Time for a reality check, again

As much as I hate to say this, I think it’s time that I sat myself down and gave myself a good talking to.

My left hip kept bothering me again last night, and my left ankle has been feeling tighter than usual for a few weeks now. I know that this i partly my own fault. Because of my Cerebral Palsy I have aches and pains every day. Most of the time, they don’t bother me too much, but every so often they get more severe for various reasons. The fact that I haven’t been keeping up with my physio as much as I should. or wearing my night splints as often as I’m supposed to lately definitely doesn’t help. I know that.

The thing is, when the pains get worse and I notice that my muscles are feeling stiffer than normal it upsets me, and I spend the first couple of weeks of the process telling myself that it will pass on it’s own and bury my head in the sand. It’s never easy for me to admit that I’ve been letting myself down  by not doing the things I need to do to keep myself as mobile and pain free as possible. I know it sounds like something I should do readily and without question, but when I consider the fact that I have CP to be such a  small part of who I am as a person, doing all the physio and the stretches isn’t always at the forefront of my mind. Not until the pain hits, anyway.

Then, when I do notice that I’ve started to let things go and the impact that  it’s having on me; it hurts. Not just physically but emotionally too. It’s a reminder that there will be times when my disability has a larger impact on my life and my body than I would like, and that I will always have to work to keep them at bay as much as possible.

When I  was little doing lots of work on standing up straight, my family would tell me that I had to work really hard at pushing my knees back because that would help me push any operations back that I might need when I was older, for as long as long as possible. I knew lots of people with Cerebral Palsy who  were having them or had already had some and I didn’t want to have any if I could help it. When I notice things tightening up or hurting more I’m reminded that I’ll never be able to stop that big push.

I know as I get older there are things that I can do now that I won’t be able to in the future, that happens to everyone, disability or, not, I know that. However, on days like today I’m all too aware that it could happen faster and sooner than I would like if I’m not careful. It could even happen without me really noticing if I don’t pay enough attention to my physio, and that is hardest thing to deal with of them all.

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All I can say is, that I am Nic, and yes I have CP, and I may not always push a hard as I can, but I will not give up entirely. Not now, and hopefully not ever.

 

 

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15 thoughts on “Time for a reality check, again

  1. What a fantastic and honest post, I can relate to this so much – I am also guilty of letting things slip, and I admit I have done that a lot recently.
    I all to often find excuses not to find time to do physio and tell myself that I’m too busy, when really I’m not and I just don’t want to do it… A bit like a stroppy kid!! Then I suffer for it and get grumpy because I’m uncomfortable and less mobile and know in the back of my mind that it’s my own fault.
    At times like this I end up having to take time to talk to close friends about it and get things off my chest. They then give me a talking to and it makes realise and get back on track, or I take time to think why I’m not doing what I should and what I need to do to change. It’s tough, particularly when I think about what I used to be able to do, that I can’t now – like cycling for example.

    I was at an orthotics appointment last week, with a new orthotist and he mentioned how tight I was, so I had to hold my hands up and admit that I hadn’t been stretching as much as I should, and he was said that if I didn’t keep up with stretching, then it would be pretty useless casting me for a new splint and the other things that they are going to do because just the splints aren’t a magic solution, I have to keep my side of the deal too.
    I really respected his honesty, and that helped snap me back to reality.

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    1. I’m gulity of that too, pr tellong myself I’ll start again tomorrow.

      I’m glad that you have friends who’ll support you and help you get back on track. I think that’s really valuable and important.

      I like it when the medical people I see are honest with me and tell me that people do slip but it’s important to get back on track as soon as possible.

      Good luck with the splints. I hope the appointment went well. I know it’s tough to get back on track but I hope you manage it. Good luck.

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  2. I’ll start again tomorrow!!! – I tell myself that all the time too!!!
    My friends are great… I think it also helps that one has a brother with cp, and another has a little girl with cp and I give her loads of help and advice, so when I let things slip she really puts me in my place for not doing what I have helped her and her daughter with!!!
    The new orthotist I see is great, and I think it helps that he is a similar age to me, so it’s not like being told off like a naughty child!!
    The appointment went really well thanks 🙂 I’m being casted for a new splint in a couple of weeks, my right splint has never been comfortable and finally after a year of being told it’s fit for purpose – when clearly it’s not, I have finally found someone that listens!!!

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    1. It sounds like your friends are a huge help and I’m glad you can give them advice about similar stuff.

      I hope you get your split sorted. It’s awful when they don’t fit right. I’m still waiting for an appointment to get my left one sorted because that’s not right either.

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      1. Thanks, frustrating isn’t it??!! I’ve had no end of troubles with it… it’s never fit right, and I can bend it out of shape too… which really isn’t good!!! But this guy is really switched on, and has already sorted me a new gaiter for my left leg, he is going to do a full review of all my splints so we can get everything spot on.
        How are you getting on with your splints??

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      2. Does it bend out of shape while you’re wearing it too? It sounds like this guy could be really helpful though so that’s good. My night splints are fine thanks but I can’t wear my daytime afos at all. The left one is so painful I can barely walk across a room in it. The right one fits like a glove but I don’t wear it because I can’t wear the other one.

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  3. Lovely post. I’m sorry to hear that things are great right now. It’s so unfair that you even have to deal with this stuff at all. I guess one good spin to put on it is this: you’ve totally got a great excuse for taking long hot, relaxing baths and getting plenty of massages. I hope things settle down soon and you can go back to ignoring your body, and just keep on rocking your life! 😀

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  4. Yes it bends out of shape when I put weight on it, so not good…. The guy is really helpful – not bad looking either which helps!! 😉 hope you get your splint sorted soon

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  5. Another really good post Nic. I love your honesty! What I liked most as I read it was where you said something like “my CP is such a SMALL PART of who I am as a WHOLE” So true!!! Love that!! and as a mum of a younger child I think we are all guilty of trying to find that balance, and a bit afraid of what might sneak up all too soon – unnoticed!! I know that I was confronted the other day by someone telling me that many children who could walk with the assistance of a walker go on to chose not to mobilise that way as adults because it is way too hard and even painful – confronting for a parent struggling to keep things balanced AND give her child every chance to have the opportunity to chose when she is ready – but none-the-less perhaps the painful/difficult truth. I hope you can find a way to strike a balance that you are happy with or find some things that will help alleviate the discomfort you are feeling at the moment. It sounds like it will be an ongoing struggle unless you give up all together which I did get the feeling you will do just quietly. I guess if its any consolation, your not alone 😉

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    1. Thank you for your honest comment too Angela. I like to hear things from the perspective of parents whose children have cp. Although it’s hard to read sometimes because it makes me think of what my parents have go through too. Your daughter sounds like one very strong little lady and I’m sure she’ll make the best choice for herself when the time is right with your support and guidance. I’ve been told by a medical professional that I might well end up using my wheelchair all the time when I’m older. I was told this when I was aboit 16 and it’s something that I found hard to face up to at the time. I dread the day I might have to make that choice – deciding to get a wheelchair to use alongside my walker was hard enough. I was aboit 11 or 12 then and my mum and dad gave me advice but they wanted it to be choice in the end. I took a few weeks to think about it before I decided to go ahead.

      Some choices might make themselves for you as she grows up, but I’m sure you know a lot of them won’t either. It’s hard, even as an adult with cp. But your family are not alone either, if that helps.

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      1. Thanks Nic. I guess things are hard to read/hear/think about from both perspectives – me sneaking a peak into the potential future – you looking back, but that is what I like about your blog – I find it really helps give me more perspective (as a parent)….and it does help to know we aren’t alone 🙂

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