Avoiding the gaps

I used to find this so easy, I would just sit down here and start to write. The words would flow and I never felt as though I was even thinking, it was a flow of words from where I had little idea, they were just there, they were always there. In the past week, I have sat here three times and tried to write and on each occasion, there has been either nothing or just a rant, about the building work going on downstairs. As much as that has dominated my life for the past three weeks, writing about it wouldn’t really supply anyone with something of interest to read. It wasn’t until yesterday, that I started to understand why I am suddenly finding all of this so hard.

I know that I have often written about the issues that I have had over the years with both my memory and the problems that it causes when I try to talk. So far, I have been able to think with amazing clarity, my problem has been when that thought has to be turned into either action or spoken words. Millions of trips into rooms with no remembered reason for even going there, and even more hours filled with stutters or silences, when words totally vanished on me. Yet, I could both write and think with a fluidity that never let me down. How? I never managed to work that one out fully, it just was, and I so loved that it was. It allowed me an escape into normality, the way I could see existed for others. It appears that that has come, or is coming to an end. I can no longer even think clearly, almost all my thoughts are now stuttered and paused with gaps where I can’t find the next word. Even that narrative that we all have going on in our heads, has become like any other conversation.

For a long time, I thought the reason for the difference was that I wasn’t under any pressure when writing or just thinking to myself. I didn’t have to be understood or to think quickly as we all are when talking to another. When writing, there was no one there at that second who would read my words, nor was there someone inside my head to see what was going on there. Yet now, even when in that state of no pressure, I keep falling into a muddled spiral that gets me absolutely nowhere. It hasn’t stopped me trying, but trying is never enough, we all aim to succeed and when we don’t, well the pressure suddenly appears, all applied by ourselves. The more it went wrong, the worse it got, until I found myself with no memory of what I set out to write about in the first place.

It took me a while to work out why I could manage to write about the builders with a greater ease than anything else. It was simple, I could hear little else other than them, and their constant noise was like a dictation machine, feeding the words to my fingers. With any other subject, there were those nagging silences, the gaps that required me to reread, rethink and try again, just as I am now. It doesn’t seem to matter how rested I am, how relaxed or how silent the monsters in the flat below are, my brain just isn’t working the way it did, just a few months ago. The only time I am free is when I’m asleep and trust me, I am also getting far more of that than I ever did before. In fact, even on the days when I have my alarm set for 10 am, I switch off the alarm and struggle to get up, often drifting back to sleep. No one needs more than 13 hours sleep a day, no one except me.

On the good side, I, at last, have an appointment with my neurologist, I will see him on the 14th of this month. On the bad side, that means another trip out in an ambulance and all that brings with it. My health has changed so much since I have last seen him, well it would over ten years,  but the worst of the changes have taken place in the last 18 months. Because I keep myself constantly up to date with what is happening in the MS world, I have a horrid feeling that he will not be able to help in any way. At the best, he will send me for updated tests and possibly change or add to some of my meds. At the worst, he will do his normal, smile and ask me if I would like to come back and see him in a year. To be honest, I quite simply want to put my mind at rest over some of the things that have become part of my life, like the issues I now have with actually being awake.

Also on the good side, I am totally in love with my Charcoal toothbrush and the Charcoal tooth powder. The difference that the brush made was clear to me within a couple of days. My whole mouth feels cleaner and teeth feel squeaky clean at all times just as though I am seeing a hygienist every day. When the powder arrived a week later, I started using it after lunch every day. It’s not quite a week yet that I have been using it, but I can clearly see a difference already. Even stains that have been there for years are slowly disappearing and my teeth are without a doubt, whiter. So if you haven’t yet, go and buy both, they are amazing.

I’m sorry, my brain has had more than enough for now. This has taken three hours of writing with two half hour breaks and one of over 13. If my brain doesn’t return, which is something I hope it will do, I am going to have to find a new way of writing, as I don’t want to give this up. I see it as an important record of how this illness really affects me and I don’t care what happens, I’m going to keep it going.


Please read my blog from 2 years ago today – 09/02/2015 – It’s time for change

I woke last night once again with intense pain in my back, this time it was so bad that I had to reach for my booster pills, it’s the first time that back pain has made me do such a thing. I know that it is stupid and that they were prescribed for dealing with pain, but I have them linked so tightly to my PRMS and COPD…..

17 thoughts on “Avoiding the gaps

  1. Don’t give up no matter what! You have devoted readers here who support you and want you to do well. It’s incredibly courageous of you to have gone this far detailing all the things that are happening to you so that others may know and understand.

    Liked by 1 person

  2. Yes, please don’t stop! I look for your blog every day. You are one anazing and courageous human being. Your life, I am sure has helped countless others to endure. I am healthy, for now, but a full-time caregiver for a husband rapidly losing himself to Alzheimer’s. Kudos to Allan who has been steadfast and there. You have true love!

    Liked by 1 person

  3. Synchronicity…just bought some charcoal air freshener in a plastic container; it’s a great (natural) substance to have in one’s house. Sometimes I use baking soda instead of toothpaste when I brush. It works well ~ not having the heavy consistency or strong aftertaste we can detect from toothpaste. That your ability to clearly think is “alive & kicking” I find marvelous to read, as well. At the part when you had written “…nor was there someone inside my head to see what was going on there” i had the funniest imagery of a hatch being lifted up from the uppermost part of a skull. An imaginary character holding a flashlight peeks in. Thank you for sharing your insights. No point in “overtaxing” one’s brain. Get rested. Blessing and xoxx hugz. xxox

    Liked by 1 person

  4. I too got through periods of sleeping all the time and that awful brain fog. They call it a fog but to me that makes it sound like normal forgetfulness, and it is so much worse than that 😦 Mine is due to Lyme disease which flares and eases some. Hope you will feel better soon and so sorry you are struggling. Thanks for writing and sharing your story 🙂

    Liked by 1 person

  5. I’m not sure if can helps but maybe find a symbol based AAC to helps find words. Me has aphasia and that helps lots. And write in small amounts. Me can take hours to days or weeks or even months to finish something am writing. Me types in on the notes folder and when is finished can be copy and paste.


  6. “it just was, and I so loved that it was. It allowed me an escape into normality, the way I could see existed for others” This expresses why I blog. You said it perfectly, and you know there are “buts”. My “buts” are I feel like no one cares. Then I have to kick myself and remind “me” that I blog for education. Hoping some day a doctor would get curious and read. Having a rare disease means you don’t get treatment and you have to educate each doctor you see. Add that you have to smile through their rude comments or their laugh when you bring up a side effect of your disease. I don’t get to my “big computer” much but I do love reading your posts.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s