Articles, Blog

5 TOP TIPS for coping with CHRONIC ILLNESS

December 19, 2019


hi my name is Rachel tape and welcome to my youtube channel What a Pain. Today I’m going to be talking to you about my
5 top tips for living with chronic illness the first thing I want to talk
to you about today is learning to say no this is something that I’ve really
struggled with when I was first diagnosed and I still struggle with now
before I got ill I used to love going out and doing things I used to love
making plans and being spontaneous after I got ill that changed I had to learn to
live with symptoms like chronic pain and chronic fatigue when you’re dealing with
symptoms like chronic pain and chronic fatigue you can no longer be spontaneous
and you have to start planning everything you do and sometimes that
means saying no changing plans or canceling them last-minute it can be
incredibly difficult to say no to the people who are closest to us I used to
wrestle with feelings of guilt all the time I’ve really struggled to say no
even when I had to and I used to feel terrible about it something that I’ve
learned is that true friends and family will understand when you have to say no
or change plans last minute though make allowances for the fact that you can’t
be here once where and that things are different because of your chronic
illness if somebody in your life doesn’t understand that sometimes you have to
say no in order to safeguard your own health then have a conversation with
them try being honest sometimes just explaining our symptoms actually gives
that person a little bit more awareness and helps them to understand why we have
to say no sometimes and we can’t always do as much as we used to if somebody
doesn’t understand that you have to say no sometimes even after you’ve explained
that to them then actually it’s their problem and not yours so let go of that
guilt and give yourself permission to say no it’s important and it protects
your health the next thing I talk to you about is the importance of rest days and
this ties in quite well probably with the saying no thing this weekend I’ve had a fantastic
weekend and it’s been absolutely jam-packed we’ve had a 21st birthday and
a 10th birthday within the family I got to spend loads of time with people that
I’ve really loved and I had a brilliant time but I did know that after it I
would need to plan in some rest days so I did it’s really important to remember
that when you’re making plans plan in time to rest as well I used to make the
mistake of trying to do too much and crumb in all the same things that I used
to do before I got ill I’ve since realized I can’t do that anymore
but it took quite a few bad flare-ups before I was willing to admit that I
needed to plan in my rest time you don’t need to feel guilty about planning and
rest days you’re not lazy it’s something you need to do chronic fatigue is a very
difficult symptom and it’s really important to take that time to rest
don’t feel bad or not lazy you need that time to recuperate the
third thing I want to talk to you about is learn to accept help this is something else
I’m actually really terrible at and it’s something that I’ve had to learn to get
a little bit better at especially recently I’m really lucky to have lots
of resupport of people in my life he offered me practical help like cleaning
washing doing the ironing change in the beds or doing some shopping
I’ve really struggled to accept help and very house-proud and I was before I got
ill since I got diagnosed with rheumatoid arthritis I have struggled to
keep my house perhaps as nice as I’d like it to be all of the time it’s
something that I feel really embarrassed of and often when people offer me help
I told want them to see that actually if I’ve had a flare-up or a bad day or
whatever my kitchens chaos or my bedrooms tails or whatever it might be I
don’t want them to see that I feel ashamed and therefore I declined their
help which is silly because they obviously know that it’s difficult for
me to do certain things or keep on top of certain things at times because of
the symptoms of my chronic illness and their genuine office of help and
actually real friends and family job early care what your house is like or
whether when they rock up you’re in your pajamas or whatever I recently was
forced to accept help and it did in the world of good
when I landed in hospital after a particularly bad flare-up last month I
wasn’t there to say no to help my wonderful husband accepted help and I
guess in doing so helped me get over that initial hurdle of perhaps feeling
shame because I couldn’t do something myself so now I’ve started to try and
say yes when people offer to help me and my biggest tip with this would be if
someone offers a particular type of help and it’s not something that you’ve won
or you’re ready to accept then say hey thanks so much rough-in that that’s
something that i don’t need help with right now but what I could really use
some help with is this pile of iron in or picking the kids up or whatever it
might be don’t just say no the people who are
closest to you or genuinely trying to hell
when you love somebody with a chronic illness you can end up feeling really
helpless because you can’t fix what they’re going through you can’t make
them better and I know from speaking to my husband Dutson and he struggles with
massively some people offer practical help it’s their way of trying to do
something because they care about you and they want to do whatever they can to
help make your life a little bit easier the next thing I want to talk to you
about is this whole thing of pretending everything’s okay I’m really bad for
doing this as well and it’s something that I’ve certainly got better at since
my diagnosis but still needs a lot of work this tips really important because
it’s so important that you allow yourself to feel things don’t just bury
them all down and pretend everything’s okay it’s okay to feel grief it’s okay
to be sad it’s okay to be angry it’s okay to look back and think I wish I
could still do those things that I used to do before I got sick or I wish that
my life was like it used to be before my diagnosis it’s okay to grieve for the
health that you’ve lost and actually it’s really important that you do go
through that process and feel that process it’s not something that has a
time limit it’s been three years since my official diagnosis for three and a
half and it’s been nearly five years since my symptoms started I still have
days where I grieve for the life that I used to have before I got ill
particularly some changes that have happened in recent years which I’ll be
talking about more in my blog and in these videos the biggest thing that I’ve
learned is that actually it’s okay to have those moments and just feel those
moments allow yourself to feel whatever it is you’re feeling and give yourself
permission to just sometimes take a moment and be mad be sad cry do whatever
you need to do to express whatever it is that’s going on for you tell someone
about it or write about it or whatever it is that helps you cope and
that brings me on to my last point the importance of positivity after you’ve had those moments way just
scream or cry or emod or grieving or whatever it is it’s so important that
you then find your positive and hold on to it give yourself permission to feel
whatever it is you’re feeling in that moment or on that day or in that week
but remember to go back to your positives you know
count your blessings might be a cliche but it’s so important and even on the
really bad days you can find something to be positive about on my worst days
when I’m in a lot of pain or having a flare-up or with some of the stuff that
I went through a couple years ago sometimes the biggest positive of my day
was that my husband made me an awesome cup of tea but not with something
positive and I held on to it on the better days I have so many things to be
thankful for I am incredibly fortunate so yeah my biggest tip is find your
positive and hold on to it whatever that may be
I’d love to hear in the comments down below what it is that keeps you going on
the bad days make sure you subscribe so you never miss a video and I look
forward to posting more videos soon

3 Comments

  • Reply Sarah Nott July 25, 2018 at 5:38 pm

    These videos are amazing rach. ? its about time people understand invisible disabilities and what they can cause and how much they can effect our worlds.

  • Reply Living With Limits July 26, 2018 at 6:10 pm

    Great video! I love your accent and your hair too, btw ๐Ÿ™‚ I agree with everything you've said and I'm glad you're sharing your experiences.

  • Reply Diana Sierra August 25, 2018 at 8:30 pm

    It really is a struggling going thru it and educating the people around you about this chronic illness. I love that you have the confidence to talk about it publicly. I am still super embarrassed about my autoimmune disease and going thru alot of grief.

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