Not tonight, or any night

I lost it last night, I simply exploded and went to bed with steam still coming out of my ears and tears rolling down my face, I know that isn’t like me and luckily so does Adam. Adam had been out for most of the day, his sister had organised a get together between him, her and their mother, it is something that started years ago after his grandmother died as we all used to go and see her on Christmas day. Clearly I couldn’t go, but that is something I really don’t mind any longer, just because I am housebound doesn’t mean Adam has to be and them coming here, well it would mean a huge amount of work for Adam and stress for me. Adam left at 2pm saying he would only be a few hours, I knew that that meant at least 7pm or maybe 8 as none of his family are any good at time keeping and nothing ever seems to work on the time scales they plan. It was supposed to be a Christmas lunch, a little early, but that was how it was described and despite the fact that when I was made redundant and we could no longer afford to give presents, I knew that he would come home with some sort of gift from them, for him. I should say here that I have made it more than clear over the last few years, that I don’t want any presents and I will not even accept them, as to me it is too painful to accept without being able to give, it took some time, but that message was finally accepted. That though has nothing to do with what happened last night.

Seven o’clock came and went and when the phone rang at 8pm, I wasn’t really that surprise, Adam was just calling to remind me to take my meds and to say he would be home before I went to bed. I took my meds and after the house being so cold last night I thought I would switch on my electric blanket, just to take the chill of the bed, then settled myself in front of the TV to enjoy the rest of my program. Just after quarter to nine I heard the door being opened and I shouted hello as I always do, it was clear by the length of time it took him to come in to the flat that he had something large with him, which he took directly into the kitchen, before coming through here to have a chat about his day. Despite having a longer nap than normal yesterday afternoon, I was still really tired and if I am honest, I was a little annoyed that he hadn’t come home just that bit sooner. I of course wanted to have just a little bit of time with him after not seeing him at all day, he had done his usual on a Sunday and had slept all morning and on into what was basically the last possible minute, before having to get ready to go. We talked for a few minutes but I really had to get ready for bed and I got up to start my normal routine, just before I headed to bed I went into the kitchen to put something in the bin and he followed me, as I was heading back towards the door he pointed out the present he had come home with, there sat on the floor in the dinning area was a brand new printer.

I lost it, on the surface that sound a bit odd, I realise that, but there was several good reasons behind it, including the biggest ones, my PRMS. I was tired and being faced with one thing I totally can’t deal with, change and this to me is huge change, wasn’t the brightest thing for him to do. To explain briefly, we have never had a printer for several reasons, first we don’t need one, in 20 years of having a home PC, we have only ever on a couple of occasions actually needed a printer. Like most people the answer to that is to use the one at work with permission to print off what is normally one page, the length of a business a letter. Secondly, we have absolutely no where to put a printer and we don’t have or want WiFi, so it would mean more wires and more hassle as our router has no more spare LAN ports. The only place that this, now here printer can possibly go, is in the dinning area of the kitchen, an area already over run by Adams piles of stuff that he doesn’t know what to do with, but won’t throw out. It is also an area that I have been fighting with him for years over as to me it should be totally clear to be used when needed, at the drop of a hat, not after a major relocation of rubbish to the bedroom. The fact we don’t eat there doesn’t matter, it should be perfect and ready to use all of the time. Then there is the cost of paper and ink cartridges an expense we have never needed and now more than ever, I also know without a doubt that Adam will print off things that don’t need printing, meaning not just cost but more useless bits of paper to be put into his already huge piles of stuff that shouldn’t be there. But that wasn’t why I lost it!

I lost it because of the fact I was exhausted and more importantly it is change! The damage done to my brain means I can’t deal with change at the best of time, add in the rest and I wasn’t just ready to explode, I did. I couldn’t believe that he sprung that on me, especially at that time of night as he knows better than anyone that it wasn’t going to go well. If he didn’t know it had been bought for him, well he could have left it between the two front doors over night, or until he came home from work today when he could talk to me calmly about, rather than throwing me into a spin that I had no way to get out of. In a split second I had gone from half asleep and desperate to get into bed, to a raving lunatic who wasn’t even able to talk about it and we parted, him into the bathroom for his shower and me back into the living room where I chain smoked three cigs in a hope of calming down enough to be able to go to bed. I had already lost two nights sleep, I just couldn’t afford to loose another because I couldn’t shut my stupid brain up. Luckily there was something on my side and that was I had tweaked my meds last night to ensure I slept well, I had taken and extra 5 mls of my Amitriptyline and turned my G & T into a double, add in the nicotine and I actually slept reasonably quickly after managing to stop the tears that had of course appeared just to complete the picture of a real idiot.

It is really hard when your mind takes over your entire person like that and I can hear the minds of people who know nothing about life with PRMS or even all forms of MS, thinking that I was acting like a petulant child, on the surface that would be a great example, but that child can stop it if they want, I can’t. I knew what was happening, I even said to Adam “if you had shown me that in the morning, it wouldn’t be so bad, but to drop this on me at this time of night…”, clearly I knew, but there was nothing I could do to stop sounding and being so wound up and so angry, which actually makes the whole thing worse. I was out of control and I knew it, that is probably one of the scariest things that can happen to you, to be aware of what is going on, yet totally unable to stop it. For me, maybe not others, I would prefer it if I didn’t know it was happening, if it was not just out of my control, but out of my head. Having the worst memory on earth that you don’t even remember not remembering, would be easier to deal with than having emotions so out of control that they are fighting inside of you, with you standing in the middle of them unable to do anything. I can fully see why people would find that impossible to get their head around, as I know without a doubt if someone had told me 30 years ago that that could even happen, I wouldn’t have believed them, yet here I am living it, not just last night, but again and again, through out my adult life and it doesn’t get any easier, just worse. Once your body has triggered all the different chemical reactions that go with fear, anger and confusion, then through in a handful of frustration and logic doesn’t stand a chance, any more than someone trying to calm you down, even yourself.

This morning it is done and forgotten, the printer is hidden and Adam is at work, I guess he eventually clicked as to what was wrong with me and that it was out of my control and I wasn’t trying to be unreasonable. I guess we will talk about it tonight and yes, now that the printer is here, we will sort something out, there will be a compromise or deal somewhere, there always is. What ever it is, it will include a reminder about not surprising me with change, even the smallest one and especially not ones as huge as a printer.


Please read my blog from 2 years ago today – 22/12/12 – One Year on 

Well I have made it, one complete year to blogging! When I started this I really didn’t think I would be able to come up with enough to write about in one blog far less two, or that I would be…….

1 thought on “Not tonight, or any night

  1. What I enjoy about your writing is how you make things crystal clear about how you’re feeling in the moment. That, I feel, is a gift. I haven’t been on Twitter for a few months and people like you are the reason I come back. I have a major problem with Facebook…feeling like it’s a family obligation and yet you get used to the monotonous timelines of all…taking a long break now from it, and so it’s back onto Twitter. Again, thank you for making that a more rewarding pursuit again. To refresh your memory, I’m dealing with chronic Lyme disease issues, fibro, CFS and now, osteoarthritis, especially in my hands. Love hearing how you cope, especially with MS which is so debilitating in so many ways. I recently went off my clonazepam prescription (for sleep, anxiety) after being on it since 1998. I foolishly went cold turkey..big mistake..but somehow got through it. I was told the withdrawals were similar to having MS complete with brain zaps and all. I, for one, admire your courage, Pamela. Thank you for your blog. It really means something to a lot of us.


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