Can I ask you something?

Guys, can I be honest with you: I am tired, physically and emotionally. In fact, I am beyond tired and I don’t like it.

Over the last couple of weeks, I’ve been getting a lot more aches and pains that normal, especially for this time of year. These things are usually worse in the winter when it’s cold, but the UK has been having some lovely warm weather lately. When this happens, I try and spend as little time in the house as possible, but not this time. I’ve had no energy what so ever lately. The majority of my days are punctuated with naps, and some times more than one a day.

I want to be in the sunlight, but the thought of moving more than necessary makes me want to weep. I have an errand that I’ve been meaning to run all week, but I just can’t face it. My first thought when I wake up in the morning is “everything aches”. My Cerebral Palsy is on my mind far more than I would like these days. It feels like it’s trying to show me who’s boss, and what’s worse is that, right now, it’s like it’s winning. I want to fight but I just can’t seem to.

This is not like me. I think anyone whose been reading this blog a while could tell you that. I know they’re tonnes of people who are far worse off than me, but I feel like I need to tell you all that it’s getting me down.

Does that make me weak?

Does that make me ungrateful?

Does that make me even weaker?

I keep thinking about booking myself in for a massage or something, but I’ve never been for one before, and part of me doesn’t like the idea of going for one. I’m not entirely sure why this is. Maybe it’s becauseย  it will mean that by doing that I have to face up to what’s going on? Maybe it’s because another person will then feel the tightness in my muscles? That’s an unsettling thought.

Do you guys go through phases like this? How do you deal with them?

 

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21 thoughts on “Can I ask you something?

  1. The only thing it makes you is human. I think most people do feel like that sometimes and it effects different people in different ways.

    Actually getting started is the hardest part – once you can do that, everything else is so much easier. And never be afraid to address your problems – the fact you’ve written this blog shows you’re not. You have the power to improve some of the things that are getting you down – there’s nothing stopping you doing that.

    I find it also helps if there’s a target to work towards – it can be anything you like. Having some kind of motivation, however big or small, can make a huge difference to how you go about your daily business.

    I know you can turn it around. Chin up. ๐Ÿ™‚

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  2. I know exactly how you feel….. and believe me feeling the way you do does not make you weak or ungrateful….. No one can fight 100% of the time (unless you have some super-powers you haven’t blogged about) It’s human nature to get down about things……
    I have been there… where you feel like everything you just isn’t helping….. My solution at the worst of it (which I REALLY DON’T recommend) was to drink my way through it…. when it dawned on me that it was getting me nowhere, I bit the bullet and went to my gp, who put me on baclofen, a muscle relaxant that really does take the edge off the tightness and makes me feel more comfortable. It’s not a miracle cure for tightness but it helps….
    I also soak in a warm bath, or when I get the chance a hot tub!!
    Massage is a good short term help, I get a friend who is good at massage to give me a hand when things are really tight to help me relax a bit.
    Have you spoken to your GP or physio about how you’re feeling??

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    1. Thanks for sharing your story with me, it means a lot to know I’m not alone. I haven’t been through this to such an extent before. It feels a bit like I’m drowning.

      I’d love to soak to a warm bath but we had to have our bath taken out when I got my walk-in shower put in. In fact, I’d love to be in a hydro pool right now, or any pool, if it was warm enough.

      I haven’t spoken to them yet, but I’m thinking of getting back in touch with my physio if things don’t improve soon.

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      1. I didn’t have it that bad until I was about 25, up until then I just plodded along quite happily.(this is fairly common with cp, from what I’ve read on forums and cp related sites) Then last year after really struggling for nearly a year I decided enough was enough and I needed extra help. I bit the bullet and got a blue badge, something I really didn’t want to do because it felt like giving in, the same feeling when I started taking medication.

        Is there a hydro pool near you?? my local private physio has a hydro pool they rent out for self help hydrotherapy. It’s really good, I often use it in the winter… this time of year (especially at the moment!!) it’s waaayyy too hot!!!

        I’ve talked a lot with friends and on cp forums about how tough things have been getting the older I have got, and everyone has said that take help where you need it…..
        I don’t like doing it, but you have to weigh up taking help or feeling rubbish….
        I know the next things I have to think seriously about are changing my job, and finding something to make walking less of a strain, like taking a stick when I know I’m going to be doing a lot of walking.

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      2. That must have been a hard decision in both counts. I had to fill in my blue badge application last week. I hate feeling in those forms. I can relate to how getting a blue badge made you feel. I felt similar when I first decided to get a wheelchair as well as a walker. But you’re right bout weighing these things up against everything else.

        I don’t think there’s a hydro pool near me I could rent out.

        Do you mind me asking how old you are and what type of CP you have? I understand if you’d rather not say. I’m 23 and have spastic triplegia. My left side if my worst side.

        It’s good that you have steps of things you want to think about next.

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  3. I don’t mind talking about anything to do with cp… or pretty much anything for that matter – I’m very laid back!!!
    I’m 27 and the type of cp I have is a bit of a grey area…. Some medical professionals say I have spastic diplegia, others say I’m more spastic quad, as it mainly affects my legs, but my hands are affected to a lesser extent.
    My left side is my more affected side, particularly in my legs but my left hand is also more affected than my right. My fine motor control (writing and fiddly stuff is affected too) I favour using my right hand for most things.
    My balance and coordination isn’t great.
    Because of the way I walk, I have started to suffer from back pain and am considering going to get that checked out too…

    Have you considered taking muscle relaxants to make you more comfortable??
    I went to the DRs just over 18 months ago when things got really tough and he suggested taking Baclofen, which is a muscle relaxant.
    It was a massive decision for me to make, as I wasn’t to keen on taking meds potentially for the rest of my life and it meant I had to give up any alcohol, which at the time was hard for me to deal with as I work in a pub and my social life revolved around pubs too.
    After having the meds a couple of weeks (I left it until after Christmas, because in my trade that is when you make the money and customers tend to take offence if you don’t join them in a few drinks!) I tried them and haven’t looked back! they make a real difference and I’m a lot more comfortable (being tea total isn’t all bad!! – I was able to afford to go on holiday abroad for a week and have two long weekends away!!)

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    1. Thanks Chris. I sounds like your CP affects you quite similar ly to how mine does with me. My balance control is affected too. At the moment I have three bruises on my right leg and no idea how I got any of them. I’m guessing I’ve fallen over a few times and forgotten about it. I trip up so often I don’t tend pay much attention unless it’s a ‘big’ or ‘bad’ one. My fine motor skills are affected too but I did myself I huge favour as a kid playing with Polly Pockets and Teeny Weenie Families and stuff like that. I managed to pass a 70 words per minute shorthand exam at uni and I still have no idea how.

      I haven’t really thought about taking muscle relaxants before, but it’s something I’d keep in mind as I get older. I’ hoping this is all just a blip. I’m still waiting for an orthotics appointment to get my AFOs sorted, which I currently can’t wear at all because they’re too painful, and I’m due some more Botox in a couple of months so I’m hoping things will be better when I have all that sorted.

      I’m glad they work for you though, and I can imagine there are lots of plus points be being tea total – the excuse to drink more tea being one. How easy do you find it to carry drinks? If I have to carry a full cup or glass I end up with half of it all down me after about two steps!!

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      1. I’m with you on the mystery bruises!!! I really bruised my knuckles the other day and I can’t work out how, and they really hurt… goodness knows how I di it, all I can think is that I bashed them at work somehow… probably something to do with my rubbish special awareness!!! (another thing to add to the list!!)
        I did my fine motor skills a favour when I was younger too, playing with playmobil and I studied art at college…..

        Drinking more tea is a massive plus!!! I buy lots of different types of tea from a specialist tea importers near me… My friends call it the pub for tea totallers!!!

        I have perfected the art of carrying drinks to some degree… I know what drinks spill less (I won’t bore you with the science!!) so I make sure I carry those in my worse side!! It takes a lot of concentration to carry more than one drink at a time (I can carry up to four though!!) so it’s no wonder I’m always knackered after work!!

        Let’s hope you get your AFOs sorted soon!!

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      2. Hope your knuckles get better soon!

        That’s cool that you did art in college. I’m always really imprsssed that people are good at stuff like that cause I’m hopeless!

        4 drinks at once sounds like pretty good to me. I can’t evem carry food on a plate without

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      3. Sorry that replu got cut short. I can’t carry anything on a plate without it going everywhere so I”m even wprse with drinks@

        How are you getting on with your new splints?

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  4. I’m not great at art!!! I did it to get onto a photography degree, and that didn’t suit me either!!
    I have to be really careful with stuff on plates and trays!! That takes loads of concentration too!!!

    My new gaiters are really comfy, I haven’t got my new right splint yet, that should be ready in a few weeks, it has a different strapping system on it to keep my ankle better aligned, so looking forward to seeing what that’s like. When I was being casted for it last week, the orthotist also did a review of my other splint, and is going to replace that in the near future, he is also going to decide whether I need night AFOs on both legs too.

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  5. I completely go through phases like this. The doctors told me growing up that my kind of MD wouldn’t get worse but I swear I am not as strong as I used to be. I can’t even get off my own couch sometimes because I’m so weak. I do the “I shouldn’t feel bad because there’s people out there that are way worse off than me” but as true as that is, I think that method of thinking doesn’t really make us feel any better. In fact it often makes us feel worse cause we start beating ourselves up for feeling the way we do. I find just saying “Ok, I feel hopeless, frustrated and crappy right now” and acknowledging how I feel versus trying to fight it or make it stop can really help. You are so strong and so inspirational but you are also human and totally allowed to have bad days and have your CP on your mind more than usual. It definitely doesn’t make you ungrateful or weak at all ๐Ÿ™‚ Being able to just be honest about how you feel makes you even more strong and inspirational!

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  6. hey nic ๐Ÿ™‚ I love reading your blogs, its a shame i dont get to c u anymore *hugs* I have read this blog and would like to reply and answer your question – so here goes.

    Does that make me weak? – In no way does this make you weak! you have alot to deal with and feelin like you do makes you human and not weak! n u know waht – this heat is no good for anyone and for me i am constantly tired as this heat does me in… does the same every time.

    Does that make me ungrateful? ungratefull for what? i dont get this question hun, i do not see what you have to be ungratefull for, i have heard you say plenty of time ‘i know others have it worse than me’, u have to remember tho that although this may b the case it does not in any way make this less ‘worse’ for you.

    BIG HUGE MASSIVE HUGS!!!!!!!!!!!!!!!!!!!!!!!

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    1. Hey Donna ๐Ÿ™‚

      I know! I miss you!

      Thanks for answering my questions. You have a good point. I think the hea makes everyone tired when they’re not used to it. I think I just expect myself to be super human sometimes.

      Big hugs to you too! xx

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