A blog about dealing with IBD/Crohns disease/colitis. Also how to cope and overcome different experiences with the illnesses and mental health
Thursday, 26 April 2018
I am sorry I cannot be the friend you need me to be
This blog is not just for you but I needed to write it for myself too.
I know I am not the friend I once was due to things needing to have changed.
I know I have not been the greatest friend recently, I have been distant, I have been selfish and that is definitely not friendship.
To be truthful I suppose it has been easier to deal with all my health issues by myself. I know you have tried to understand, you have tried to be there but unfortunately I do not think anyone will truly understand it all.
I know you feel a mixture of thinks like disappointment, anger and feeling hurt when I let you down. I really wish I could say I would like to make it up to you but I am sorry that would be a promise I cannot commit too as I might let you down again.
There are days where I struggle to even get out of bed, holding any sort of conversation is draining and the simplest of tasks like going to the toilet exhaust me.
I am not ignoring you, I just cannot deal with life on those days.
My illnesses are preventing me from being a better friend to you, I do not resent that, it is the cards that I have been dealt with for my life.
I hope one day we are able to start where we left off, making new memories and experience life together.
For all those times I have had to cancel plans, for all those times I have had to let you down, for the times I have not supported you, the times I have been a bad friend…
Thank you for trying to understand…
I am sorry for not being there for you when you need me. I am sorry for everything including being a bad friend.
Tuesday, 24 April 2018
Am I a bad mummy?… Let me see, no I am not
Sometimes I wonder am I a bad mummy at times due
to all my different illnesses if it is not one flaring up it is another one
flaring up on me instead. Being a parent either mum or dad, single or a living
together can be tough no matter what but being a parent with a chronic illness
or illnesses makes it a bit harder. This last year has been tough on myself and
my daughter as it has been one thing after another for both of us.
Alisha just turned three in the middle of April
and I have been teaching her small things like mummy needs to go work to earn
pennies to get us yummy food or get us pets like Pumpkin and Squeak (we have 2
lovely guinea pigs cheeky just like Alisha but they are amazing with a trouble
maker scaring them). This one has taken a while as she still tells me she does
not want me to go to work every day I tell her I have to go to work.
I actually have realised in a space of a week my three year old daughter eats more than I do because of my Crohn’s being in mid flare and she has a very large range of words in her vocabulary so I do not want to miss her telling me important things like the other day we went for a walk she told me everything from the yellow sun, pink petals on ground, green tree and a blue sky. If I asked her dad who is not sick or anything just a very lazy person what she goes through with him he cannot even tell me as he is not interested in things like that. It would not care if the house is slightly messy or I am not feeling my best I still sit down and read a story with her, play games with her, take her to the park or for a walk. The little things are all that matters to her and the things that she will remember if I am not here for long. I also work full time, look after a house and a child (well 2 children if you include her dad as he cannot defend for himself but he has been forced to recently as I am fed up being treated like shit as I want out and I cannot do this any longer after doing it for five years I cannot do it with him no more).
The most important things for a child growing up
are love, clothes, food and a house to live in. Anything else at that age is an
added bonus as I do not know if any other kids are like mine but she would
rather play with boxes or books not toys. Don’t get me wrong she loves her
teddies and toys but she’s not always liked playing with toys even as a baby it
is only recently she has shown an interest in playing with material things
unless that is because her dad got her a tablet for her birthday as she always
was stealing mine then accidently broken it on me as it fell down the stairs
when I was stuck in the bathroom being very poorly one day. The way I am
raising my little girl is perfectly normal as I have had a health visitor
checking on us very few months to make sure we are doing well and that I do not
need any extra support from herself or other medical staff. When she last
visited us she did not remember I have been dealing with many different child
anxieties like hoovers, showers, hand dryers for a few years and she had told
me even with everything going on in my life from working and holding down a
full time job, dealing with a useless person who is the father of my child,
numerous anxieties with Alisha, looking after a house and garden mostly by myself,
looking after myself and numerous illnesses and having a toddler meltdown every
so often but every time I manage to overcome the majority of the meltdowns but
not all as I usually curl up in a ball and cry then she joins me but it ends up
as a distraction method then she’s forgotten her reason for her tantrum.
It has taken me three whole years to tell myself
I am an amazing mum after so many different people telling me I should not have
had a child as I cannot keep on top of the housework… or I am always too sick
to look after her… I am sorry I may not be able to do a lot of things with her
some days but for her age she is very smart and caring and understands to an
extent mummy cannot always do things with her as mummy is not well… Also I am
sorry but my house was spotless before my lovely caring daughter arrived but
you know what housework can wait a few extra days them precious moments of a child
growing up cannot wait as they are only tiny for a few years them few years fly
by a hell of a lot quicker than you think I know that one for a fact. Plus the
majority of the people that tell me about the housework do not have kids it can
be a nightmare at times as the most of the time I have the house clean Alisha
comes along and tips out all her toys all over the living room floor or she
pulls all her clothes out of the wardrobe to find one top or trousers or outfit
in particular. It does drive me mad especially if I am not feeling well but she
is a child, one day she will learn but she is slowly learning she needs to help
mummy tidy her mess up as she has to do it in school.
So we go back to my question I ask myself all the
time am I a bad mummy? No I am not I am a brilliant mum to have to deal with
all this on a daily basis and not have a meltdown myself. I am in a way showing
my precious daughter that her mummy was a strong woman and could manage
everything even if it was not done on time the most important things that
mattered the most were provided for as they were necessities the rest were not
it is just a matter of life and daily tasks. My daughter gets food yes check;
clothes yes check; and love and affection yes check and a roof over her head to
sleep at night yes check. There we go mummy is a good mummy and has never been
a bad mummy apart from when mummy is not hungry and does not eat then mummy
gets told off like a naughty child by a toddler as she is smart and knows you
need to eat to keep up your strength. It might have taken me a while to realise
that I am a good mummy to my lovely daughter but from day one when she was
born, I have been the best mummy to her that she could have as I always try my
best with everything. I give her what she needs on a daily basis and that is
the most important thing the rest to her at this age is an added bonus and you
know what no matter how I feel she loves me to pieces and that is my reward
even if sometimes the loving embraces we have she nearly kills me by tightening
her arms around my neck I still love her to pieces and she loves me back.
The reason why I wrote this was mainly because of
the judgemental comments I have had over the years regarding Alisha and me
being a bad mother to her, from my own family telling me she should be eating
her veggies blah, blah, blah, I am sorry but when she was not eating them she
was still eating her fruit. When I was growing up my twin sister was never
forced to eat her veggies at dinner as mum and dad both knew she hated them,
well so does Alisha, I offer them to her if she does not want to eat them so be
it they were there on her plate she eats what she wants off her plate. Other things
were she needs to go out to baby or toddler groups to interact with other
children, I cannot always drop everything as I have hospital appointments, work
and many other things to sort out so I cannot always drop everything on the
days that the groups she can go to there are times that other things are more
important than going baby or toddler groups. So if you are reading this and you
are suffering from different illnesses or not suffering from them take a step
back and look at the situation yourself and do not let anyone tell you
differently if you see yourself as a good parent then believe in yourself you
are a good parent build your confidence up in yourself and do not let anyone
knock you down.
Monday, 19 June 2017
I am sorry for being a bad friend
Since I have started being honest to
myself and the people close to me about my mental health, I have noticed a few
things change within relationships - these changes are mostly for the better.
Apart
from losing a few friends here and there along the way, there is definitely
more trust between us. We are able to talk about bigger things.
Things that are weighing us down. Now I have been opening up about
things the ones I love they are starting to open up to me too.
This
progress has made me think I have spent being more of a not the best friend in
the world when I was not opening up about certain things I was dealing with
(depression, anxiety, my image before I lost weight, panic attacks, my Crohn's
disease and pain which has finally been diagnosed as Fibromyalgia). I
should have realised you were also struggling too but I was too busy hiding my
issues from you.
I want to say sorry for not being there when you
needed me the most.
I am sorry for all the times I did
not reply back to you messages just because I sat there over thinking my
response and then ignored you completely.
I am sorry I ignored your calls maybe
because I was scared to reveal I might have still been sleeping until gone
lunchtime as I made the most of Alisha not sleeping at night and then sleeping
in till nearly lunchtime but I cannot use that excuse no more as she goes to
bed at night sleeps through and gets up between 6.30-8.30am.
I
am sorry I backed out of plans at the last minute or not going at all even if I
do get ready and then I have an anxiety attack and then I do not want to go
outside my house at all.
I
am sorry for lying and covering things up like pretending to have commitments
when I actually did not as I was too scared to leave the house or just was not
in the mood to see anyone.
I
am sorry for letting things get to me to the point you have to see me having a
mental breakdown. I really appreciate that you are there for me I am
thankful you stay by me and support me through everything.
Some other stuff I don’t feel proud of:
All the times I pushed you away because I did not
want you to notice that I was not being myself (especially recently as I am
scared what I am going through will end up scaring you away). The times I got
angry for no reason and decided the easiest option was to cut you out of my
life instead of letting you in.
The moments I was not 100% listening to our
conversations, when my attention wandered as you told me what’s been going on
with you because I was too busy thinking about what a rubbish person I have
been and obsessing over massive mess ups especially in our friendship.
The times I let myself drift because I did not feel
like I could keep up with the rest of you, going out, going to the gym, hanging
out together.
Ashamed that the simplest things suddenly felt
impossible especially getting up every morning. That my brain wasn’t a
safe place for me to be anymore, that I was scared of turned on light switches,
open doors, footsteps behind me and just wanting to run away from everything
and hiding as it seems to be the easiest option than to deal with the shit
going on in my head.
I am sorry for doubting that you would understand
me. I am sorry that my brain told me I could not trust you or rely on you, that
telling you would what was happening would be a mistake. Do not worry I
have done this with everyone not just family and friends.
That is the thing about depression, anxiety and
living with chronic illnesses – it becomes your biggest secret and your closest
friend, and pushes everyone and everything else away in the process.
Depression hides the person people know and love.
It makes you irritable, withdrawn, and suddenly uninterested in all the things
you used to get excited about. Anxiety is the same but you are scared of
letting anyone in to help or go out and enjoy yourself.
It tells you that you do not deserve friends and
loved ones (people like you one in a million and everyone would be crazy not to
have you in their lives), and makes you believe that if you were to tell anyone
your thoughts, they would recoil in horror especially the majority of thoughts
that goes around in my head on a daily basis.
That is why actually trying to open up and be
honest – which is a big part of being a good friend, if you did not know –
feels so bloody scary.
You are scared that they will reject you for the
way you are. That they will say something pushes you over the edge.
Trusting someone with your biggest and heaviest
secrets gives them power: to hurt you or help you get better. This is
what I am scared of the most as I have had people doing this before to me and
then using it to their advantage to manipulate things. I am scared of it
happening again with people I love and trust the most especially my closest of
friends.
To avoid that, I have pushed people away and I
still do it to this day. To be honest I have not done it as much recently
as I know I have a select few friends and I know they are sensitive like me and
I love them more than anyone in the world about from Alisha she will always be
my number one person (sorry) as she has been there to dry up all my tears when I
hide at home away from everyone on my bad days with my depression and anxiety.
Yes I know I need to stop letting her see that but at home I do not have
anyone asking questions into why I am angry, why I am sad etc. etc.
I became a good actress and a good liar of my
feelings. I said I was fine, that something had come up when you asked to spend
time together, I made sure to stick to ‘safe’ topics when we talked so I would
not let things slip. Now I have got to the point you all know that I am
acting or I am lying so I just lock everything up and lock it all away until I
am behind closed doors.
I was not a good friend because I was not being
myself. I was not letting people in. It has always been like that and I
need to stop it as it is pushing you all away again and now more than ever I
need my friends there to support me. It is time I stopped lying to
everyone and most of all myself about things.
And I an extremely sorry about that, because it
wrecked a lot of friendships, made me miss out on years of great talks with my
mum, my dad and the rest of my family who I love dearly who I kept them all at a distance
so they would not figure out what was going on in my head, and held me
back from making connections with new people.
I’m working on that now, I promise I am, I am just taking longer to do it.
I am learning that the people I care about care
about me, too even though I am still struggling doing this I just need you to
work alongside me and help me along this path. I know no one will hate me just
because I’m sad, or judge me for being scared – they just care that I am ok and
not acting on any of my dark thoughts that goes on in my mind.
I am slowly working on trusting people (it has
taken a lot of time to get where I am now as there was a point that I did not
trust anyone apart from myself). I am working on listening to the people I love
instead of the negative voice in my head that tells me everyone hates me and I
am generally shit at everything from being a bad parent, being a useless person
and most of all being the worst friend on this entire planet.
I know it is ok
to need a little help from the people in my life to get through a time that is
not all that great like the moment. It was the third father's day
yesterday without my dad. The last two I struggled to get through the day but
this year I somehow managed to have a breakdown the day afterwards due to
letting everything get to me and everything I mean everything and then not
letting anyone in at all to help then the slightest thing sets me off then I
get even worse then take it out on someone I love. I am sorry if I have
taken one of my attacks out on you. Please forgive me even if I
constantly do it, I just need you to be there to help me get through the
difficult times even if it means having to actually give me a slap around the
face or a kick up the arse every time it happens.
The people I want in my life are not the ones who
would ditch me when things get tough. They are the ones that are there to
listen when I need it, who know, now, that they can open up to me too, and they
are the ones that help me to stay sane every day – more than they know.
They are the ones I need the most to get through each day as it comes, to
put a smile on my face when I struggle to put even a fake one on in the morning
and to make me laugh at things again. It is you who I appreciate the most
even if I do not show it often enough that I do love you to the moon and
back.
I think I am now done with the all the apologies –
although I am sure there are more to come with further unanswered texts and
ditched plans – I want to say thank you.
Thank you to the people who have stuck with me when
I have not been the best friend in return. Thank you for being through thick
and thin. Thank you for listening. Thank you for caring. Thank you
for being there when I need you the most. Thank you I really do appreciate
it and that is the god's honest truth. I love you and I do hate hurting
you when I do not actually mean to and I am sorry for doing it I really do not
mean to hurt you. I know we will have to work through things together but I am scared of losing you or you using it against me in the future.
Sunday, 18 June 2017
What people with chronic illnesses wish family and friends knew
Living with any chronic illness whether it be arthritis or Crohn's
disease we all think nearly the same and wish our family and friends knew about
how we feel. YES, we have feelings too just like you do.
1. We feel grief over the life we were living as we might have
lost.
After a life event of being diagnosed with a serious or chronic illness
the "life stress scales" appears. It is considered a grief
producing event just like any other major life losses like a relationship break
down or a death. Before I was diagnosed with Crohn's disease in April
2013 and Fibromyalgia in May 2017, I had no idea that people who were diagnosed
with ongoing health struggles were grieving just like when a loved one passes
away. After my diagnosis with Crohn's disease I had grieved for the
majority of a month. I had thought it would be the end of the world but
it was not but there are things I cannot do like I used to unless I am in
complete remission. With any chronic illness we grieve over not being
able to be productive as we once were as we lack energy and I myself also have
less motivation. We also lose friends as they do not know how to support
us properly or they themselves are scared of losing us to these horrible
illnesses; the loss of ability to do our favourite activities, I loved to be
able to sit all day doing crafty stuff but now I cannot sit and latch hook a
rug or do a cross stitched masterpiece; and the loss of independence as some
people are living with debilitating stages of the illnesses and have to rely on
careers or helpers to do things for them.
Grief comes in waves and can arrive unexpectedly. One moment we
are accepting all the changes in our lives then the next minute we are full of
sadness. The grief can be triggered by a simple interaction. It can
be similar to loosing someone you love, for example I went home for a day to
collect my daughter from her Nana's and everything has changed at my old house
since dad passed away and I had a massive wave of grieve overcome me. I
had to work extremely hard not to breakdown into floods of tears as I found out
in my counselling session that I have not accepted my dad's or granny's passing
yet. YES I know it has been over 2years since my dad and 1year since my granny
passed away. To be honest I have not had a time to accept their deaths as
Alisha was born 9days after dad passed away, my Crohn's flared up a few weeks
after she was born and my liver became inflamed so I had to come off all my
medication until it settled. After it settled I was battling my anxiety
and depression as well as financial issues so I had to go back to work again.
Then the March the year after my Granny fell ill and just 8days before Alisha
turned one my granny passed away. Unlike my dad I was able to say my
goodbyes and see her body before the funeral even though I could not face going
to the funeral with Alisha and letting her see me in floods of tears.
The grieving process with my illnesses on the other hand I am scared of losing
things again as I know it will be as intense as losing my only brother at 6yrs
old, losing my dad before his first grandchild was born and losing my last
grandparent who I was really close to as we had seen her like every week or
every fortnight since I could remember until I moved away to Manchester.
As odd as it may sound I am scared of admitting I am scared of losing
friends again because I want to have normal friends that are there to support
me as well as not normal friends who understand what I am going through.
Yes people come and go but after losing all my really good friends from
school and university as we all went our separate ways after we finished I am
just scared of losing my normal friends if my illnesses prevent me from doing
what I love the most when I am having good days and that is spending time with
them and Alisha and making the most in life. After seeing the way dad was
after his first stroke at the age of 8 (to be precise on my 8th birthday) and
the way it affected him I am scared of being dependent on someone to look after
me and to help me. Yes my bad days Alisha helps with some of the housework like
tidying the living room up and putting the dirty washing in the washing machine
but I feel bad even though she loves doing it and she always gives me hugs
afterwards as she knows it is helping me out and I always thank her for it
afterwards but I have always been independent from an early age wanting to do
things myself and paying for things myself.
2. We can feel like
we are letting you down even though you repeatedly say we are not.
I have a couple of
really close friends who I do try to see at least once or twice a month. They
all say it is ok if I am not feeling well enough to meet up with them and
should cancel. When that time comes I feel really bad on cancelling our plans
as I feel like I am a failure even though they say it is ok and my health comes
first. Yes I believe them when they say it is ok and not to feel bad but it is
not that I feel bad for not being a good friend always having to take each day
as it comes because of my illnesses.
This feeling of
letting loved ones down often results in constant apologising for being in
agony or being poorly even if it is not necessary to do so. I quite
frequently apologise to my friends, family and even my little girl for not
being able to stick to my word and taking part in activities even though I am
having a bad day with either my depression or Crohn's disease or the
Fibromyalgia even though most of them expect me not to overdo things and go
beyond my limits even though I keep pushing myself they do not want me to.
It is now a habit which makes me feel better to apologise to everyone for
letting them down. It is a way for trying to tell them that it is unfortunately
out of my control whether my body is going to be having a good or bad day and
with living with a number of chronic illnesses it is very unpredictable and if
it is one of my bad days it is not any fun for either of us.
3. It can be
embarrassing living with chronic illnesses
The main reason why
people are having a lot of embarrassment is due to them setting unrealistically
high targets and expectations for themselves and then they judge themselves
negatively when they cannot meet those standards. We really do not have
to look too far to see the unrealistic and high expectations and the negative
self-judgement. Yes I am one of many who set unrealistically high
expectations and targets for myself especially as a parent as I see I had a bad
childhood not the worst and definitely not a good one but that was down to many
reasons such as my dad having a heart attack and stroke during my childhood, my
only brother who I was close to passing away a few months after my sixth
birthday and being bullied throughout the majority of my school years because
of the way I looked, talked and because I was in the top 5 high performing
students in my year in high school. I set myself really high standards of
how I should be with Alisha and what she should and should be doing. YES!
I know children all perform differently but I am not on about developing as a
child and what she should be doing for her age. I am on about the way she
should be acting, how long she should be sleeping, etc. I have embarrassed
myself on a few occasions when I have had too much crap on my mind (pun not
intentional) and I did not realise she had been misbehaving with other family
members and also walking with her toes inwards every so often that she kept
tripping herself up when she was walking and running.
My family and most of
my friends have accepted my illnesses but I still keep finding myself being
embarrassed in front of them about things related to them such as my sore belly
due to cramping and wind or asking for help to do things as I have no energy to
do it like cleaning the house with me or playing with Alisha. I still get
embarrassed even though I have been suffering for years and many of them I had
met after I had been diagnosed with Crohn's disease but not many after my diagnosis
with Fibromyalgia. My family have never really understood me and some
never have come to terms with my diagnoses but I have a few really close
friends who understand me and I think they have accepted my illnesses too as
they are still here supporting me every day even though I have really bad days
but some of them can read me like a book and can tell when I am hiding behind
my smile. These are the friends that I would miss the most if they were
to disappear or walk out of my life as they have been the biggest support I
have since my dad and granny passed away. However, I do feel guilty when
I have to let them down because I am too sick to get out of bed. I feel
guilty when I have to break my commitments due to not feeling well. Even
though no one has said that they are annoyed with me for cancelling plans with
them I still feel guilty for letting them down.
Being ill can also be
embarrassing now more than ever as we all have to be fit and healthy including
mentally fit and healthy. There are things in my head that should stay
private but when I started my counselling sessions she said nothing is to stay
private so I could talk things through with someone which is why I always had
mental breakdowns as I always locked them things up and never talked to anyone
about things not even my closest friend or my family. I always have seen
it as they are for me to know and no one else as they can be very private.
We keep many details of our lives private why not chronic pain and
illness? Most of us unfortunately cannot hide our medical conditions from
everyone else as we have to explain to our loved ones why we cannot do this and
why we cannot do that, why we have to cancel plans at the very last minute, why
we have to sit down suddenly or leave a gathering early. Instead of
keeping it all private we have to talk about it and sometimes it can be
embarrassing or frustrating especially when they do not understand what all it
entails.
The most important
thing everyone cherishes is independence that comes with good health. We
find it embarrassing to have to continually ask loved ones to do so many things
for us such as cleaning, shopping and supporting us financially. There
are a few people I know who are forced to move back into their childhood homes
because they are unable to look after themselves or they can no longer afford
to live independently. Having to tell others that you have had to move
back into your parents’ house again can not only be embarrassing but
people can feel ashamed of having to admit they needed help from their
parents.
Sunday, 11 June 2017
Self-esteem and Chronic illnesses
Living with a chronic illness such as
Crohn's disease, you have to deal with a load of shit (both literally and
figuratively speaking). Not everyone suffers the same as everyone is
affected by the disease symptoms but also the side effects of the treatment
they are receiving. Some of the symptoms like the ulceration in your
stomach or colon are not visible unless you have an endoscopy or colonoscopy,
but there can be side effects which can be physical too. Self-esteem being one
physical manifestation as it can take a hit when you are struggling with side
effects like weight loss, facial swelling and weight gain due to steroid
treatment and acne too.
Edema is causes by dehydration and
malnutrition which is usually caused by rapid weight loss during a flare up.
It is hard to keep things down and keep them in when you are running a
marathon to the bathroom between 10-20 times a day or even more. Fluid and
nutrition is easily lost. An IV saline drip is usually the best method to help
dehydration but if the body is lacking protein, edema can occur.
Edema is the lovely swelling caused by fluid retention. So after a drastic drop in weight such as 11stone 7pounds to 6stone 8pounds in a period of 6months could find yourself swelling up like a human balloon. Edema is much harder on the body than you can imagine. When you are either lying up in the hospital bed all day with little or no energy at all, the muscles become weaker. This makes the swelling feel a lot heavier, in turn making it harder and more difficult to get out of bed. The edema can surprisingly cause back pain due to the pressure on the nerves and muscles.
Without an IV saline drip the fluid
weight can be lost within 2-3weeks. Unfortunately this will bring you
back to an unpleasant state of being underweight. This is definitely not
glamorous at all in the slightest. After such a drastic weight loss we
usually try to regain it as quickly as possible depending on how much we have
lost. It can be a long and slow process. Last time I had lost a lot of
weight that I needed to regain was after my massive flare which lead to my
diagnosis of Crohn's disease back in 2013. My normal weight before I had
my daughter Alisha fluctuated between 65-70kilograms. After I had her I
could not shift the extra weight I put on during the pregnancy or afterwards as
I had been put on the lovely devil tic tacs, prednisolone for just under 5mths
due to my medications causing really bad liver inflammation. My normal weight
is still not decided yet as 2years on I am still trying to lose that extra
weight as I was over 100kgs. During the transition period I felt really
awkward and uncomfortable but more so after I had Alisha as I was already down
about my weight and then adding steroids into my mixture of medications it made
me feel worse. Worse in a sense that I refused to go out and about to the
shops, baby groups and other places. They were the days I felt very
discouraged to go out anywhere even when I had a lot of energy and it was
because I did not want to be seen in such a state.
On top of all the weight
fluctuations, the usual treatment for Crohn's disease is steroids to control a
flare up and for Fibromyalgia is a form of anti-depressants to control the
pain. Both come with side effects and the most common are weight gain and acne
unless you stop the treatment it seems to stay for the full treatment course.
I despise the acne as no matter how much I cover it up with make-up it is
not always 100% effective and I have noticed it can make it even worse. I
know most men would not be plastering their faces in concealer if they have
really bad side effects from the steroids which leaves them with even less
options to cope and manage it. Along with the horrible little red bumps
that appear all over your forehead, cheeks, chin, chest and for me along the
jawbone near my ears, steroids especially prednisolone causes facial swelling.
Everyone deals with it differently some worse than other. I usually
suffer really bad with "moon-face" and look like a human sided
hamster when I am on them to control my Crohn's disease.
All of the side effects can make it
extremely difficult for anyone to feel confident and happy about themselves
which is very important during the recovery process. Even when you do not
feel like going out, but being locked up away from other human beings can be
detrimental as well. Locking yourself up away from others can cause social
anxiety, generalised anxiety or even depression. After I had Alisha I was
diagnosed with social anxiety and depression as I only seen her and her dad on
a daily basis and anyone who came round to visit like the health visitor for
the most of her first three months. If you get hung up on how you look
now (which is only a temporary state in which your body is in) you can make the
recovery process even harder. If you do not feel back to your 100%,
remind yourself in time you will be in a better place both physically and
mentally.
Tips to try to boost your self-esteem:
- Go exercise. Exercise can help boost my self-esteem especially during my recovery process with any of the things I suffer from. Yes even when my Crohn's is flaring up and the only exercise I want to do is running to and from the bathroom just that little bit of a walk outside is all it takes to help. The exercise does not have to be in the gym it can be a walk around the block, a run around the park, lift some weights at home (if you have any or you can compromise with using something else like a shopping bag full of tins). Just a little bit each day helps build your self-esteem and it also helps to build back your muscles and boost your overall mood.
- If you have insecurities about your weight either being overweight or underweight, usually wearing baggy clothes help make things less noticeable. There are very slim chances of anyone even noticing your weight and size. It is what is going on in your head about your weight that is the big deal. Do not forget it is only a temporary state your body is in it is not permanent and you can work on it over time to get it the way you want. Just do not take it out on yourself as it will not help your self-esteem. You are beautiful no matter what as it is your personality and character that matters the most not your physical appearance.
- Do something that makes YOU happy! Write, draw, watch movies, read, go to the gym or go out with friends for a coffee. Do something to make you happy and put a beautiful smile on your face. Not everything has to have a lot of energy to do something for yourself if you are not up to it.
Your appearance changes more
frequently than you can imagine. Some seem more drastic that others
because the only person who knows your body the most is yourself.
Sometimes it is best not to care about the changes depending on what they
are. Do not stress as it does not help as it usually makes everything
seem worse than what it actually is. You have to just put your mind to
what you want to achieve and concentrate on that and work towards that goal. Do
not set very short goals as they are not easily achievable and can cause even
more stress. If you wish to lose weight do it by changing your lifestyle
not follow strict diets like weightwatchers or slimming world they are not easily
maintained I know that from experience. Set a goal that can easily be
achieved like losing 4kg in 2months is achievable and not full of pressure to
cause a lot of stress on yourself. It is achievable and can easily be
maintained afterwards.
Saturday, 3 June 2017
IBD and is the person you love a keeper?
Every relationship I have been in, a large portion
of every one of them we have had to deal with many health issues from passing
out with anaemia and being doubled over in pain on the toilet or not being able
to walk up or down the stairs without having to crawl up or down them in pain. Most
of the guys I have been with have walked out the door or ran out in some cases and never looked back or
never got in touch again after they seen the worst I have been with my health. There are a few things most people look for
when they have chronic illnesses and looking for a partner or that very special
person.

1. They hold
your hair back while you have your head in the loo puking your guts up
When you live with chronic illnesses such as Crohn’s disease, you have
more than your fair share of puking. A real
man will stand by your side, he will hold your hair back for you and if you
happen to miss the toilet he will help clean it up.
2. They will
love you even at your worst moments
Between our periods and the lovely devils tic-tac’s Prednisolone, we can
be well… difficult to live with ha-ha. A
real man who you want to stay around, will stand by your side and love you no
matter what. He will understand that
behind all the angry faces, fighting, arguing and mood swings that there is a
loving and caring creature. Prednisolone
is most definitely not for the faint hearted and if he is a keeper he will look
past all that.
3. They think
you are beautiful even when you are really sick or have loads of scars
Living with a chronic illness makes you feel ugly (well it makes me feel
ugly for definite). You look at yourself
in the mirror, or you have a moon face from taking steroids, or you have an
extra bit of weight due to the steroids, or you have lost a lot of weight due
to a flare with your Crohn’s disease. Whatever
the case may be having an illness or multiple illnesses does not make you feel
like a beauty queen. Scars, hair loss,
the pale complexion… if he does not see your true beauty, he is not worth
keeping. A real man will remind you
frequently of how beautiful you are then he is definitely a keeper.
4. They will
yell at the doctors for you instead
There are hundreds of doctors out there.
If you have been suffering for any length of time with an inflammatory
bowel disease, you will know there are also a lot of bad doctors out
there. Sometimes you just do not want to
deal with it… either because you are too sick to voice your opinions or you are
too tired to put up a fight. In those
moment you would want a man who will take up the sword and put up a fight and
help fight your battles for you. If he
loves you the way he says he does he will fight for you until the best possible
care is found. If he shows any signs of
being a hero then he is most definitely a keeper.
5. They will
stand by your side when everyone else does a runner
I have dated a
few guys in my time, yes I know I am still young. Most of them had ducked at the first sight of
a sniffle. To be honest, most guys who
do that are most definitely not that into you in the first place. But you really do not want a man like that
anyway as he would run away eventually. You need a man who loves you no matter
what the future will hold. You want a
man who is willing to ask for your hand in marriage or stick with you no matter
what happens even if you are diagnosed with an incurable illness or diagnosed
with secondary illnesses with your IBD. You
will need a man who will stick with you for better or worse. You need a man who will love you come what
may and you deserve that. A man who
lives up to the vow “in sickness and in health” will be the man who is a keeper
even if he is not married to you as long as he stick with you through every up
and every down in your life that is what matters the most.
To anyone who has had a man scorn at you because you are too
sick due to your illnesses. REMEMBER you
are still very valuable. The man who
runs away at the slightest sign of trouble is not worth your time. You want a man who will love you and respect
you with every ounce of his being. Ladies
you are worth it. DO NOT ever settle
for, or get hung up on, any man who makes you feel like you are not worth his
time. If he gets on like he does not
care about your health or wellbeing then he is not worth any second crying over
if you split up or he eventually does a runner on you when you are at your
lowest or the worst time of flare up and end up being admitted into the
hospital. Apart from running away and leaving you to cope on your own being sick, manipulating and controlling relationships are definitely not good either. They are not good especially when he manipulates everything you say and tries to make it look like you are actually not sick or tries to make himself look like he is more ill than you are for example, you have a flare up with your IBD and he is suffering from man flu, instead of him helping you out he makes it look like he is needing you to lift and lay everything for him especially when you are unable to move out of bed yourself apart from just about getting up and out of bed to get to the toilet in time before being sick. If you have someone like that he is most definitely not a keeper.
Labels:
anaemia,
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Sunday, 28 May 2017
Hiding behind a smile - how I manage to hide my worst days with myCrohn's Disease
When I usually
go out of the house you will usually see me all put together nicely. Makeup done, hair done, etc. I have learnt how to hide behind little
tricks to look very presentable with very little effort. These little tricks are to act like a normal
person despite being ill. You will see
me smile even when I am in excruciating agony and possibly dosed up on pain
killers. My body is yelling at me even
though I am hiding what I am feeling and thinking. I do this to act like I am normal. I do it to feel normal too. This is all to hide from others so they do
not know I am suffering in agony and so they do not focus on me being sick as
most people do not know how to respond without hurting me.
Very few people
see me at my lowest (which is my worst days) as I usually hide them very well
now. However, this is not always the
case as some of my very close friends know when I am lying so if they ask me a
question and I usually reply the exact same answer time and time again they now
know that I am hiding something whether it be my Crohn’s hurting me or my
anxiety or depression getting to me. My little
girl Alisha also knows when I am hiding something from her so she has started
bringing me a teddy and giving me a huge slobbery kiss and hug but that is
usually when she sees me slipping with my guard as it does get really tough
keeping my guard up all day. During a
flare up of any of my illnesses whether it be the Crohn’s disease, anxiety or
Fibromyalgia, the last place my body wants me to do is go outside of the house,
plaster a fake smile on my face an look presentable. On my worst days I actually struggle to get
out of my bed and Alisha actually comes into my bedroom now and says “up mummy
up”. She may only be 2years old but she
knows that the day must go on even if mummy is poorly and wants to stay in bed
all day, so instead we have a pyjama day instead hiding away from everyone.
On my bad days
I only go out of the house if I desperately need to go out so anything like
appointments, work or a food shop is when I only leave the house. On a terrible day I do not even leave my
garden or house depending what the weather is like outside. When I do go outside I need to make sure I
feel safe or there is toilets which are close by just encase I need to run to
them quickly. These places I need to
feel safe because I do not need to explain myself if I have an accident or they
are understanding. I do not do this
because I feel ashamed of my day to day reality, I do this because I sometimes
need protection from the vulnerability I am experiencing. At the end of the day it usually leads to
people’s misconceptions about how bad my illnesses are. There are days I could have a shower and I am
out of breath but I do not let anyone know, but it does not mean I do not
experience this. There can also be days
when my hands shake or I cannot get my feet to move or my face turns a grey
colour as I cannot swallow something or I am trying to catch my breath. You might not see these things happen as you
are busy or just because I hide them from everyone or I do not speak about it
to anyone. YES these days do exist and I
can promise you they do exist. There are
also days I am curled over in agony because I have ate or drank something that does
not agree with my stomach and only a selected amount of people are aware of
this happening. Or I am frozen with
anxiety and I cannot actually move from where I am standing. This happened the other day as I was promised
a lift home after I had finished work to collect Alisha from the
childminders. But that person text
really late and my anxiety had kicked into overdrive and that made me freeze to
a spot near work because I knew I would have been collected safely after
arriving to work and the whole shopping centre was evacuated due to a bomb
alert. I did have the choice of going
home and saying I am not working but after the police had gave everyone the all
clear to return to work I said to myself that anxiety you are not getting the
better of me as I am in control not you.
Bad days and terrible days do happen to people with chronic illnesses but those who suffer with more than one chronic illness can suffer with more bad or terrible days depending on if the illnesses are in remission and under control. However, there can be a day when that illness decides to say oh no you are going to be tortured today and I am going to make your day hell. I
say all of this because it’s easy to judge a person’s condition by what you see
when you’re with them, but you can’t rely on that. When you see me you may
wonder why I can’t apply for a regular job. You may wonder why I write about chronic illness so
passionately. You may think I exaggerate because I enjoy pity. But when
you see me, you aren’t seeing all of me. What you see one day does not
accurately depict every day.
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