Living a life with endo...

I found my voice a few weeks back on Instagram when I shared some words about feelings and coping with endometriosis. I was surprised to have received comments from others about this (see previous post) It's always hard to sit and try and come up with words to explain how much of a struggle this is. For someone who is not a sufferer they wouldn't be able to understand the pain that we endo sisters have to go through. It's the pain that people dismiss as "period pain" or the pain that "everyone gets" but if pain doesn't go away then surely that can't be seen as a "normal" or "everyday" thing. 

When you are told that you have endometriosis there are no words to simply describe how to feel in that moment. A mix of emotions overwhelm you and you aren't sure what to feel. You are told your treatment options are this or this option and then risks are explained. You are told this would be the best option because of this reason or this isn't recommended because of age or whatever reasons. Then everything moves so quickly and fertility is brought up in the conversation. The words "The risk with surgery because you're so young could mean fertility can be affected." It's like you are instantly made to jump forward ten years or so of your life to think about pregnancy and having a child. After hearing the shit news you are left to make decisions on how best to go forward but what if you don't know or if you're like me feeling scared and uncertain about any decisions that you need to make. Then the part about there being no cure is explained and management is key. Every chance taken of trying to stop the endometriosis growing back is ruined because it keeps on producing which means that pain becomes a thing again. But the one thing they forget to mention is the way it affects you emotionally. The consultants are just there to treat the physical side of it and the emotional side is the burden that you have to carry with you every day.

Alone. That's what I feel. None of my friends or family understand except two people who have endometriosis. They tell you how they're sorry to hear about the diagnosis and start showing all this sympathy just like if someone had died. They tell you to be strong and everything will be okay. The reassurance isn't enough. They don't understand what it's like to be in pain, having to force all these different pills down your throat to manage the pain and all the days and nights wasted because of pain. You tell yourself time and time again " I'll be ok" but that's hard to believe but it's the one thing we have to hold onto when having a flare up. The clutching of the abdomen while doubled over trying to manage that sharp stabbing pain that becomes stronger. The tears streaming down your face and the need to try and stay silent so nobody hears the cries from downstairs and sees how the condition defeats you. Powerless. No control. Weak. You do everything the doctors tell you to do but the condition overpowers and makes life impossible. The fear of not knowing. Not knowing what the future will hold. A future of uncertainty. The need to take each day at a time because planning ahead is unbearable. 

They tell you "You are so bloody strong and tough" inside your head you're thinking "NO" and you can't accept these words from them. This is stealing your life away from you . You have to act like you're strong because if you don't then how would people view you. You would let endo win and that would be it. You would become the girl with endometriosis and not the girl with opportunities ahead of her.

You wish you knew how to let someone know how to help. It's hard to think what they could do because it feels like a lonely journey. It feels like nobody can reach out and guide you through it all. It seems like everyone is getting on with life and doing all the things that most people do like going to university, having a family and graduating. Then there's you... The individual who is consumed by this condition and how much it is tearing you apart inside. A daily and long battle that feels like it's just constant. The way it curls up around you and takes over your body and mind. The way it grips on and doesn't let go. The difficulty of finding ways to battle through on bad pain days when it all just feels too much. The pages of writing, the history of phone calls made to Samaritans to try and find someone to sit through the darkness with you and to find some sort of hope in a really dark and shit place. The feelings of letting people down when having to phone in sick for work and leave them a staff member down. Life feels like it's at a standstill. Things may look like they're going okay but really they might be hard. 

Review💪🏻

I had my review appointment with Dr L and it went better than expected. As usual Dr L was supportive and gave me the time to talk through my current fears and concerns about my health etc. Since the medication increase it has helped in terms of coping with my mood and trying to cope with everything that's going on health wise. She used this appointment to look at both my mental health and endometriosis which was helpful as she could understand how the two conditions affect me. The one thing she did do was ask questions and she wasn't scared to ask the questions that no other doctors had explored before like what does a day of low mood consist of and what it's like to experience that. It was hard to describe but I tried my best and she already had an idea as she'd read my diary from the last appointment and just wanted to hear me verbalise what it was like. She really came down to a level in which she made me feel like she wanted to imagine what that place was like for me and how things were at the moment. She gave a lot of reassurance about if things do get to a point where the mood is low and pain is bad I am able to contact the surgery to make an emergency appointment and be seen that day. She gave her definition of emergency and told me that it's not all about chest infections but also about mental health and chronic illness as well. She gave me the impression that she really does want to help and that she was actually interested. When we spoke about the endometriosis I was able to tell her what it's like living with it and the physical and emotional aspect of the condition. I told her life feels like it's a standstill at the moment and that I'm too scared to plan ahead. She told me she can understand why I feel this way and living with an illness which is so unpredictable is hard because you never know if it's going to be a good day or a bad day. She told me that my health is important and it's okay to have to cancel plans or call in sick for work because my main priority should be looking after me and if they care enough that they'd understand. She said the next steps are to have a good conversation with the consultant and start a treatment plan and get a good idea on what next steps are and long term options. I told her medically they've tried a lot of things which have been unsuccessful and I could be looking at surgery but that's risky due to my age and fertility and I admitted I was scared. She described how things must be right now as " a rollercoaster - when it goes down it always goes back up again at some point." She said it's okay to feel what I'm feeling just now because what I'm dealing with is hard and for any 18 year old that would be a difficult thing to deal with. The one thing that she did was validate how I was feeling and she is actually listening to me and that makes me feel as if someone is on my side which is good. Dr L is an amazing GP and even though it has taken me a while to find a good GP I think I've found the right one who will support me through this shit time. 

Living with endometriosis

The more I sit with it and try to come to terms with being diagnosed with endometriosis I'm starting to accept it. My consultant is really lovely and I'm relieved she found out what is causing these problems. I mean before the diagnosis the doctors were telling me the pain was normal, it would get better once I'd had a baby, that I had IBS and fobbed me off with its just your age. It's took so long to be diagnosed. At first when I found out words cannot express the feelings it brought. It lead me to me going into a very low mood and contacting Samaritans in an absolute state. Thanks to Samaritans I got through that tough night. I didn't want to fight the low feeling but I knew I had to. I couldn't let endo beat me and make me miserable. I had to get help because it was for the best. 

Only a few friends know about the diagnosis. A reassured me he would always be there for me which is so kind and he's been an absolute rock when it comes to needing to talk or if I'm having a flare up he tries to understand how and what I'm experiencing. I spoke to staff nurse M about it on Facebook when we were having a catch up and she was so understanding and even asked me on nightshift when we were alone in the duty room how I was doing etc, M is amazing I trust her so much I've only known her since November but she's so caring and I love working with her. 

Living with flare ups is difficult. It affects day to day life and can disrupt plans if at work or planning outings. When the flare ups occur it means painkillers become my best friend during this time. The painkillers have side effects too as they cause a lot of drowsiness which can be a problem. The ones I'm on make me feel weak and drowsy and sometimes after I take them I have to go for a sleep until the drowsiness wears off. The pain can differ it can be quite a painful crampy pain but sometimes it can feel sharp and unbearable. It's not just pain that comes with it but exhaustion as well. It's hard because you may seem fine on the outside but on the inside you are screaming and in agony. 

I know there's no cure for endometriosis and the one thing I'm going to have to learn to do along with my GP and consultant is learn to live with it and manage the symptoms. I'm praying that the medication treatment options work so I don't have to go down the surgical route because the risk is high and I don't want it to affect my chances of having a family. I've been reassured that despite having endo becoming pregnant can still be possible. It's not something that makes me anxious but it's thinking that there's that possibility that if I was unable to conceive I wouldn't be able to hold that precious bundle which I can call mines in my arms. But I will keep hoping that some day that dream of having children comes true.

I don't feel there's a lot of support out there for endometriosis sufferers. You're just diagnosed then encouraged to read up about the condition and that's it. The emotional side of it isn't recognized and no signposts of where to go for support are there. I was informed on email that Endometriosis UK ran support groups so I filled in an enquiry form to get details of when the next support meeting is. I want to go along and talk to other women who are experiencing the same thing and get support but I'm scared as I've never spoke about an experience of this type in a group setting. 

Even though there's no cure I will not give up hope. Everyday is a battle but I will keep fighting.

Recovery and Keeping Going

I've never felt so serious about recovery. People think recovery is a life without depression but this quote really does sum it up....

As much as I've hated the last two years battling depression it has made me more compassionate and thankful to those around me. The last two years are a bit of a blur as I can't really remember the last time I was truly happy. That's sad I know. All I really remember is the moments spent lying on the floor in tears wanting this to stop, interview rooms and offices with staff discussing how I was feeling, the check in sessions in the morning and afternoon with staff to make sure I felt okay, the nights spent with racing thoughts, the nights spent on the phone to Samaritans or Breathing Space, an assessment under the Adults with Incapacity (Scotland) Act, the amount of upset and worry I put my family, friends and teachers through, the GP and psych appointments. I didn't want people to think I was weak. I had to be brave. I had no choice. But I never thought in my life I would be sat infront various professionals talking about "feelings" it was honestly like being stripped layer by layer until I felt so small. These people knew more about my situation than anyone else did. To see my life on 3 bits of paper I thought "Was that all I was worth?" Each part analysed and put in my medical notes. I tell you something it felt weird. I still have the copy of it and all my hospital letters from my appointments. I look back and I think "How the heck did I manage to get through this the last two years?!" I don't know how I managed to be honest I guess I'm a lot stronger than I thought I was.

2016 already.... Where has the time went? Everything is moving forward so quickly. I still do have periods when I feel awful and don't think I can keep going but it makes me appreciate the good days. I didn't bother setting myself New Years resolutions this year but I've decided instead to set myself goals that are manageable and things I can achieve everyday and feel somewhat positive. Ive learned that I have to take my mental health one step at a time. I've never felt so determined to win this battle. Depression has been in my life for too long and it's outstayed its welcome. Even if it's just to get rid of this black dog for a while that would be great. I'm grateful I have those around me who encourage me to fight, the people I met/speak to online, Jessica Regan and the Instagram Recovery Community. 2016 is going to be the year I fight my hardest. I want to recover badly.... I want to lead a life where I feel well and not relying on medication to help me day to day, to continue to work for a year and then do my degree to become a registered nurse and finally to help others.

A quote I told one of my patients before I was moved on to another ward. I've never experienced a stranger having such an impact on me before. It was so lovely to feel appreciated and to know I'd had an impact in their recovery and progress. I wrote down the following; 

"This may feel like a struggle but take things one step at a time. You're stronger than you believe and braver than you seem. Obstacles will get in the way but you can get over them, see them as hurdles that you have to overcome if you believe you can, you will."

What's it like living with depression? - ***TW***

Depression is darkness. It's like being stuck in a tunnel but there's no light at the end of it. You feel so negative about yourself, life and the future. Everything seems meaningless and you see no point in anything. You feel numb so empty that you just feel like nothing. The feelings of joy and happiness are gone almost like someone has stolen them away from you. Your mind is like a battlefield so negative and so loud. The thoughts race and they're hard to control. The voice in your head shouts at you telling you how much of a burden you are etc. The feelings of self hate becomes stronger and this is depressions way of making you feel as if you're drowning even more unable to get out of that dark tunnel you are in. You find it hard to be around people that love you that you begin to push your family and friends away. You feel like a bad person but you just can't let them in to help you cant be seen as weak and that you've let them down. You're now alone in your room crying wanting this pain to end. You can't save yourself and nobody else can save you. You go to sleep and wake up the next again day fighting the same thoughts and feelings as you did the day before. Getting out of bed in the morning is hard because you just don't see the point you know the day will be shit anyway and why get up when your first thought in the morning is "I can't do this anymore." You wake up exhausted and it's like no matter how much sleep you get nothing will help fix that constant tiredness you feel. The negativity feels as if it's taking over and there's nothing you can do about it. You ask yourself " Does life have to always be like this?"

THE ANSWER TO THAT QUESTION IS IT DOESNT HAVE TO BE. THERE IS HELP OUT THERE!!

Speak with your GP who can offer support and refer you to mental health services for appropriate treatment. There are different treatment options you can try it might take a while to find the right one and it can be frustrating but when you find the right one life will begin to become different. You don't have to suffer alone with this illness. Things may seem dark now but it can't remain like this forever right? Where there is light there is hope.....

Looking back.. *TW*

This week was quite an interesting one if I'm honest but it has given me an opportunity to reflect. On Monday I was at a meeting and was encouraged to speak about the support I received from my teachers for my depression. It was quite useful explaining how they helped and it was a bit of a reminder of just how far I've come in recovery with the help of them. I've always been grateful to them but I've realised that they really have helped me to become more resilient and cope with challenges I face in my recovery. It made me realise that so many people take teachers and support for granted and if I'm honest they've saved me in so many ways. You do wonder though " what if they didn't get me the help I needed, what if they weren't there to talk" I'd dread to think what would've happened. I guess I'm one of the lucky ones because there's people out there who aren't as lucky and don't have those amazing people like I have. Those were the people who got me out of dark places, who showed they cared and who encouraged me to keep fighting.

I must have been difficult to deal with when I was in the grips of depression but those people took the time to actually be there and sit with me in the darkest moments, to tell me I was going to be okay, taught me how to deal with this monster. I felt less alone having them by my side supporting me through this.They said once that "you have to be cruel to be kind" and you know what they're 100% right they said I'd thank them one day and I really do. I did have to get moaned at to go to appointments/counselling sessions, to see my GP and tell my parents about what was going on but I'm glad they forced me to do these things because it has played a part in getting me to where I am today. 

The one quote I always remember Mr B telling me when I was really struggling " you may have lost the battle but you haven't lost the war" for some reason that quote has stuck with me I think it's because I use it as a reminder that when I feel defeated I can always try again tomorrow and start again. I have that quote written in my positivity book and on posters etc as a reminder. Feeling defeated is something I do feel sometimes but using things like quotes is something I use to get myself back on track. 

I look back at diaries and it's weird to read them because some of the words in it bring back a lot of emotion. Most of my entries were written in the moment and some when I feel distressed and to sit and read them it shows me the feelings of self hate depression brought with it. 

The desperation. The negativity. What was depression doing to me? There was no hope. Nothing.

Darkness surrounding me everywhere I go. No silence. No freedom. I thought you know what why not just let depression win?! It made me feel like nothing. That I wouldn't have a future it all seemed so hopeless. I felt selfish because I had family, friends etc that loved and cared about me but I was still feeling low and depressed. I felt like I was hurting them and that I was a burden to everyone...

BUT DEPRESSION LIED TO ME!! I WASN'T a burden and people did care about me. It tricked me into believing it's terrible lies and made me feel bad. It was surrounding me in darkness. I had to fight the darkness. I had no choice. I couldn't give up. I couldn't run away from it. It was there all the time and that was the hard part. The loud thoughts angry and shouting at me telling me I was a horrible and shit person. 

It wasn't until May this year I wanted to start fighting again. I was encouraged by Mrs B to contact my GP and see what other options I had available to me. There is so much stigma attached to antidepressants but if I'm honest it was the best decision I made going on them. It's amazing to see just how much things have changed for me. I still do struggle but not as bad as I used to. I'm starting to feel joy and positive again. I have a lot to look forward to and I'm not letting an illness stop me from what I want to do in my life. Things can improve at the time in the moment it can seem like they won't but it can get better but it just takes time. 

Recovery is still a battle but it's one I'm going to win. The question I ask myself " Do I want to be known as the girl who fought depression and won or the girl with depression who gave up?"

#SuicidePrevention

Today is Suicide Prevention Week. I've noticed a lot of people posting status updates on Facebook about how they want people to know that someone cares. No matter how alone you may feel there is always people around you who care and love you. Suicide is a difficult topic as it can be hard to talk about. I cannot imagine how difficult it must be for someone to be having suicidal thoughts because it seems like such a dark place to be in. "Most suicidal people don’t actually want to die, they just want to remove themselves from an unbearable situation, and for the pain to stop." Every other option of dealing with a situation would seem impossible and a sucidal person would see everything as hopeless. You would feel as if everyone would be better off without you but that is not the case. Suicide has a devastating effect on family, friends and anyone else who knows that individual.

Suicide Warning Signs

- Feeling worthless

- Feeling hopeless and having no hope for the future

- Feeling alone or social isolation 

- Irritability

- Feeling like a burden to others

- Changes in mood and behaviour

- Talking about death

- History of suicidal behaviour

- Risky Behaviours

- Feeling like you don't belong

- Giving away possessions

- Alcohol and Drug Misuse 

- Feeling Trapped

- Feeling Worthless

If you or someone you know is experiencing suicidal thoughts and feelings please do seek help now. Asking for help is nothing to be ashamed of. Talk to someone you trust whether that's a family member, friend, teacher, youth worker, GP or any other individual you can trust. There are people who can help and support you. If you live in Edinburgh the following contact numbers can be used to speak to someone and get help. Don't suffer in silence and you're not alone in this.