When you are by yourself, as I am, day in day out, it is incredibly easy to take things to heart. What I mean by that, is that when someone says something perfectly innocently, it is heard or read in a totally incorrect way. When you send as many tweets as I do, or write as much, it’s not really surprising that from time to time, I completely innocently upset someone. It is even more likely to happen when your main audience is those with chronic illness, including those isolated as I am, by being housebound. When you are feeling down, are in a lot of pain or feeling more alone than normal, well we all take things in ways we normally wouldn’t. It used to be something I did a lot until I started to realise that I was just being precious. Then there are the times when I have suddenly found myself face to face with those I have upset, well, as face to face as the internet allows, and trying my best to sort the whole terrible mess out and often making it worse. The result is that now you wouldn’t believe the care that I try to take when I write anything, beyond a, “thank you” or a “(((hug)))”.
It is amazing just how much our moods are affected by what is happening to us at that second. As I said, I have frequently thought that someone was being either really nasty or far too personal for comfort. If you are like me, someone who has only come to social media since I became unable to work, understanding just how 140 characters, (as on my pet favourite Twitter only allows) can skew the real meaning with ease, takes time. Reading what isn’t there, is beyond easy. In the first year, I lost count of the times I found myself sitting here feeling wounded, but for some reason, I’m not the sort of person who makes a fuss about it. I just sit here quietly hurting, and actually making myself feel far worse than I did before I read it. It is easy to say, just take it with a pinch of salt, but when your body is racked with pain and you’re looking for an escape, not persecution, it’s sometimes hard.
Our bodies have so much to answer for, being in chronic pain is something that you get used to, but when you’re having a bad day, it’s affects us in ways we don’t expect. Without a doubt, I know that I, and probably others, wouldn’t bat an eyelid at any of those silly things that turn into that straw that breaks us. I’m using social media as it’s an example, as it one that I know for sure, we have in common. It could just as easily have been something on TV, or that our partners have said, whatever it is, I’m sure you can all sight your own examples. It’s easy for us to understand what is happening when we look back, but others aren’t always that patient. Adam has told me that he has often dismissed all I was saying and how I was doing so, because, he knew that that day, I was in pain, although I was totally unaware of my error myself. Those online can’t see me, don’t know me, and some often don’t care. So like so many things in our lives, it is us who have to take the care, choose our words, and our subjects, with others foremost in our minds. Our lives are so complex and as much as we like being around people, they don’t half make our lives harder.
Chronic illness steals so much from us, and for some of us, our patience is just one of them. I have to admit that I have over the years went through spells of hiding. I know that sounds odd to some, but when you’re struggling and you know that you have recently upset a couple of people, even when for the life of you, you couldn’t see how, it just feels easier to avoid them all. If I have hidden away, I know for a fact, that that means there will be others out there who have done just the same. If blogging has taught me one thing, whatever we have done, someone else out there will have done it as well. The one thing none of us should be doing is hiding. People don’t understand what is going on in our heads. They see our illnesses as physical and never take into account that the mental impacts can be huge. Just because most of the time we handle things well, doesn’t mean that we don’t have our off days. Every spasm, every time that we find ourselves with our arms too tired to push that wheelchair another inch, our mental state changes. It affects what we say and how we say it, and because we are so tied up with ourselves, we don’t always notice it and we can’t tell you, we don’t mean it.
We are tested in ways that the able-bodied and healthy will never understand. What our bodies do to our brains, especially our emotions, is something I know I didn’t understand, until I found myself here. It is only those closest to us who see it, feel it and know how to handle it. Our lives are nothing like they once were and this is just yet another example of how screwed up it becomes. So if I do at any time accidently hurt you, I’m sorry, and if you do me, well, I promise to understand and just brush it away.
Please read my blog from 2 years ago today – 29/07/2014 – Unable to stop
Two Rooms Plus Utilities 
I totally agree with all you say. I have found myself becoming oversensitive and easily hurt by things I read or see on social media and slowly withdrawn myself from society.
As my pain worsens and my time alone becomes extended, interaction with people becomes so uncomfortable that I don’t even care to go out and actually socialise on my good daus.
I really enjoyed reading this post today as I am feeling this way more so now than ever before.
Look forward to reading more ☺
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Thank you for reading, but just remember it’s not you, it’s your health, people do matter. No matter how bad things get, I make myself interact at least here on line, as to be honest, someone out there always makes me smile.
Take care of yourself (((Hugs)))
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Luv,
I have the thing, the thing and the thing and the other thing. And I don’t have the level of complex bullshit you deal with every day. I hear you. I feel your pain. I generally feel if I’m having a shitty day I try to keep it to myself. I sleep a lot or I find something to distract myself. If (& it happens) I find myself giving someone a much deserved serve I try to let the dust settle and when some issues settles I wan to apologise. If they understand, they will get over it. I ever feel my situation is the shittiest in the world, it sucks but there are worse deals in this day and age that is crappier than mine. Chin up love! Take one day at a time. Cheers,
H
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(((Hugs)))
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Reblogged this on FibroWarriorMum and commented:
This blog says all that I think and feel but find difficult to explain or share. Very well written.
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Thank you for the compliment of rebolgging (((Hugs)))
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Your writing makes me feel, makes me think. I am so grateful you write and you share.
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Thank you, as those are the reasons that I write (((Hugs)))
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As I read your post and the comments below, I come to realise more and more that I am not alone in feeling all these things that I do since becoming housebound. I sometimes hardly recognise myself through this oversensitivity to almost everything people say or do. It’s so nice and reassuring that I am not alone in feeling this way, as awful as it in itself is.
So thank you so very much for sharing. *hugs*
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I am happy to have helped, we do all go through it, so stay strong (((Hugs)))
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People dont ,cant understand what someone who suffers chronic pain goes through.and really how can they..it is very difficult.Even the sufferer does not really understand. Having the will to get through a day,can be hard..Just know that we have to cope,and we do..as for mood swings, think that is to be expected..Acceptance helps a lot,because then you feel peaceful at least..thankyou for your honesty in your posts..helps me..and I am sure it helps others .Best regards to you..
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Thank you. I’m sure that it is different from person to person, but I expect that the core experience is something we share, but normally, don’t talk about. Which made it something I knew that I had to write about. (((Hugs)))
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You put it all together so perfectly! Although sometimes it is my hearing or lack of it, that causes me to hide away, or gets me into trouble as I may not know what I’ve said and missed what was said back to the point where it is so tiring to get it all right so I just don’t bother and can work myself into a state. So I hide out.
When I am in pain, usually from a migraine or nerve pain somewhere it can definately affect my listening skills. Then I usually buck up and give it another go because we need people, one way or the other.
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We do, and at least you know your caught up in the spiral. I do now, but in the past I honestly didn’t recognise what was happening, as I didn’t notice the change in me, it was others, and some didn’t like it.
I too have an issue with hearing and I agree totally, sometimes, it’s easier just to drop out of the conversation, as I’ve missed too much. Pain can without a doubt cause that as well, I’m too locked up to pay proper attention. But we do need people, although it does help if they understand what we’re going through. (((Hugs)))
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I feel the same. Easier to hide than be heard on a bad day for me. I am always worried I will offend someone. And I too work myself into a messy state.
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It shouldn’t be this way. (((Hugs)))
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I relate so much to all of this and honestly do know where you’re coming from. I have lost so many friends because despite myself being constantly forgiving towards them they refused to be towards me when my illnesses were making life impossible. I really do believe that regardless of how empathetic a person is, they cannot fully grasp what living with disability and chronic illness is like.
I too find myself often hiding (I’m actually in one of those states currently to be honest) because it seems healthy people don’t understand and my fellow disabled friends (in real life at least) are too busy with having a competition with me to prove their life is harder than mine is to be caring about me. And that hurts, a lot. You think disabled people and those who suffer together would be supportive but at least in my life it’s instead turned into a pissing contest and it kills me every time.
The reason I made my blog was for this very reason, to create a part of a community that is understanding, supportive and forgiving when we all need it the most. We NEED each other to understand.
I hope you know you have my love and support dear friend.
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I learnt a long time ago that especially those so call support groups, were nothing else than as you described, a competition as to who was most ill. My brain, like yours I think, just couldn’t get around it. Why would anyone want to be in a worse state them me? Sorry, but that’s madness. We do need to be here for each other and most of all, we should be forgiving when we make all the horrid mistakes that we do.
I write because I want this honestly our here. It doesn’t matter if it’s our physical or our mental issues that are hurting us the most, it’s about being honest, so that others who follow behind us, know what might lie ahead and just how it feels.
I’m always here, sometimes grumpy, sometimes jubilant, but always honest. Your welcome to chat anytime you wish, just forgive me if sometimes, I’m not gushing or bright, that’s just what being chronically ill is, unpredictable and bit annoying to say the least. (((Hugs)))
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I found that odd to in regards to the support groups.
Everyone is talking about how bad they feel, how many meds they are on, listing the long list of illnesses they have and I am just desperately trying not to be in pain or be on meds.
I am in several but I rarely post.
I befriended a few members who have become good friends but they are a rarity.
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Almost everyone I have met through my blog and on twitter, has said the same. It’s sad, because they should be wonderful resources there to help us through our worst spells. I keep hoping that someone will find the one that works, then tell me and you can be sure, if it ever happens, you will find it here. 🙂
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I could not possibly agree more with all you have said. Likewise, you can always reach out to me as well. I am actually going to put a link to my messaging thing on my Facebook page so that people can private message me, so always feel free to do so ❤
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It took me no the to learn that the support groups were as you said, just trying to see who was the sickest ! That is ridiculous. We are all sick or we wouldn’t be trolling around these sites looking for ?like prop.e to be friends with or just to talk to. Not compete with. I tho k I told you this before. It really isn’t a contest to see who is sickest…????
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Thank u for ur honesty, every word was exactly correct, u have educated thousands about chronic illness👏 👍😀
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Thank you 🙂
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Hi,you sound sort of fit and fighting today and Im glad for you.Understand where you are coming from ,I also get grumpy and feel all sorts of bitch afterwards.I try to apologise but those who care about me don’t mind and those I aggravate (unintentionally) who mind dont matter.It took a while for me to learn but got it now.Im in the hiding game at present and only ventured out because your blog reached the parts that other beers can’t reach.Sending love and hugs.Nx
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Thanks Nancy, stay strong and don’t hide for too long, we do need real people from time to time (((Hugs)))
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I also find the other problem. My negativity projects making people not want to be around me.
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Very much so, I often used to hide as I knew I was doing more harm than good out there. Apologising all the time is exhausting and the healthy get fed up taking it and hearing it. 😦
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Social media, for all its good aspects, is absolutely evil and emotive in this respect: you express the situation perfectly.
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As I said, I used social media just as an example. So many of us find these situations in our own lives. When your in pain, all aspects of life become so difficult to handle. 😦
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Yes it is? I was scolded for talking positive ? Just for. Beei gPositive
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Wow, I can really relate to what you said in this post. Chronic illness doesn’t just mess with your body, but it messes with you mind and relationships too. I love that you said, “The one thing none of us should be doing is hiding.”
That is difficult to do but it is so true!
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I’m actually still trying to find something that our health doesn’t mess with. We, as the person who is ill, know all this, but trying to make others understand, is so hard, and quite honestly, makes being ill far harder than it should be. Maybe one day, the world will understand us, without us having to fight for every single little thing. 🙂
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I literally wear myself out trying to explain my condition to
people. Especially family ! Family who is supposed to accept you as you are and lovingly be by your side Not across from you at a table interogating you….
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I spent years trying to hide from my family how truly awful I felt on my really bad days. I felt guilty if I were cranky or wanted to be left alone. It was as if I were somehow blaming them for my pain. But, over the past 16 years I’ve learned that it’s better to just say I need time alone or that I’m in a great deal of pain and so they need to be a bit more careful in how we interact. The way I did it before didn’t really help. I’d hold it all in then explode for the tiniest thing. Living with chronic pain is something that no one who hasn’t experienced it can understand. It’s so much more than just the pain.
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You said it well. Hiding gets us nowhere. I did just the same with my husband at first, but slowly he was the one who made the change not me. He would tell me I was in pain and if I do explode, he just hugs me, and tells me it OK. I guess we all find our own way with those closest to us, but with strangers it’s almost impossible. We are all caught in our own worlds when pain takes hold, although we can empathy with others, I doubt that we truly understand how each other feel.
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