So this is something I’ve never touched on, on my blog but I want to. Like really want to. So I thought this would be a good place to start. This post was actually a request from someone on instagram after I did a Q&A on there. So thank you to that person for suggesting this. So you may or may not know this: but I actually have a chronic illness. Chronic in the sense that there is no cure for it, yet. Hopefully in my lifetime a cure will be found but for now I have my illness for life. My condition is IBS. I’m not gonna get into detail because I’m doing some posts on my illness in detail separately. Having a chronic illness has completely changed my life, basically overnight. And I know that, that is the same for many people out there. One day you’re well and the next you feel so so sick and unwell and you have an incurable disease. But I thought I would share with you all my top tips for dealing with and/or managing a chronic illness or invisible illness. Because these illnesses can be so hard to control and over the last 3 years, I cant believe I’ve been ill for 3 years now, I have learnt a few tips and tricks. Sometimes the hard way. 1. Do not blame yourself. You have to understand that your body is never going to be ‘right’ again, unless a cure is found. So do not ever feel bad if you can't do something or go out or if you end up being bed bound for a few days. It’s just the new reality that you have to live with. It takes time to get your head around but you can get there. You need to understand that this is out of your control, yes medicine can help but at the end of the day your body is gonna do it’s own thing whether you like it to not. This was really hard for me to understand at first, all I wanted was to control my IBS so I could make sure it wouldn’t ruin anything but I had to learn that I can’t. There will be things that a flare up will ruin and it nearly has done several time. It’s only due to my stubbornness that it hasn’t because I just wont let it. The sooner you relinquish the desire for control the better. So if you end up ill don’t beat yourself up or blame yourself for it. It’s nothing you have done. And you certainly do not deserve anything, so don’t say that because of previous actions you deserve to be ill. NO ONE deserves it. NO ONE. For example with me they said that my anxiety basically caused and triggered the IBS and all I wanted to do was blame myself and be like ‘ugh if only I wasn’t so fucking anxious maybe I wouldn't be sick for the rest of my life’. But you can’t do that. Yes it’s awful but you can live with it and still have a fabulous life with an illness. 2. Do your research. Talk to people and if necessary educate them about it. A lot of the illnesses that we have are relatively ‘new’ in the medical world. So a lot of people might be ignorant to you at first due to previous attitudes or a lack of understanding. So research your condition online if you can. Just read a few articles and get clued up on it. The more you know the better. This way if anyone decides to challenge you or if you unfortunately face some ignorance you can just turn around, whip out your knowledge and shut the haters and sceptics down. Educating myself was the best thing I did so now if ever I’m faced with a situation I can calmly and intellectually get myself out of it. I’ve had to do it with my own family at times which is heartbreaking but due to generational difference they just don’t get it, especially at first when I was first diagnosed. It’s better now but it does happen now and again. I wish it wasn’t this way and the first few times it happened it did upset me but now I’m just prepared to answer any questions that people have about it. 3. Plan in advance and make sure there are contingencies in place if you need them. Eg you are able to get home easily if you become ill, you have enough money to get home, there are toilets at the place you are going in case you suddenly need it. And another thing: plan enough time to get to where you’re going if you go out. This may be similar for some of you but I know the if I end up rushing somewhere I get anxious and stressed and then that can set off a flare up. So plan out your schedule and plan everything you can to avoid rushing. Because stress can be a massive trigger for so many of these illness’ 4. Put medication in every single bag that you use frequently. That way you can never be caught short with it and you’ll always have some on you. I’ve been caught out too many times and had to go and buy another box of Buscopan so now I keep a strip of my new meds and Buscopan in the 3 bags I use the most, just in case. 5. Balance is crucial. And it’s so fucking hard to find. But once you do you will be fine. Instead of a work / life balance that everyone wants. You need to find a Active / Rest balance instead. You cant miss out on everything and I get that completely but at the same time if you do too much or try to do too much you can or will make yourself feel even worse when you get wiped out from under your feet. One day extra that you probably shouldn’t do could wipe you out for a week so try and be careful and try to attain a balance if you can. Sometimes a day of doing nothing but watching movies, Netflix and television with a doggo next to you and a nice cuppa could make all the difference and prevent a flare up in the near future. Basically take frequent self care days and rest days to set yourself up for exciting days. 6. When you have doctors and/or hospital appointments make sure someone goes with you to them. The sad reality in the modern day health system is that people with chronic illness’ are not listened to and these medical professionals that are supposed to help us think we are making it all up and faking it. There are many reasons for it some being: generational difference and the fact that we don't 'look ill'. I’ve experienced this first hand and oh my word it’s heartbreaking and I kid you not I was crying for hours after a doctors appointment. It shouldn’t be this way. So my advice to hopefully avoid this happening to any of you is get a family member that knows about your condition and sees first hand what you go through or a close friend in the same position, get them to go with you to your appointments. This way it is 2 against 1 and if someone can back up what you say they have to believe you. 6a. So for me now I know that I’m gonna take my mom with me if ever I have an appointment at the doctors or if she can’t come with me my friend from work said she will come with me, especially for blood tests because they really can knock you sideways and when I went for my last one alone she went mad at me and insists on coming with me next time so i’m not alone, because I have had flare ups at work so she’s seen it first hand. So leading on from this, make sure you have a good support system of people that understand your illness and support you and are there for you no matter what. Those people are crucial because you never know when you might need their help. So talk about it, talk about how you’re feeling and please don’t keep it all in and isolate yourself. These illnesses can be so debilitating and you can feel so alone especially if you feel like you’re missing out on things. Too many people suffer alone and that's why so many people who are chronically ill also have mental health issues and suffer with anxiety and depression which is heartbreaking. My fave motto is this: a problem shared is a problem halved. So if you’re struggling reach out, if you feel like you really have no one then you can reach out to me, i’ll always listen if anyone needs it. Seriously. And there we have it. Those are my top tips for managing a chronic illness and/or invisible illness. I tried to keep it more general rather than specific to IBS because there are so many different illnesses out there nowadays and each one deserves to be listened to and heard. I am planning a more specific post just for IBS, that will be coming in the future. I really hope this helps someone out there. If you have recently been diagnosed with a chronic illness and have no idea what to do or where to start then hopefully this will give you a starting point. If this got a bit deep or emotional then I apologise but I am really passionate about this and I wanna use my experiences to help people where I can. But for now I’ll say bye and I’ll see you all soon for another post. Love Jade xxx
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