When I started View From a Walking Frame it very quickly became a place for me to be positive about all the improvements that I make and all the achievements that I have in life that relate to my Cerebral Palsy. Don’t get me wrong, I know that I’ve done my fair share of ranting and complaining, but on the whole I like to be as upbeat about my CP as I can.
However, there are times when it gets harder to keep looking on the bright side. As much as I hate having to think of those times, and write about them for you all to see, I feel like I should. As much as I want this blog to be about celebrating all that I can do and less about dwelling on the tough stuff, I also want it to be honest.
The thing is that sometimes I personally feel a lot of pressure when it comes to my disability. Before I go any further with this post, let me state that I am the only person who puts this pressure on myself. It is mine and mine alone. It doesn’t come from my parents or anyone else.
All throughout my life, people have put in so much work to help me become the person that I am today, and without even one of those people, I don’t think I’d be able to do all the things I can. I am grateful to every last one of them, but I’m sure you knew that already.
As I’ve grown older, I’ve started to realise just how much they’ve done, especially my parents. I don’t think I’ll ever understand all of it, no matter how hard I try. Now I do a lot of the stuff for myself, or I have a greater understanding of why these people keep doing these things that help, I sometimes feel, (well okay I always feel), like I have to keep pushing so that their hard work doesn’t end up being wasted, and so that I can make them proud. I feel like it’s my way of showing them how much I value their hard work and support.
Sometimes, I try an old exercise that I used to be able to do with relative ease, or think back to something I used to be able to do as a kid, and I find that it’s really, really hard. This can make me feel crushed. No matter how many times I feel like that, it doesn’t get easier.
Yes, you could say that they only person I should want to impress is myself, and believe me, I do. I really, really do. I want to do all of this stuff for myself more than for anybody else, and sometimes that’s the hardest part. I want to be able to keep walking and living my life the way I do for as long as possible. That makes me feel pressured sometimes. That’s the thing that I want most of all, but I know I can’t ever take it for granted and I’ll always have to work at it for the rest of my life.
Don’t get me wrong, most of the time I don’t feel pressure at all and just focus on working hard and enjoying life, but some days, it’s there, and I don’t necessarily think it’s a bad thing. It helps me to keep going after all.
viewfromawalkingframe 
What a fantastic post…. I can relate to this so much. Especially with finding things harder than they used to be. I am finding that more and more, and even though I full expect that it never gets any easier. especially as when I was younger I was very very active. I used to cycle everywhere, walk lots and basically if I wanted to do something I’d give it a try and push myself as hard as I could.
Nowadays though, I have a lot less energy and am nowhere near as fit as I used to be…. And I get so frustrated, and sometimes angry. The hardest thing I had to come to terms with was accepting that riding my bike was starting to become a bit dangerous as I kept falling off, so I had to bite the bullet and sell my bike, which was heart breaking.
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Thank you. I can relate to lots of things that you say in your comment too. I used to always play outside and I’d give everything a goo. I used to play tig with my friends without using my walking frame but I really, really don’t think I could do that anymore. It makes me said sometimes but I try to focus on being happy that I could do it once.
That’s such a shame about your bike, but you have to put your safety first I guess Do you mind me asking if you used an adapted bike or not?. I can totally understand why you get so frustrated or angry. You sound like you’re really determind though and work really hard. Keep going!
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I’m sometimes too determined for my own good!!! I push myself too hard, then end up having several bad cp days in a row…. I rode a normal two wheeled mountain bike, I taught myself to ride a two wheeled bike because everyone thought I couldn’t and I wanted to prove them wrong! (and that was aged 9 – so I’ve always been stubborn!) nowadays I try and make up for what I can’t do physically with more mental things – an older friend once told me that knowledge is power, and that has stuck with me. so I keep my mind open to learning as much as I can, so I can further my knowledge, not through college or anything but through my voluntary work and meeting new people etc.
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I know the too determind for my own good feeling! I’ve dne that myself too. That’s really impressive with the bike! I bet you were really pleased you proved them wrong! Sometimes. My mum always says that it’s partly down to the fact that my parents and I all have a stubborn streak that I can do what I can do today. I love to try and learn new things all the time too
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My mum always says the same about my stubborn streak!
It never really made me feel happy that I proved them wrong I was always happier that it was something I worked hard to achieve and got a lot of enjoyment and independence out of. 🙂
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That’s actually a really ice way of looking at it I think!
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I love your determination Nicola! That’s a rare trait these days. Good on you!
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Thank you!
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Hi Nic! First of all, thanks for the like and comment on my blog today. Secondly, I completely understand how you feel and what you expressed in this post. I try to keep my blog positive as well but sometimes just to have those moments where I complain or vent in a blog. At the end of the day, we’re all human and get mad or sad. I’m by far the one person in my life who puts the most pressure on me. Pressure to be positive all the time, pressure to be perfect and not make mistakes. Anyway, I’m rambling but after reading just a few of your blogs I can say you are incredibly inspirational and I really admire your positive attitude and determination like lindabloodworth said!
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Thank you so much Jackie! I’ve been reading your blog for a while and I really enjoy it. I really should learn not to be so hard on myself sometimes, but it’s hard, but, like you say we’re all human. I just keep triyng to remind myself that no one can do anything, and nobody expects everybody to be able to do everything either.
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Hi Nic, another insightful blog from you. I love your honesty….even though it can be hard for me to hear (as someone who is not at that stage of the game yet)! I think as a mum of a little person with CP, although it can be hard to read that things get harder (despite all your, and others hard work) it is a good thing to have in the back of my mind to help understand when she might make other choices. I also think it helps to keep focussing on THE BALANCE that we are always trying to achieve…..trying to live and experience life as much as do things that help physically! It is always important to keep things in perspective. You have to weigh up how much work it takes (in exercises and things) and as you grow and life becomes busier it is harder to fit everything in as much as you might want to. Things change with each stage of life. This last year we found it even more difficult to keep up the home program from the last intensive therapy that Miss M did earlier in the year – with school, illness, the demands of family life etc etc it just didn’t happen as well as the year before. Competing demands and a constant battle to decide priorities. At the end of the day, you can only do what you can do, and sometimes the fact could be that the effort required to continue to do something is just not worth the outcome if there is another way of doing it. I have never met you but you sound like a great person who is doing their best, and Im sure that no one around you would / could expect any more of you! Life is not all about keeping up the same level of physical ability – that could apply to ANY of us. I sure cant / don’t do many things things that were physically easy for me in my childhood!, and sometimes I feel guilty that I don’t have the same level of energy, flexibility etc that I used to have, but I think that is part and parcel of how life changes. If it were really important then I would probably get back into something that would help (like recently starting pilates to try and sort out my back – which mind you took 5 yrs at least to get high enough on the priority list to actually happen!) Anyway my reply is turning a bit rambly, but ultimately my point is, that you would be doing what is practical and balanced within the greater scheme of your life. All those who have helped along the way, Im sure would be very proud of where you are at. I think they would also understand that some aspects (especially in the case of CP) are just unsustainable and at some point you have to modify / weigh up what you do. I guess it is a bit like an elite athlete if you look at it. Most of them have to stop being an elite athlete at some point because of everything that goes into it, and because you body can only take so much I guess. They and those around them would still be proud of their achievements during that period. I look at the intensive therapy blocks that my daughter does, and I think to myself it is much like what an elite athlete would be doing. At the end of the day, once you are old enough to decide for yourself, you will work out which things are important to keep doing, how much and how often etc . I also liked what my pilates teacher told our group the other week – she knows her body, and she knows that she can get away with about 3 weeks of not doing any pilates before she knows she needs to do some more to maintain where she is at. I like that idea. I hope that one day, we will be able to work that kind of thing out for Miss M – where together we will be able to work out what is worth persevering with daily, what can be done less often in blocks and stuff. I guess that will depend on what her goals end up being for herself in terms of her independence and of course what she loves doing quite apart from her CP, and where she wants to focus her energy, and the kind of balance she wants to achieve in her life and go from there. 😉
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Thank you. Your daughter sounds like a very determined young lady and that will help her go far.I think having balance is important. It can be easier to get wrapped up in therapy sometimes, but I personally think that therapy should be there to help you live your life and shouldn’t ‘become your life’. When I was away at university I didn’t do as much ‘physio’ as I did at home, but I did much more walking than I was used to so that benefitted me in others ways. Like you say, schedules and priorties change and for me in became a case of doing what I could, when I could. I think that happens to all of us. We are only human. Your words mean a lot and they are very encouraging. I hope your still enjoying pilates. I feel like I’m starting to get to know my body. I know what will lead to me having a bad CP day and when I need to rest, although I often still choose to ingnore it, but that’s a whole other story! Good luck to you and Miss M. It sounds like you’re strying your best and that’s all anyone can and should ask of you.
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