This is something I say often, as it gives me a very basic wag of explaining my disability.
But today I had a spurt of energy to be productive, you know the one. And it didn’t line up with my body’s ability to do what is physical requited of me to be productive. I hope that made sense. It did in my head.
Anyway, once again I’m just struggling with who I am, and what that makes me capable of. Specifically how that differs from what I want to do with my life.
Though these parts of myself do not match almost all of the time, it rarely bothers me. But when it does like it did today, it’s just hard for me to deal with.
Sometimes to even try feels like to much when toy don’t think your body will let you do it anyway.
And it always seems to hit me when I have a lot going on, like this week. I never really get the option to just disappear like I want to sometimes, to just be away from people, due to the help I need. I get a couple of hours at most. But it doesn’t feel like enough.
Part of me would live in the middle of nowhere away from everyone, in these moments. But I don’t have the option.
I’m sorry I don’t feel like I can say more about this right now.
I have very limited control in my life, therefore the control I have is very important to me.
This translates into a few different areas into my life.
One area is the files on my computer. This makes sense when you realise that I can put everything where I want and in whatever way I want. There is no way my files will never not be accessible to me.
I think this is part of the reason I got so upset when I lost a file the other day, which I still haven’t found. It’s because I feel like I’ve lost control in an area where I had control, and that’s scary.
The file isn’t even that important, and I’m working on getting a replacement for it.
So this one’s to say don’t judge what other people find important because you don’t know why it is that they find it important.
Sometimes this is an easy question to answer, but it seems not today. I honestly don’t know the answer right now, sorry.
Usually, I would say something like my emotional intelligence, but it honestly feels like that might be doing me more harm than good at the minute. Or my honesty, but it’s hard to be proud of that one when it feels like t cares other than me about the fact I’m being honest or trying my best. And it feels like I weakness when a lot of people around me seem to lie so easily and not to care about doing it. I wonder why that isn’t something I can do.
I really tried with this one but I just don’t know what to say, sorry.
I’m writing this post shortly after being asked by my sister to be quiet. To be fair to her it was gone at 2am when she asked me, I have a messed up sleep schedule to thank for that I suppose. I have many experiences of people telling me or heavily implying that I struggle to control my volume when emotional. I get loud. It doesn’t matter whether I’m happy or sad. If the emotion is strong I get loud, and I don’t even register it.
The fact I am not aware of this change in my volume is something that I don’t think many people understand or believe. And to be honest I kind of get it. It’s only after being told I was loud, that I realise I was loud. That said looking back on the time when I’m told I was being loud it doesn’t register as me being loud.
I guess here lies my biggest problem, how do I control a volume problem that I don’t even register having?
I have often wondered if this links to my Cerebral Pasly, or my exclusion from society. It is common with Cerebral Pasly to struggle with doing multiple physical things at once. And I wonder if the act of controlling the volume of my voice, the physicalities of speech and the emotions I am feeling is just t much. This makes sense to me as I think I experience a lot of my emotions physically. But I honestly can’t be certain if this is a Cerebral Pasly thing or a me thing.
What I can be certain of is that when I’m emotional I am not intentionally being loud. I am very sorry if I am. I am trying to control it I promise.
Out of interest if anyone knows anything about Volume regulation and Cerebral Pasly or other brain related conditions I would definitely love to hear what you have to say.
I’m struggling with this today. Not particularly with not being disabled, but with how much of the world seems open to those who are not disabled.
I watch my friends succeed in doing things I will never be able to do. Get that job that pays them well enough to get that house, that I wouldn’t even be able to consider with the job. As you know even if I had the money to get the house it wouldn’t be accessible to me, or I would have to pay to make it so.
I have to check every level of life for its accessibility and it often fails. And I guess today that’s just draining me.
I just want to be able to live my life.
So if I’m off with you when you give me good news. I apologise. I tried not to be. I am incredibly happy for you and the success you have found. I’m just still stuck arguing for my basic rights on a day-to-day basis. Some days it feels like I will never get anywhere near what you have and I am envious.
For a long time I struggled not blaming myself for my inaccess to the world. It was hard to believe I wasn’t the problem, when everyone was always making so clear that I was.
As I get older I go through periods of being busy and then free as I’m sure we all do. And every time I reach this quiet time from the business, I’m reminded that I no longer feel disabled. In all honesty, this makes me not want to go out a lot.
But I won’t let the ableism of society beat me. I won’t let run my life. I’m going to keep trying.
But no more for today. Today I think I’m just going to sleep.
I think for the most part this is an advantage I have over non-disabled people. That is that, for the most part, it is easier for me to admit that I can’t do. The shame I feel is not the same as that which non-disabled people feel, it seems.
I’m writing this post specifically because I’m currently watching some people close to me struggle with accepting what they can’t do, and what they need or could do with some help with. I honestly don’t know if they’ll ever get there, before it becomes a situation where they have no other options. But watching them struggle with accepting things that are almost the norm for me, makes me look at the help I need a little differently.
For the most part, I accepted a long while ago that I will always need help. that there will always be things I cannot do, and that this does not make me less of a person. But watching others struggle with that, makes me wonder if they do not see me the same way. In other words, if they see themselves as less for needing the help that they do, does that mean they see me as less as well? Logically I doubt it, but part of me still wonders.
Though it took me as someone who was born with their difficulties and has needed help all of their life, time to accept the reality that I need help. Some people do not realise this, as they think if nothing has changed for me, there is in essence nothing to accept. Understanding that this is not the case, and that acceptance of a reality you do not want is difficult for anyone whether or not it is true, is important. But I imagine that it would be specifically difficult for anyone who is experiencing this as a big change in their life. Needing help is difficult to accept especially for those who are not used to needing it. I have to remind myself of this, and that they are not in fact judging me for the help that I need, when they are struggling with their new reality.
So, to anyone that is reading this, while facing the reality that they need help, or may soon find themselves in need of help, I say this. Needing help for anything does not make you less of a person. It is okay to ask for help. It is okay to need help. There is no shame in it. And from experience it is easier to have that help in place if you can, before it becomes completely necessary to your life, and as such something you have no choice in.
Something else to remember is that it’s okay to struggle emotionally with needing help, with things changing for you in whatever way they change. Your emotions are okay, and they are valid. Just try not to let them prevent you from needing the help that you need, try not to let your own feelings make you suffer. I say try specifically because I recognise that this is difficult to do. That even I, despite knowing my reality made decisions to avoid needing help and though I’m not proud to admit, to look less disabled, which ultimate resulted in me needing more surgery.
I hope excepting the help you need becomes easier for you, it certainly has for the most part for me. And that you are able to live your best life possible.
This entry is an update on my previous post – Green Green Grass. In which I talk about the state of my garden and trying to get on the local scheme in my area to get it sorted.
I had a response today, to my re-inquiry of the issue from several days ago. Which basically gave me no update. Only that my request had been passed on to the relevant team. Which was the same update I received when I first made the enquiry to get on the scheme months ago.
I’m slightly frustrated that they didn’t give me any new information. But at least I have written proof that they have not forgotten about me I suppose.
I’m torn with what to do with my garden in the meantime honestly. I could probably get a few family members to sort out the garden this once, and trust me it needs doing. But I’m worried if I do that, they somehow may not think I need to be on the scheme if that makes sense.
Having others around you that could help you, can be scary when you need government provided help. It feels like a risk to take a one off, that may cost me something I need. This is something that I also have to be careful with the day to day help I receive from my sister. I have to have just the right amount of help from my sister, to ensure that my council provided care isn’t compromised in any way. Or that no one suggests that I need more care from official sources.
The concern that I could one day be placed in a care home, if the amount of care I need to receive officially costs the council to much, is very real to me. That is to say the care I receive and from where I receive it is a balance to say the least.
The help I receive is always a balance, as it seems like it may end up costing me my independence in some way. I hope that makes sense.
Anyway in terms of the garden, I’m no closer really. But I hope I find out where I stand soon with this.
As a disabled person I often feel like the term ” career plan” is a little bit ignorant of reality, a little bit too optimistic.
I wish that I could have a career plan and simply stick to it. But the continued in accessibility and ableism of society makes this difficult.
If you’ve been following me for a little while you will know that I am trying to look for work. At this point I am trying to look for any work from home, as this is the most accessible work to me at the moment. This is despite my qualifications in other areas.
While qualifications are important to some career plums, experience, may also be considered equally if not this is more important. Well I have the former in my chosen career area, education, I lack the latter.
When even my University struggle to find me experience in this area, it is not surprising that I find it so impossible alone.
It was suggested to me recently, that I complete volunteering work to get the necessary experience in order for me to get a job. As I haven’t got passed the interview stage previously due to this lack of experience. That is if I believe the managers of the job I did manage to make it to the interview stage with, that my only flaw was my lack of experience, and this itself is not ableism. My difficult in getting experience is surely reflective of the ableism of society. This suggestion that I would just be able to get experience in the field is definitely ignorant of the reality I have experienced.
This is all without considering the fact that the physical energy it would cost me to work, makes it only worth it for me if I am paid for the work that I do. I am far to qualified to put in the hard work involved in this job, simply for the sake of volunteering. This might sound harsh, as if a job is just about money. But I think I am just facing the reality that money, proper payment for hard work, is important.
And finally, lets not forget that I deserve to be paid for my hard work, and the fact I’m disabled, as a result of which a job is even harder for me to get. By that I mean that I cannot just take any job that comes, doesn’t mean I should simply volunteeer. I also want to add here that I have a great deal of respect for those that choose to volunteer, but I want paid work, for my own self worth, to prove I can earn my own money.
So you can see my chosen career path is a little complex, and I’ve only told you a very small part in all of this. I haven’t even begun to consider here the difficulties that could be involved in adapting a role so I can then complete were I to get it. It is all just very complex.
So I am looking for any job that I can do from home, just to be doing something, and of course earn a little more money. Though the same issue of lack of experience does also plague me here, at least other issues of access will not, when I hopefully eventually find something.
It might also be worth mentioning here that I am trying to get in to a professional freelance capacity if I can, and maybe eventually an author, in my longer term plans. This way I can at least give some of my dreams a fighting chance.
Do wish me luck with all of that, and I wish you all the best of luck with your career plans, and if necessary your back up career plans. I hope whatever you do works out for you.
My Inaccessible Life 