Catch up

I guess I must first apologise for not writing for 10 days. What a 10 days it has been.  There have been some really lovely times and positive steps and some not so lovely times and positive steps but life is nothing if it isn't varied!

Last weekend my husband had the whole weekend off (HOORA!) and we decided we were really going to 'make the most of it'. Our local children's centre runs a group every other Saturday called 'Saturdads' which Tony has always enjoyed taking our daughter along too (Whilst I'm sure firstly it is because it is such a nice bonding experience between father and daughter I am quite sure the bacon sarnies play a role also!) Due to the nature of Tony's work he works almost every weekend so isn't able to take her consistently but whenever he is off they always make the effort to go.

I used the time to sit and make some bread, I've really thrown myself back into making bread because of the great sense of satisfaction it brings me. Unfortunately because of the pain in my hands I am unable to beat the c**p into the dough as perhaps once I would (any frustrated bread maker will relate with this!) but because my wonderful man brought me a fantastic food mixer (with dough blade!) for Easter bread making is not beyond me.


In the afternoon we went to our local farm shop and after a mooch about and a cup of tea we sat outside for an hour. I sat watching the chickens and talking at Tony about animal welfare and responsible food sourcing (these were very happy chickens I might add!) and Amelia-Rose played on the climbing frame. I say talked 'at' rather then talked 'to' because I'm really not sure how much went in. Poor Tony has learnt to put up with me and my ethical food shopping rant!

I was absolutely exhausted by the time we got home so what on earth possessed me to decide that was 'the' time to make a shepherds pie for the freezer is beyond me. Needless to say it ended in tears. Tears of sheer exhaustion! I wasn't especially sad just so so tired.

I don't like referring to what I experience as 'tired'. Tired is having a few bad nights sleep, this is every part of my body feeling like lead. I feel as if someone has literally sucked all the energy out of me and even thinking is too much. The cruel thing is though is that it's a 'tiredness' that does not allow you to sleep. It keeps you awake for hours through the night!

On Sunday Amelia-Rose and I went blackberry picking with a friend of mine and her daughters then we went back to her house to tea. There are people in life who just do your soul good and this friend is definitely one of those people. We had to take my mobility scooter but she never once made that feel like a problem. She completely accepts me as I am and I don't think she'll ever be able to grasp how much that means to me. It was such a wonderful afternoon followed by the most amazingly scrummy dinner. Sometimes when you're in a dark cave you find a diamond and she is definitely one of my diamonds.

For a while now I have been getting the most horrendous headaches and am experiencing constantly blurred vision and black spots which descend into my vision at the most inconvenient times! It's one of the reasons I have been enable to update for so long! On Monday I went to the optician expecting I would just get a prescription for glasses as I should be wearing them for reading anyway (I say 'should' because the last prescription I got 3 years ago I never filled. Bad Chloe!) The optician confirmed that my vision is blurred and 'not what it should be' and I do need a slight prescription but the problem isn't being caused by my eyes and he didn't write me the prescription.


This is something I should be able to take in my stride but I didn't. By the time I got home I was so worked up I rang my mum and cried down the phone for almost an hour. My brain was letting me 'feel' about my situation and holy moly did it hurt. I have been in very deep shock since my appointment in London but every now and again the enormity sets in and I am devastated, earth moving, world shattered devastated. I was furious with my body once again for not being straight forward. For most people if you have trouble with your vision you go to see an optician and get glasses but of course, no, my body would never allow something so straight forward. I feel like my body has let me down in the most cruel way. In my soul lays a free spirit desperate to dance, skip and celebrate her way through life but she dwells in a broken body. I read this quote recently and it sums up exactly how I feel "I got my head together and my body fell apart".


I could not write this blog honestly without discussing the emotional hurt that this disability has brought with it. Until 4 weeks ago I very rarely cried about my hips, I think I was afraid if I started I would never stop. Now though, I cannot control it. Out of nowhere I will find myself head down sobbing into whatever it is I happen to be doing.


On Tuesday for example, Tony drove me up to collect our daughter from school and I was doing ok. That is until I looked in the rear view mirror and saw him getting the wheelchair out the boot. With no warning the tears set in and I felt the darkness surrounding me. I don't want to be in a freaking wheelchair. I want to be like every other parent in the playground STANDING PAIN FREE to collect their child from school. I don't want the 'looks' and silent wonderings. I want to be WELL and Lord knows Amelia-Rose deserves to have a mother who can run along splashing in the puddles with her.

People think I am coping so well and generally yes I do. I have all my life had a sense of every hardship being there to prepare for something that is yet to come. We all have difficult times and I have always had a 'feeling' that one day everything would become clear and fall into place. That belief gives me a strength to always keep moving forward. Now though, I don't know. I am so tired of 'fighting' and 'getting through'. I just want someone to lay me down and let me rest. This has been going on such a long time now. When inner strength shouts 'This isn't it, there is more to come you just wait and see' I have become aware of the sound of despair 'Pain and exhaustion are your life now'.


I am now being seen by our local pain management clinic and I am very hopeful that together that partnership will give me some of my Chloe fight back. I have had two appointments now and each one has left me with a huge sense of hope. I have another in two weeks time. The lady I see is so very kind and compassionate. I can tell she really 'gets' it and is so affirming of how I feel. Yesterday she explained to me that because of the HMS my nervous system really does respond differently to pain, she said "Imagine most people have a cheap car alarm response to pain... well you have a Ferrari alarm" this perfectly summed up for me why I feel my pain is out of proportion. For example, last weekend I woke up with the tiniest cut in the corner of my mouth, through the week it became a little ulcer and whilst it is still that small little ulcer I honestly feel like someone has slapped me on the side of my face. The entire left side of my face is stinging. Ferrari alarm.


When I see her again in two weeks we are going to work on some relaxation techniques that she thinks I will find useful as I prefer a holistic approach to life. I am also going to start seeing her colleague who is a psychologist, quite rightly she observed that there is a rift between mind and body and there is room for some healing there. I know I need to forgive my body.


I have been told to imagine that with regards to my pain management I have a tool box and at the moment that tool box is pretty much empty. Apart from my pain killers (which I don't like taking!) Over the course of the next few months we will be adding a variety of tools to that tool box so when I do feel overwhelmed by the pain I have a whole host of tools to chose from. In that sense, life really can only get better.