I woke again this morning with the feeling I was on an alien planet. It’s a feeling I am unused to, but I doubt I will ever learn to like it. I have tried hard to work out what is behind it, but I fail miserably every time. All I know is, that it just appears out of the blue, and it’s far from something that only happens when I first get up. This morning Adam was actually still here, rushing about to get himself to work as he was already running behind time. He did his normal on seeing me floundering, he hustled me towards my desk and demanded that I sat down. It felt like only minutes after he left that the phone rang. It was Adam, now that he was at work, he wasn’t to double checking that I was OK, as he clearly wasn’t happy about having to leave me like that.
For a couple of years now, I have been having these spells, where I suddenly appear lost. Not only do I appear it, in a peculiar way, I actually feel it. Yes, I know where I am, but it is my movements that are lost, I don’t seem to have total control. At times, I will start to shake, it’s only slight, but my body seems to go into what I can only describe as a physical stutter. It’s as though, it doesn’t know quite which direction I should go in. I used to think that it only followed a change of mind as if my indecision, had become visible, but then it started appearing for no reason that I was aware of. I don’t need Adam to tell me how I appear, I am very aware of how it must look. If I saw someone going through it, I too would be ushering them to the nearest seat. I instinctively raise my forearms, as though I am ready to catch myself, and I know that I start looking confused and uncertain about everything. No matter where I am, standing or sitting, my body will start to tremor. Normally, I lose control of my legs, they start shaking uncontrollably, it’s like ever major nerve is dancing. When it first started, it only lasted a few minutes and would then ease, leaving me feeling not totally myself and with a desire to head to safety, otherwise known as my bed.
When Adam called, I did what I could to convince him that I had recovered, but my words and voice betrayed me, so I did my best to brush it off as my not being quite awake. In some ways, that is a good description of it, as though I’m not quite there. Don’t ask me where I’ve gone, but I’m not here. It’s now two hours, since his phone call, in that time, I have only recovered partially.
To be honest, I have been feeling this way a lot recently, just not quite myself and not quite at my best. Nor is it just today, that it seems to be pronounced and determined to stick around, making life slower and more difficult. In some ways, it is similar to an MS fog, as my brain is more than a little dim in its activities, but I’ve never heard a fog that has affected you so physically. MS fog is what makes us forgetful, to do things like putting your plates in the dishwasher, before you’ve even put your food on them. MS or even Fibro fog can cut you off from the world, leave you feeling as though you have no brain left, as you can’t remember even the most basic of things. I live daily with that Fog. No concentration, inability to add two simple numbers together and as for correctly writing anything that can be spelt wrongly, well that’s a given. I don’t think my brain has been clear for years, but it shouldn’t make me shake, it shouldn’t leave me feeling lost as to how I am going to turn around, as my body is determined to go the opposite direction and my foot is now stuck in mid air, as I can’t quite find the command, to put it on the floor. To me, that isn’t fog, even the thickest. I could be wrong, and if I am, please tell me.
We all stay quiet about these things. The things that make us doubt if we are safe to be alone, even though, we spend only seconds anywhere other than sitting. When we don’t feel safe, when we doubt our own ability and capabilities, who do you tell and how? Slowly over the last few months, I have been admitting I am no longer capable of so many things. First was asking Adam to sort out all my medications for me, to deal with my mail and to make phone calls for me. Then it was the move to my wheelchair, followed by my admission that I really do need grab bars in the bathroom, which I have now bought and are on their way. In the last couple of months, I have on a couple of occasions broached the subject with Adam, of bringing in help for me, during the week. I don’t know what help is out there, I haven’t the slightest idea, other than the MS nurse seemed positive, that I needed help and it is there. I no longer feel safe, whether that is in my mind, or it is factual I don’t know. What I do know is that not feeling safe, isn’t a nice place to be, and my tinkering, just doesn’t seem to be enough. No matter how much I have defended my independence in the last few years, I can’t help feeling that my health has reached a point, where it’s time to give in and at least take the first steps in finding out, what help there is.
Please read my blog from 2 years ago today – 02/03/2014 – Self, me, myself
I can’t imagine what this feels like for you. I’ve had fibro fog so bad I’ve gotten lost in a city I know or forgotten a letter in my own name (seriously) or just forgotten what I was saying in the middle of a sentence but I can’t imagine the “physical stuttering” the way you describe it. I feel for you so much. I’ve read your posts and it makes sad to know what you’ve been through. I know how chronic illness can rob us of who we thought we would be. A friend of mine has MS and she’s about to undergo some form of brain surgery at 23 years old. It breaks my heart. So I just want to commend you on your strength, your beautiful way of writing about the darkness and your will to endure. You’re an inspiration.
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Thank you. I know all to well being lost where you shouldn’t be. I once walked into my office, turned the corner into my room and didn’t have a clue where I was. It’s distressing and those around you, don’t have the slightest understanding of how you feel. Well I know exactly how you felt.
Stay strong and take care (((Hugs))
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Thank you 🙂 it is definitely a unique experience, that’s for sure. (((Hugs back)))
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Am so sad for your conditions – which are not what you are – and so glad I have come across your writing. You write so precisely, calmly and gently about terrible issues. You write like an angel. I myself have two chronic illnesses I know of: one, since the age of ten; the other, since the age of about 41. I struggle to understand, as well; but never give up struggling, either. Thanks for following; I gladly follow back.
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Thank you for returning my follow and I hope we both grow through each others words.
Take care 🙂
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I can’t count the times I’ve shown your writings to my Dr. When I can’t get the words together or out of my mouth. You write so precise and understandably. I don’t know how you do it but I thank you so much. The energy, time, and thoughtfulness you put in to you’re diary/blog is very much appreciated.
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I just hope your Dr doesn’t diagnose me with another condition. LOL 😀
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HAHAHAHAHA! OMG…I just woke up and read your comment……perfect. Same sense of humor….hahahahaha. I can tell I’m going laugh at any crap that comes near me today.
Hope your day is laughable too. 😄
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I am sorry you have to experience this. It is psychologically traumatizing to feel unsafe on a regular basis in your own space.
Sending you love and compassion,
Annie💕🐇
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Thank you 🙂
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