I made a choice a few weeks ago to stop taking Tramadol which is a fairly strong addictive opiate. I stopped cold turkey and was fine other than in increasingly hard to manage pain. I was then put on Gabapentin which is not an opiate and helps with nerve pain. These painkillers do not help as much as the Tramadol did but they are less addictive which I am much more comfortable with.
Flip side of this is I have had such an increase in pain or at least my awareness of pain recently. My bladder is contributing to a lot of that pain and hopefully the new painkillers will help with some of that. I can see that some of my internal organs are becoming more and more affected by my Ehlers Danlos Syndrome and I am increasingly aware of how much more limited I am and how much I am hating losing my independence and my confidence. I hate going anywhere alone now and feel anxious a lot of the time.
I intend to ask for help with feeling like this, I have noticed I am much more bad tempered recently and I am guessing this is due to the increase in pain and medication changes. If I have been short or grumpy with you I apologise. I am working very hard on not feeling like a burden and keep telling myself I am still useful and worth something. This is raw honest truth, at the moment I struggle to feel like a proper mother and it’s hard hard pill to swallow (and I swallow a lot of pills a day).
I remind myself daily this feeling is temporary and that I am wanted and needed. I don’t need anything from anyone I just want to say sorry if I’m not my usual self. I just need a bit of time to accept the things that are happening to me. To accept I can’t change most of these things and to figure out where to go from here.( just realised it’starting to sound like the 12 steps here).
I even recently had so much more independence. I was volunteering a lot, planning for the future and feeling more confident. That’s all gone now, I barely volunteer anymore, I dont feel i can plan much in case my bladder gets worse or I’m in too much pain. My plans keep changing and I’m not adapting fast enough and I’m not happy, I so want to be. I want to accept my life as it is and stop being so bloody ungrateful for what I do have. Stop thinking about what I’m losing and look at all I have got. I wish it was that easy.
So I guess I’m saying sorry, I’m probably very self centered and tetchy lately and I might be for a while yet. I’ll be fine soon as I always am so just give me some time and some understanding.
I want to go back, back to when life was simpler. To when I didn’t feel so much pain and didn’t feel so sad. Back to when I didn’t feel so worried all the time, when we didn’t get letters from hospital appointments all the time. When we didnt need to make physio and doctors and hospital appointments, When I didn’t feel so separate from other people, I don’t know how to change this. I really hoped things would get better but they aren’t. Getting out of bed is hard when you know you have to face a day in pain and worrying about what is going to come in the post.
There are a handful of people in my life keeping me sane, they are the ones who make me remember why I’m still trying to do things. The smallest things they do mean everything to me right now, I don’t think I could explain how important those people are. My life and my capabilities have changed a lot lately, i am unable to work as I am in too much pain and exhausted and dizzy. I feel like I’m losing more and more of the person I used to be. I am so grateful for what I have so please don’t mistake my sadness for anything other than being so tired of worrying. I have so much to be happy and thankful for but I’m struggling.
I wonder if I can get used to who I’m becoming and if I can enjoy my life in the same way. So much of my self worth is tied up in the idea of working even as a volunteer. I don’t even know why I’m writing this anymore, I think I’m tired and sad and confused about what path my life is taking. I need to give over control to whatever is going to happen, things will either stay the same or get better. I have never written this blog for sympathy as I have said many times its for me and for others to read and to not feel alone in how they are feeling.
I do have hope that my brain will catch up with the rest of me soon. I have so many wonderful people in my life I am lucky. Unfortunately it’s true that at times we pay more attention to the 1 or 2 negative people instead of the many positive supportive people in our lives. I want to be less snappy and more positive, I want to enjoy Christmas with my little family. I’m going to make an effort to enjoy things and see the positive in everything because I don’t want to carry on this way. My aim for the next few weeks is to enjoy my family and friends and try to remember that worrying won’t change anything and that it’s okay that I’m not feeling happy because things will change.
Robin was diagnosed with Gender Dysphoria this week. It’s the first time we have been given a ‘name’ for her decision to live as a girl. It’s been this way for a while now and I coming to terms with the life of living with a child who chose to live as a different gender to the one they were born.
For the first time this week I openly have said I wish she has just stayed a boy, I don’t mean I don’t support her decision but it’s changed a lot for me personally. I feel very conscious of what other people think and of how many people would do things differently to us. The psychologist told us two weeks ago to continue to support Robins choice and that it would be harmful not too but that doesn’t stop people judging us and disagreeing.
I am worried about the future and how difficult it will be for Robin and also for Elliot and Lewis. I feel like something has shifted in me and I feel judged and self conscious all the time. I never know if someone we know or meet will feel uncomfortable with how we are supporting Robin and how to deal with that situation. I feel on edge most of the time as though I have to defend her choice and our decision to support that choice. I’m tired, I want to go back to when it was easier.
Robin seems happy though, she still wants to be Doctor Who and watch Star Wars and she loves My Little Pony. For her not much has changed, she just wants to be a girl. I’m so glad she isn’t aware of all the controversy going on around gender dysphoria in children in the media at the moment. I just want her to be happy and safe. Although I sometimes wish she didn’t feel she is a girl that is purely for selfish reasons because i dont want the difficulties that come with it. So yes it’s not something anyone would choose for their child and it’s not an easy path for her to take but I will support her right to be happy in her body to the ends of the earth.
That’s right your going to enjoy this I’m not going to complain or moan once.
After a few weeks of feeling not good enough in every part of my life I can honestly say I felt successful today. Granted it was just a meal out with the kids but still. I got the bus with two of the kids on my own 3 times in one day. We went for dinner and everyone enjoyed it and I felt content, I felt like a normal parent.
Right now Elliot is with Ant at his grandparents and the other two kids are sitting on our bed watching films with me. This part, the sitting with your kids cuddled up eating popcorn and watching films is everything I imagined parenthood to be. I feel content again.
Looking back over some of my previous blogs I wondered if I give the impression I don’t enjoy parenting. I do. I love the kids and I love being a mum. That feeling in your chest when your child snuggles up to you or runs up to you excitedly to show you something they have made or done. God you can’t even begin to describe that. That moment never gets old and it never gets tired, I smile even when I think about their faces.
So basically today was good, I was proud of myself and the kids. I felt a lot of things today love, pride and yes tiredness but most of content. It’s the little things honestly it is, they make ALL the difference.
I want to be happier than this, I want to be more patient with my lovely children. I am a good person and I love my family but more and more I am snappy, impatient and crabby with the people who I love the most. There is only one thing in this world that can make me stop talking, that can make me be quiet and pull away and that is pain.
I am so tired, really really tired. This pain is too much and I am starting to wonder if i’m a wimp, why can’t I handle this pain. I would be a different person without this pain. I would be a better wife, better mother and better friend. I don’t need to be told I’m good enough or how brave I am, I know that I am trying hard and I respect myself for that. I want to be better though. This is too hard, at times its too hard to smile and pretend I’m not feeling sick with pain, I want my life back. I am not brave, I’m a fraud, i am a master at pretending but my mask is slipping and I am tired. If I concentrate really hard i can cope but this is taking up most of my energy and leaves me less than I used to be.
It makes me so angry to know I’m not entitled to help with the pain other than pills, I don’t want more pills. I want other ways to deal with this i know there is so much pain support out there and I can’t access it due to where I live. It is not fair to have to choose between being in a lot of pain or being in a lot less pain but drowsy and spaced out from painkillers. Where is my happy medium, I was told today at the doctors that in cases like mine they don’t intend for me to be pain free but for it to be ‘livable’. I will give them thier dues this is livable and there are many many people who are just living, just getting by in pain, I am not unique in any way in this.
So I’m rambling again because this distracts me. I underestimated how common it is to live in pain everyday. I hope there is a solution to popping stronger and stronger pills as time goes by. This is not the future I imagined but I’m evolving and maybe I’ll petition for a change in accessibility for pain management services. At least that would be doing something positive.
I’m not alone, I’m lonely. I’m lonely because I am the only person inside my brain. Currently inside my brain there is a lot of overthinking and fear going on. I try to explain what is in there but it’s hard to articulate, it’s a freaking mess in there. I am replaying all the conversations at appointments the last few weeks and figuring out outcomes for future appointments ( there is no need to do this but my brain doesn’t take notice of that). My brain is thinking about all the things other people might be thinking about me and the things I do. I am judging my own actions and ideals by my brains imagined opinions of other people. Some of this is reinforced by people’s behaviour but a lot of it is just my brain telling me I’m doing something wrong.
I’m not being self pitying I promise you, I just want to explain it has been mentioned to me a few times in the last few months that I’m not my usual self, that I’m not as bubbly as I used to be. I think this is because my lovely brain has chosen to have me believe that I need to change, that I am being judged for the decisions I make and that ultimately I am alone.
I spend a lot of time worrying about what other people think of me and the decisions I have made. I worry about the future for myself because of my health and mobility. I worry so much about the kids futures and especially lately with the appointments for Robin and Lewis. These appointment feed my brains penchant for catastrophising ( is that a word) I obsess over how we can help make things better and improve their lives for the future. Then I feel guilty for not being more grateful for the great things in our lives. Then I feel selfish for being upset about the difficulties we face when it could be so much worse. By the end of this I feel exhausted and sad but I get stuck in this cycle.
I want things to change, I want to worry less and live in the moment more. I will make effort to change things now as I am so tired of feeling this way. Again I want to reiterate I don’t write this so you feel sorry for me I promise. I write this because it’s like free therapy. I write because there is a glimmer of hope that maybe someone will read this and not feel alone in how they feel. That it might help someone one day to read that someone else felt alone even when surrounded by people who love them. That it’s okay to be overwhelmed and to hate your brain for choosing to make life feel much harder.
My mind is my own, but we do not see eye to eye lately. I hope one day to be on the same page again but until then at least try to be kinder to me please brain.
Today we went to CAMHS you were observed and talked to. The outcome was that they think your Autistic. They gave us leaflets and websites to look at to understand you better. We have always known this was a possibility. If it’s true that your Autistic like they think you are you should know these labels aren’t all you are. Autistic, Transgender, Dyspraxic, Learning Disabled, you are so much more than all of these labels. You are Robin, charming, funny, beautiful, excitable and precious. Your ours. You are the sum of all your parts but most importantly you are amazing.
Watching you be observed today I looked at you through a strangers eyes, it hurt to see them looking at you searching for signs and clues of why you worry so much. I wanted to tell her all the things about you that make you amazing, but it was important that she saw what makes you different. I love that your different but I hate that you are scared so often aad that the world is confusing for you at times. I hate that we need those labels to get you help at school and to explain your differences but I accept the need for them.
I suppose I write this to try to empty the part of my brain that is trying to work out the jumble of feeling I have. I write this because I can’t tell you yet that none of those labels attached to you make you any less than anyone else because you don’t understand any of this yet . You ask me often why you can’t do the things other children your age do, you ask me why you feel scared and struggle to cope with your feelings. I don’t have an answer for you, all I can tell you is you are brilliant and brave and funny and we will help you anyway we can.
Parenting it’s this magical thing that lots of peole aspire to do well. It’s painted as this glorious, life altering rite of passage. We are supposed to be blessed, grateful and honoured to be have these bundles of perfection and joy given to us. In reality for me at least it’s all those things but with masses upon masses of guilt, fear, mistakes, blind panic and confusion mixed in. I love them but my God they terrify and frustrate me.
Sometimes I feel like I’m walking a tightrope between insanity and ecstacy. I love them so much it hurts but they drive me insane. I sometimes feel being a parent is a bit like being Bipolar. When it’s good it’s amazing and like flying but when it’s bad they reduce you to a sobbing mess. The picture of parenting that is presented by the media is so unreal to me, it serves to make me feel inadequate and a failure. The majority of parents are doing their very best and why is nobody telling them that their best is enough. If your sitting there wondering if your best is good enough I promise you it is. If your kids are warm and clothed have a roof over their heads and you do your very best to ensure they are happy then I award you an A*. Look yourself in the eye and say I want the best for my children and that is good enough.
Yesterday I didn’t feel good enough, i tried my best but I felt I couldn’t control their behaviour and that people were judging me and I was out of my depth. I came home and cried, i cried because I was embarrassed that they had misbehaved in front of other people and I cried because I felt like a failure. Today I woke up and I remembered how hard i tried and I decided I didn’t fail. i
I persevered, I didn’t give up and bring them home early, I know I was judged by others but I told myself I did my best. My best is good enough and it was good enough yesterday. It is only by the standards we set ourselves that we feel like we fail. So if your beating yourself up and you find yourself lacking ask yourself did you try your best because if you did then you cannot have failed.
I always wanted children, I wanted 10 of them at least. Yes I set about this plan a little earlier than most and with a blind confidence that I would excell at motherhood. I laugh at my naivety, I literally laugh out loud at myself. I’m not a bad parent but I’m not a great one like I envisaged either. I’m not feeling sorry for myself or looking for someone to tell me I am a great parent. Honestly I am absolutely over the moon that I am good enough. Because in the world we live in Education, Economic position and home ownership etc is placed so far above what is important to me. There is nothing wrong with aspiration and wanting the best but for me manners, caring, compassion and love are so much more important. I want my children to be financially safe and all the other things that make life easier don’t get me wrong. But more than anything I want them to be kind. They are kind, compassionate and loving, they are also difficult,frustrating and at times annoying. Lets be honest all kids are.
So in the last week there has been a lot ofmedia attention given to two stories about ‘transgender children’. One child has been removed from their mothers care and another child’s father has had an article printed in the Daily Mail about his anger at his ex wife allegedly forcing their child to dress in female clothes. When you read these stories please remember they are one point of view. They do not tell you the full story.
In essence what this has done is led me to fear even more for my family and our child. Robin came to us with questions and asked to be able to dress as a girl. We sought advice and were told to allow this and let it play out. That was 8 months ago and Robin still dresses full time in female clothes and tells us he is a girl not a boy. Who knows at this age if this is permanent but what I do know is that because of two stories given so much media attention every parent who’s child feels they want to dress in a different gender clothing is more fearful of what others are thinking.
We fight for our children’s right to feel happy and comfortable but we are portrayed as people who are forcing a child to behave and dress in a way they are not choosing. The media is feeding people’s fears of anything different from the perceived norm. I wish I could understand what people are so afraid of.
The charity Mermaids supports parents to help their children through this journey. Today’s article accuses Mermaids of bullying and interfering, from all I have seen all they have done is SUPPORT. Without Mermaids many parents would be alone, scared and confused about how to support their children. I am disappointed and saddened and in all honesty I’m scared. I’m scared that people will never understand why we are supporting Robin’s wishes and I’m scared that all it takes is one judge or newspaper to take a view and try destroy a family or a charity.
So all this rambling has a point I promise, please please remember there are multiple sides to these stories, please don’t assume the one you are reading has all the facts. I’m not pretending I have all the facts but I know my child and I have met children like Robin and they deserve better than the media portrayal that their gender issues are getting.
‘Stubborn’ is a word some people would use to describe me, I can be my own worst enemy. When I decide I’m doing something I’m doing it now not later. I’m impulsive at times and I’m impatient always. Being capable and able to do everything is important to me, I want my independence and to look after myself. It has become slowly more and more apparent that i will have to give up some of my stubborn ways. I need more help than im happy to accept and i am struggling more than i would like to admit most days and honestly it sucks.
It’s harder than i ever thought it would be to accept my limitations and any new struggle highlights the kind of future i may have.
Having a chronic illness has taken my career away, my confidence, my independence and my self worth but it has given me insight, determination and stubborness. It doesn’t tip the scales, I haven’t gained more than I have lost. I will try to see the good in all of it and I’m sure I will eventually. I’m not bitter not at all, I’m just sad. I love my family and i love my work, i dont have the energy for them both a lot of the time lately. There are big and small things I want to do and it doesn’t always feel fair that I can’t or don’t feel able to do them.
Sometimes I feel like pain runs my life it’s almost as though it defines me. It decides more of my life than I do and it decides where I go how much I can do. It’s a control freak, a master of manipulation it’s my worst enemy.
So I’m going to give in a little and accept some help, I’ll listen when I’m told I’m doing too much and I’ll try to stop being so stubborn. Instead of running backwards and forwards trying to prove I’m contributing to society I will try to enjoy my family more. It’s not giving up or giving in it’s more like accepting changes and finding peace with that.