I’m currently sat under my electric blanket worrying that because it’s my birthday I should be doing more with the day.
I’ve been out to see family and walk the dogs. I’m honestly now considering a nap.
I’m really tired.
It turns out your disability doesn’t go anywhere, even on your birthday. Who’d have thought?! Joking, because obviously I knew.
I’m watching Love Actually and getting a curry later. So that’ll be fun.
But I’m trying not to dwell on the things I might be doing on my birthday if I wasn’t disabled.
Some days it’s just hard you know?
Even though today is my birthday, it seems to be a hard day. So I’m going for a nap.
I also made this TikTok which for emotional preservation reasons is entirely a joke.
Image Description: Me facing the camera from underneath a blanket.
The text on the screen that’s not read out on the above video reads: “POV: It’s your 27th birthday as a disabled person you do the bare minimum with your day and then you get back under your electric blanket and film a minimal effort TikTok.”
So this morning, the way I was dressed and put into my wheelchair has left me feeling uncomfortable. It’s going to be a long day as a result.
I honestly can’t tell you with 100% certainty whether this happens because I am so difficult to get ready or because the carers simply don’t do their job properly some mornings. They would argue the former, I’m more likely to think the latter is true, obviously. But as I can’t look at this situation objectively, I can’t give a definite answer.
All I can tell you with certainty is something about the way I am sat and, or the way I am dressed, has left me feeling uncomfortable.
There honestly isn’t anything I can do about this until I get into bed later, as my carers have left. So I’m stuck.
Every time I find myself in this situation, which thankfully doesn’t happen often. I wonder why I don’t say anything when my carers are here. I can only think it’s because when I have said things in the past, they haven’t listened to me or understood what I’m saying. Or there additional help comes with an element of blame or anything other than there ability to do there job.
Either way, just remember that it can seem easier to get help than it actually is, when you’re the one in that situation.
The temperature has been weird lately, welcome to global warming I suppose.
It’s the cold that really gets me personally causes me a lot more pain. And honestly right now I just don’t want to go out.
I’m sat under three blankets, because that’s all I can reach on my own. This includes my attic blanket and I am still cold. The thought of going out today, just makes me angry.
I don’t have to go out, but I’m supposed to. And I honestly if I want to anymore, it really just doesn’t feel like a free choice. The thought of getting out from under these blankets honestly just seems like a bad idea.
I guess you could say that the temperature has made the world inaccessible to me for the time being. Or at least it’s made it feel that way.
I’ve been struggling with a different kind of pain in the past few days. it isn’t a pain that’s completely new to me, but it is when I haven’t had in a long while.
I’m pretty much always in some sort of pain, but thankfully it’s not a very severe pain. it is one I’ve become very accustomed to To the point where in the past when I’ve been really strong pink was in hospital and not felt it I’ve asked to come off the painkillers because not being in that pain is confusing for me.
But this pain that I’ve been struggling with is a different kind of pain. it’s not even as bad as my normal pain, but it’s enough that it’s really throwing me. I’m just so much more uncomfortable.
I think this might be the hardest thing to explain to people that don’t know what chronic pain is like. Sometimes it’s not the severity of the pain that throws you but the type of pain it is.
Anyway, I need to get some sleep as I have things to do tomorrow, even if it turns out, I can’t leave the house again, so I really need to get some sleep. That said I feel so uncomfortable right now that I don’t see it happening.
So my sister has a friend staying and we were going to watch a film. But that would involve me staying in my chair after the carers come. It’s simply not something I feel physically capable of doing this evening, nor is it something I want to do.
While my sister has found a way around the problem, I won’t lie I still feel a little guilty about it. I feel like I’ve ruined the plans.
I know I haven’t, logically. But the guilt is real.
When rolling me the morning the carers were not careful enough to ensure both my legs stayed on the bed. A combination of this and the sheets fabric meant that both my legs fell off the bed. They are now hurting me and will probably be sore for a day or two.
I am lucky that most days after my care my pain will almost completely go or at the very least go to my level of normal, if I am positioned correctly in my wheelchair. But after this incident I don’t think that today will be one of those days.
I’m well aware that accidents happen but sometimes they happen because you don’t take enough care. In situations like what happened to me, when they happen you are not the one left suffering, someone else is. So please take extra care when doing something when someone is at risk of becoming hurt if you do it wrong.
This is one luxury I afford myself around once a year but in all honesty, I buy a new one whenever my current one breaks or if I’m smart looks like it’s going to break. I try to buy one in the summer if I can afford it, especially if it’s been a while since I bought my last one. I do this simply because they buy in the summer, as not many people would buy one in the summer therefore they are usually cheaper.
That said as the primary purpose of an electric blanket for me is pain relief, I’m not sure if you can actually call it a luxury for me. That is I suppose unless you want to refer to not being in pain as a luxury, which may be something some people who experience chronic pain might do. That said personally I do not see not being pain as a luxury, for me pain is a state of being.
This might not make a lot of sense to those who do not experience pain daily. I specifically say daily here because the pain that I experience is daily, as opposed to some chronic pain that is daily but also constant. My experience of chronic pain is aggravated whenever I move for the most part which is only twice a day when I get in and out of my wheelchair. That said this does not take into consideration bad pain days, during which I am in a higher level of constant pain, perhaps something akin to a 6 or 7 on the pain scale. Though this is not my experience of pain most days.
Thinking about it I realized that I am in some level of constant pain, perhaps somewhen between a 1 and a 3 on the pain scale. As I am so used to it it almost doesn’t register until it increases when I start moving. I often refer to this as background pain. The reason I have to think about this pain to register it is because I’m so used to it. This pain is just my normal.
I want to take a moment here to remind anyone reading this that pain is a relative experience. For this reason, there are many different pain scales used in order to understand the pain person is experienced. Two of the most common ones I’ve seen are pictured below. The first picture is a more serious what may be considered ‘standard’ pain scale. A pain scale like this is usually used to determine whether pain is serious or not, or if something needs to be done to relieve pain. The second picture is a pain scale that is quite obviously considered more of a joke pain scale. I have sometimes referred to as a chronic pain pain scale, in recognition of the fact that people that experience chronic pain experience pain in a specifically different way than people who do not experience chronic pain. That said there are better chronic pain scales to use then this one, which is clearly meant to be funny as well as somewhat informative.
Image Description: This image shows what is referred to in the article as a colour-coded numerical pain scale. This shows different levels of pain on a scale from 0 – 10, ranging from Blue which is titled ‘No Pain’ to 10 which is titled ‘Unable to Move’. Each number has a title and a brief description of that pain level. Image Description: This image shows what is referred to within the source article as the “Hyperbole and a Half Pain Scale. This shows basic faces and stick figures linked to different numbers on a scale of 0 – 11, also including one option above 11 titled ‘TOO SERIOUS FOR NUMBERS’
While these examples as well as some more examples of pain scales can be found here. It is important to remember that experiences of pain can be so unique that’s an individual may want to create their own pain scale, specifically in the experience chronic pain. This is something that the article linked does touch on. However please remember that this article has not been verified and is purely for informative purposes of different scales. There are definitely better sources that you could use in order to guide your own journey to finding a pain scale that works for you
When I say for me pain is a state of being, I say this because I experience a great deal of confusion with how I relate to my body on the rare experiences when I do not experience any pain. I recall a time in hospital when I was given an epidural for pain management, and therefore and very limited feeling if any at all in my legs. This was in all honesty a very confusing time for me because I’m used to my legs hurting even a little bit all of the time. I was worried something was seriously wrong.
So my electric blanket is how I deal with this pain, because the vast majority of my background pain is muscular and in my experience therefore helped by heat. My eletric blanket is incredible helpful in this situation. I’m even known to use my electric blanket intermittently for pain control on extremely hot days.
So what do you think would you call something that is often a luxury to the majority, a luxury when it is not used in a luxurious way?
So last week I was in a lot of a pain, but I honestly did not realise this until the weekend just gone when my pain started to lesson. Pain is nothing new to me, I live in a constant 3 on the pain scale, so a new pain does not instantly concern me. Especially when it for me has a logical cause. So it wasn’t until the discomfort was no longer there, that I noticed it had actually been there.
So I guess this is just a quick note to say that your pain is valid. No matter how new or old it is. No matter how well adjusted you are to it, or how much it throws you. No matter how well you are able to function within it. I believe you and I believe your pain. And whatever you are doing or not doing while you experience it or a flare up of it, is exactly all you need to be doing. And lastly its okay not to understand or register your pain in the moment, that does not make it any less valid. It still occurred.
My Inaccessible Life 