MeMyselfAndBubbles

Jo, 31 born & raised Mancunian., Spent the past (near) 10 years living between here & liverpool, but currently Manchester based again. Had Crohn's since I was 3 and my ileostomy (Bubbles) for 18 years now

[memyselfandbubbles]

It's my 10 year anniversary on Tumblr 🥳

Apparently I missed my blogs birthday the other day (But to be fair I missed Bubbles' 18th and that bitch is literally attached to me, so...)

[memyselfandbubbles]

Bubbles had a pretty big birthday recently & it got me thinking

So back in August, my ileostomy turned 18 (a.k.a it's been 18 years since my first op). If it was a person, it would be a whole ass adult now.

It really is crazy to think about. I just turned 31 (about 5 weeks after Bubbles' birthday) and I've had my ileostomy for the best part of two decades. I've had my Crohn's for around 27/8 years-so the best part of three decades-now tell me that's not a complete mind fuck for me.

I've actually spent the past 2.5 weeks in hospital (I'm a lot better now and should be leaving tomorrow) but I think this is the 3rd time I've been hospitalised this year and like 95% of times I end up in hospital nowadays, my stoma (ostomy) played a big part. So here's the thing, I've literally spent my whole life ill in one way or another, so I don't just go to the doctors/hospital every time I have a hiccup with my health. I literally have a checklist of things that need to be happening before I take myself to a&e. It includes shit like;

Have I been able to take my medication and keep it down?

Have I become dehydrated to the point where I got my dehydration headache and surpassed it? (because if i did i absolutely need I.V. fluids)

Just how much pain am I in compared to my norm/ my own pain scale ?

Is my heartrate above 120 when I'm completely at rest? ( This one might sound weird, but I don't exactly outwardly express the level of pain I'm in at any given time.) I literally spent way over 2 decades learning how to internalize all that, after spending my childhood with medical professionals saying things like "You can't be crying/screaming anytime you're in pain"/ "You can't expect to go through school/get a job if you're always crying/screaming/letting everyone know you're in pain"/ "You have to find a better way of dealing with it/expressing it"/ -and my 'favourite' a.k.a the one that has been, by FAR, the most commonly said-"You'll have to learn to live with it" and yes, all of those were said to me REPEATEDLY as a CHILD. So now, I don't look like you would typically/stereotypically expect someone in a lot of pain to look like and with the fact that I'm on opiates (something that I actually get so much judgement/ suspicion/ discrimination for-not even joking here) it can be really hard to get a doctor/medical staff to take me seriously/ understand the level of pain I'm actually in. And I get it, opiates can be very addictive and some people out there will lie to get some. But I can't fake my obs. So when I'm sat there verbalising my pain, there is strangely more belief when they take my blood pressure/ heart rate and it's very elevated.

So, is my life/health really different from Jo of 18 (+) years ago? Abso-fucking-lutely. And there are so many ways that is a positive

While my rate of hospitalization is higher than your average person, it is nothing compared to life pre-ileostomy. I don't have to spend days-months in hospital a few times a year anymore.

I don't have to take steroids (especially for prolonged periods) anymore. Hell I'm not on a handful of medication daily and definitely not on 30-40(+) medications daily when I'm in hospital

I don't have to fight to convince people I have something 'wrong' with me/health issues, when I look perfectly healthy

And oh yeah, I'm not dead!

But. All of that does not mean that everything has changed for the better. Let's look at the negative parallels of those points

I do still end up in hospital a lot more than the majority

Even though the op was supposed to (as I like to say) "Get rid of where my Crohn's liked to live best" and in doing so eliminate the need for things like daily medication. I'm still on medication everyday (about 13 across tablets, modified release and liquid-10/13 are pain related)

Now it's the complete opposite. Everyday I live with visible-and very clear-reminders that there's something 'wrong' with me. Even when I feel pretty good, my bag and scars can make some people view me in a negative or 'weaker' way /make assumptions about me.

Okay yes I am going to make a negative parallel to this too, but first, yes I'm glad my own body didn't kill me. Yes I actually (usually) really enjoy my life. HOWEVER. I've spent every day of the past nearly 15 years in pain. And let's be clear about this, not just pain, but severe and constant pain. Every second of every day I feel like I'm getting stabbed near my ileostomy.

I unfortunately fell into a small, uncommon minority when it comes to the surgery. My body didn't do what it was supposed to (shocker right) and healed in a way that actually ended up being damaging for me. It tried, it did and when healing it actually kinda went overdrive and that resulted in a fuck-tonne of scar tissue. So when they opened me up to do my last op (a major op-because they had to open my entire abdomen yet fairly simple/quick) they had to spend additional hours in surgery because they literally couldn't see for the scar tissue. I'd already had my Crohn's come back with a vengeance and started getting pain round my ostomy site. They realised the reason I'd been getting the pain wasn't due to narrowing of my intestine, like they suspected, but because I'd healed with scar tissue over nerve endings. So in that surgery they basically had to remove all my abdominal organs, scrape scar tissue off and put them back, all before doing what they were supposed to do. And for any of you out there that doesn't know this, the more you cut into scar tissue, the harder it heals. So just as my first op was supposed to be this solve, the last one was-in part-meant to get rid of the pain round my ostomy. Except when I woke up, they had to tell me that not only had they not been able to get rid of the pain, but actually it was probably going to be worse. Spoiler alert, they were right. Now there's no way to solve it. They can't give me medication to treat it-like they tried with my Crohn's. And they can't give me surgery to get rid of it-like they tried to with my Crohn's. The only thing they can do is give me painkillers to mitigate the pain. And there comes the other crux of the matter, because now not only is my pain severe,constant and permanent but 1) the medications they give me are highly controlled and thus i'm basically treated with suspicion everytime I need to re-fill my script/meet a new Dr/ come to hospital 2) I've been on those meds for a long time already and while the rate of tolerance has been less than most people (who understand) would suspect when they really think about it. I've still been building a tolerance and will continue to do so

I'm barely into my 30's and my main/strongest medication is something that is used in palliative care. So where the fuck am I going to be in another 10 years?

I was so young when all this started, so much younger than statistics say I should have been. Like you have no idea, so let's look at it. The average age for a diagnosis of Crohn's, for example, is 20's-30's (I was diagnosed & started treatment at 4, after 18 months of being ill). And the ostomy one is way more of a mindfuck than you're ready for. The average age of a person when getting an ostomy is in their 60's (I was 12...)

And yes it is possible for babies/young kids to have an ostomy and yes there are a ‘lot’ of 'young adults' who get one done (like mid 20's-30's) but even getting one at those ages is a very small percentage of the overall number.

I guess my point to all this is that yeah I am grateful to have lived all the years that I have since having my first op and I'm privileged to have had some of the experiences in life & met some of the people that I have, since having my bag done. There are definitely positives from having my ileostomy done, but this shit can be hard, and the idea of adding in all those extra decades to be dealing with it, it can be a difficult thought sometimes

[memyselfandbubbles]

The past few weeks have been interesting...

I'm currently in hospital (have been for, god 17 days now?) I've actually been really lucky (bar the 30 hours in A&E) because after that backed-up-cluster-fuck-of-the-nhs-waiting-times, I got put on a ward I've been on a few times, then I actually got moved to a side room on the surgical ward (think it was probably a combo of where they had a bed and covering themselves as they found a bit of a hernia with one of the scans they gave me in a&e-they also found fluid in my lumgs and so treated me for suspected pnumonia for a bit there, but i'm all good now)

The obvious benefits of a side room include; 1) Your own bathroom (great when you have an ostomy and even better when said ostomy kept being a dick and going crazy with production), 2) Control over the lights. I cannot understate this. Hospitals are kinda renowned for having bright as fuck lights and their day/night schedule is so fucked too. This becomes even more important when someone has, oh I don't know, crazy insomnia and so does not remotely have a normal circcadian rhythem (hint, me). 3) Because I am a prepared bitch when I come to hospitals (we're talking, phone/laptop/ headphones/chargers/books -and this time pens and colouring book) So having a side room has meant that I could just have my laptop on without having my headphones on practically 24/7. one so I don't disturbe other patients and two cos my headphones are fucking awesome at noise cancelling all the normal hospital noises (other patients, medical staff, the beeping of machines)

Also been super lucky because the staff on this ward are just the sweetest/nicest/funniest I've come across in so long.

Anyway, 17 days, 30 hours in A&E, 2 wards, a C.T, X-ray, M.R.I, Scope of my stoma, a week and a half of I.V antiemetics & treatment for suspected pnumonia ,later, I should finally be going home tomorrow (yay)

[simplyjo]

sometimes, late at night

When my medication has kicked in and the pain has dulled, when I’m tired enough to know that I will actually fall asleep tonight. When the hum of my laptop resonates with the background hum of the world and there are almost no other sounds. I can lay, and be at peace.

[simplyjo]

Sometimes I think about mental health

I've seen people in my life struggle, sometimes there might be overlapping areas where we can empathise with each other and others where I know I will never really get it. I think though with most people I see it as a dial. That with therapy or medication or just through circumstances in life changing, that, that intensity could be dialled back.

I'm not sure I've ever seen mine as a dial. More like an on/off switch. But kind of like when a fuse has blown and it doesn't matter which position you flick it to, the result is just the same.

And I'm not saying my life is completely awful and there is nothing good in it, because neither of those things is true. But at the same time, sometimes it doesn't just feel like the fuse has blown, but the bulb has shattered, there are no lights in the house and the entire city has a blackout. Everything is off & there is only so much light a candle can provide in the dark.

[simplyjo]

Dear illness

My old friend, we sure have been through a lot together, or rather you’ve caused a lot of things that I’ve had to deal with. In a completely fucked up way, you are an old friend. The oldest. I can’t remember a time without you, and considering you’re about 20 years old, that’s not surprising. This has been the only life I’ve ever known but you did let me have little breaks-just enough time for me to understand what my life should be like, what healthy felt like. But as you got older, you grew and as a consequence you’ve nearly killed me a few times.

I hate to admit it illness, but there’s a part of me (a very small part) that’s almost thankful, because an experience like that, it changes you forever, in yourself an the way you look at the world. I try to remain positive about you, think of all the people I’ve met because of you and how you’ve caused me to have elevated levels of things like; Compassion, patience, tolerance. Even love & happiness. I can appreciate the little things in life that not everyone can. I can appreciate how good my life is, because I know how much worse things can get. For 99% of the time I can be that person, but that 1% exists too. The 1% is the time that I hate you with a passion that burns brighter than the sun. I hate you and by extension me, because you are me, and I am you. I hate that you took away years of my life, that I never really got to act like a child because I had to grow up so fast. I hate that you couldn’t just leave, especially after having my surgery-it happened for so many people-why did you stay? I hate how much you dictate my life, how much you always will. I hate the rifts that have happened in friendships because of you, all the relationships that could have occurred but didn’t, thanks to you-and how I struggle with relationships, all the issues I’ve had because you’ve fucked me up so much. I hate the marks you have made upon me, fucking my body up on the inside and the outside being permanently marked in attempts to cut you out. I hate all the times I’ve hated myself because of you and what you’ve done. I hate that I’m always concerned that people will think I’m being dramatic or attention-seeking when I speak of or tell stories about you (I’m not, it’s just all I have) I hate all the pain and sadness I’ve caused my family over the past two decades because of you and I hate that I will have to spend the rest of my life explaining you to anyone that is going to be in my life.

Saying all that, the fact remains that not everything you’ve caused is a bad thing. You gave me a level of strength and determination that most people can only dream of, a level that has and will continue to carry me through life. Because of you I had to learn to not give a fuck about what others thought of me and the ability to do that makes life so much easier. You’re a constant, one of the only true ones I’ve had in my life. My life is difficult, a lot more so than most people’s and the likelihood is it always will be & I don’t love you illness, but you have played a big part in making me who I am, and honestly? I fucking love who I am

[simplyjo]

Pain is a funny thing

One because it’s so personal, what is painful for one person is bearable for another and complete agony for someone else.

For me personally, I’ve got a lot better at dealing with pain the older I’ve got. That has upsides and downsides. The upside is that I no longer have to emotionally scar people by screaming constantly, but it also means that a lot of the time, people look at me and think that there’s absoloutly nothing wrong, the latter can be very infuriating when dealing with medical staff. That in itself is kind of funny, because you know for a fact that they’d rather me be quite and dig my nails into my thumb than be screaming in their A&E. And the way that I deal with stuff now, it’s like I always have to justify my pain too, especially when they give you those fucking ridiculous pain charts (1-10 ) because when I’ve had to go to A&E from pain and then I say like an 8, they think, oh it could be quite a bit worse yet, but what I have to clarify every time is that my 10 is waking up after life-saving, major surgery, where I’d already started to build up a tollerance to pain medication when I’d been on morphine for months and ketamine before the op. 

Sometimes I wonder how things would be if my brain as it is now, was transplanted into the head of smaller me, would I have been able to deal with it all better? Would they have put me on half the drugs they did? Would I have had less of my memories wiped away? I couldn’t tell you

What I can tell you though,is  that I’m really, really tired of pain

[simplyjo]

The A&E incident-Story time

So at the end of January (like that last few days) I wasn’t feeling great, was struggling with pain and sleep-more than usual-pain with my ileostomy and my knees and because of it all I started getting dehydrated too. Didn’t really realise how bad it was and anyone that knows about ileostomy’s knows how quickly dehydration can become dangerous. 

So Monday day I missed my classes (my S.E.N classes which is unusual) and I was sleeping on and off, the girls lept checking in on me when they got back and I had packed my backpack, telling myself that if things hadn’t died down I’d go to A&E in the morning, but things got worse pretty fast. Unbeknown to me, the girls had decided that they were gonna sleep with their doors open and check on me regularly, but later that evening I had a brief conversation with them as I was walking down the stairs. Well…I say conversation, I couldn’t really get my words out properly and the ones I couldn were slurred. Anywho I went back downstairs to try and sleep again and the girls decided that they needed to call an ambulance. There’s a good chunk of time here that I don’t really remember. Apparently one of them came downstairs and I was just shaking in my bed in pain and so they spoke to the paramedics and I have a brief flash of the paramedic’s being in the house and then another flash of being in the ambulance and then another flash of holding R’s hand while they put a canula in. Which says itself how bad things were cos she’s seen me inject myself mid-conversation and not even blink. All I remember other than that is just a continious loop of “Everything hurts, everything hurts”

Next thing I remember is waking up and the girls being sat by by bed and me saying “Oh, when did you guys get back?” & they were like “Jo, we never left” Not only had they contacted the ambulance, ridden with me, stayed with me crying in pain and getting needles (they both hate hospitals and needles and aren’t used to me showing my pain like that) but they’d also contacted my parents and waited with me until my dad got up from Manchester. They were in hospital with me for more than 12 hours.

In the end, the doctors agreed with me, that the whole ‘episode’ was just a weird combination of severe dehydration, severe pain and sleep deprevation. After 2 litres of fluids and some medications through IV, I was well enough and so signed myself out and my dad took me back to Manchester, where I was for about 5 days before I headed back to Liverpool for uni and classes

[memyselfandbubbles]

Pain is a constant companion

The amount of times I’v heard people go on, about how individuals with illnesses/disabilities complain, about how much harder things are for them, not just healthwise but day-to-day stuff. These kinds of people like to spout out the things that have been done to help these ill individuals, to bridge the gap between them and the able-bodied. And this is true, many things have been done. For me though, one of the most infuriating double standards is how we’re treated in reguards to being ill. ‘Healthy’ people are encouraged to speak up if they think something is wrong, if they don’t feel well or are in pain. We’re encouraged to shut up. The amount of times I’ve been told (in about 20 years of being ‘ill’) that I’ll “Just have to learn to live with it” That is so easy for someone else to say. If you have something for life, it’s not often it becomes easier, you just become more capable of dealing with things. When I was a little kid, in pain with my Crohn’s, I used to cry, to scream in pain and I remember feeling like it wasn’t possible to feel any more pain that I was in. But I’d prove myself wrong time after time. You can think something is the worst it could possibly be, until it’s not, until something worse comes along. For me, my worst was after my first operation. I can’t even begin to describe to you the level of pain I experienced and I know that the memory will never, ever leave me. I thought the pain before had been bad...but I had no idea. 

Now though, I know how just how bad things can get and so even when I’m in moderate-severe pain, it doesn’t seem like it to others and so I constantly have to like justify it. If I’m with a doctor or in A&E and they give me that infuriating 1-10 scale and I say a 8, they think “Oh, well it could be quite a bit worse yet” and then I have to explain, what my 10 is, and that a 8 on my scale is high and pretty fucking bad. I never really seem to fit their description of someone in a lot of pain though, because instead of screaming, I’m still and silent and crying and it’s exhausting having to constantly justify yourself, especially to people who should know better (but then again they don’t do they, because they’ve never experienced anything close to what you have)

I may have become more capable of dealing with my pain, but the older I get and the more time I spend with it, the more it slowly breaks me. Never seeing an out can be a dark thing, so much so that for some people, it’s lethal. In a funny way, pain is my best friend, because no matter where I go, what I do, or how old I get, there it is, right beside me.

[memyselfandbubbles]

It’s been a strange ‘Christmas period’ this year

First of all I left my house and the girls I live with super early in December, because I was going away before christmas. I went away-To Austria to see a close friend of mine- for a week, came back and had just over a week to make sure everything was sorted for christmas & to do some work as my Dissertation deadline is getting ever closer. Then it was Christmas day and I had an absolutly awesome day. Got to see all my family together for the first time in like a year, got to see my auntie and my god kids for the first time in months! (which is possbily one of the longest stretches it’s ever been) and it was manic and crazy and funny and brilliant, all day!

I was reallly tired but I still didn’t manage to fall asleep till nearly 4 and then at 5 I was up being sick (keep in mind, I don’t even realy drink and I hadn’t had a drop of alchohol all day so it wasn’t some version of a hangover or anything) So I basically spent boxing day in bed, dropping in and out of sleep when I wasn’t running to the bathroom to sort my bag because it was acting up and the output was basically water. Then at one point I slept too long and woke up to it having leaked all over me and my bed. So then I had to strip the bed and my clothing and put them in the wash while I jumped in the shower.

Actually sat and watched a film and a few things with my parents after that, before heading back to bed (early hours again). Today’s been better and I’ve slowly been making my way back to 100% but tomorrow I have to go pick up my oramorph and go see a couple who are both pretty good friends of mine and I also have to pack again cos early afternoon on Saturday, me my brother, his girlfriend and a couple of their (...our) friends are heading away for a few days for New Year. We did it last year and it was a really fun couple of days.

Basically we all put to an rent a beautiul modern interior house and have a few days of fun hangouts/film watching/games and what now, celebrate the New Year and drive back to Manchester on New Years day. Then me, my brother and his girlfried come here to my parents and have a New Years meal with the family. I only have a day and a half after that before I’m off again. This time, back to my house in Liverpool. I’m back at uni the next week, but I have work and deadlines (outside of all the dissertation stuff) for when classes start again. So yeah. Weird, crazy ‘christmas period’

[memyselfandbubbles]

Eager to please, trying to be what they need. But I’m so, very tired

Whisper- Fine Frenzy

[memyselfandbubbles]

If it was a game of hide & seek I lost but my Crohn’s won

So I’ve been having a bit of a bad bout recently. About a month or so back now I was taken off my codeine and put on some slow-release morphine tablets, still messing around with the dose and it doesn’t help that my pain has been spiking pretty badly. Actually went home and to A&E last week, they didn’t keep me in but I did have a really awesome young doctor who had actually read through my notes before seeing me. Not the notes of the notes of my notes (At that level of being condensed what they usually know is ; My name, my age, that I had an ileostomy because of Crohn’s) anywho, he was great and re-jigged my dosage (which is working a bit better so yay) but the downside is my bloods showed my platelet levels are high, which means that my Crohn’s is flaring. It’s probably the lowest grade flare I’ve ever had which is something, because my Crohn’s has never pulled its punches before, so definitely grateful for that, but I’ve gone four years without it flaring. Four years. 

I know it’s a life long thing, trust me no one gets that more than me, but every time they’ve cut more intestine out of me I think ‘maybe they’ve got all the places it liked to live, maybe all I’ll have to deal with is the pain’ At this stage it’s not bad enough to medicate and I’m hoping it stays that way, but it’s still kinda crappy

[simplyjo]

I see the invisible marks my illness made on my family

An illness is like a toxic substance in a water supply

Not enough to kill you, just enough that it slowly, really slowly, screws you up. But not just you, because that’s what a lot of people forget-I know I do sometimes- that it’s not just you whos effected by it. Especially when it’s a child whos ill.

My older brother sent me a link the other day, to a home video that’s been moved over from the old tapes. It was from ‘94/5, basically stuff like my first christmas and whatnot and I watched it. Mostly just laughing at how massively 90’s all the clothing was, or smiling at things I’d forgotten we used to have in my old house, stuff like that. But it wasn’t till tonight that I thought about how hard it must have been for my parents to have a perfectly healthy daughter. I’ve said plenty of times that part if me is glad that as far as I can remember I’ve always been ill. I’ve just never thought about the fact that, that isn’t true for my parents. Of course I’ve thought about them having a kid thats ill/ has an illness/spent the first half of their life in & out of hospital. I’ve just never thought about the fact that they, for all intents and purposes, lost a healthy daughter. I will never be the version of me that I 'should’ have been. I wonder if they’ve ever felt robbed?

Don’t get me wrong, I have a great family. We’ve always been close knit, me and James were given a more equal footing in the house than most of our friends- by that I mean we’d sit down and discuss things as a family, and me and James would get a say in a lot of things. And while me and James have had the problems all siblings have, we’ve also always had a way better relationship than most siblings I know, especially as we’ve got older. And now we have Lizzie too. But growing up, there were always problems for the family, because of my illness. You know, not being able to plan holidays because we never knew when I was going to be ill and have to go back to hospital, never being able to just jump in the car and have a day out, because we had to know where we were going so I knew where toilets where and stuff. James having to come home to an empty house because our parents were with me at the hospital, him having to give up so much of his time at the hospital. All of them having to hear it, every time I screamed in pain.

In a way I’m grateful for it, because I genuinely don’t think you can grow up like that, be in a family with someone who’s ill like that, without it changing your perspective a bit. My family is awesome, and maybe we would be better if I’d been healthy. But maybe we wouldn’t.

I see where it’s marked them though. It’s not something that’s really discussed. There have been a few comments here and there, more so as I got older, about how it was for them, my mum and dad I mean. But I think about things sometimes. Like phone calls, what it must have been like, to call their siblings, parents, and tell them when I ended up in intensive care for the first time. To tell them  that they’d run out of treatment options, the only thing left to try- a major surgery. I wonder what it was like signing something to let someone cut open your child. What it was like when they brought me back from theater, with an organ missing and a needle in my neck.

I see where it’s marked them. The grey hairs, a few years too early, the look in their eyes when I tell them I’ve been a bit run down, the look that intensified when I moved out.

Life is hard, I struggle sometimes and no one in my family will ever be able to completely understand what it all was…is, like. It’s made some physical marks on me, and plenty more that aren’t visible, but the invisible ones’ are on my family too,

[memyselfandbubbles]

Me: *tries to go to bed at a reasonable time*

Me: ah yes

Me: 4am

Me: perfect

[memyselfandbubbles]

Something weird is happening with my meds

So I've been on my oramorph a while now a.k.a it's been 4 years since my last op and it's been on my repeat prescription nearly as long. Initially, the taste made me cringe (i even used to add orange tic tacs to the bottle and let them disolve to help with the taste) and for a while it's been fine, I got used to it I guess. But this last lot has been weird, I keep getting tastes/smell of bubblegum. Im 99.999999% sure that they've not added or changed any ingredients (plus I'm pretty sure they'd have to point it out) So have they actually added/changed something or am I losing my mind? I genuinely don't know which one is more likely

[memyselfandbubbles]

I wonder sometimes what it’s like to live as someone ‘normal’

I mean I’ve had plenty of times where I’ve wished I was normal, or thought how my life would be different if certain things hand’t happened, or they had happened at  different time in my life. But the last few day’s I’ve really been thinking about what it would be like to live as a regular person. 

To have a life that’s not dictated by my painkillers & when/if someone signs my prescription at the right time. To be able to be 22 (nearly 23) and have finished university, actually be out in the real world with a real, grown up job that’s in the field of my degree. For my biggest problem to be that I’m single while most of my friends are in relationships, or that my job sucks and I don’t get paid enough. To be secure in the knowledge that I’d like kids within the next 10 years. To recognize that the government in this country is kind of a mess, but to not worry too deeply about it because it’s not going to effect me that much. To be kind of messed up, but only the same amount as most people.

That’s just not the case though. I spend my days drugged. One part of me just being relieved that they help or work, but the other being really worried that I’m hardly into my 20′s and I’m already on a pretty strong dose of oramorph-up to 4 times a day. Being so worried of the tolerance I already have to these medications, and knowing that, as things stand, I will never get rid of the pain that means I need them. Because if this is the strength of things I’m on now, what position will I be in, in another 10 years. I’ll only be in my early 30′s. What if things are still the same. How are they going to be able to keep on top of my pain if I’ve built up a tolerance to the oramorph? That is something that scares me more than I can say.

Education & job wise, I’m going to be in my mid to late 20′s before I even finish university. That shifts the time line for everything else, for things like starting a family. Except, that’s not easy either. Because there’s the chance that I could pass all of this onto a child & the potential of passing it onto a child would only be a possibility if I had my own children, and with all the medications and operations I’ve had, who knows if I can?

This isn’t a boohoo, poor Jo post. And I don’t actually think I have an awful life. My core family is incredible & I’ve always had lots of great friends around me. I appreciate them, and the good things in life so much. But in all honesty, my entire existence worries me & that’s a really shit thing to feel at 22.

[chronic-confessions]

Confession #2,341

why us? like why did this happen to all of us? why are there people out there that consider the worst pain they’ve ever felt to be period cramps? yet we’re happy if the only pain we experience in one day is some period cramps. I look at all the people around me and have to ask why I was the one who was granted this life. I wouldn’t wish this pain on my worst enemy, but I can’t help but question why me?