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30 Lessons about life with a chronic illness… [CC]

December 10, 2019


Hello lovely people! Since I have now been on this planet for 30
years, and lived with a debilitating chronic illness for most of them, -actually, probably all of them, – I thought I should tell you the 30 key life
lessons I have learnt in my journey. Like every piece of advice on my channel,
I don’t think that these all necessarily apply purely to people with chronic illnesses. I hope you can take at least one thing from this list no matter what you’re going through
or the adversity you have overcome. Let me know in the comments below which you most
relate to most and any you think I’ve missed. 30. The internet can save you. Hello internet. My connection to the world outside my house… is just the internet! I am so thankful for you. If I lived 100 years
ago I would just have to spend my days writing copious letters to random addresses I had
found in the directory. And they would not subscribe to my letters, leave comments, click the ‘like’ button OR share it with their friends… so… just saying. [ding] 29. The internet can also destroy you. So many weird medical articles that can only make you feel worse! Don’t do that! Once you have your diagnosis, don’t spend the next decade googling it at random intervals, especially if you have memory problems or else you’ll just be reminding yourself that
it’s progressive and you’re eventually going downhill… good times(!) Also, you can
pretty much convince yourself you have anything because most symptoms overlap! 28. You will become an excellent liar and
faker. “Me? I’m fiiine… oh this? It’s just
my leg falling off. Don’t worry about the bleeding… let’s order some coffees!” Or not… a good faker I didn’t claim you become a good actor 27. There is no such thing as a schedule. You will be late, you will cancel last minute, you will feel awful some evenings, you will
feel amazing some evenings, you will sleep in, or you will get up five hours too early
and not be able to get to sleep again. – Varied(!) Keeping life chronically interesting! [news roundup] 26. You’ll find out who your real friend are. Generally the ones who don’t mind you cancelling
last minute and being late to everything. 25. It is the most expensive thing that will
ever happen to you! Oh, you thought children were expensive? At least they leave! Or you can disown them! Having a chronically ill body is like someone
dumping screaming baby triplets on you that never age and you didn’t even get to have
the fun sex part for in the first place! Having said that… 24. You can enjoy life with a chronic illness! Shocker (!) I know (!) It might not seem like it when you first get diagnosed and there are definitely days after that when you don’t have a great time. But, much like healthy
people, your ability to find the fun is based on your personality and resilience – bar any separate mental health conditions
but we’ll get on to that… A chronic illness diagnosis is not the end
of the world. You can still have fun! 23. People will annoyingly think you have
the dream lifestyle. “I would love to stay home in bed all day” “Oh my God, Susan, shut your face!” 22. If someone says “you don’t look sick”,
you will want to punch them. Even if you’re a pacifist. Sometimes when
people say “wow, you look really bad” I almost cry with relief! Thank you, thank
you, thank you for seeing me on the inside! I will be offended if you don’t mention
how nice my hair is today though… 21. Mindfulness does not reduce pain. Jog on. 20. Do not compare yourself to anyone. Ever. Even other ill people. We all have different experiences and presentations
of symptoms. We all start from a different place We all encounter different obstacles. You’ve got this, you’re doing great, you’re still moving forwards, don’t look to those
on the paths beside yours or you’ll lose your way. 19. Other people WILL compare you. Sometimes to yourself. “You could do that yesterday.” “Well I can’t today, Brian! Deal with it!” More often to other people with the same or
similar conditions who are either doing a lot better or a lot worse. There is a high
level of guilt embedded in this but no one knows why and it’s not always intentional. 18. Plants and flowers will save your sanity. Bring the outdoors indoors, get a little feel for what you’re missing and you won’t
be missing it too much. It’s also great to have a hobby… like flower arranging. 17. Have hobbies. REASONABLE hobbies. When considering a new hobby, don’t just think of the energy it takes to do the thing itself but also the set up and clean down time. Start small and expand from there. 16. Resting is a lie. Resting beforehand may increase the odds that you’ll be less sick than usual on the day
of an event… but it’s no guarantee! The misconception can lead to friendship-threatening
misunderstandings if you’re too tired to make an event and the host feels it’s because
you didn’t rest enough beforehand. Naps are also a lie- I always wake up from a nap
feeling worse! 15. Taking care of your mental health is vital!
Setting aside any unrelated mental health issues you may have, physical and health problems
can have a huge impact on your mental wellbeing. Conversely, poor mental health can then impact
on your physical state. Even able-bodied people feel the physical impact of stress: your heart
races, your shoulders tense, you get a headache. In a body that’s already under pressure,
those same responses can be very harmful! Keeping mental stress to a minimum is vital
when you’re chronically ill and sharing your feelings is a big part of that. I’d
encourage you to keep a diary, talk to friends, even just vent your feelings though a good
chat with your dog. [beat] I’m not kidding, Walter is a great listener. If, however, you feel you might need a professional
to share their expertise or just to talk to, I would definitely advise you to consider
counseling. I’ve talked about the online counseling
service BetterHelp before and I honestly would recommend them so I’ve asked them to partner
with me on this video. I remember trying to go to therapy when I
first got really ill, to help me deal with the stages of grieving you invariably go through
when you’re first diagnosed, and it… just… was NOT practical. I was so ill that getting
from my bed to the bathroom, which was less than five meters away, was a big deal. Getting
dressed, getting downstairs and then having to sit upright in the car for half an hour
to get there was just too much and often I’d be unconscious by the time we got there or
I’d sit on the steps beside our front door and just cry because I was so exhausted. I wish I had been able to use the internet
to access such a great resource! With BetterHelp all you have to do is fill
in a short questionnaire to be matched with one of their 3,000 licensed therapists. Then
you can message your councillor whenever you want through their website or mobile app!
If writing isn’t your thing they also offer telephone or video chatting and cover a wide
range of languages- including American Sign Language! You pay monthly and it covers all
of your messages, chat, phone and video sessions. I know there were some misconceptions about
BetterHelp flying around the internet last year but they’ve given me some really clear
answers to the questions I had and I’ll copy/paste them into the description for you. Whatever route you take, even if it’s just
talking to your cat, internalising isn’t good for your mental health- let those feelings
flow…! 14. You have sooo much time on your hands…
Oh, the hours and hours and hours you spend in bed… 13. You also have no time.
Because those long hours aren’t healthy hours, you can’t actually do anything with
them. My mother once told me: “Your father is
very disappointed that you haven’t spent all this time in bed reading more classic
books” and I honestly have never been so devastated. 12. Being constantly ill can be painfully
monotonous After ‘giddy’ and ‘enthused’ my third
most common feeling is ‘I’m ready for something new! Can we be done with this illness
thing now? It’s very boring’ Generally my day-to-day symptoms are just…
day-to-day… they don’t really change. I’m ill. I’m in pain. I’m tired. At this point it’s kind of exciting when
I have an injury- just because it’s different! *11. You’ll get cabin fever: originally
meaning you get stuck in a log cabin for an incredibly long winter. Chronic illness meaning:
“oh my god, I hate this house, get me out of here!!!!!!!!!!”
I recommend window shopping for new houses online. Saves me from chewing my own arm off. 10. You need to surround yourself with only
positive thoughts and comments. Sometimes people in my life like to give me
a ‘dose of reality’ when they think I’m being too optimistic. To which I ask: – are you a sociopath? Why do that? Do you
think you’re bringing something new to my life? Having a chronic illness means you’re starting
at a negative; being positive and happy can only be a good thing. I’m not stupid, – I’m cognitively impaired! [joke noise] Ahem. I’m not stupid, I know that it is
more likely things will not go in my favour but don’t you think that positivity is keeping
me going? If you take my happy future away, why do you
expect me to keep going…? [long stare] Well that got dark! *9. You will care so much less about the little
things. It’s actually quite freeing. “Oh that
shelf is slightly dirty? Whatevs, I’ve seen the light and come back!” 8. You will care so much about tiny things.
– What? It’s a life of contradictions. If my episode of Poirot starts five minutes
later than normal today I will flip out! Do they not realise this is literally my entire
life?! It’s the highlight of my day! Actually, now it’s my wife coming home from
work, but I still freak out if that’s later than normal. 7. Other people diagnose you randomly!
Strangely enough, I am more inclined to trust the doctor who has studied the human body
for 30 years than a distant cousin of my friend’s mother’s next-door-neighbour’s best friend.
I’ve probably had every test known to man at this point and I’ve definitely not got
whatever freaky metallic frog virus you just mentioned! *6. Other people will also try to fix you
randomly! “Auntie May took essential oils and it grew
her whole leg back!” “Not the same thing, Janet!” 5. Doctor’s appointments take ALL. DAY.
“How long should I expect my appointment to be?” “15 minutes to four hours”,
“How long should I expect the wait to be?” “Twenty minutes to 10 hours”, “How much
energy should I expect to use?” “ALL OF IT” *4. You’ll get very good at faking you care
“Oh you stubbed your toe? Please take twenty minutes to tell me about it while I hold my
side, smile, nod and try to pop my rib back in!” – yeah, they dislocate. It’s a thing Leading on from that… 3. You spend a lot of time managing other
people’s emotions Whenever you tell someone close to you about
being ill or your diagnosis they will feel a range of emotions. Sometimes they will look
to you to comfort them about these emotions. Occasionally it takes more energy to look
after how those people feel about you being ill than it does to actually be ill. Eventually
you just stop telling people about your illness. 2. Body positivity means being positive about
the body you are in right now. Ignore negative things other people say or stop them saying
it. “You’re too thin” or “you’re too fat” are not comments that have anything
to do with your actual health- that is a person’s guttural reaction to visual stimulus. You
are not too anything, you are today’s you! And you are allowed to love the you of today
even if you want tomorrow’s you to be different. 1. Kindness is the most important lesson.
Forgive yourself. I’m not talking about other people here,
we’re done with managing their emotions. I want you to know that being kind to yourself
and forgiving to your body is the best possible thing you can take away from this video, this
channel… me. Having a body that doesn’t work the ‘normal’
way can feel like a fight- like you’re constantly battling on to NOT be ill, to NOT ‘give
in’ to your diagnosis, or if you have to then you’re going to be one of those amazing
paralympians because they’re the ‘good ones’! Sometimes surrendering and giving in is the
bravest thing you can do. Admitting your limitations and finding a way
to work within them is powerful. Being kind to yourself is a subversive act when your
very existence is a round peg trying to fit in a square hole. If you’ve just been diagnosed with a chronic
illness: you will grieve but you still have great potential. Not everything has to turn out as perfectly
as you imagined it. And not everything has to go down in flames. There is a world that
lives in the middle of all of that. And I’m here to welcome you! Subscribe if you haven’t already and I’ll
see you in my next video! [kiss]

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