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Positivity Isn’t Always the Answer.

I wouldn’t say I put on a brave face, but I like to think I keep a positive attitude, but again lately the mask is slipping. Another surgery in 8 days, more medication added to my daily routine. I am tired, I’m tired of operations, medications, appointments and keeping up a positive attitude. This next operation will be the 4th in less than a year and I’m tired of them and I’m tired of feeling the way I do. My life feels like week after week of sorting out mine and the kid’s medications, going to mine and the kid’s appointments, worrying about what is going on with mine and the kid’s bodies, the pain I and Robyn are in. This sucks.

There is nothing I can do to change any of this, and I know that but that doesn’t mean I can’t be tired of it all. It’s not like I don’t have a great life, I do. I have 3 amazing children and a partner who tells me every day that he loves me, I have amazing friends who are always there to listen. I don’t need more than that, but I do need less of the medical things. I would do anything for the kids, there is nothing that I wouldn’t do to help them and to try the medical problems they have from disrupting their childhood. I think having the same condition as them mean I know where they are heading, I know what might be coming for them. All the pain I have every single day could be their future and I hate knowing that more than anything in the world.

I spend a lot of time trying to be positive and actively trying to make the best of this situation for me and the kids but I’m really tired. The pain disturbs my sleep every night and getting out of bed in the morning is harder than you can imagine. I just need a break, mostly from my brain and the constant worries and planning of life around all the appointments. I talk to my friends a lot about the kids and my health and then spend a lot of time feeling bad for moaning at them and not having more interesting things to talk about. They are fantastic friends and listen and advise and I couldn’t be more grateful, but I wish I had other things to talk about, but all that stuff is my life. I am very aware that here I am complaining again but I have to get this feeling out or I will go crazy.

So, what can I do? I have no idea at the moment, September is a month of lots of changes the kids start a new year at school. Robyn started high school which caused her and me a lot of anxiety. She has already been bullied for her speech on her second day, her eyesight is declining all the time and she is having more and more problems with blurry vision. The pain in her legs is getting worse and her gastric reflux is causing her more pain her chest every day and there is nothing I can do. I try to keep positive for her and tell her I understand but all I can do is give her pain relief and worry about how much worse this could get for her. Can you imagine starting high school as a transgender child with eyes that are wobbling and turning in all the time, with a speech impediment and learning disabilities. High school is hard enough without all of that, I just want to take it all away for her. I’m her mother it’s my job to fix things for her but I can’t.

When you have children, you expect to worry about them, you expect it to be hard at times. I never expected the guilt I feel from not being able to make things better for them, I never expected to have to worry so much about their future. They may never pass exams or find it easy to get a job. Robyn will always find it hard to understand the world and the expectations of her from society. Her anxiety will make life so much harder for her and I can’t fix it. I am raising good, kind children but I worry that won’t be enough to make it easy to survive in the adult world. Positivity isn’t always enough; hope isn’t always going to be enough. So, in all honesty I don’t know where I’m going from here. I’ll keep trying to do whatever I can to make life as easy as I can for them all because that’s the best I can do. I’m not sure it’s going to be enough but I’m going to keep trying to have positivity even when I’m tired and I’m not sure if what I’m doing is going to help.

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High School Heebejeebes!!!!

I haven’t been getting much sleep lately, I think I am anxious about the coming return to school for the kids. Robyn is extremely nervous about high school, it’s a big change for her and she feels like she will struggle. The high school have made lots of accommodations for her like a lift pass so she doesn’t have to walk up and down the many, many stairs in the school and a pass for her to leave lessons 5 minutes before the classes change over so she can have more time to get to her next class without the corridors being full of other children.

I think it will be fine once she has got used to the swing of things but going up to high school is scary enough without being a disabled transgender child who is worried about people bullying her for funny eyes as she calls them, her speech, her learning disability or the fact that she is transgender. She is braver than I will ever be, I can’t pretend I’m not scared for her though. I reassure her daily that it will be ok and her confidence has been boosted a little by the fact her friend who is also transgender is starting high school with her.

Elliot is going into year 9 and is working very hard, he puts in a lot of effort at school and is really I interested in his science lessons. He doesn’t let his dyslexia hold him back from his dream to be a paleontologist. His knowledge of dinosaurs amazes me and he has shown a lot of maturity in his emotional intelligence. He has told Robyn he will look after her in high school and if anyone is mean to her he will protect her. I couldn’t be prouder of him.

Lewis is still in primary school going into year 4, he is nervous about his new class as he is every year but I think he will soon settle in. He has made lots of friends and his school reports tell me he is a happy, friendly, superbly well behaved little boy. He is such a loving child and he is always looking for hugs and cuddles which I am happy to oblige as they are growing up so fast who knows how long I have until he doesnt want to lie in bed cuddling watching movies anymore.

Times like this when life is busy like this week with 4 hospital appointments in 4 days taking a little time out to cuddle and chat with Lewis is exactly what I need to remind me my life isn’t all appointments, medications, school meetings and stress. Life is so much more than that but it’s hard to remember that at times. I have loved having so much time with the kids since its the summer holidays. We have lots more fun plans to come and that’s what I’m focusing on for the next few weeks.

More and More Medical Misadventures

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.

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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. robyn teeth 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.

Feeling the Fear Decrease

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.

 

 

Very late resolutions. 

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. 

Painkillers and apologies 

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.

All i want for xmas is Time Travel. 

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. 

Gender Dysphoria !!!

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. 

Your going to be pleasantly suprised

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.

My mask is slipping. 

​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.