It’s a Chronic Confessions kind of day! Today we have the lovely Jade Marie who has been a really huge supporter of my blog for quite a while now and is definitely one of my favourite bloggers out there! She’ll be sharing her journey with asthma and IBS today so read on to find out more…
You And Your Condition
Tell us a bit about yourself and interests!
My name is Jade and I live in a little village no one has ever heard of in South Yorkshire! Other than creating content for my blog, I love to binge watch true crime documentaries on Netflix with a hot drink and plenty of biscuits. Usually while wearing fluffy pyjamas!I’m also an avid bookworm; I have three bookcases (all of which are full to bursting) as well as a Kindle with over 100 more books on it. Random facts about me: I change my hair style and/or colour at least once a month, have a nearly photographic memory and taught myself to read hieroglyphics as a child. Oh and I’m also autistic.
What is your diagnosis/condition(s) and what was the process of it?
I have quite a few health conditions, but for the purposes of this post I’m only going to talk about two; IBS (Irritable Bowel Syndrome) and Severe Sport Induced Asthma. The name of that one has probably been changed now, but that’s what it was called when I was first diagnosed with it.
I don’t really remember being diagnosed with either really, as I was quite young when they both happened. The asthma was pretty easy to spot and diagnose, as I’d gone from a very active and athletic kid to someone who couldn’t even run from one side of the playground to the other without gasping for air! I vaguely remember having to do a lot of breath tests (called Peak Flows) and that I had to do these at home too for a month and keep a diary of the results.
The IBS was a little more complicated. I remember my mum saying she’d been diagnosed with it and that she mentioned to the doctor that I have a lot of the same problems and symptoms as she does. They asked her some questions and agreed I might have it too based on what she’d told them.
The problem was I already had a preexisting condition that they had been trying to treat, and the medication from that had made me really ill; which is what they originally blamed my symptoms on. But when they took me off the medication and the symptoms carried on, they realised it must be something else and looked into IBS.
How long did the diagnosis take and at what age did you receive it?
I think I was around 7 when I received both diagnosis, they actually came relatively closely together! The asthma diagnosis was pretty quick, I think it was only about 2/3 months from start to finish. It helped that back then you still had family doctors, and as asthma runs in my family my doctor knew that and had a good idea what it could be.
The IBS took a bit longer I think, as they were trying to rule out other things that could be causing it and it wasn’t anywhere near as bad as it is now. I think in total it was about 6/8 months.
What were your initial feelings following diagnosis?
At the time, the IBS diagnosis didn’t really mean anything to me. It was fairly mild at that age, and all it really meant was that I had to be careful what I ate. I’ve always had issues with food (I don’t actually like eating or the feeling of being full) so in a way I was kind of glad to have the excuse not to eat.
The asthma was a completely different story. I used to play lots of sports when I was younger (things like rugby, dodgeball and rounders) and I was actually really good. But after the asthma started, I couldn’t run like I used to do and it meant I couldn’t play as well as I used to do. I hated that I couldn’t play the sports I loved as much as I used to, and I’d regularly get angry when I couldn’t do something that I wanted to.
Do you believe you have any other undiagnosed conditions?
Both myself and my doctor know that I have a heart condition (another condition that runs in my family) but it’s a bit of a strange one that they can’t properly diagnose. Basically my heart occasionally has an irregular rhythm, as well as speeding up and slowing down at random and unexpected times. Oh and it also stops.
I wish I was joking but it does. For about three seconds my heart stops beating (which is probably one of the weirdest/scariest feelings ever!), I then get a stabbing pain across my chest and it starts back up again. It once did that 12 times in one day when I was 11, and I’m not exaggerating when I say I thought I was going to die.
But because it happens so irregularly and my heartbeat is fairly “normal” the rest of the time, they’ve not been able to formally diagnose what causes is. However tests have shown that it isn’t a stroke or heart attack, which is actually quite comforting!
What are the symptoms of your condition(s) and to what extent do they affect your everyday life?
With my asthma its difficulty breathing, tightness in my chest, feeling tired/weak and feeling like a red hot poker has been forced down my throat. I can also have times where I go dizzy and see flashing lights. The older I’ve got the worse it’s become too; I feel the tightness in my chest constantly now, even when I’m sat still. It’s like there’s a heavy weight there and I never feel like I can can enough oxygen into my lungs. Even just walking up stairs leaves me out of breath and shaking!
My IBS is a lot more varied: some days all I’ll have is extreme bloating (to the point I go up a dress size) and something similar to period cramps. Other days the cramps are that painful that I can’t even stand, and it will spread up the base of my back and down my thighs. On top of that I also end up with either constipation or diarrhea; something I’m not going to talk about too much for obvious reasons.
Between them both, they affect every aspect of my life. I have to cancel plans, miss university and even skip events I’ve been looking forward to for weeks because I’ve had a flair up and I’m in too much pain to leave the house. I get anxious about eating in new places in case it causes a flare up, especially if I’m not close to home. I even have to be careful drinking water in different towns and cities, as that can set it off too.
Life With Your Condition
Are you on medication for your condition(s) and do you get any side effects with it? How do they affect your life if so?
I’m on Salbutamol for my asthma, but it has little effect unfortunately. I need stronger medication, but currently all of these contain steroids which I can’t take because of my heart condition.
There isn’t any medication for IBS (that I’ve been made aware of anyway) but luckily we still use a lot of old recipes and herbal remedies in our family; one of them is using peppermint if you have an upset stomach. We put a drop of peppermint oil into lukewarm water (and a little bit of sugar to make it taste better) and drink that; it doesn’t stop it completely but it usually makes things more manageable.
Obviously that isn’t practical when I’m out and about, but I discovered that Polos work just as well! Now I always make sure to also have a packet in my bag, and Chris has even gone so far as to keep some in his car and jacket pocket – just in case I ever forget mine.
Are there any known triggers that set off a flare or make your chronic condition(s) worse?
I wish I was joking but at the moment it seems to be every time I eat and or drink. Normally it’s only fatty foods, fresh cream, spicy food and occasionally pastries that can cause a flare up. However some days I can eat something and I’ll be fine, other days I’ll eat the same food and end up being ill – I’ve never managed to figure out a pattern. Pizza can sometimes cause a flare up, but thats one I’m willing to out up with – I love it too much to give up!
My asthma can also be set off by quite a lot of different things. As well as actual walking/running, things like dust and smoke can cause an attack – it doesn’t even need to be much to set it off.
Would you say you have a good support network and a designated person/team to help you with your condition(s)?
Not at all; I don’t even have a dedicated doctor anymore. You just have to see whichever is available that day (if you can get in at all) and if I get one I’ve never seen before, or who doesn’t understand/take my conditions seriously I might as well have not bothered going.
In all honesty I don’t even bother going to the doctors unless it’s really urgent these days, I don’t feel like I get anywhere with them and there isn’t much they can do anyway. My parents and boyfriend are really supportive though, which I value and appreciate more than I can say!
Would you say it has affected your goals in life? If yes, in what way?
Not really; I’ve always wanted to be self employed because of my autism and mental health conditions. If anything, it’s made me even more motivated to make my business successful!
Would you say it has negatively affected your mental health? If yes, how has your experience been with that?
It’s definitely made my anxiety worse; I’m always anxious I’ll have a flare up or asthma attack if I leave the house – especially if I’m on my own. I already struggled with social anxiety anyway, but I’ve noticed that as my conditions have become worse, so too has my anxiety. They can also trigger my depression, especially if I see people doing things that I want to do but know I can’t.
What lifestyle changes have you and people around you had to make to accommodate your condition(s)?
I have to be so careful what I eat and drink, not just when I’m out but also if I know I’m going out somewhere later. If I know I’m going to an event or university, I’ll not eat beforehand just in case it randomly triggers a flare up.
Plus I can actually have a flare up just from drinking water from a different place, so if me and Chris go away anywhere I have to make sure I have a large bottle of water with me; otherwise there’s a very good chance I’ll get ill. It’s a real pain as I have to plan trips and events days in advance, so spontaneous trips are almost impossible.
There have also been quite a few times where I’ve had to cancel plans or leave early because I’ve had a flare up. One time me and Chris had just arrived at the local shopping centre, only to have to turn right around and go back home because my IBS decided at that moment to take issue with something I’d ate hours ago.
Last But Not Least
Is there anything else about yourself or your condition(s) that you want people to know? (open question)
I suppose I’d just like to say to people; be mindful of the things you say or do! The amount of times I’ve had people blow cigarette smoke into my face as they’re walking past, which then triggers an asthma attack and leave me unable to breath for the rest of the day is ridiculous. Plus I’ve honestly had an old man come up to me and tell me I should exercise more because someone my age shouldn’t be out of breath from walking up a hill!
What are the main things you’ve learned through having your chronic condition(s)?
That mindset plays a big part in things. Getting angry and resentful doesn’t solve anything, if anything it makes things worse. Also pushing yourself to do something you know will set your condition off is the worst thing you can do. I’ve nearly ended up in hospital a few times because of school PE lessons – the teacher called me lazy and said I was just using it as an excuse, so I pushed myself to prove her wrong.
Sure I managed to run all the laps, but it left me really ill and I was off school for the rest of the week recovering. It really wasn’t worth it!
Do you have any advice for newly diagnosed people with your condition(s) or a long-term illness?
It will take some times to come to terms with the diagnosis, so allow yourself that time. Even though I’ve just said getting angry and resentful doesn’t solve anything, those are perfectly normal emotions to feel at first. Just don’t unpack and live in that mentality!
Take some time to research the condition and see if you can find a community/blog on that topic. Not only will that give you access to a lot of advice, but it can make it easier to come to terms with when you see you aren’t alone. Also make sure to put yourself and your health first. Take lots of self care time and don’t beat yourself up if you can’t do as much as you used to do.
Lastly, tell us something positive that keeps you going. A quote, a song, anything!
My Disney playlist on Spotify! It doesn’t matter how old I get, Disney songs always improve my mood.A massive thank you to Jade for taking the time to share her story with us today! You can find Jade on her blog here, her Instagram here and her Twitter here if you’d like to connect with or follow her elsewhere! The Chronic Confessions series is really teaching me a lot and opening my eyes to how conditions can be and I hope it is for you all, too! You can read the last instalment here and if you’d like to share your story, please get in contact with me at firstname.lastname@example.org!
’Til Next Time,