Keeping faith

4:10 a.m Sunday morning. I'm woken from a deep sleep by pain. I immediately stumble into the kitchen to fill up my hot water bottle, mental note really need to get a new heat pad. Groggy and uncomfortable I try to decide whether I should try to occupy myself with a movie because I know I'm not going to get back to sleep. I take my painkiller's hoping they will take the edge off and decide to climb back into bed and read my latest JD. Robb on my Kindle app to distract myself. I manage little cat naps, dozing on and off until the heat is gone and I need to refill. It's approaching 8:00 a.m when  I finally manage to drift off and I get a few hours rest. 

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I decide that I need to get out though and push through the pain. Secured with my painkillers in my bag, my remedy I have been taking which is of more use than most pills I've been prescribed I go to visit my Mum and have a lovely afternoon with her. My pain is mainly centred on my left side, around my left ovary. It's the more active spot and there are times I would love to have a camera to hand to see what's actually going on. I know, you're thinking that I should go and have a lap done but it's not really that simple in my situation. From what I've been told they (Doctor's) can only roatate the ovaries so much before they become damaged plus with stage IV they know it's going to just grow back so they are only willing to operate if I want to conceive straight away.

More and more I have begun to establish my own faith. I trust in my belief's and when I'm at my worst I'm finding out more and more that that's what's getting me through. To know that it wont always be this way, that there are good days and bad and to know that I have to love and understanding of my family and friends is something I need to show more apprecaition for. Recently I got so bogged down in my own thoughts. I allowed my fears and old issues to overwhelm me and instead of talking I tried to shut the world out and "fix" myself. When you have a chronic illness you feel as if you are always giving out or moaning that there is something wrong with you and then on top of that for your mental health to suffer well let's just say I became consumed in sorting myself out and making myself a better person that to the people on the outside it seemed as if I was trying to cut them out of my life. 

As a human I know I'll make mistakes and learning that it's ok but not to hurt people on the way. I have no problem in apologising for my actions and the things I have said and done that have affected certain relationships. I will just try my best each day and keep talking so my thoughts don't get out of control again. Dealing with this is one thing. I know it's never going to go away but I need to make the best out of my situation. 

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Today I am having a very bad flare up. I've my study materials beside me as well as my copy of "Human Chain" by Seamus Heaney. I'm not going to let this pain win. I collapsed while cleansing my spare room with Frankinscence but a slight graze on my hand is nothing to worry about. I will not take this lying down. I will however respect my limitations when I'm in this amount of pain and trust me I'm not likely to climb a ladder or do any heavy lifting today. But there are things I can do. I can stay positive. This is only temporary. I can enjoy my book, study and write. It's all about perspective and faith. I will light my candles and cast my spells and that too shall bring me comfort. 

One day I hope I will find a solution, a compromise where I have a quality of life, where I don't have so many bad days, where my body feels like my own again and where my dreams can be put into action. Until that day comes I will keep my faith. 

Hope you lovely ladies are all keeping well. 

XxxX

It's time to begin

It's official. I have gone one full week without a flare up or extreme pain! (I've had some pulling on the left ovary but it's minute) I'm feeling quite positive about this recent new lease on life. I'm not currently on any treatment either which is a nice break to be honest. I haven't taken any Primolut now for over two weeks and the headaches I was getting have already disappeared. I know I'm prone to migraines but it was everyday with the tablets.

I digress. I want this post to show really how positive I feel both mentally and physically at this very moment in time. There are several contributing factors to my attitude. I've mended friendships, begun new ones, strenghtened bonds and am in a loving relationship. I've also let some people go, woken up to alot of bs and I think, as corny as this is going to sound, grown as a person.

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I've never really been able to find the words to describe how having this illness has affected my mental health. Physically, yes fine, I'll talk no bother at all. But when it comes to opening up about what's going on inside the noggin, well that's a completely different thing already. I've created a safe for my mind. Only I hold the keys and only I decide who gets to see inside.

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Until now. It's been a very long and bumpy road, from first symptom to diagnosis and at times I have literally broken down not knowing if I'll ever feel pain-free, ever conceive, ever have a somewhat "normal" period (not one that lasts over 13days), ever have times where I can forget about my illness and just live. Just be me. Not the girl who has Endo and can't move because she's in such extreme pain or is so tired from blood loss that she has no energy or is going through depression because it's all just too much.

I have lost friends because of my illness. They would reach their limit of asking me to go out for coffee, or a movie, even just a chat and I would be crippled with pain. But, me being me I didn't fully explain what was going on with me because I didn't want them to look at me or treat me like I was sick. In truth, I was afraid if I told them about my Endo that they would walk away. Turns out the joke was on me. Not telling them realised my fear.

Over the years I have found my own coping method as I suppose everyone does given any difficult situation. I have had relationships. Some lasted quite a time, some were very brief. I remember having "the talk" with each boyfriend. When you are dating for a period of time and things get serious, naturally you start sharing your ideas for the future. I always felt it best to explain my illness early on, be up front and get it out there. This, I felt would avoid me getting in too deep. (I have a really terrible fear of being hurt due to past experiences. I'll deal. It's a work in progress). Especially as there's a huge question mark over my fertility. They all reacted well; mainly because they didn't fully comprehend what I was telling them. "Oh you have bad periods? Doesn't every girl?" Eh, not like this.  All of them at some point later on would come to me and want further discussion which of course I was happy to oblige. That's when the talking would get serious. I remember one guy actually looking it up on the internet the evening after I told him and then ringing me with a list of questions asking me about all of my symptoms so he could check them off one by one and suggest treatments for me. He was not a qualified Doctor and became a bit too controlling. It was too full on for me but probably his way of coping. Needless to say that ship sailed a long time ago.

As I got into my twenties and began serious relationships the topic of having children would occur. I would flat out shut this down. I realise now it was out of complete fear, after having gone through fertility treatment last year and trying to conceive for the previous three I know now that I was terrified that if I allowed myself to want something that much, to even think something positive could come out of this situation that my heart would be broken.

thesun.co.uk

Of course I never talked to anyone about how I was feeling or I would have known the rationale of the situation. There are other options and getting stressed is not exactly going to help me out. My life became consumed about getting pregnant. It was, period, intercourse, ovulation tests, pregnancy tests, negative, period, repeat. You get the idea. Then the fertility medication (Clomid) came into play. This, for me was a horrendous experience. Because my ovaries were being over-stimulated I was subject to side effects. The mood swings were uncontrollable. Happy and laughing one minute, crying the next. Physical pain from both ovaries reduced me to bedrest for days, sometimes weeks. It was unbearable.

I came to think; "I can't do this. How can I look after a baby when I'm in this much pain?" I decided to stop trying, to come off the fertility medication and to focus on rebuilding myself. I've realised that for me having a child is not the be all and all of the world but having a quality of life is defintiely a good place to start. I have been fortunate enough to have a good support network and a few really good solid friends who have stuck with me. I am grateful each day for these people in my life because when the bad days come you certainly do find out who's actually willing to be there for you.

I'm feeling much better now than I have in years and the only things really that I've changed are my relationships, my attitude and ok maybe my hair. Do I know how long this reprieve will last? Of course not! But while I'm feeling this good I intend to make the most of it. The next time I have a bad day I'm going to look back on this and remember this very moment where I'm typing in my favourite spot in my apartment, my coffee's gone cold, dishwasher is clanking in the background and my boyfriend's brother Olly is over for a visit. We stayed up last night and shared some white wine and a lot of laughs. The previous night my Bobi stayed over and we watched American Hustle and sniffed each other's nails. Also last week my Bobi and her friend visited Rodney and I in our apartment. I cooked, we had some drinks, listened to music, joked laughed and even had a little sing song. All pain-free.

As always love to my beloved Endo Sisters.

XxxxX

Family Support

I have mentioned before in my posts how important I feel it is to have support from your family while going through the mind blowing, body ripping, emotionally draining fight that can be Endometriosis.
Now I say "family" but this dynamic can come in all shapes and forms. You don't need to be blood related to be family.

Family to me are the people who love you unconditionally but will put you up on your bull without qualms. They are the ones who will comfort you and laugh wildly with you at inappropriate things. They never judge you, but accept you for who you are and you likewise them.

For me, my family are the ones who I can be 100% open with. I'm not afraid of who I am with them. My illness is not a seen as a weakness but when I have bad days there us no guilt there. I guess it's acceptance of who I am, entirely. My quirky sense of humour, shyness, choice language and intense passion for Rugby are all parts that join up to make me the person I am and to not have to answer for that is to feel safe and wanted.

It makes going through this battle with my body more bearable. When I feel as if the pain will never end and like pieces of me are literally being torn apart. When I'm burning up or passing out or my legs refuse to hold me anymore because all of me energy is focused on getting past this, getting through and for me avoiding the hospital because I am sick and tired of the "routine", knowing I have the love and understanding of my family, my supporters, the people I would trust with my life really does make all the difference for me.

Even if you only have one person that you feel this way about. It's one person who completely understands you and accepts you for you and that is priceless.