Botox and facing hard truths

Well, I’ve just got back from my Botox appointment and it went well. I’ve had the injections in both legs, arranged an appointment with my physio, my physio is going to try and arrange a joint appointment with myself, her and my orthotist to see what we can do to get me feeling comfortable in splints. She’s also going to book a service for my walking frame Martha.

My botox injections were done by my physio and I also saw my consultant when she popped into the room. I made sure I was honest and told them all about the extra pain I’ve been getting that have been keeping meΒ  up at night, the fact that I seem to be tiring a lot faster than usual when I walk and not feeling like doing as much walking as normal. They listened really closely to what I had to say and then explained to me that quite a few people with Cerebral Palsy also find themselves feeling the same way in their 20s.

In a way, it was nice to know that I’m probably not alone in this, but it also felt daunting too. Doctors have told me in the past that I’ll start walking less as I get older and I’ve sort of made peace with that in my own way, but the reality is still something I can’t imagine.

Don’t worry, I think I’m still a long way from that point yet, but today I got one huge reality check and I don’t like it very much. The good thing about all this is that it’s made me more determined to work hard.

It might not always be easy, but that doesn’t mean I won’t try

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16 thoughts on “Botox and facing hard truths

  1. As the quote says “Nothing worthwhile comes easily”… and as college friends and I used to say “We are strong, confident, Women”… You most certainly are ALL THAT! x

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  2. Glad to hear your botox injections went well…. I’m a real baby when it comes to injections!!!! I’ve never had mine done by a physio before, I had mine done by a consultant when I was younger.
    Over the past few years I’ve been getting more aches and pains, feeling tighter and finding walking and stuff harder. I spoke to my physio earlier in the year about it and she said it’s very common in people in their 20s with cp – I’ve also read a lot about it on other blogs and forums.
    The advice my physio gave me was to keep up with stretching, take rest when I can and to try not to overdo things physically. We did speak about using a wheelchair when the time comes, but I’d find ways of coping in the meantime. I have recently started using a stick for example…
    I have kind of made peace with the fact I can’t do what I used to, and have been thinking about how to make my life easier, eventually I will consider using a wheelchair or scooter when out and about, but that will be a long way off.

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    1. Thanks for leaving this comment. I’ve got an appointment with my physio at the end of he month to try and tackle some of the aches and pains. For now I’m just going to try and pace myself a bit more. The thing that’s bothering me most at the moment is that this seems to have come on over the last couple of months or so. I don’t feel like there’s been any gradual build up but it may just be that I haven’t noticed.

      It’s good that you’re prepared to think about using a wheelchair if you need one later on. I struggled with that decision, (I got my first one o use alongside my walking frame at 11). Anything like that is daunting but I think if you’re willing to look at options that could make things easier that’s a huge help too.

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      1. I know what you mean, I’m used to having bad cp days, even the occasional bad cp week. Although recently I’ve been having a bad cp month and it does show signs of letting up…. Next week I plan to have a lazy day as I have an early orthotics appointment at the time I’d just be starting my voluntary work. So I decided to take that day off from it and chill out after my appointment. I have even arranged to start work earlier the day before so I can finish early and get enough sleep because I don’t do early mornings!!!!

        I’m also considering getting a physio appointment towards the end of month if my situation doesn’t improve, to see where we go from here….

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      2. Ouch a bad cp month doesn’t sound good! I’m glad you’ve managed to schedule some down time though. Do you know what’s causing it?

        I’m getting more and more aware that it’s getting to winter and while I’m looking forward to lazy onesie evenings curled up with a book I’m not looking forward to the cold weather.

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  3. IT must be a difficult thing to get your head around Nic. With my daughters surgery just around the corner, and doing lots of research, I have been getting told the SAME thing!…people affected by CP in a similar way to her, tend to choose to walk less and less as time goes on because it becomes increasingly difficult and uncomfortable. As a parent this is difficult to hear also, especially when so much time is spent doing things to help keep muscles strong and long, and hoping to give her as many options for as independent mobilising as possible into the futre…..then to get to surgery and hear that if we do HEAPS of rehab and work hard afterwards, hopefully she might get back to where she is today ( able to stand holding onto something, walking a short distance with a walker like Matha, and able to transfer with assistance but without having to use a hoist!) but at the very least being able to maintain the ability to assist with transfers – how scary is that?? This has been daunting information for us to hear recently, but I guess we go with our usual “cover all our bases, and understand the worst case scenario, but always work towards the best one”.
    Hearing that things are becoming increasingly difficult for you also, and that you are being told the same information, is a little confronting for me too, I have to admit.
    So I am hopeful that even with choosing to walk less as time goes on, I imagine it is still a good thing to have the option still to be able to get out of a wheelchair and perhaps be able to leave a wheelchair or walking frame at the door and step into your room/bathroom, and climb in to bed/shower???… or to be able to stand up to reach something? or maybe to have been able to take steps when younger for if you were at a park and stuff like that? When they say you will do it less, does that mean you wont do it at all, or does it mean instead of walking around at the shops, or up the road, you reserve it for small spaces or at home? I guess as a mum, I am hoping you feel like all your hard work has been worth it, even if it was for a shorter time than you had hoped?, and also hopefully that I am right in thinking that being able to maintain some ability to take steps, transfer etc makes somethings easier sometimes, and contributes to the level of independence one has as they grow up?
    I guess at the end of the day, whatever happens, you manage one way or another πŸ™‚ Hopefully the botox and physio, and exercises help you maintain your abilities to serve you when you need them πŸ™‚
    I look forward to reading about how you get on and hope things improve somewhat now that you have had your treatment πŸ™‚

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    1. I was first told that I would walk less and less when I got older when I had my hip surgery at 16. My surgeoon said that if I agreed to the surgery (which I did – and it was a huge success) then it would mean I’d stay on my feet much longer (not that I have any intention of coming off them any time soon, believe me!) I think they mean that I’d probably still walk around shops and at home, but not longer distances as often as I do though.

      I’m still hopeful that all this hass just been one long ‘rough’ patch’ and things will go back to my level of normal soon. My physio had a huge list of things we can do and she said she’d like to keep me walking ‘ideally forever’. If that will happen I don’t know but I think I’ve got a long time before we get to that point (I hope) and I plan to do everything I can to keep it that way. One thing I do know is that all the hard work is worth it.

      I wish you luck for your surgery, but I can imagine that it’s daunting and scary and a lot to deal with. You never know what will happen. Your daughter may do far better than anyone expects. Rehab will be tough on all of you, but any gains will mean it has been worth it All you can do is try your best. Thanks for your kind words as always Angela. I hope surgery helps πŸ™‚

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      1. Thanks Nic! I always love hearing your perspective. I am really glad to hear it is all worth it :)… Miss M’s decline happened pretty suddenly too – but at her age (10) growth is a big contributing factor.
        My hope for you, and for my daughter, is that you get to stay on your feet in a way that serves you well, for as long as you want too πŸ™‚
        By the way, it has been a bit full on in the lead up to her surgery, but we will be blogging closer to the time (also in the hope to shed some light on CP – at least our experience of it – and also hopefully to help others in a similar situation to us πŸ˜‰ ) I cant tell you how glad I am that I came across your blog πŸ™‚

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      2. I hope the same for your daughter too. Thanks si much for all your kind words. I always love reading your posts on your blog and comments on mine too!

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  4. not sure what’s causing it… It could be that I’m doing a little too much, it could be just things getting tighter, could be both put together – who knows!!!
    I must admit I’m looking forward to lazy onesie evenings too, with lot’s of tea, chocolate, candles, a good book or knitting, or even better when my best friend comes and joins me!!
    I’m not looking forward to the colder weather either, I’m going to schedule in more stretching time, and some time in friends hot tubs!!

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    1. Hope it sorts itself out soon. Maybe phone the physio and get some advice to and put a stop to it before it gets worse? That said, I usually try and keep going as long as possible before i call the physio so I’m not really one to talk!

      What kind of stuff do you knit? Does it hurt your hands or do you find it helps? I tried to learn to knit once, it didn’t go very well. I’m trying to learn to cross stitch but I can only do it in really short burst.

      I imagine hot tubs are really good for getting rid of aches and pains!

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  5. I’m the same as you… I keep going until I have no choice but to phone the physio!!
    At the moment I only knit scarves or really simple things, I started learning a few years ago, but got bored very quickly… Then I started again a couple of months ago and weirdly found I can knit a lot better!! I use big needles and chunky wool as my fine motor control isn’t great, I warm my hands up before I start with one of those squeezy stress ball things. I have good days and bad days where sometimes I can knit for hours, other days I can only do 15 mins or so. I find it helps my fine motor control, I find it really relaxing too…..
    Hot tubs are great for helping tightness and achiness and I’m lucky that I have a couple of friends with them, who allow me to use them when I need to.

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    1. I have some of those stress ball things too much I always use needing to warm my hands up as an excuse to have a cup of tea and wrap my hands around the mug! I bet it’s great for fine motor skills.

      I’d love to be fortunate enough to have a hot tub or something one day to help with bad cp days. Maybe one day if I ever manage to write a couple of best sellers! It’s good of your friends to let you use theirs!

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      1. stress balls are helpful, I keep one in my desk too for days when my brain and hands aren’t talking and typing becomes hard work, or my left hand decides to press whatever keys it likes! (caps lock instead of tab is a favourite first thing in the morning!) Which is not helpful when I’m doing data entry that needs accuracy!!
        I’d love my own hot tub…. will have to keep doing the lottery!! it’s great being able to use friends’ hot tubs it’s nice to relax and have company at the same time.

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