Freedom

Isn’t all it’s cracked up to be. Connors hopefully enjoying his first half day at nursery. I’ve put it off for months even though I needed help. Now I’m sat at home alone listening to the washing machine on a spin cycle. I am bored senseless. His been there almost 3 hours now and I already have my shoes on ready to limp out the door and go get him. Don’t get me wrong I am more than happy to have some time to myself I even managed to do some of the housework. But now the house is just too quite. I am sure that once I get used to being able to pee without a 2yr old trying to pull up my trousers ill settle down a bit and maybe even attempt to make some friends or be really daring and have a cheeky little nap.


The thing people don’t understand when I say about my friends or the lack of is that keeping friends when you have a child is hard enough. Your no longer fun you, pretty much always smell of sick, and instead of a night on the town all you want is to sleep for more than 3 hours without having to do an arse change. Needless to say most my friends disappeared as soon as my bump arrived. Having a child and having EDS makes friends almost as rare as an honest politician. On top of the fore-mentioned there is also the different “elements” of the condition. I’m not just talking about the unsightly supports, the crutches or embarrassing “problems” in public but also the mental and emotional aspects of EDS. If they can get over the physical problems the mental ones are normally the thing that makes them skip my name in the phone book. Depression, anxiety, fatigue, pain. Most people don’t understand how isolated being disabled or being a parent can make you feel. Especially if they don’t have any experience of it. I’m not bitter or angry or even that upset about it now. I have always liked my own company. I just wish that instead or someone thinking”oh no I won’t invite her, she can’t do it” I would rather they let me decide after all it’s my disability, my choice. And just because I have said no once don’t think that I’m always going to say no, maybe the last time you was kind enough to ask I was laid up in bed where as this time I’m ready to shake my booty till something pops!!

Making the effort makes all the difference

Yesterday was a good day. I got a lay in thanks to my lovely partner. Managed to get most the housework done, while my partner got the car cleaned ready for our road trip today. My mum is also disabled due to EDS tonight she will be going to her first concert in over 20 years. Why? Because someone outside the family actually asked her to go. People stopped making an effort not long after mum had to start using walking sticks almost 12 years ago. This lady who is taking my mum is a single parent struggling to raise a teenage boy alone, is struggling to put herself through college, yet she took the time out to think about my mum. She has phoned ahead and got disabled access. It’s amazing how thoughtful someone can be. One little act of kindness as made my mum’s month. The depression she was going through has lifted, even if its temporary it’s nice to see my “old” mum back just how she used to be. I and my partner will be taking them to London later today. Can’t wait to see her face when they come out.


I’m making good progress on my new project the stripy scarf for my sister. It’s looking goooood hehe .

:'( bad week :'(

It’s been a long terrible week. So many times I have ended up in tears wondering what’s the point of it all. I have been in amazing pain due to my EDS, and to top it off I’m still having problems with my teeth. Trapped nerves again this time in another tooth. The filling started to “bubble” and has started to fall out. That’s when the pain was at its worse. I also ended up with an abscess just above the tooth in question. I phoned my dentist surgery who done the work. Begged them for an appointment, explained the pain I was in was unbearable even with taking countless painkillers on a daily basis anyway. Eventually they agreed to give me an emergency appointment in mid December. That’s over a month and a half away thanks allot Gibraltar house. Starting to think it might be a better idea to have all my teeth removed and have false ones then I know I’m not going to get any more problems with them. But knowing my luck I would forget where I put them.


I have lost most faith in family and friends this week too. I don’t know if it’s because I was already depressed or it’s what’s causing the depression. I feel like I’m fighting all the time. Fighting to keep strong, keep the house reasonably tidy, to get people to understand that yes; yesterday I could walk to the shop but this moment in time I can’t get off the sofa, fighting to make my partner understand. We have fallen out many times this week over things that normally wouldn’t be worth sighing about. I am fed up of the countless number of times I have gone out my way to help my family giving up most of my childhood to look after my mum who became disabled due to EDS while I was still in school. Yet whenever I ask them for help I am made to feel guilty, like I’m taking advantage or I’m a bad mother. I am fed up of it all and I am fed up of being fed up.

That’s why tonight I have decided to crawl, yes literally, out of my pit of despair and have started yet another crochet project. This time it’s for my sister as a Xmas present. She is really into all the emo/ Goth stuff that’s going on at the moment. So I decided to crochet her a stripy “moody” scarf. I’m making good progress considering I only started 2 hours ago. So far I’m on my 6 row of colour. I hope she likes it, my dad was worried she might think it was old grannyish. If I can get it finished in time then I will make her some fingerless gloves or arm warmers as she’s mental over those too at the moment. Ill upload some pics when I can find the memory card for my camera. I know I had it last week as I uploaded pics here. Hmmmmm maybe its behind the fridge......

I’m excited and somewhat apprehensive about next week. Guess what were doing.....potty training. I gave it a trail today and Connor managed to pee in the potty twice. Admittedly he peed over other places but came and told me which is a good sign. I think it will go ok. His got the sensation most the time so I guess just see how things go. If anyone has any tips please feel free to leave a comment.

Wow it’s been a busy 9 days. Been doing lots of cross stitch. Done half a tree and some of the sky the wolf has his back ridge....kind of. I’ve been trying enterlac again I think I’m getting the hang of it. Still not how I think it should be but it’s looking more even. My son has been trying too eventually he got bored and started using them as drumsticks.

 

Cross stitch so far





Connor crocheting....kinda



Had appointment with a specialist in London. Travel was a nightmare, my son was a nightmare, and the appointment was a nightmare. Not particularly happy so I’m making an appointment with my rheumy tomorrow morning. I was happy with the person I saw today asking for blood tests and x-rays which had all been completed with-in 2 hours. Normally I would have to make another appointment to have them done so was amazing to get them done in one go. We had MacDonald’s for lunch which we had to eat sat on the pavement as there was no seating; I ended up with a hell of a numb bum. I have a lovely bruise from the blood tests, 2nd time lucky she managed to get blood from me. First time in years anyone has managed it that easy.

Blood test bruise