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.

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. 

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.

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.

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.

IBD and women

I was diagnosed with Crohn’s disease after months of suffering.  I had ended up in a&e after collapsing in work one day in March 2013 and I was sent home to be seen by a doctor and not to come in unless I was signed off as fit for work.  That day I walked into a&e I was not allowed out again until a month later.

One full month in hospital and I was bored out of my mind.  The first 2weeks I was bed bound and was only allowed out of bed to go to the toilet or get a shower.  The rest of the time if I moved I was taken back to bed again as I was extremely poorly as I had no energy or strength to stand up on my own.  I had needed support off nurses to take me to the bathroom as I was extremely weak.  I was unable to keep any food or drink down and it scared me out of my wits not being able to eat or drink properly.  When I was in the hospital I was put on saline drips and was given special drinks to make sure I stayed hydrated.  After about a week after my admission I was starting to be able to manage food but only a few mouthfuls as I had no appetite.   I had fallen out of love with food as it made me suffer with so much pain I cried until it had passed through me.  This pain was caused by all the ulceration in my mouth as I had massive mouth ulcers and my bowel was also inflamed and ulcerated too.  This inflammation and ulceration was caused by a Crohn’s disease flare up.

Anyone with an IBD would understand how debilitating and draining a flare up can be mentally, emotionally and physically.  It can be extremely painful, you might have to be hospitalised or unable to leave your bed or heavily medicated.

While both men and women can suffer from inflammatory bowel disease, but as a woman, there are a few things I have noticed that are gender specific from help from the professionals and red faced conversations.  There are a few things that women have to deal with when suffering with IBD have to put up with:

1.    You have more favourite clothes than an average woman

I have a few favourite pjs that I love to spend my bad days in.  During my period and my bad days I spend more time lounging around the house in my comfy pjs due to the bloating, pain and the need to feel comfy.  It sometimes helps me to feel better in myself even with the pain and bloating.

 

2.    It can be a bit embarrassing when needing to go and use the public toilets

Most guys seem to be able to go for a poo in public toilets much easier than females.  When you walk into female public toilets there is always one person complaining just when someone makes a noise that is not normally made when going for a wee.  Or someone complains about the smell in the toilets due to someone doing a poo.  So for a woman with an IBD in a full blown flare it is not really ideal as it is embarrassing when someone starts complaining.

3.    It can also be embarrassing having to talk about the toilet to people

Guys get away laughing and joking when they fart but when women do the same or talk about bowel habits it is extremely unladylike.

4.    You get plagued with Juice Plus offers more than anyone in your friendship group

Women Juice Plus sellers seem to target female IBD sufferers and they explain how “amazing” the natural ingredients are in the capsules which are supposedly really good for ulcerative colitis or Crohn’s disease.

 

5.    You own more high waisted clothes than a shop

Some people with IBD might have to have surgery to remove part of their intestine and part of the intestine has to be brought out to the abdomen to release the waste.  The surgery can be done to give the bowel a rest or because part or all of the bowel has had to be removed.  Most women with an ostomy live in high-waisted clothing due to it being secure, supportive and trendy.  Those people without an ostomy use high-waisted clothing to hide the bloating caused by IBD.

6.    You have lost weight is no longer taken as a compliment

Just before my diagnosis of Crohn’s disease in 2013 I had lost so much weight due to a massive flare and my colleagues were concerned with my well-being.  Customers and other people congratulated me on the weight I was losing.  But in my head it was most defintiely not a compliment as it was not intentional as I knew I was sick but no one believed me

7.    Insulting comments like “you have put on so much weight” can be even more of an insult

During a massive IBD flare doctors always give patients steroids to help get their health back on track again.  With steroids everyone starts commenting on how much weight you have gained instead of how much you have lost.  Other comments include gerbil or hamster cheeks due to the steroids.

8.    “I get that pain too” is a regular occurrence

When it comes from someone who also suffers on a daily basis with IBD or another chronic illness such as arthritis or fibromyalgia that is fine.  But when it comes from someone who is describing period pain against IBD pain it actually takes the piss I cannot take it no more.  Yes I have a lot of people in work coming about period pains but I know they known I suffer much worse with my IBD when I am suffering with a flare up.  I am sorry but your womb is not the same as a very ulcerated colon.

9.    Doctors do not take women seriously

Due to stomach cramps being one of the main symptoms of IBD most doctors try to fob you off with it is just women’s problems even though we know ourselves it is nothing to do with our period and it is actually to do with our bowels.  Bleeding is another symptom and some doctors surprisingly does not understand the difference between blood coming from your rear end and bleeding from your vagina.  This is another reason why doctors pass it off as women’s problems.

10. You become extremely understanding to others

Yes it annoys me when other women compare their symptoms of their period pain to Crohn’s or Fibromyalgia pain.  But over the years of suffering I have noticed I am a bit more compassionate towards other women especially when they have to take time off for stomach cramps.  My daughter suffers a lot with stomach cramps and since we have figured out that it was mostly down to allergies (she is only two but with four food allergies that we are aware of to date and under investigation for IBD and Coeliac disease due to her symptoms being exactly similar to both illnesses after taking out everything with any of the allergens she cannot have).  She does know when I am in pain and she is very compassionate and usually gives in to giving me hugs and kisses to make me feel better just like I do when she has stomach cramps.

11. You are an extremely strong person (even when you do not think you are)

On a daily basis we deal with bloating, cramps, bleeding, fatigue and many other bowel related things.  We gain a lot of weight, we lose some too, we trial different combinations of medication to stay at a balance.  We have to face surgery, infusions, injections and we have taken way to many different tablets under the sun.  We also have to deal with rude, judgmental or inconsiderate people and people who just simple do not understand.  We already have to deal with so much as it is but we are still here and still fighting our way through things.