Totally ranting, giving up, gave up and waking up

Well since writing my first blog entry, I’ve had a total crisis of confidence, what the hell have I done. Not only did I decide to put my whole pathetic existence online I also showed the world my poor writing and spelling skills, after re-learning how to live with having dyslexia and the shame of it, Ive now decided that if I cannot even write a blog then what am I doing a degree for, let alone trying to finish one less than three months after having a stroke, whilst dealing with a crohn’s flare up.

So that’s it I pretty much gave up, I was in hospital three times over the last two weeks seeing my specialists some good news, other good and bad and some just sent me further down my black hole. It’s hard even as I write now I worry that when my family reads it they will think she seemed ok, yep I do, I am, I have to get on with it and take it on the chin, but then when no ones around it doesn’t mean I smile or I’m happy I have to deal with these illnesses.

Who can smile continuously when less than a two weeks ago I was running round the house franticly preparing for getting to my hospital appointment with the worry in the back of my mind that I was going to be admitted, only to find I had two options either wait up to six weeks for an urgent, yes urgent MRI or be admitted and be in for minimum a week while they investigate and treat me. Well what choice, I mean there was no choice I can’t leave Mark for up to a week and put him and Finlay through me being away again, so I have to wait. Wait till the 17 April to be precise, having no treatment for my flare up because of the increased risk of strokes and cardiovascular complications when taking steroids (initial treatment for a flare up), he (the doctor) didn’t want to put my body under any more unnecessary strain until we know exactly what we are dealing with. Funny isn’t it saying “what we are dealing with” he’s not dealing with anything or wasn’t until I said, he really wasn’t banking me asking any questions, there is real unwritten rules when you deal with doctors, 1 don’t ask questions, 2 they know best and lastly they always know better than you what’s going on inside your body. So I sit there fighting back tears, because you must be strong, and muster the courage to say “so what do I do in the meantime, I mean, I’m struggling getting out of the house”, priceless reaction “well if it gets worse than it is at this point or you vomit you go to AnE straight away” well thank you so much doctor, and I walk out of his office in tears to the toilet.

Two days later I’ve an appointment with my stroke specialist, and the stroke nurse specialist they were brilliant, put my mind at rest about my future prospects of having children, which cheered me right up. Until, that is new I really started to processed what actually happened, so they didn’t have my hospital notes, not a great start and the doctor told me that since I’ve had a number of witnessed absence seizures I need to start medication to prevent them, especially if I want to drive.  Soooo, another illness to add to the list, arhhh, what’s adding epilepsy to the list might as well, the more the merry apparently.

I can’t say I’m not gutted because I am, but I’m just not able to process it all, so I’ve chosen to take from that appointment I am likely to be able to have more children all be it under carful consultation. Yep, in total denial, but honestly the hole is big enough I can deal with it another day.

Four days later I have my appointment with my physiatrist, such fun, now the last time I saw this guy two weeks prior he asked me if I had hope or am I hopeless, yes really, it was like being in an American teen drama. So how did I answer, “My health is hopeless, but now you’re asking me if I am hopeless you’re making me think you think I’m hopeless” his reaction was “so you are living with hopelessness”. Well yes, I fucking am now it seems.

So as you can imagine I’m not thrilled at this point about seeing him, but its ok because my hospital notes are still missing and he spends most of the appointment trying to track them down, after 25 minutes he gives up and says he cannot do anything without them so I will have to come back another day.  He was planning on changing my anti-depressants I’ve been on the same ones for over seven years now and he thinks that maybe they’re not working? Good lord, he’s good, he’s really good! So I leave thinking thanks for all that extra stress and worry, I just take a week to get over the anxiety and stress because I’ve defiantly got time to do that.

So I’ve spent the last few weeks in the toilet worrying, not being able to concentrate, not getting any work done, falling further behind and falling deeper in to my dark hole of my sorry sad existence. What now, well I’m going to put my smile back on and hope I find some energy and kick university ass.mI’m waking up and trying again.

Sorry for the bad spelling! I will try harder I promise!

So embarrassing

Well I did it, I started writing a blog, its scary stuff, you’re putting your whole life up online, and for me its gutsy, sorry couldn’t resist. What I mean is I’m opening up about my life, how it feels to live with long term illnesses, even those closest to me don’t know the ins and out of my toilet habits or darkest thoughts, well they didn’t.

I’m pretty sure that many would have read my blog wincing, thinking how could she, oh it’s so embarrassing, we don’t talk about poo, or for the boys out there that still think ladies don’t poo, well I have news for you ladies and gentlemen EVERYONE poos, just some do more than others.

Sure I’ve lost a few Facebook friends over it, aarrhh fuck-um, they’re probably the ones that rolled their eyes at my posts of my beautiful son anyway, and besides who needs friends anyway.

I’m not embarrassed anymore, I refuse to be embarrassed and apologies for being ill, living with illnesses is hard enough without adding other peoples shame on top.

Well that’s how I wish I could feel and how all people struggling with their health should feel, except I am not, all too often I’m both ashamed and embarrassed by my health. No one asks to be ill or likes it, it just happens and you have to find a way to cope. Unfortunately, shame and embarrassment is another unfortunate side-effect of living with chronic illnesses, except know one warns you about it and there’s no treatment.

Having said all that I’ve also had some amazing feedback and received many kind words of support since writing my blog, all of which was really unexpected and exciting, so thank you everyone.

A beautiful day

This is my first blog entry, I write lying from my bed after waking from my second sleep of the day that gave me some much needed relief from the pain. I’m staring out my window at a beautiful day outside, longing to be out enjoying it, except I’m not I’m clutching my tummy wincing from cramps and spasms, and as I write i’m thinking about all of what I’m not doing and what I should be, while waiting for the next rush to the bathroom.

It’s funny really, it’s like I had a 6^th sense that it was going to happen, I got out of hospital after having my stroke and all I could think of it shit I hate my bathroom we really need to decorate. Now it looks great, don’t get me wrong, however, now I really hate it, its now become the room where I sweat in pain a flush away any nutrients my knackered and aching body had managed to pick up.

I’m 3 weeks into a Crohns flare up, I should be grateful really I’ve not had one this bad for years. Don’t get me wrong I really am, it’s just, it’s hard to be grateful that I’ve not been shitty my pants every day for the last few years when I have been battling the aftereffects of a bad pregnancy and birth, depression, panic attacks, bouts of vertigo, tests for MS, a body covered in psoriasis, a torn artery and a stroke. Maybe that’s it; basically life just wasn’t shitty enough, well, now ladies and gentlemen life is also shitty.

For those of you who don’t know what Crohn’s disease is it’s a chronic condition that can affect any part of the digestive system and can cause diarrhoea, pain and weight loss amongst other symptoms these are just my main symptoms. More information can be found at http://www.crohnsandcolitis.org.uk/information-and-support/information-about-ibd

Crohns is what I call a shitty disease mainly because it makes you shit a lot, and I mean a lot, at the moment I go between 6 and 9 times a day, making leaving the house a game of Russian roulette with my pants! It’s that time again when I have to start carrying around a change of clothes and baby wipes, not because I’m toilet training Finlay, but for me, that’s right my emergency pack, oh the humility, as if I didn’t need to give people another reason to stay away from me, why not add the lingering smell of poo stained clothes! Going shopping is great fun at the moment, people take one look at my arms and run for the hills, people jump out of the way, its comical really, but it’s also so sad, ITS NOT FUCKING CATCHING, I think to myself, psoriasis the popular girls’ disease, but that’s for another blog.

Apart from the actual shitting, it’s shitty because you can’t see my pain or discomfort, most of the time I say I’m fine, I’m OK, just tired, because it’s easier, plus know one asking how you are doing, no matter how genuine, really wants you to real off a list of symptoms that are making your life harder by the second to keep your fake smile upright. So I smile and say I’m OK just tired.

And on that note I’m going to take my fake smile to the toilet, and admire my new bathroom.

Well that’s it my first blog entry an honest, frank and graphic account of living with long term illnesses.

Thanks for reading, hope you enjoyed it I cannot wait for feedback and to hear from other suffers, about your journeys.