My permanent sacral nerve stimulation device was fitted almost a month ago and I’m going through the settings to find the best programme for my bladder to work properly. these implants are very expensive and I am very grateful for the opportunity given to me by the NHS to have a life changing device. I am already feeling the benefits of much less pain from my bladder which is fantastic. I carry my battery around with me all day everyday in case I need to turn the device off at any time. It’s become second nature to have it in my bag wherever I go.Life with children with EDS can be at times stressful in the last few weeks we have had 3 opticians’ appointments with Robyn due to a turn returning in her left eye. She had new stronger glasses to try to correct the turn but this has been unsuccessful so she has been referred back to the hospital to see if we have any options left to try to fix the turn. The appointment came through for next week already which is fast. Surgery is an option but Robyn is not keen on having a third eye surgery. I also found out she doesn’t have proper 3D vision as she should have and there is nothing that can be done about it which is a shame but as she will never have been able to see any differently, she will never know any difference. She has 2 hospital appointments in the next month for her dental problems. She is waiting for surgery to remove 4 teeth that are stuck up in her gums which you can see in the picture below, then she will have 2 years of braces to try to get herteeth into the normal positions. She is also being referred for counselling to deal with her anxiety which she has suffered with since she was very small. So, shehas definitely been keeping us busy lately. As for Lewis he has been referred to Endocrinology to see if he fits the criteria for growth hormone treatment as he is still groeing at a very slow rate. He was also diagnosed with severe constipation due to EDS this is a common problem for EDS patients as the condition can cause the gut to slow down its usual processes. He has been prescribed two medication for long term use. He had a week off school while we gave him a ‘clear out’. This is likely to be a lifelong problem for him; I know that problems related to them having EDS will probably crop up throughout their lives which is a shame for them both as the condition can affect many internal organs and many of the joints in the body. Robyn’s pain has been increasing lately in her legs so we are going to try some new physio exercises and I have been trying some massage to see if that helps. Every night she takes a hot water bottle to bed to ease the pain on some of her joints. I wish I could take away all of the problems the kids have, give them a more ‘normal’ childhood. They just get on with it and other than the pain Robyn suffers they hardly complain about all the problems they have. Im proud of how they put up with all the medication they have to take and the symptoms they put up with. All three of the kids are good, kind and helpful and I’m proud of them all.
For almost 3 years I have spent so much of my time worrying about what people think in regards to Robyn and her choice to live as a girl. I have struggled harder than I could explain to anyone with the fear of judgment and blame. I have always been supportive of her and understood that this is who she is and that she hasn’t changed, she is still my funny little child. She is still Robyn through and through, she still loves Dr Who and being bossy. I never felt like some parents do that I had lost my son, I didnt feel like I gained a daughter either because Robyn was still Robyn. All I ever felt was fear, fear of other peoples reactions, fear of her future just worry after worry.
Yesterday something happened, I sat in a school assembly and watched Robyn get an award for her huge improvement in English. She has been behind in education her entire life due to Dyspraxia, she has always worked extrememly hard and never given up when she found things difficult. Yesterday I was told she has passed a mock SATS exam in reading. This is huge, 6 months ago we didn’t think she would even take her SATS exams as she was expected to fail them. Since moving school and feeling more accepted and comfortable she has made huge leaps in her education. I am happy to know I made the right decision for her when she asked to move schools.
This was a lightbulb moment for me, maybe this is what she needed all along. She is thriving so much more now she is confortable in her gender expression. So I felt a sense of peace with the fear, I know it will still be there and I will always worry about her future as a transgender person but I am choosing not to worry as much about what other people think. Watching your child thrive is all a parent could wish for, yesterday gave me a new attitude towards the fear of being judged and blamed.
All that matters is that she is happy and comfortable, when i look at her happy little face it reminds me we are doing the right thing. How can making your child happy be wrong. How can letting her feel comfortable in the skin she is in be a bad thing. I will balance my fear against her happiness and I know which one will always come out on top from now on.
Life is anything but normal but i haven’t felt the need to write about it much. Having lots of tests at the hospital at the moment but not worried about it anymore. My bladder looks healthy and I’m starting some medication to hopefully help some of the problems with it. Kids are all happy and trying hard at school, what more can we ask for from them (other than to stop fighting, whinging, moaning and generally being a pain in the arse). There is the referral going through for Robin to Tavistock who deal with gender dysphoria in children so that’s all in motion. Not many hospital appointments for the kids. New paediatrician is fantastic so everything gets done without me chasing it up which is great.
If things are so settled or as settled as it gets in this house I wish I knew why I felt so unsettled. I feel as though I’m waiting for the other shoe to drop. It’s disconcerting to have things so in order and to still feel such a lack of control, maybe life is so often more stressful than this that my brain hasn’t caught up yet. Life can stay this way though if that suits the universe’s plans I don’t mind a bit of semi normality. So I guess I don’t know what I’m writing for really, no news to impart, no new information for me to try to understand by writing it down. I think it’s become habit now to write when I’m thinking.
I woke up early today to lots of snoring going on in the house, some rather cute and some more sort of house shaking. I went round the rooms checking on everyone, there is something beautiful about being the only one awake and getting to sneak into the kids rooms and watch them sleep with the sunrise coming through the windows. That is until they stir and you exit the room as fast as you can offering sacrifices to the gods so they don’t wake up yet. Sometimes you need a little reminder that life, time and things you will want to remember are going by while your spending time worrying and planning.
Relax more, look around and press the pause button that should have been my new years resolution. Ah well it’s never too late to start is it.
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.