It doesn't get better.

hello lovely people welcome to my bed not even like the most attractive shot of my bed but I don't have the energy just set that up we've now been home from Malaysia for 2 weeks and I am still struggling to get over the jet lag uh Slash exhaustion so I thought I would make a classic sit down thoughts what are they where are they everywhere in the room at all different places video about um by chronic illness and just you know what it doesn't get better chronic illness does not always get better

and that's okay I first got diagnosed with having a chronic illness when I was a teenager even though I like obviously had like signs and symptoms even when I was younger um I have a effectivity in my chronic illness is actually just symptoms of my genetic disabilities so yeah probably should have known they weren't going to get better however um when I did get diagnosed as 17 and they were like you've got chronic fatigue that's what that is that's why you're always more tired than all of the ot

her children in school uh you're not just lazy I was like you don't say um and they were like yes you are uh more prone to illness than all the other children you're not just faking it yeah I told you that um you're not just being wimpy when you don't want to stand in the cold or the extreme heat yeah I know indeed I going with that wait but even once I've been diagnosed I just seem to think oh but in the future it will be different but how Jessica how was I imagining some kind of technological

Marvel like I would have some incredible magical book i' I say bullet because my mother constantly tells me off for trying to find the golden bullet no the Magic Bullet the golden pill I just mushed those together which malop isms also thing my mom does it's International women's day I remember being really little and my mom had a surgery on her eyes um which she told me that I would need to have by the time I was her age which is rapidly approaching um which it be like in 2 years time I think s

o that's that's fun for me counting down those months um not really looking forward to that anyway so she had this surgery and I remember her telling me yeah it was really horrible for me but by the time they do it for you it's just going to be lasers there'll be no cutting involved no knives it'll be easy it'll be simple 30 years later they're still using knives for surgery medicine has not progressed that much Panic stations everyone my eyes seem fine though except for the one I can't see from

for another time God where am I going with this you're doing a really good job by the way this is well done well done continuing to watch thank you so much brilliant excellent brilliant job brilliant job youd like to subscribe I do have more videos which generally are more of a they have a we'll get there we'll get there together you know we will absolutely get that together we're here together subscribe if you haven't already like comment subscribe so when I got diagnosed as a teenager I defin

itely thought that I was going to at some point probably come across some kind of medical Marvel that would help my my chronic illness but what I actually found I found that my body has not got better it's just that I with time have found it easier to live with I accept my body more and I've gotten used to actually working with it how I need to work with it and what I need to do which does make it very awkward whenever I come across family members who haven't seen me since I was very ill or they

see me not very often and obviously the thing that sticks in their mind is how awful I I looked and the stories that they hear about me when I'm at my worst because no one passes on stories about me when I'm doing really well guys I would like Awards and stuff why do they not pass that on I guess cuz it's about social media no one cares fine causing to suck back in family feelings or something so yeah makes it very awkward when they go ah you so you're better now right you seem so good and I'm

like no no I'm not better I'm never going to get better that's not going to happen I'm just very good at managing my body now and then I'm like do we I what do I do now do I have a conversation with them about how I have to make sure that I go to sleep at a reasonable hour make sure that I always eat enough calories every single day for my body but not just within the day I have to make sure they're spaced out can't ever skip a meal oh no or I immediately anyone else struggle desperately with th

eir blood sugar and also have netive tissue problems please talk to me uh because that is really going out of control now and I could use I mean obviously I should see a doctor the wait list on that one is is quite long so if anyone has already seen a doctor about that like to share oh what's my disability great question great question so I have a nerve condition and a connective tissue disorder um and it essentially means that my nerves so I get very delayed feedback meaning I can injure myself

and I don't really know until later on so annoying so annoying like I can touch things that are too hot or too cold and I don't really know until I visibly see it and go I burnt myself I such a bummer you going to hurt later I wake up in the morning and generally how my voice works is I will wake up in pain and then have to back think back track Think backwards as to what on Earth has happened why am I in pain what was it and gen generally I don't know I I don't really think about it because it

made such a little impression on me at the time that I need some someone else to back well I guess you did you did carry those bags for like five minutes I guess it was that so I have a double scoliosis so my body's not really aligned I know and that just Pricks my neck and then migrain for five days right so there is this common misconception that chronic illness gets better with age I feel this is a common misconception we have given ourselves because we lie to ourselves um kindly I think it'

s a Li with kindness we lie with kindness uh I certainly lied to myself kindly but but recently my doctor told me some good news uh which was like rare f um he is one of those people who gives you the truth straight I wouldn't want to be his family member be perfectly honest with you I've been blessed with parents and a sibling who are straight truth straight truth truth people and uh it's not my favorite I am much much flowerer and prefer prefer to gently be told things why did I marry someone

who also gives me straight truth that's a great question anyway so apparently your chronic illness doesn't necessarily get worse with age I know I can I too can hear the Cherub singing Angel singing I wait cherub's play Hearts angel sing th sing Angels play hars whoever's playing the harps whoever's singing it's fine it's good it's great my thoughts again where are they all here everywhere absolutely everywhere so I panic quite a bit about the fact that I'm in my 30s not but not the fact I'm in

my 30s I I'm quite happy being in my 30s the fact that I'm in my 30s and I have a chronic illness and I feel this bad like uh this doesn't seem great I surely should not be dealing with this level of pain like it's pretty amazing when I wake up in the morning and I don't immediately have a headache like I wake up and the back of my head and neck are not uh inside I'm kind of like what is the word you know when your muscles do the thing that is a that is a miracle to me oh goodness wow didn't wak

e up with a painful spasm today golly great day uh since we came back from Malaysia I've had one of those days generally I do get more than one a week or one a fortnite um when tired or having not had enough food it is worse but Al it has to be the right kind of food I would definitely say there are different challenges at each stage of my life that I have gone through and it does feel now like I have much more of a handle on it I know that I'm everything I'm saying now is very contrary to that

point but that is because I had just returned from a long trip abroad I feel like I handled being in Malaysia not as well this time as I did last time primarily because I didn't have the didn't have the right ADHD meds which I had the year before for um and strangely my ADHD meds don't just like help my ADHD they um they do a lot for me physically including helping to manage my blood pressure and reducing my swelling don't ask me how that works they do a lot for my pot symptoms basically poer or

thostatic tardia syndrome for those not in the neres and I think without them it was not as easy to quickly bounce back UK wide shortage though what are you going to do but essentially what I'm trying to say is that certainly not 10 years ago um coped with the life that I have now uh in terms of like being a mom running a business um taking trips to London to do do speaking events and like traveling abroad I wouldn't have been able to manage it in with the same way that I am now even though I wo

uldn't say that my body in its base state is necessarily better it's just that I am better able to manage it and that is finding the right medication for me and it's psychologically being more adapted knowing the things that I will have to think about ahead of time having more of an awareness of like I do need to just I have to know when to say no I have to know when to say that's sorry that's just that's all too late for me and I would love to do that opportunity and I have to turn down so much

in the way of work opportunities which Cuts me to the core um both in the sense of like money and in the sense of of like that sounds really fun because I'm like I physically can't manage that that is not going to be doable for me I had a an opportunity that would have been so cool to do but it would be right after we'd come back from Malaysia and it would involve me going to another location still in the UK but still like traveling and just not just not it was not it would not been possible fo

r my body and I had to turn it down even would have been so good um but you know like in in retrospect would I I I definitely was not feeling well that day I didn't and I know that now but had I tried to go and do it in a few months I would just remember the horror of trying to do it how well I was that day rather than what a great day I had you know and I'm not going to remember oh I missed it you I'm not going to be sad that I missed it there are certainly things that I will always be like you

know what I know I'm going to feel horrendous after I do this I know this isn't going to be necessarily healthy for me but I am doing it anyway and there's things like someone's wedding um when you it's the last chance to see certain friend before they leave the country for a few years um but you have to go and take two trains to get there two trains to get back and you know when you get back home you're probably going to like crash out for two days but you do it because you know that's your ma

te that's your friend and for the next however many years that they're gone you going to be like yeah that's great and the you're weighing it up like the crash out time like does it really one of my cousins um got married just as I was starting University and I didn't go to her wedding because and the decision wasn't really mine like it was made for me the decision was made for me that I wasn't that I I wouldn't be well enough to go to her wedding and still come back and do Fresh's week and in r

etrospect like I should have gone to the wedding I should have chosen her wedding over fresh as week she's my cousin she's in my life forever always love her and I still would have been able to go to part of Fresh's week and then leave and now I know like oh God yeah I do have to have to turn down jobs and sometimes I do have to balance things out and and I have to even when we're in Malaysia be like oh God I love to go and and see this with ruper i' love to go and do this and you know obviously

want so much of so many things with him that I'm like I want to spend every moment of every day with you my God you're amazing and I love you rben is my toddler for anyone who is watching and it's like who is this person she's bringing up for the first time um for anyone who doesn't know I have to and I want to experience everything with him but like that's I also need to work and I have to make choices and I also need to rest and sometimes I have to make the hard decisions of where I take my r

est time and sometimes rest time has to be cut out of work hours if I'm feeling particularly bad but sometimes rest time has to be cut out of home hours and I have to be okay with that and I feel like I'm definitely learning to be better with it I always remember how much I struggled in my 20s when I would meet or come into contact with um like my parents friends or older family members who were just starting to experience the decline of their bodies or were just starting to ex have illnesses an

d develop disabilities um I remember having one conversation with someone who had only just started to have difficulties in their would be 60 and was saying how how much harder their life was much harder it was for them than for me because I had always experienced having a a body that didn't really work but they had they had 60 years of their body working and now it didn't and so that was much harder and I I remember feeling that anger inside and me like my God that's such a such a horrible thin

g to say and now I can really see like well they were going through the really raw first stages of that grief that is a grief when you are diagnosed with a chronic illness a long-term health condition um a disability and I obviously think there is so much empowerment that can also to be around disability and claiming parts of ourselves like this is our identity this is who we are we can love ourselves too but that is a grief and now I can see like you were grieving you were raw okay you didn't k

now how offensive you're being fine that's fine but I also feel like well you know what I'm in my 30s now I've still got another 30 years till I'm in my 60s um i' I'm going to learn I'm going to learn a lot I'm going to be so ready by my 60s I'm going to have this down it's going to be great I'll know I'll I'll have sorted out all my body's chronic illness stuff by then um so when the regular 60y old stuff hits me I'll be good like no worries uh losing eyesight due to aging no big I was going to

be like off writers jokes on me me hands don't work anyway um they do they do a bit bless them what is up with my little finger yeah I think we're okay Bo so in conclusion acceptance resilience learning all your little tips and tricks whether that be a funky pillow the best type of Cutlery to carry around for you uh making sure that you don't eat purple things on Tuesdays whatever thing Quirk your body has who knows uh I'm building an excellent support system of people who are genuinely wonderf

ul and in your life for a good reason and who benefit you are all very important don't keep the people who you drain your spoons for uh for no reason uh and they don't bring you anything if it upsets you to talk to someone and they're not really bringing you anything it's okay to let to let it go it's all right it's fine I think you have to have an element of self- protection when you have a chronic illness there's a lot of talk about how oh we should always think of like our bodies and our mind

s being one and we're all together and for me the healthiest way to think about my disabled body is to think of it as something I have to take care of separately to me for me I find that way I take better care of it than if I'm thinking of it as my own body this psychologically healthy I don't know don't don't answer that please don't answer that anyway cl to therapist no but if it gets the job done it gets the job done anyway if I have this little like little disabled Gest body and I'm like I'v

e got to look after this geez and you know it really just drains the body's spoons um Spoon Theory is a theory of energy you can watch the video up here click the card I'll leave it in the link in the description to explain that theory more to you if you do not know anything about it so if I need to look after this and it makes it actually quite ill um whenever it has to do anything with this group of people or you know talk to this one person then um no just know because I can't I can't do with

that I've got a life to lead can't can't help with all that illness going on thanks the main take away from this video is I want you to know that whether your chronic illness whether your long-term ill health whether your body as a physical being whether your mental health because I do want to include mental health here in with chronic illness please do know I want you to know that whether things improve hugely whether they plateau and stay the same whether it doesn't necessarily get better it

can it doesn't mean that what is there for you ahead in the future is necessarily going to be so much darker I thought at one point that that was all there was because that's all that I was ever shown but it isn't there are so many lovely things waiting ahead for you and you're going to get there whether there's a small fleetingly Beautiful Moments that bring tiny joy to your heart or whether they're the huge moments that uplift you and carry you on for months there are those little drops of sun

shine and big rainbows share your own experiences down in the comments below and let's get something lovely and positive going thank you so much for watching um I'll see you in my next video which probably shouldn't be from my bed hopefully won't be from my bed