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 wife 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.
What did i ever do to you bladder to deserve all this trouble. My bladder is worse than ever, I now have a Catheter in my bladder for 10 days then we will see if my bladder will work on its own. My wee looks like muddy water, I have never known pain like it before. Looks like I never kicked the bladder infection I had before Christmas and it spread to my Kidneys.
The urologist last night said this is likely to keep happening. I keep seeing normality slipping away from me or at least the normality I wanted. In the grand scheme of things I know this is a small bump in a long road, but right now it feels like a mountain I need to climb over.
I feel like my body is giving up on me bit by bit and I’m pretty angry. Not much else to say really I’m just tired, angry and sad.
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 Ant and 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 not snap at my wonderfully supportive husband. 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.