Published on 12 October 2020 at 17:08

I am usually pretty silent about my Chronic Illnesses/Disabilities, I very rarely go 'too deep' in to them. Until now!, I decided it would be a good idea to blog my life for a day and expose myself for your pleasure!.

So, if you have been living in a bubble or haven't realised Chronic Illness and Disabilities can be INVISIBLE. Both of mine are, I have IIH (Idiopathic Intracranial Hypertension) and Crohns Disease - If you don't know what either of these are please google because that's not what this blog is about.

Anyway, going about my daily business I am going to give you the biggest insight you have ever had into the life of Jade (GoodLifeZen) - get ready to read about how the rich and powerful live! Ha! gotcha, I wish, more like fatgiue, medication and pain!!!

Mornings are the absolute bane of my life!. Every morning is the same, I lay there for about 10 minutes let all these emotions run through me, knowing that sitting up is going to hurt and I am going to feel like absolute sh*t. Ring a bell? I never thought I would be scared to 'SIT UP'! this is exactly how every morning goes without fail.

Don't really think you need to know the details of the toilet trip and blar blar blar

A cup of tea is a must in a morning - my body takes quite a while to function nowadays, and with everything so painful in a morning I pretty much move like a Turtle! so caffeine is a must.

Ahhh now time for MEDICATION!! I used to do all my medications weekly on a Sunday, but now I just do them daily as there are some tablets that are as and when depending on how I am feeling at that time. We all know how the medication department goes - we end up taking copious amounts of tablets (in my case 21 tablets) wait for them to kick in, yes some of the pain is better, and were feeling a bit HIGH and feel like we can take on Boris Johnson, kick COVID up the arse and make the planet a free world! 2 hours later we are back to square one again PAIN! FATIGUE! TURTLE PACE! MUSCLE/JOINT PAIN! HEAD PAIN! MENTALLY EXHAUSTED! PSYICALLY EXHAUSTED! GOING BLIND! HEAD SEIZURES!.. Oh did I not mention we are at 10am-11am - still the rest of the day yet!!. But, you get the idea! 21 tablets and jackcrap to show for it, huh call yourself a painkiller!.

Anyway, enough about crappy painkillers and medication (Doctors just like to look like there doing a good job). Somedays depending on how I feel physically and mentally Pyjamas will either stay on for the day or I will find that slight bit of extra energy to get dressed into more slobs!. Honestly, the only time I ever really 'Dress Up' is when me and Karen are going out for a meal or if we are going out for the day!, because the only places I visit are family members homes there just isn't any point, and to be honest I'm ok with that!.

Ok, don't  judge here people I have a small amount of friends!, I don't make plans because I never know how I am from day to day (I think we can all relate to this on) so, I either go see my grandparent, or my mum or I stay at home and wollow in self pitty! no not really but, I will stay home and either read, watch a film, blog away and ramble on about crap, I spend way to much time on Instagram and Youtube, and I also like to read. If you also have not realised or don't follow me already on Instagram (ANGRY FACE) my favourite time of the year is Autumn, so I love cosy days and nights (HUGE obsession with candles) funny story my partner actually put me on a candle buying ban! Rude I know. As you can tell, I have a long list of options to choose from everyday on what it is I decide to do on that day, and if that isn't enough just to be depressing I have these options for at least another 70 years! Give or take.

Usually by mid afternoon I am absolutely zapped of energy BUT, the last couple of months I haven't had naps in the afternoon this is because I found no matter how long I was napping and however many naps I was having it was making not the slightest of difference, so I decided I would just push through it and stop the naps. Don't get me wrong it's not nice and makes your feel like death, but having a nap made me feel like death - that's just FATIGUE for you! there is just no win.

Teatimes are hit and miss, because at the moment I am going through (testing) stages for my stomach my appetite has pretty much packed his baggage and hit the road! so either I eat a full plate, half a plate and next to nothing, simple as that. I really am such a delight to live with sometimes!. When I do eat, WELL... stomach ache, stupid amount of time on the toilet, sickness, sweating, pain all fun and games!, don't even get me started on how many times I have counted to tiles in our bathroom.

Favourite time of the day, a nice relaxing BUBBLE BATH! love love love. A time where I get lost in a good book, switch of from the world, where my muscles/joints are less painful and I am in my absolute element. Just like a little kid really! A bath is like a cup of tea, it makes everything better.

By this point it's usually around 8pm and I am ready for bed, I know I am 26 but, 8 o'clock and I am done and in bed!. It takes about an hour for me and Karen to find something to watch (bare in mind we have sky, Netflix and Prime) we go through the same 'FLICK FLICK FLICK' every night! this takes me to 9pm and it's lights out.

Did I say my life was exciting? sorry for getting your hopes up? - the idea behind this is, yes I have the pleasure of staying home all day long, yes I also have the pleasure of being 'LAZY' and staying in bed all day long! But do I?

I live with pain everyday all day, I get up early to take my medication (no lay in), Unless my Joints and Muscles are really playing me up or my pressure has risen (IIH) I won't stay in bed all day and do people really think we with Chronic Illnesses and Disabilities like being at home everyday all day!, I was told to leave my job so was a huge change! I get pricked with needles on a regular basis for test after test, I have hospital appointment after hospital appointment and the most challenging of all is you never know when a relaps is coming!.


I hope you are all keeping safe, and I really hope you have all enjoyed reading as much as I have enjoyed writing this.

Much Love

Jade (GoodLifeZen)




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4 months ago

Hi. I have CMT and a string of medical issues that never seem to stop. IBS, migraine, vertigo teeth issues. I get so down about these issues. I get exhausted. I want to push on. I do, but it’s hard.