poetry

I find art very therapeutic but recently I have been trying my hand at poetry and have written two poems about living with a chronic illness. I have written them openly so they can be about any chronic illness.

Just because
Just because you can't see it, doesn't mean it's not there.
Just because I'm smiling, doesn't mean I'm ok.
Just because I'm calm, doesn't mean I'm not fighting.
Just because you can't see my symptoms, doesn't mean I'm well.
Just because I'm ok today, doesn't mean I will be fine tomorrow.

Just because I'm standing, doesn't mean I can't fall.
Just because I struggle, doesn't mean I'm not strong.
Just because I live with this daily, doesn't mean it's my life.
Just because you don't know its name, doesn't mean it doesn't exist.
Just because it's not talked about, doesn't mean I suffer alone.

My pain is real.
My illness persists.
My struggle is daily.
But my life is more than this.
We are not alone!

The second poem is inspired by the poem pretty ugly by Abdullah Shoaib its a poem that when you read down you get one meaning, then when you read from the bottom up you get another. so read each line from top to bottom and then bottom to top.

Invisible Illness
Am I a warrior?
I am weak.
My struggle is daily, so I don't think,
I am a strong person.
By the end of a long day,
I don't think I can cope.
I won't tell myself,
there is strength inside me.
I keep telling myself,
its all in my head, it's not that bad.
Others will not make me feel,
I deserve support.
At the end of it all,
I don't deserve any empathy or sympathy.
I can not believe that you understand.
Because when I see how you look at me I think,
Am I chronically ill?

alone

Where to start I feel alone most of the time! 

Although there are millions of people out there with the same conditions as me I can't help but feel alone. I feel like this at so many points in my week.

1) School run. I walk my son to school its half a mile there and half mile home again, and I have to do it twice a day. There are many things that make me feel alone about school run. Most of the mums at the school gates have hair done, makeup and well dressed. I turn up with unbrushed roughly tied up hair, no makeup and whatever clothes I can find that are comfy for my bloated endo belly and walk to school in. I feel out of place like I don't belong, I want to melt into the background but for my son, I socialise with the other mums of his friends. Also because some days this is the only adult contact I get (apart from husband). I also have to stand in the playground waiting for them to open the doors. By the time I get to the school, I am already in pain from the amount of walking I have done. then standing waiting to go in adds to this, I am aware that I need to walk home still. I'm stood there wanting to cry putting on a brave face feeling so alone while surrounded by people.

2) At home. I can go days without seeing another adult other than my husband and I sometimes feel like I'm going crazy. There is only so much toddler talk you can take before you go insane. I want to be one of those mums that go to mummy groups and makes mummy friends. But there are many reasons why I don't. I worry about being mummy judged because of the fact that some days when I'm feeling unwell I just stay at home and have a sofa day with the kids. I worry if I will cope with being up and about, and what people might say when I feel unwell and don't turn up or go home early. The times I do open up people just don't seem to get it, they seem to downplay what I'm going through. I don't know if its lack of understanding of what I have or experience. or if its that the topic makes them feel uncomfortable. but either way, it makes me feel alone.

3) Friends. I feel more and more that my illnesses are causing me to lose friends. I don't know if its because I go out less or something else. I try to stay in contact with all my friends and try to be honest about how I'm feeling, and how my health is. But I tend to get the response I hope you get better soon, and then they either move away from the conversation to a new topic or stop talking to me. I end up feeling like people don't understand my illnesses and how it effects me or that they don't want to know. I try to be honest then feel like my being honest is not wanted so I stop talking about it again. This, in turn, causes me to feel more and more alone until I just want to cry. I am now feeling like I don't have any best friends anymore, I feel so alone and when I feel low I don't know who to turn to.

4) The internet. This makes me feel very alone at times the culture of knocking others down rather than building each other up. The fact that people shame you for not being the perfect example of a mum. I have tried to open up on my personal social media about my conditions and on the whole, people don't even acknowledge my posts. This makes me feel alone as it's like my illness doesn't exist or that people don't want to acknowledge my illnesses. Sometimes I want someone to respond to my posts and try to understand. The one good thing about the internet is the other chronic illness people I have met and we support and build each other up. But even this has elements were people compete with one another, whose condition is worse whos had more worse days. I don't get this and wish as people we could support and be positive rather than negative.

I wish I didn't feel alone so much and that I was coping better with life. At times I feel like I'm paddling in water to stay afloat and People are sailing past not making eye contact. (for fear of acknowledging there is someone who needs help) But each time I have a bad day I feel like I'm about to go under and this time I might not get up again.

Art work

I use Art to deal with a lot of my emotions around the struggle with endometriosis and have made quite a few in the last year. I find creating these very theraputic and help deal with the depression that rears it head now and again.

I sometimes draw about the physical feels attached to having Endometriosis and Adenomyosis 

I use different things to describe Endometriosis and using weeds often works well. this is brambles that grow around everything and causes pain. I often find using weeds works best as its something everyone understands. I liked this image as its more anatomically correct and with the black brambles making it more shocking by the contrast.

 These two images are representing the different types of ways I sometimes explain the type of pain I experience. I think explaining pain is a very hard thing to do especially when its different types of pain at the same time. 

This is an acrylic painting with cuts in the canvas to represent the ongoing pain that surgery after surgery cause. Surgery is not always the answer as sometimes the scars left from surgery can give the Endometriosis more places to grow. it can also cause more adhesions and pain. It also represents when the pain of Endometriosis feels like your being cut open and ripped apart when you have a flare up.

Then the next type of images is representing the emotional side of having a chronic illness.

This image represents Miscarriage and how each one I felt like a small part of my heart went with the miscarriage and the baby I never got to hold or meet. Miscarriage is a taboo subject and something I have experienced and kept to my self for years. I felt ashamed and like I wasn't allowed to tell people.












This image is the depression and loneliness that a chronic illness can make you feel. I sometimes feel very alone. I was diagnosed with Endometriosis 12 years ago but most of this time I kept it to my self and didn't really talk about this. I felt so alone and weird as I didn't know anyone else with it at the time. I have now met so many more women through social media and support groups.

I often feel like I wear a mask when out and about. I show a smiling happy person when inside I'm in a lot of pain and struggling just to get through the day and deep down I want to cry. I used to say I'm ok when people asked me how I am. I know say "its a good day" or "its a bad day," I think this choice of words makes people realise even if today is ok I sometimes have bad days.

 This is Crampy a little character I created to lighten up some of what I do and think as sometimes it can get a bit dark in my mind. Crampy is a sad womb who has Endometriosis.











Then there are the Educational images.

The anatomical images of what adhesions, Endometriosis and adenomyosis look like. it shows the adhesions between the tubes ovaries and womb, the womb attached to the bowel. Then endometriotic cysts on the ovary, and Adenomyosis

 These next few images are the different stages of endometriosis. I use weeds to explain how endometriosis grows and that just because you cut the top off the weed (the visible part of the endometriosis) doesnt mean you got it all, it will keep growing. there are 5 stages of endometriosis and each weed represents one of the stages.

This image goes with the one above. The leaf shapes represent the different levels of pain. With endometriosis, the stage you are does not link to how much pain you feel. there could be one woman with stage 1 and the highest level of pain. But then others have stage 4 and almost no pain. I designed this so you would take the size of the weed (stage of endometriosis) and then change the leaves to match the level of pain you experience.

 This sketch is what I imagine Endometriosis would look like during surgery if it looked like it felt.

This image is just some of the things I experience as part of my Endometriosis.

misscarriages

The first time I ever had a miscarriage was back in 2011 I was engaged and had recently had a Mirena coil fitted (about 7 months) we were on a scout trip to Luxemburg and it was 2 days into the trip I reaslised my period was week and a half late (maybe more my periods had not been regular). I decided I would take a test when we got home and think about it then. But few days late I started bleeding it was the most painful period I had ever had. I dismissed this as just heavier because it was late. that was until I went to the toilet and wiped and there on the tissue was a small blob and I recognised this as a fetus about 6 to 6.5 weeks I didn't know what to do scouts everywhere I wanted to do something with this but couldn't so flushed it away. I told my partner straight away but I didn't tell anyone else for years. I felt ashamed like somehow this was my fault I had done something. I Had the coil removed straight away when I got home and went onto oral contraceptives until I Tried to get pregnant with my son in 2013.

when my son was about 7 or 8 months I was feeling really tired and we went out to truck racing. strange way to start a story but they are linked. I usually like the smell of fuel (years of working in a petrol station) but we were sat watching the trucks race and I was feeling more and more unwell by the smell. After a while, I had to leave, I remember walking calmly over to the toilets then the strong feeling came that I recognised. I ran to the toilet and was sick, I knew what this meant it was just like when I was sick when pregnant with my son.

we left the truck racing early and headed to the shop to get a test I was 2 days late but I had just put it down to after birth settling down. I peed on the stick and nervously waited when I turned it there seemed to be a faint line but not a strong line. We decided to go to the GP tomorrow and get a blood test done. but it felt the same as it had with my son, I started to imagine my life with a second baby what would life be like would it be a girl or boy.

The next morning I booked an appointment to see my GP in the afternoon now to patiently wait. I hadn't had the usual pre-period issues I would normally get and was still feeling sick. But then before my appointment, I started bleeding but heavier than usual and I recognised this feeling it was just like when I miscarried in 2011. When I went to the doctor and explained my symptoms and what had happened and He said I think you're having a miscarriage and best to take it easy and come back if things didn't settle down.

After this, I went back onto the bill I had been on before my son. It didn't help my endometriosis but it would stop me from getting pregnant. I wasn't emotionally in a place to think about a second baby after this, I was struggling enough with day to day life with an illness that doctors said I was exaggerating and a baby.

It wasn't until we decided to have a second baby that I had to deal with all the emotions of what could happen again. We had tried for a long time and then my period was 2 days late and I was feeling sick again, (same feeling I got each time I was pregnant). I couldn't be excited I just had to take a test, it was faint was it a line was it not. again I booked to see the doctor for the next day not sure to be hopeful or not. that evening the same feeling I had before I was having another miscarriage pain but no bleeding yet. The next day just before I went to see the doctor the bleeding had started. I saw my doctor who said again it was very likely a miscarriage and if the bleeding doesn't settle down to go and see the doctor.
The next month I fell pregnant again and this time I didn't have a miscarriage and was blessed with a baby girl.

sketch to represent my miscarriages

I felt in pieces. I felt like a small part of my heart left with each miscarriage, with every baby that could have been in my arms. It has taken me a long time to talk to anyone about these experiences as I felt I couldn't share my thoughts with anyone, I'm not really sure why. Just because I didn't share my struggle doesn't mean I didn't struggle. I also feel blessed to have my children I know so many women would love to have a baby and can't. seems like many topics around the female reproductive system are all treated as a taboo subject still. I hope one day women can be open to this, and support each other.