Sunday 14 June 2015

What living with an invisible/chronic illness is really like

Movies like my sisters keeper, the fault in the stars  all have a begging a middle and an end maybe not a happy ending but an end were you close the book or turn off the movie and if your like me in floods of tears but you feel satisfied that there's an ending , but my health hasn't had a happy ending . And that's what having a chronic illness is like there's not a happy ending the ablations on my heart have never worked .. And the average person doesn't know what having a chronic illness is like, what it's really like to be sick, to be in a constant battle with what you physically want to do but your physically unable to no matter how hard you try you can't feel better because you can't escape your own body so I thought I would share that with you because being sick isn't glamorous like the movies make out , I mean what's glamorous about being in hospital gowns covered in constant bruises because of all the needles or how even combing your hair is a mission so half the time you don't comb it unless it's to try and feel better or of course take a selfie.

Having the flu for example or the cold you feel awful but after a few days you start to feel better but having a chronic invisible illness isn't like that they few days turn to weeks which turn to months and for me even years, it doesn't go away yes you have good days which are very few and far between and you treasure they good days and appreciate them but the symptoms you feel never go away.

The fatigue and tiredness you experience everyday you can't just go to bed and sleep at night and wake up feel refreshed, I can't even remember what feeling refreshed feels like.Its a daily struggle but you just have to get on with it, your body and mind simply go into auto pilot and you just have to find a way to cope with it you can't just sleep it off.

 I can take tablets everyday just to stop me fainting, feeling dizzy and to stop my heart from racing but even taking tablets it doesn't go away or cure it, it manages the symptoms, but even taking the tablets they don't stop the fatigue and tiredness in fact the tablets make the tiredness worse because you have no choice because feeling exhausted is far better than fainting and being physically unable to get up in the morning, and there's more awful side effects with the tablets like the vision problems you experience where bright flashing lights flicker in your eyes or when they slow your heart down to much the chest pain breathlessness but again you just get used to it because you have to.

All the appointments and check ups you have to go to, the hospital and doctors becomes your second home, were every doctor at the surgery knows you, when you phone up or go to the reception desk they greet you and know your name without you even opening your mouth, and you know your there so much when they start to ask about your husband etc, even going to accident and emergency they recognise you because your there so much, part of you feels embarrassed when you can spot and point out your huge folder of notes that is bursting at the rim because of all your admissions.

Being scared of needles or been frightened of tests just doesn't exist because your so used to it its like having a cup of tea you just drink it and having a chronic illness your just used to it, the pain of the needle you barely notice it now because its like you  become immune to the pain you know you don't have a choice and its just got to be done, you feel no emotion to any of it but having a chronic illness its not as simple like others,just putting in the needle and taking some blood, because your veins just don't exist anymore yeah you have them but they are thin and frail from all the times they have took blood and if they even attempt they just collapse, so it becomes a task and you get used to millions of doctors trying and failing and it takes ten times longer and in the end give up or if its a must and you do need fluids or drugs,they have to find an ultra sound machine so they can scan you all over just to hunt and find a decent vein.

Things people say to you can be upsetting and frustrating and can even make you angry because they just don't get it its like they try to be helpful but there words can be hurtful and I wanted to share some of things people have said to me and if your reading this and don't suffer a chronic condition you might just think about what your saying and how it can affect people.

When someone says give me a phone or let's meet up when you feel better 

Chronic means chronic it's persistent its long term, it's not like a cold or the flu it doesn't just go away it's long lasting. So please just don't say it yes I will try to meet but when I do meet I am still sick I am either having a good day or I am feeling complete pants but am just trying to get on with it .

Your to young to be sick 

  I didn't ask to be sick nor did I want to be sick, what age is it acceptable to become sick ? If I reach                                                              60 does that make it ok ?

You don't look sick 

What does sick look like ? You don't say to someone going through a divorce ohh you like like a divorce because it doesn't look like what's happening to you .. If my chest thudded and vibrated and I looked tachycardia  or looked like high blood pressure would you stop saying it ?

just get on with it

Most days I am doing exactly that I am just getting on with it despite the way I feel getting on with symptoms if I didn't I wouldn't even get up in the morning I wouldn't eat shower or be a mum there's a difference between getting on with it slapping a smile on doing normal things than when your generally having a very bad day that your physically unable to do those things but you don't want to be sick so when you are in bed or  cancelling things its not because you don't want to do those things its because you can't ... and it does hurt to cancel plans or nice things and you spend your day lying in bed feeling awful but also feeling miserable because you did want to do those things.

It must be nice getting lots of time off from work 

Yeah its nice to have a holiday but its a totally different story when your physically unable to work even though you want to and is a totally different story , I mean who wants to stop getting paid because there off so much believe me its not nice been off work and spending days been stuck in bed or hospital just trying to distract yourself from the way your feeling, having to explain why your constantly off sick and why your not getting better, I would trade my illness with anyone who wants that lifestyle of feeling awful and been stuck in bed all day.

what if you exercised more ?

yeah if you exercise and are fit and healthy that helps lower your heart, but having ist nothing lowers your heart, yes doctors tell you to exercise and do what you can but having a normal resting heart rate over 100bpm sometimes your just not able to, and even when you exercise which for me is something simple like walking you have to watch your heart doesn't speed up to much or that just makes you even more sick and could result in fainting which just knocks you further away from good health and were you want to be.

 Its in your head/anxiety 

If I had a pound for everytime I heard this before I got diagnosed with ist my purse would be heavy and I would be a rich, its like when you physically look healthy its just assumed its mental yes anxiety and stress can make ist worse but who doesn't get frightened or scared of passing out alone but you do have a physical illness and ist before it became a known condition patients going to the doctors with fast heart rates and fainting were told 'its in your head' but research showed people with sinus node modifications didn't have fast heart rates anymore so before you say this to someone with a condition just stop and think its not helping and if anything causes you to feel more fed up, stressed and miserable.

I know someone with the same condition and they manage

Everyone reacts different to an illness, like how everyone reacts different with a cold, just because someone manages more than others I managed my whole life having a fast heart rate but it didn't bother me and led a normal life until 3 years ago this really doesn't help or make you feel better so just please don't say it its like people try to encourage you but it doesn't you can't help it, some people with ist can't even shower without fainting were as others can run etc and manage.

So as the saying goes stick and stones may break my bones names will never harm me... words do hurt its amazing how simple little things can make all the difference so I thought I would share these with you to a simple act of kindness does really go a long way.

Can I come over ?

sometimes leaving the house is to much so someone saying can they come over makes all the difference its nice to get company but doesn't use up your energy or spoons it shows they want to spend time with you but understand you cant go out.

Sending a message

Its always nice to know that someone is thinking about you, if you have been off work for a while and generally haven't had any company I mean out of sight out of mind?   it just makes your day when you know people are there for you and thinking about you.

I understand

Saying this to someone stops them from feeling guilty or a burden if they have cancelled plans, I mean I always feel awful about cancelling and I always leave it last minute as I always hope I feel better letting them know your not mad just helps the guilt and makes them feel better and makes you more likely to make plans again because you wont be afraid of losing them as a friend


Sometimes you don't even have to do anything just a hug goes a long way and it really helps knowing someone is supporting you and listening when I was getting induced with my little boy and it kept failing meeting up with my community midwife and her just hugging me as I walked into the room lifted a huge weight from my shoulders and it did really made all the difference, even an extra cup of tea from the midwife's at the hospital just made me feel that whole lot more positive about things.

I believe you

This is the most wonderful and powerful thing you can say to someone with a chronic condition seeing is believing when you look healthy its like people doubt you having someone believe you is the best feeling in the world and gains trust and shows a true friendship and is the best thing you can say to someone with a chronic condition.

 I hope everything I explained in this blog post helps people understand what having a chronic condition is like my next ablation is on Tuesday and as I have explained before this might not cure me but will ease my symptoms and help me with everyday life at the moment I just feel in a constant battle with things I want to do but physically am unable to do and above all I just want to be a mummy to Kian and live life to the full even with a chronic illness these simple things make all the difference, we are just back from sunny palma nova were I enjoyed the sun sea and spending time with my boys it was so nice to get away and be a family and to actually feel good.

Kian has now reached 29 weeks and is nearly 7 months and at this age things are getting easier its so rewarding now he communicates in his own little way by always smiling at my voice turning round to look for me when I speak and on Tuesday its going to leave a huge empty space in my heart been at the hospital without him, he's the whole reason I want to recover quick as I am frightened of missing things, I would hate for someone else to hear his first words or see him sit up I just want that person to be me.

29 weeks today sits up on his own but still falls over if he reaches for things is now sleeping in his own room rolling about more but prefers to stand or bum shuffle if u shout his name he turns to look at you a lazy eater and will just swallow things in one go 🙈 now naps more during the day and doesn't fight his sleep also likes to lie on his side to go to sleep always so happy and smiling

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