME or fibro, avoid impact, like, impact is so huge on all of your joints that it’s only going to hurt more, you know, if you can choose to do workouts without impact that’s going to massively help you. So yeah, I think you’ve got to know what you’re kind of strengths and weaknesses are find little ways to get moving. I don’t know if you’ve seen that new campaign. There’s a new campaign, they’ve just launched public health, which is all about people living with long term health conditions and getting them back into exercise.

    Hannah Hoskins
    No I haven’t seen that!

    Ali
    So yeah, they’ve got about 20 different charities involved to talk about the benefits of it and how I think it’s, it’s one of those things if you have a long term health condition, you are much more More likely to be inactive, which is obvious but also at the same time that has got some damaging aspects to it you know? And like you said the endorphins mentally it really makes a big difference I think just having a little bit of movement and

    Hannah Hoskins
    I completely agree with you the other day like

    I yes, I did have a little bit of melt, so I bought a mobility scooter and I went out to try and actually go out with it. Yeah, and I had a little bit of a fear moment and decided not to but what I did do is I sat on my mobility scooter in the sunshine soaking up the last little bit of that. And the difference that made to my day, like like you I don’t tend to go out the house an awful lot, even a little bit of movement, even that fresh air even getting out of where you are. Yes, it’s really, really difficult sometimes, and I’m sure like when you are bed bound that you really didn’t feel like you’d ever get to that place.

    Ali
    Yeah, definitely. I think that’s the thing as well. We don’t see a lot of cases I don’t feel personally where people are doing Kind of what they want to achieve with their chronic illness. And, you know, I, when I was at home and stuck there, I was just like, Oh gosh, I’m never gonna be able to get out. I’m never gonna be able to do all these things. And now, I look at my life. And yeah, there’s things I’d like to do more of. But actually, I feel like I’ve got my pacing, and kind of I’ve got an understanding of my body so that I am able to put in the things that I want to do.

    Hannah Hoskins
    Yeah, I think that’s really important. Again, it goes back to that thing that we were talking about, about finding your happy and kind of prioritizing that because we have so little energy anyway, I think it’s really important to hear stories like yours in the sense that it can with slow really slow, yeah, something that happens overnight. Like I keep wanting to say the five years thing because I’m like, I really think everyone needs to get on board with the fact that it took you five years to get from bed bound to being able to gym sometimes do you know I mean, it’s not Yeah, it’s not even like you can do it every day is when your body is able to deal with it. And I think it’s really important to know that that is possible, but it takes time.

    Ali
    Yeah. And you still have to make those sacrifices like even now, you know, if I want to go to an event in London, if I want to do things, I have to plan it. I can’t just spare the moment get up and do stuff. But if that in like allows you to enjoy life, then that’s what you should be doing.

    Hannah Hoskins
    Exactly. I completely agree with that. I think it’s that thing isn’t it of like, try and find your happy find the things that make you happy make you happy, prioritize them, and then keep trying to build on that and like, work with doctors don’t you know if they’re not providing you with the health care you need then keep asking questions. And yeah, you are the only person who knows your body so you need to be doing that you need to be tracking it. You need to you know, and yes, sometimes you can’t do that. And certainly if you’re so ill that you can’t even track it then don’t because yeah, your health is the most important thing but know that you know your body well enough.

    Ali
    Mm hmm. Yeah, definitely. I feel like that’s such a big one. I mean, there’s so many times when it’s like, I’ve gone to the doctors and they’ll try and be like, Oh, no, you’re not ill, you’ve just got this wrong with you. And I’m like, No, ignore my chronic illness. I know what that feels like.

    Hannah Hoskins
    Yeah, yeah, I’m having that argument currently I’m like, I don’t know what’s wrong, but something is different and it’s wrong. It’s one of those really, it’s a tough thing. I think it’s uh, but I do think a lot of your story is about how you learnt to look after, and really become an expert in your own body.

    Ali
    Yeah.

    Hannah Hoskins
    And I think that is really what’s allowed you to do more and build on it, which I think is really is really important for people to hear, I think.

    Ali
    Yeah, and just accepting myself as well. Accepting if this is what I’ve been dealt, fine, but I’m gonna make the best of it.

    Hannah Hoskins
    Yeah, yeah, exactly. And I think you don’t always hear that a lot. And certainly you do on Instagram, but you don’t necessarily on Facebook groups or on your doctor and it It can get hard. And I think that leads quite nicely into the mental health stuff. I mean, how did you? How did you deal with things like being bed bound? Because you’ve been quite open about your mental health? How did you deal with that? And you talk a lot about how it’s connected to your physical health.

    Ali
    Yeah, I think when I was like housebound and bed bound, I really struggled that it was that initial thing I was going from, you know, quite an active teenager to being stuck at home. And there was isolation, there was confusion there was comparison, I very quickly did become depressed. And it’s one of those things it wasn’t really spoken about at the time. You know, even now, that’s something I’ve battled on and off and it is hard and you are allowed to grieve for your health. You’re allowed to feel sad about it. I think that’s one of the biggest things is that I didn’t realize you were allowed to do that. It feels like you’re not allowed to both be sad about your health, but also be positive about And I think you need to do both.

    Hannah Hoskins
    Mmm

    Ali
    to be able to get through.

    Hannah Hoskins
    Yeah, I completely agree with that. I think it’s that thing, isn’t it? The society at the moment wants to put everyone in a little box that’s nice and neat.

    Ali
    Yeah.

    Hannah Hoskins
    And I think when you get a lot in the chronic illness, and I think it’s something that once it spills out of just our community, it’s going to be really important, but the idea that you can feel more than one thing at once.

    Ali
    Yeah, definitely

    Hannah Hoskins
    My, my illness is both the worst thing that has ever happened to me and also an all right thing that happened to me. Do you know what I mean? Like it has made me in some aspects a better person. And I’m not saying that your illness has to make you better what I’m saying is it can be more than one thing it can be the both the worst thing and the best thing that happened to you.

    Ali
    Yeah, definitely like mines definitely made me more determined and stuff like that. So

    Hannah Hoskins
    yeah, and I think mines may be more compassionate in the sense that I now try and put myself in other people’s shoes because I try and because I know what it’s like for people to not understand where I’m coming from.

    Ali
    Yeah, definitely.

    Hannah Hoskins
    I think also, especially with fibro sufferers and I don’t know if you find it but not talking about the pain like the pain is basically like being tortured constantly. Like, it’s the only way I can think to describe it to people. I’m like, imagine someone waterboarding you constantly

    Ali
    Yeah

    Hannah Hoskins
    and then asking you to do the times tables. It’s not gonna happen. But that that can be a very dark and not very nice place to be. How did you deal with that kind of grieving process and that

    Ali
    I’ll be honest, it’s 17 and then turning into 18 and going to uni, I did not deal with it the way that I probably should have in terms of for my health, and, you know, I was quite not naive, but I was a teenager and, you know, I got to university and it was like, Okay, well, I’ve only got a certain amount of energy. So I’m not going to go to my lectures, but instead I’m going to go out drinking. I’ll be, I’ll be brutally honest. And that’s what I did. And that’s what I prioritized because I thought that was my happiness at the time. And we don’t have to respond perfectly to situations. I don’t think that helped my mental health. And obviously, alcohol is a depressant. So yeah, that definitely didn’t help. And you know, my sleeping pattern was massively disturbed and stuff like that. But I was just doing whatever I felt would get me through and to the point that I was ready to deal with it. And I think that’s also what had the biggest change of when I started to be more able to do things is that I accepted it. And I accepted that it’s okay, it’s okay to feel pain, it’s okay to feel tired. It’s okay to not be

    Hannah Hoskins
    able to do everything. Anyone presented with that kind of stuff would have a bit of a breakdown and not be able to deal with it. So it’s perfectly okay if you’re ignoring it currently.

    Ali
    That is the thing that’s such a huge thing. You get to that point, and you’re like, I can’t do this forever. Not only forever, I don’t know how long I can do this for and you get to a point and you’re like I’m going to have to deal with it now. And then you kind of just do. And you know, it’s very difficult and I’m not saying there aren’t ups and downs, but I still massively have down days about it. I have a lot of anxiety, I think, almost because I’m in a somewhat good place. I then get very anxious anytime that I feel I’m crashing more than normal, because I’m like, Oh my gosh, I’m gonna be housebound again, I’m going to lose all of this. And I think that’s all okay. Like, we completely flawed human beings, like everyone is, and that’s fine. And we’ve got so much going on in our minds. Like, we can’t be expected to just deal with everything at once and be okay with it all like,

    Hannah Hoskins
    Yeah, and it’s also okay to not get it right. Like, like, almost in chronic illness, you have to do the wrong thing to be able to be like, okay, now this is the right thing.

    Ali
    But I think what we’re trying to do here by having these conversations, it’s by kind of reducing the amount of time people spend doing the wrong stuff.

    Hannah Hoskins
    I think the thing is, is we get caught up so much in being the perfect patient. And I think I think that’s really why I want to talk to you about your fitness thing because I think it’s so easy to get into that perfect patient mentality when people are telling you to do exercise and things like that. And I think what’s really refreshing about how you talk about it is the fact that you’re like the go don’t do it on my bad days. All you ever hear is Oh, consistency is key. And actually, sometimes brass it’s it’s actually just sometimes doing it and that’s fine. You know, I guess better than lying in bed and doing nothing at all.

    Ali
    Yeah, like I think that’s the thing is, you’ve just got to work on your good days. I think that’s what we kind of need to learn on your good days, do a little bit more than you’d usually do on your not so good days do a bit less than you’d usually do. And it will kind of balance out somewhere. I think just sharing those things as well. We’ve got to do it and I think talking about your mental health and being open with that really does help

    Hannah Hoskins
    Like with communicating, I think it is about communicating your needs and also like how you’re feeling that day because I think we all get into that. It’s easy to talk about what we need in terms of being like, Oh, can you get me a drink? Can you do that but not necessarily being like, I’m having a bad day. It’s affecting my anxiety because I also find like, the more pain I’m in, the more anxious I become like I become a little bit I noticed it like I become a bit needy in the sense that I need to know that things are okay. So yeah, like, if I have something like a tiff with my other half, I will feel really bad for that. And like, yeah, it will be blown out of proportion because the amount of pain my brain is in just makes you that little bit more anxious. Do you find that that?

    Ali
    Yes. Oh my gosh, I’m so glad we’re talking about this because I think this is something that isn’t spoken about how much it just, I think it’s a vicious circle as well. You’ll be in pain so then you get a little bit anxious or a little bit snappy irritable, we will get like that, you know, cuz I’m not being funny, we should be irritable, we’re in pain.

    Hannah Hoskins
    Yeah.

    Ali
    And then you know something will happen and then it spirals and then I get to a point I don’t know if you’re the same. If I’m in a situation that’s getting very emotional either and I’m like, I start freaking out because I’m, I’m going to be in so much pain from this, I’m going to be even more tired. And then I look at the clock and it’s like, it’s midnight, I need to sleep. And I just get so worked up and stressed out. And I think it’s very hard because we almost have to ask, especially our other halves for them to put their emotions second sometimes, and that’s not always fair to do. But I do think sometimes we, that is what we need, we need someone to just take control a situation go, this needs to stop, it’s done. It’s fine. And just kind of focus on rebuilding our health again, before you know dealing with the actual situation that’s going on.

    Hannah Hoskins
    Yeah, I always liken it to like being a hurt animal because you see animals lash out like if you’re trying to catch a stray cat that’s got a broken leg if you come at it it’s gonna attack you because it thinks that it’s in danger and we are in fight or flight an awful lot of the time and then you’re adding like mass loads of pain I do end up like you say like I’m I sometimes just spiral like and the amount of anger I kept it I said to my other half the other day that the how I know that I’m in pain is the more I plot to kill him. The more he like absolutely annoys me at every like even his breathing annoys me. I’m like, I must be in a load of pain. like, it’s a really good litmus test,

    Ali
    oh, hundred percent. And I think this is really valuable because I think those parts of relationships and dealing with relationships when you aren’t well. They kind of get overlooked in the scheme of everything else. I think we’re focused on you know, managing everything else that we forget about how to manage our relationships sometimes. And I think It’s quite hard when you feel dependent on another person because I personally I don’t know you might be the same as well. I take everything very much to heart when I’m in pain or tired my partner can say something tiny and I will take it as its massive criticism and I’m like, Oh my gosh, I must change my name and run away to France. And you know, I mean, I cannot live like this. Yeah, all of this guilt. And I think it’s just that we have got that high level of emotion. We’re right on the edge all the time because we’re tired and in pain, and we kind of just need to make some allowances and also I think appreciate our partners for what they put up with sometimes

    Hannah Hoskins
    It’s when my other half started like carrying around snacks for me.

    Ali
    Oh, that’s good

    Hannah Hoskins
    because whenever I got like hungry, it would get a hell of a lot worse so he’d basically shove an energy bar in my face

    Ali
    that’s good. See my partner’s diabetic. So we’ve always got snacks so

    Hannah Hoskins
    Ah well then the he is perfect. It’s the way forward. It is. We don’t talk enough about how pain affects everything. And I think I don’t know about you, but I always seem to think a situation is like 100 times worse than it actually is.

    Ali
    Yeah, definitely. I get very stressed about very minor things.

    Hannah Hoskins
    I think also, like, It’s that thing of because I have so little energy, I felt like the thing has to be sorted when I have the energy. Because I’m like, I have the energy now and I’ve already tanked myself. So we might as well tank myself and finish this, then make it another day that I end up being in pain.

    Ali
    Yeah.

    Hannah Hoskins
    No one gives you that kind of toolbox and says, Do you know what your relationship is going to be something like I know that we there was obviously with the community. Ther was the hashtag after the Dr. Phil thing of 100 out of 100. And I think it was really important in it. It shows that you can have caregiving relationships that do work, but I think what I really wish would come out of it as well is the talking more about how you make a relationship work when you are ill.

    Ali
    oh gosh, yeah. 100% because I saw I saw an interesting study, actually, which was saying that patients with chronic fatigue who are in happier and better relationships, find their symptoms decrease, which is

    Hannah Hoskins
    really?

    Ali
    yeah. And when you think about it, it makes sense. Because if you’re happier in your life, you’re more likely to you know, mean, you probably have more support. So then you’ve got more energy and all these things, they do really contribute and it contributes to your mental health and you know, your confidence and your self worth, and then you’ll probably invest more time into helping your health, but that’s something that kind of just gets overlooked. I think I look back at situations now. And I’ve been in some very bad relationships. And, gosh, they were so detrimental for my health.

    Hannah Hoskins
    Yeah.

    Ali
    And we kind of just ignore that as part of it. You know, and we go to the doctors and the doctors will look at you know, what you eat, and you know, how much you sleep and all this stuff, but they don’t look at who you’re surrounding yourself by.

    Hannah Hoskins
    Yes, I think that’s so important. And I think that leads back into the friends thing, doesn’t it? And even the Facebook thing is about the best thing that you can do for your health is surrounding you with stuff that makes you feel supported, even if that isn’t from your own family, like even if that’s not from the people who are currently physically around you trying to make sure that you have outlets to talk to people who do get it who do understand. Yeah, it’s so important. And also know that if your relationship goes through a really hard time when you’re like when I was first diagnosed, my other half had, and he won’t mind me talking about this, but he had a real problem in the sense that he used to say, I hate your illness.

    Ali
    Oh, yeah.

    Hannah Hoskins
    And the problem with that. And it took me a long time to work out why it was a problem because it felt like he was saying he hated me.

    Ali
    Yeah

    Hannah Hoskins
    he was like, I never meant it in that way. And I was like, Yes, but I can’t get rid of my illness. I can’t Yeah, not be a part of me. So it is a part of me and but once we got over and started talking about that, and he started treating my illness as part of me, but also something that wasn’t significant part of me. Yeah, our relationship greatly improved. And I think the other thing that we don’t talk about with caregiving relationships is because you have to be vulnerable because you have to talk about those things far more often. I think people have better relationships.

    Ali
    Yeah, I think so.

    Hannah Hoskins
    Because we have a thing that we ask each other where we say, what do you need from today? Yeah, as in like, so it gives me a chance to be like, I can’t stand up, but my mental health is tanking because you haven’t like the sinks really dirty. So could you clean the sink? Or I’m feeling really anxious today. So can you stay downstairs with me? And just maybe we watch a nice little film or something? You’re you talk. Yeah. And other people don’t do that. Because they don’t have to prioritize certain things within their relationship.

    Ali
    Yeah, yeah, definitely. I I noticed that as well. Especially, see where my partner’s diabetic. We’re both dealing with health things. And it’s actually been quite refreshing for me, because it’s been more of that duality of I take, you know, support from him. But I also give it back and I think we do give a lot and because we’re aware of our Health we do check in with the other person more on theirs.

    Hannah Hoskins
    Yeah.Like there are points where like sometimes like when your partner has a cold and you’re like mmate stop complainging. Like they’re all those points. Sometimes Yeah, it does make us better at identifying like, I’m telling people to stop. Like, it’s really interesting. I can tell my partner, when to slow down more now.

    Ali
    Yeah.

    Hannah Hoskins
    because I have to slow down. It means he slows down. And it means that because I’m also focusing on building a life that makes me happy, ie that I’m I accept I have only a certain amount of energy, therefore, I’m going to do the things that matter to me. Yeah, prioritize them. He is able to do the same as well. And I think he is a lot happier.

    Ali
    Yeah.

    Hannah Hoskins
    Since we’ve been building our life like that.

    Ali
    Yeah, I think there’s a lot of like, you get a lot of awareness. And you kind of evaluate a lot more in your life. You know, it’s like, just the other day, James and I were talking and I said to him, I was like, how does that affect you, you know, talking about his gig and and How does that affect you? I was I’ve noticed your sugars are high or they’re low, you know, they really spike when you gig. Have you thought about that before? And he was like, nobody has ever asked me this. And I’ve never thought about it. And I was like, you’ve been diabetic for like, 31 years.

    Hannah Hoskins
    Yeah.

    Ali
    You think that this conversation would have come up? But I think it doesn’t, until you have that real awareness of health. And kind of I think that comes from losing part of it.

    Hannah Hoskins
    Yeah. I will say to my other half Oh, you know, you need to rest like because you’ve done two things like this week, and you’ve been working Yeah, I know that you’re gonna get tired and crash. So take the next day off, I’ll make a dinner that easy so that you don’t have to cook you know things like that because, you know, even other people’s energy like even though he has far more energy than me and can do a hell of a lot more. I can still see when his energy gets sacked. We have the ability to see those things like you said, yeah. And so for society See, it’s actually really important because we can help with that burnout like we cab help teach people how not to burn out. Because we can be like we know, because we live on the edge of burnout all the time.

    Ali
    100% and I think it’s just, it’s just so nice to remember, I think with the whole caregiver thing is that even though someone is a caregiver, we still give care back. It’s not a complete inbalance, you know, we’re still functioning, you know, as support systems for them, and we give them care, you know, there’s gotta be a reason why they’re with us.

    Hannah Hoskins
    Yes, yeah. And it and it doesn’t have to be physical help like, it can be that mental and, but then I think that also leads back to how we have to prioritize our mental health more, as well. So like I found with being sick, and then knowing about my mental health as well. It means that I know how to deal with those things more so like, yeah, I can then see it in other people and be like, Look, you’re not doing stuff that helps your mental health and I think we can really teach the wider community about the fact that mental health is just as important.

    Ali
    Yeah, definitely. I think there’s almost a weird wholesomeness to life when you’re managing sort of this sort of thing. You really, I feel you become so aware of everything. And you appreciate the little things so much.

    Hannah Hoskins
    I completely agree with that. I think also, it comes from having to cut out the bullshit. Like, it’s understanding that we all have needs and that they are important. Yeah. And that we need to honor those needs. And that comes from having to constantly honor the need of my illness.

    Ali
    Yeah. No 100%

    Hannah Hoskins
    It sort of sounds like you’re positive spinning on a on a bad thing. But it can be it’s, again, back to that duality of that it can both be a good thing and a bad thing that way.

    Ali
    Yeah. Yeah, there’s a lot we can learn from it, I think and from our experience of it.

    Hannah Hoskins
    Yeah. I mean, it’s worth saying that if you can’t find good in it at the moment, it’s completely ok. Yeah, like, you can have a pair each time where it’s just really sucky. And that’s fine. And if that’s the space that you’re in now, do not beat yourself up for that. Just allow yourself to go through it and feel it. Like I think, I think with everything or every part of this illness is about being ultra kind to yourself, and allowing yourself to feel however you feel and that there is no right way of going through it.

    Ali
    Yeah, I think just it sounds weird but sometimes I just treat myself like a little toddler. And I need snacks a nap and a blanket, and a good TV show and just chill. Just do you. Allow yourself to feel all the things you’ve had a tantrum, it’s fine. Get your blanket. I saw a great thing that was it was on Instagram and it was someone saying that you should speak to yourself, like your inner voice. The way that you would speak to a puppy. Like you know how like you celebrate everything a puppy does, you’re like, Oh my god, you want to go for a walk. Let’s go for a walk. This is so exciting. Oh, good job. Just do that to yourself all the time. And you feel great.

    Hannah Hoskins
    Celebrating the little things as well. I think my friend might, as I said, My Yoda friend brought me through sickness I’m trying to convince her to, to celebrate her 10th year of being sick.

    Ali
    Yes.

    Hannah Hoskins
    Like we should celebrate this. I mean, I know I know. It sounds weird, but at the same time, you’ve learned a lot and changed a lot.

    Ali
    Yeah, I have a little party.

    Hannah Hoskins
    Yeah exactly. No one else throws your party for these things.

    Ali
    I mean I feel like it needs to be a pajama party because

    Hannah Hoskins
    oh, yeah, I keep threatening to turn up with like a pinata. She’s just like really Hannah. I’m like, we’ve got to celebrate everything.

    Ali
    Exactly. You’re finding joy.

    Hannah Hoskins
    Yeah, exactly.

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