To an outsider, my life must look so dull. To me, no two days are ever the same. I never realised the depth and variation of sensations, that there are, that one human body could produce, nor the intensity of feelings or the emotional kaleidoscope, that could produce. I guess that we are all mistaken in making one assumption, we are all the same. It’s an assumption, that I made like most when I was still a child. I looked at the world and saw that we all have one head, two arms and two legs, therefore, we are all the same. I had that mistake reinforced when I was constantly told my doctors in my twenties, that there was nothing wrong with me. All the pain, the fatigue and everything else I felt, apparently, didn’t exist, or everyone out there was going through exactly the same, and I was just a wimp. I accepted the second, as fact. I was a wimp and I was just going to have to get on with it, as everyone else did. In some ways, I am now glad that I took that option, as it taught me how to live with what I now know is an amazingly difficult condition, to live with.
I can honestly say, that no two days are the same. Every hour of my life is different from the one before. If I were to look at it on the basic level, yes, I could just say that I am in pain and discomfort, but even that changes all the time. The combinations, the exact locations and how they feel never stands still. I might be motionless, but my body never is. I have tried so many times to explain what it is like, to live within my body, but it doesn’t matter which post you pick, which day, month or year, not once have I been totally happy with my description. I can’t write in the detail required, in a way that would compel anyone to continue to read. By the time, I had pieced together, a fair and detailed description of one part of me, it would have changed and my words would be wrong. I know, because I have tried and the result, is that I delete it and I try again. If I get close enough to being happy and I publish it, I know by the time it is read, all of it will be history. Capturing my life is like taking a still photo of a tornado, it tells you little other than that second in an ever changing process. That’s why I’m happy I learned to live within it, when it was still forming, and long before it became so destructive.
From time to time, someone starts to read who understands how my life is. They recognise some of my posts and connect to events and the feelings that they bring. Those moments of connection, of understanding, mean the world to me. I know and I have said it a million times, our conditions don’t matter, If we share symptoms, lifestyles and emotions, that is what matters, that is enough to say that we are one. But, there are times when I feel so totally alone, like I no longer have a head, two arms and two legs, because, I can’t find the connection of anyone who understands it all. The world out there hasn’t changed, the world out there still looks the same, so it has to be me, it has to be me as I don’t seem to fit any of the moulds any longer.
I have yet to find one other who has PRMS, who I have found that connection with. I have met I think maybe two or three on twitter, but they weren’t the type of people who wanted to share. That’s OK, we all have a choice as how we want to live and finding someone else as open as me, won’t be easy. I know PRMS is rare, but I never thought that it would be such a lonely world to live in. As I have just said, without a doubt, there are people out there who get it, so maybe, it’s just me. Just me, is lonely. Not lonely in a conventional way, it’s not about company it’s about total understanding, connecting, finding a mirror to look in and seeing a reflection I understand. When your body is in turmoil, when every second is different from the one before, well the odds of finding someone in total alinement, says it isn’t going to happen. Even if it were just a shadow world, I’d like to, at least, say hello, long enough to high five in recognition.
I know I’m not the wimp that I once thought I was, I’m a long way from that. I know that I am probably the luckiest person in the world, to have found someone who loves me, who supports me and cares for me. I know that I have a huge community out there of people who read my daily ramblings, who care enough to keep in touch and say hi, from time to time. Yet, as I said, sometimes, it just feels as though I’m alone, which is probably the craziest thing I have ever written, but right now when the pain has jumped off the scale several times as I have been writing this, when I feel as though I have an alien child inside me, ripping my insides apart and spasms flying up and down my legs. I feel alone. Maybe, we all feel like this. Maybe, I’m more average, more “normal” than I think. Maybe, it’s just one of those days.
Please read my blog from 2 years ago today – 18/03/2014 – One simple fact
Two Rooms Plus Utilities 
I understand you. I’m so sorry for all your pain and struggles. I’m thankful you have Adam as your rock to lean on. There are others out there and maybe they don’t have the abilities to contact you. They’re probably so glad to see your daily blog and connect to you and your voice. I’m trying to blog but daily is a big struggle for me. My energy levels are so low right now. My neighbor blew her germs on me and I’ve been on antibiotics for a month now. This is the first time in my life to be so sick. Hang in there. We care.
((many hugs)) 😸
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People ask where I find the energy to blog daily, but this is the only thing I do. I sit here and I spend my entire day, writing my post, and responding to those who choose to talk to me. Writing is my life now. I do, nothing else. So thank you for keeping at least my brain and fingers active. (((Hugs)))
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Awww…you’re welcome. We thank you for for being here and listening to us and sharing your life. I know I’d be lost not hearing from you everyday. You make me think and try harder to have the best life I can.
Live well, laugh often, love much.
((Hugs)) 😊
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Don’t ever think your life is boring. It is the detail of life that makes it interesting, even if as for you so often that detail is pain.
It might make my job easier if all my clients with any particular condition needed the same oils and same massage routine but even though that would mean I had come up with some miracle system that could make me rich, I think I would get bored with it. Every client being different is part of what I really enjoy and the differences you describe from day to day or even minute to minute make your blog interesting.
{{Hugs}}
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Boredom is something I have never understood. As you say, it is the smallest things that are often the most interesting. I have no time for boredom, as I said in my opening sentence, “To an outsider, my life must look so dull”. My life may not be exciting or filled with adventure, but it is still filled with interest and discovery. Too many believe that neither of those things can be found at home.
Thank you for reading and for taking the time to talk to me. (((Hugs)))
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Chronic pain is isolating – no one in my ‘real’ life properly comprehends. My own pain also constantly changes in nature, so much so, it’s hard for me to relate to the doctors.
You have such a beautiful way with words, I like connecting with you. 🙂 Although, obviously, you (I, and others) are in a difficult place not of our choosing.
…and I’m sure you echo many readers own situations. I am glad for you that you have your writing gift and the love of Adam.
May I make you a gift? I like to sew and embroider, it’s therapy for me and I enjoy giving to others. Of course I understand if you don’t wish to share me your details. 🙂
HUGS! xo
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Thank you for your generous offer, but you are right, there is one thing that I never share, and that is my exact location. It is no reflection on you, just on the world in general.
I too used to love to sew. Also like you, I loved to do embroidery, but through a combination of lost sight and dexterity, it has been taken from me. In fact, my last piece of work was the train of my wedding dress and the clutch bag I made to go with it. It is something I miss terribly. Enjoy every minute you have pursuing you hobby.
Take care (((Hugs)))
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Thank you – I love my sewing, it saved my sanity in the beginning. I am sorry you’re no longer able to sew yourself, however your writing weaves pictures too. You’re very talented.
Take care, HUGS!
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Chronic pain, as someone else noted, is a thief. It is a destroyer like nothing else, invisible and devastating at the same time.
The correct diagnosis and medical team help, but those of us in pain rarely get the understanding from that world which we so very much need. I hope for you there is a good team behind you.
I am sad for you that you are not able to occupy your self with your hands anymore. I think that is one of my fears and so I work as often as I can, as long as I can. I think one day I might not be able to do this.
I read your blog often although I do not very often comment. You are a true inspiration and your story needs to be shared.
Blessings to you
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Thank you (((Hugs)))
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I know how that is. It’s like people are around but not fully “in there with you”, but more like on the outside looking in. It’s kind of surreal. That goes 10-fold when you have something unusual. Remember that there is strength in numbers and although we may not all have the same diseases we face the same kinds of barriers “out there” from the non-ill world that doesn’t understand. Together we can make the environment for the chronically ill less hostile and more compassionate. I believe the day is coming when there will be more people sick than not, and although that’s not a good thing in and of itself, I believe it will turn the tide toward more compassion and understanding. People don’t fully “get it” until they get it, quite literally. It may be a hard but necessary lesson for those outside us to learn.
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People rarely understand chronic illness unless they share it. It can often like we are talking a different language, yet we share one in ten words. 🙂
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