“Surround yourself with people who know your worth. You do not need too many people to make you happy, just a few real ones who appreciate you for exactly who you are.”—Unknown (via onlinecounsellingcollege)
I have discovered that listening to Jeff Buckley while stoned in my back garden in the evening sun is actually heaven. I am so insanely blissed out right now and looking forward to tomorrow like crazy.
Had a thing happen I don’t wanna get into to be honest because it will kill my buzz but really I know I’m gonna be glad it happened in the long run. Whatever happened has happened. It doesn’t matter anymore. The present is my bliss and tomorrow is my excitement.
Reminding myself of this a lot at the moment. I can be so steely and hard with my defences up. I have to stop being so afraid of letting others close enough to hurt me. I’ve been feeling that pain and its actually nice to know I’m still capable of feeling and being hurt. I’m not some drudge, or robot. I realise more and more I’m capable of feeling a great many things I haven’t felt in a long time.
“I am trying to see things in perspective. My dog wants a bite of my peanut butter chocolate chip bagel. I know she cannot have this, because chocolate makes dogs very sick. My dog does not understand this. She pouts and wraps herself around my leg like a scarf and purrs and tries to convince me to give her just a tiny bit. When I do not give in, she eventually gives up and lays in the corner, under the piano, drooping and sad. I hope the universe has my best interest in mind like I have my dog’s. When I want something with my whole being, and the universe withholds it from me, I hope the universe thinks to herself: "Silly girl. She thinks this is what she wants, but she does not understand how it will hurt.”—
“You take the bad with the good. Rise up through it. Live in the midst of it. It’s the bad that lets you know how good the good really is. Don’t let the bad leave you thinking like there ain’t no good. There is, and lots of it, too.”—Charles Martin (via onlinecounsellingcollege)
“Life is too short to wake up in the morning with regrets. So love the people who treat you right and forget the ones who don’t. Remember, too, that everything happens for a reason. If you get a chance, take it. If it changes your life, let it. No-one said it would be easy. They only said it would be worth it - and it is!”—Anonymous (via onlinecounsellingcollege)
I just found out my little brother graduated with a 2:1 in English!!!! I am literally bouncing in my seat happy! So proud of him. He is a bit of a spoonie himself with similar, albeit milder, symptoms to mine.
I’m also happy because I spent at least 15 hours proof reading his dissertation, going over it with a fine tooth comb and I was really hoping he would get a 2:1 because it was a very good essay. He analysed the American Dream in the 20th century and if it was achievable or brought happiness to anyone. He looked at three decades, the 20’s, 50’s and 80’s as reflected in Gatsby, Revolutionary Road, and American Psycho.
Anyway we’re all really proud. I think we are going to have takeaway and a party to celebrate the news.
My goal now is to try and get to his graduation in November. Its a very long ceremony and a little high pressure because he really wants me there, but I think it will be achievable. I just need my friends and family to keep taking me out and helping my rehab like they are now. Everyone has really stepped up lately and I’m thankful :)
1) I hit level 49 on FFXIV (NERD ALERT!) I am one level away from being able to join my guild in end game content so that actually makes me really happy because they are becoming really good friends.
2) I ate an entire roast dinner my mum made and it was delicious. Lots of veggies too and its settling really well tonight.
3) Mario Kart party tomorrow with friends! Might be meeting some new people too which will be cool.
4) An old friend got in touch with me who I haven’t spoken to in quite a while and we are going for a coffee nearby and then watching films at mine on Wednesday.
5) My other friend who lives in Kent is coming down and we are going to the park by my house with a couple of people to drink hooch, smoke weed and if the weather is nice sunbathe.
It is amazing what going into remission is doing for me. My Kent friend and I are even looking into me getting a passport so that if I keep going forward at this rate we can book flights to Jamaica to stay in her Dads apartment out there.
Travel has always been an issue for me due to my illness and anxiety but its something I’ve longed for most of my life. I always wanted to go somewhere tropical as well as see all the big cities of the world. I’m an architecture and museum geek but something about turquoise seas and white sand is calling to me. I figure life is too short and I don’t know what will happen so what’s the point in worrying anymore. I’ve always been responsible and its time I had fun :)
Its just really nice I can be social again. Thank you Mary Jane!
“I don’t pretend to know what love is for everyone, but I can tell you what it is for me. Love is knowing all about someone, and still wanting to be with them more than any other person. Love is trusting them enough to tell them everything about yourself, including the things you might be ashamed of. Love is feeling comfortable and safe with someone, but still getting weak knees when they walk into a room and smile at you.”—The O.C. (via onlinecounsellingcollege)
1. Be gentle and kind
2. Show respect to everyone you meet (whether you think they deserve it or not)
3. Pay attention to the little things (often that makes you stand out from the crowd)
4. Do everything wholeheartedly, with passion and love
5. Be flexible, adaptable, and open to change
6. Don’t complicate your life with lots of oughts, musts and shoulds
7. Encourage other people to be all that they can be.
One of the harder things about being sick is the constant questioning yourself of the severity of your symptoms and whether you’re overplaying or underplaying them. It’s so hard to gauge how you’re feeling when your idea of ‘normal’ or ‘okay’ is so different from…
I debated on writing this post because it is extremely personal even for a blog that is essentially my diary, but I voted for it because this blog is an honest reflection of my journey with an illness and this is related to that.
I had been with my partner for the best part of eight years. We had a few breaks as he moved to another city for a while, but he moved back and we were very happy in spite of my worsening health.
I have been sick since I was fourteen years old so he has known about my illness since our first date when he took me to a restaurant and I had to explain why I could only sip water. I thought he would think I was strange, which he did, but he looked on the bright side and said it was nice he only had to pay for one meal.
As things became more serious I also told him it was very unlikely I could conceive or carry a child. I have little interest in spending hundreds of thousands of pounds on fertility treatments because I have an undiagnosed mystery disease. If what I have is somewhat hereditary I do not want to risk giving it to my child. They cant really screen eggs when they dont know what they are looking for. I would also hate to get pregnant and lose it because I cannot nourish or carry the child due to my illness. On top of that I have PCOS and rarely ovulate. I have chosen to accept the fact I am unable to have children naturally and assumed if I went into remission and felt like I wanted children I would adopt.
Anyway, my partner always said this was fine. He seemed to have little interest in a family and told me he was fairly certain he was infertile too, so we stayed together and grew closer as a couple.
Eight years is a long time to devote yourself to someone. To love them, cherish them, learn everything there is to know about them, or so you think. Eight years is also a very long time to be deceived. After the events of this weekend I can only assume I never truly knew him. He was finally honest and certain issues came to light and we parted ways.
Last year I spoke about moving out and getting my own place. This was put on hold by my ex, who wanted me to wait and move in with him. He kept saying he was saving for a deposit and would then end up spending the money much to my annoyance. I repeatedly asked him what was holding him back and was always given excuses and assurances I was what he wanted and he was just bad with money and it would all happen soon.
As we approached two years of stagnating at our separate familial homes I asked him what was really holding him back. He became uncomfortable and when pressed said he had been thinking about children for some time and thought he would really like to have one of his own. I said “But you know I can’t give you biological children right?” and he said yes.
I brought up adoption and was met with silence. In previous conversations he had said he wasnt sure he could love a child that wasnt his, and he thought adoptive children had excess baggage he didnt want to deal with. So my mind swirling I affirmed “So you are leaving me because I am barren?”
I asked him later “But what about your own infertility? You refused to take the fertility test we bought. So arent you just throwing me away on a maybe? How can you have loved me if that is the case?” More silence and denials and repetitive nonsense phrases until he finally told me he had been lying to me. He had taken the fertility test and was the low end of normal. He had known some time but didnt want to tell me.
"So you wont consider adoption?"
"Your illness won’t allow you to parent properly anyway. You get too unwell."
I didnt even try to counter that with the fact I’m potentially entering remission and with a year or two of rehabilitation (if I am indeed entering a remission) I could be relatively normal again. Parenting would be an option. If he can’t see my value as a sick person he doesn’t deserve me when I am well.
I dont know how long he would have kept the relationship going if I hadn’t pulled at this thread. He has been actively preventing me from achieving independence based on the lie that he planned to one day settle down with me and build a life. I said before he moved home not to come back if he didnt want this to be a permanent thing. I begged for him to let go of me two years ago if children and a healthy partner were what he really wanted. He told me I was the person he loved the most. That life without me had little meaning. All lies so I would remain a bed warmer while he decided what he actually wanted.
He knew all along he would probably end up leaving, but he didnt have the courage to admit it, or the selflessness of real love to allow me to move on and be happy. I don’t even know who he is anymore. He was leading a double life when he moved cities cheating on me, lying to me for years, and still I forgave him and allowed him a shot at redemption. I rebuilt my trust and faith in him brick by brick, which is doubly hard when you are housebound and it is very easy for your partner to go places without you being able to verify whether or not they are actually going there.
I ignored and excused his issues for years. I justified and defended his actions to myself and everyone around me. “Oh he’s just insecure.” or “He’s got mental health issues, he needs my support.” His lack of ability to show love was the biggest red flag but he had me convinced it was all my problem.
So yes, the man I used to love is dead, and some guy who I don’t know took his place and lied to me for years, selfishly led me on and left me so he could find himself a woman with a functional womb. Because that is what you do to the love of your life according to the stranger who replaced my partner. He just wants the opportunity to have biological kids. Fair enough. Nothing I can do or say to that as someone who didn’t get a winning hand in the internal organ game. I’ll fold.
Truthfully I think he has twisted things in his mind to make his actions more justifiable. He has it in his head that I have never wanted children which is simply not true. I always wanted to adopt children, ever since I knew adoption was a thing. I used to cry in bed at night as a child imagining kids who felt unwanted in foster care or orphanages. It broke my heart and still does. I always wanted to give them a home. I dont think genetics could make me love a child more or less.
However, because of my disability I am not sure adoption would be an option unless I was very wealthy and had some assistance at home. If I was in remission it would be okay with a strong and supportive partner, but during a flare it would be very difficult. But saying that he could have biological kids with his wife, and one of them could end up disabled anyway. Illness is something that comes for us all. We could all lose our health permanently at any time. So he could still end up struggling and essentially lone parenting.
But aside from adoption I have also struggled to fully come to terms with my barren womb. I logically know that my uterus does not define my status and a woman and should not make me any less worthy or lovable, but then things like this happen… I never expected it even though it was a nagging worry at the back of my mind. It was kind of like being a kid and worrying about whether or not my parents would divorce.
But of course he never read it. He never read anything I wrote. He was not ever interested in my work as a writer.
Anyway, since learning of my PCOS at 18 and knowing I had issues since before then because I have periods about twice a year on average even when fully in remission, I just decided to lean in. Some people aren’t meant to have kids. I could mope about it, just like I could mope about my illness, but what is the point? Instead I focus on the positives to not having kids and choose to see myself as child free, not childless. I can do wonderful things for kids in care without being a parent.
At the end of the day, life is what you make it. My ex didn’t have the courage, spirit, or heart to love me beyond my capability as a brood mare. I can do better. He hands me lemons, I will take those lemons and make red wine. He’ll say how the fuck did you make red wine out of my shitty lemons and I’ll say because I am fucking amazing like you don’t even know.
I hope next time he doesnt string some poor woman along like he did me. I hope she gets a fertility check in the first six months of them dating so she doesnt waste years of her life caring for someone who would ultimately view her as disposable after devoting near enough a decade of unconditional love toward him. Because while he may only see the value in a woman with a functional womb, I only see the value in men with a functional heart and soul of which he has neither.
Next time I will do better in my choice of partner and I know will overcome this horrible experience. Rehabilitation is my focus and that person is now out of my life for good. If any of you spoonies would like to send me some messages of encouragement privately they are always appreciated. You guys are like family and I know you understand me.
“Sometimes we just have to cut off the dead branches in our life. Sometimes that’s the only way we can keep the tree alive. It’s hard and it hurts, but it’s what’s best.”—Nicole Williams (via stay-ocean-minded)
“If you look at the fact that you have a roof over your head, food to eat, that you are young and beautiful and live in a peaceful land, then no, you have nothing to be sad about. But the fact is, we are not only a physical body, we have souls too, and sometimes our souls get sick. If you break a leg you don’t just say ‘I have no reason to have a broken leg’ and ignore it; you seek help. It’s the same when your soul gets hurt. Don’t apologize for being sad.”—My doctor when I told her I had no reason to be sad (via jessicapshaw)