Please let me be human

Last night, I found myself snappy with Adam, which is a truly rare thing. He realised within seconds of being home, that I was once again exhausted and that I wasn’t in a responsive mood. It’s not common for me to be like that, normally, it doesn’t matter how I feel, I manage to put on that happy face and make light of it, but not yesterday. Everything about yesterday was extreme, hence yesterday’s blog. I quite honestly didn’t know how to deal with another minute of that day, I was done before it even started. Every element that I have spoken about over the last few weeks, for some reason all appeared together and it got the better of me. I can cope when it is just the constant pain or the endless tiredness. I can get through any day where they are at levels where I can make light of them, or even if one or the other is off at an extreme, but yesterday, they hit me like a mallet, and there was no escaping either. Not even my Morphin boosters were doing their job, quite to the same extent as normal, in fact, nothing was working as normal. For me to be off hand with the person I totally adore, was just the final symptom of a day, that was filled with extremes.

Adam, like so many people when faced with someone who doesn’t want to communicate, who is clearly having a tough time, is to make light of life. To talk twice as much as normal, crack jokes, tell stories and constantly try to get a positive response. When that failed, he then started to ask questions every few minutes. “What is it that’s so wrong?” “Can I do anything to help?” “If I did this or that, would it make things better?” “Have I done something to upset you?” Inside, I was screaming “Please, just shut up”, but the words always come out as “No there’s nothing you can do, I’m fine”. Unfortunately, I was very aware, that my tone was saying anything but. It takes a lot for me to lose my patients with Adam. Like any husband, he can occasionally drive me up the wall, just as a wife, I am sure I also do to him. Even at my worst, I rarely feel as I did last night, and I knew totally, that it was all coming from me, not anything Adam had done.

It can be hard at times to put aside my health, and to try and be the person I am, and I always should be around him. When you have lost all your energy, when your patients with life is thin, even those we love can turn into another annoying blue bottle. They don’t mean to, and we don’t mean to feel that way, it’s just the way it is. Normally, those days are well spaced, but recently, I have found myself there too often, just wanting to swat, what are meant to be loving actions. Adam isn’t stupid or blind, in fact, the other day, he himself said, “Shut up Adam”, then mumbled his way back to the settee. He had come up here just to make sure all was well and to give me a kiss, he didn’t manage either. Too frequently lately, I have pretended that I was busy, engrossed in what I was writing or the game I was playing, not because of him, but because I just couldn’t cope with anything or anyone else at that very second. I feel guilty for it, more so, because I can even explain what is going on to me, far less to him.

Physically, there are two things that right now are getting to me. Firstly, my lungs. I am getting so much pain, not just the normal intercostal spasms, but a separate internal tightness. A times, when I take a breath in, there is pain right in the center, exactly where the bronchus splits in two. My right lung is the worst, as I have areas that are really painful all the time, others that spike out of the blue, sometimes in line with taking a breath, others when I move. All the inhalers in the world won’t help me, as this is muscular, this is all coming from my PRMS. I loose my breath at times, but more than anything, it is simply restricted. Secondly, once again, it’s my stomach. This one I really don’t get as with the increase in the Psyllium, I am actually going to the loo every three days, which is wonderful compared to how it was. The pain, though, is at times off the scale. It’s in the same area’s as normal, but far more intense and lying down or sitting, there is no relief. Psyllium, unlike laxatives, doesn’t cause spasms, it’s simply a bulker and one that adds lubrication. This pain is from spasms, so once more, that means this is my PRMS. Add in the rest of the pain that is spaced out around my body and clearly, the pain is getting to me badly. It’s not constant, but in the last three days, have been exceptionally bad. The pain alone is exhausting, but it’s not alone, as they way I feel right now, I know something else is at play.

If I could get the pain under control, them maybe, just maybe, I might feel better. I say maybe, as I am so used to living with pain, that I can’t be sure, that it is causing how I feel. My Gabapentin increase doesn’t seem to have touched these areas, I’m sure it has, but it just doesn’t feel that way. What it has done for me, is to turn down the pain levels throughout the rest of my body. At first, I thought, that the turning down of all the background rubbish was just allowing me to feel this all the more, but over the last couple of weeks, it has clearly been increasing. My Morphine boosters turn it all right down, but if I take too many in too short a period, I start having vivid dreams that disturb my sleep. The less sleep I have, the more tired I am and the worse the pain gets. Therefore, I try not to take more than one or two at a push in any 24hr period. Yesterday, I put off taking that tablet until 6:30, the time I close down my PC and we settle together on the settee for the evening. Unfortunately, they may deal with the worst of the pain, but they don’t stop the spasm and even without severe pain, they can be incredibly uncomfortable, and just as tiring. By 6:30 last night, I was exhausted, so tired that my brain just could deal with even the TV if I’m honest. It clearly couldn’t deal with Adams attention as well.

When all of this started a few months ago, I never thought then, that it would get this bad. The more I think about it, and the more I analysis what I have written over that period, the more convinced I am, that something bigger is going on. I can’t help thinking, that the increase in pain, and the growing exhaustions, are symptoms, rather than the conclusion. If I could just deal with those symptoms, then I might find out what is behind them. I have always told myself, that it doesn’t matter what my body throws at me, I can deal with it. I still believe that. What I can’t deal with, is the way it is affecting me when it comes, to how I’m treating Adam. I know, that he doesn’t let it affect him, he understands that it’s not really me, but that just makes me feel worse. He doesn’t deserve to come home to someone who it crotchety and frequently downright rude. As he keeps reminding me, “Marriage is for in sickness and in health”, what he conveniently forgets, is that we have been married for nearly 16 years and I’ve spent 13 of them sick. I don’t want to spend whatever time I have left, short tempered and snappy, but I don’t know what the answer is.


Please read my blog from 2 years ago today 04/02/2014 – Making things better! FOR WHO??

After years of getting frustrated by not being able to pick something up or dropping something without warning,I now have a new and unexpected addition. I had been using my E cig and was ready to go to bed…..






13 thoughts on “Please let me be human

  1. I hear ya. I’m going through a period of snarkiness right now, and in the event it oozes out and effects my husband, I feel terrible. He does understand, and knows it’s the illness; not me (so he says), but it still stinks. I suppose you can’t really blame us for being human. We weren’t really given a choice 🙂

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  2. I’m sorry to hear your pain is so overwhelming. Have you spoken with your doctor about this? Do you have a pain specialist? There are other things that work better for MS pain and spasticity than morphine and baclofen. I don’t know what is available where you live.

    It’s so hard to be “on” when you’re in such pain and fatigue that you can barely respond. And yet, we don’t want to alienate the people we love and who love us. And what would happen to us without them? For some of us, that’s not an issue. But it’s something to weigh carefully. You are a thoughtful woman, so I’m certainly talking out of turn here! But the thought weighs heavy on my mind at this time, because I can no longer type because my hands go into spasms, and I can’t help but think…what will happen when I can no longer…because I have no one to help or even to check on me. And certainly no one to love me in sickness and in health, or in sickness, period, as it happens.


    • I have been through nearly every drug there is, Morphine was the drug of last result for me, and still is. My Dr wants to increase it, but I’m not ready to do that. I understand the issues it causes, so I shy away for now.

      I know all about the hands going into spam. Mine started it a few months ago and I totally understand how it causes you big issues.

      I know that you have chosen to be where you are and believe me, I totally understand your need to be free and making the most of what time you have. But for someone who is so lucky to be loved in the way I am by Adam, I have to say I am concerned about your situation. I guess it’s my problem, not yours, but it worries me that there is no one checking on you from time to time. As you say, I am thoughtful, I analyse everything. Have you thought about contacting one of the MS charities. They might be able to assign you a sort of distant carer, who can check on you by email/skype? Clearly, I’m not talking about long detail chats, more a code system if you like, should you need help. It might give you some peace of mind.

      Take care xx

      Liked by 2 people

      • Thank you so, so much for caring! I do have a loose network of friends who call/email/text from time to time if they don’t hear from me. And I have my service dog, who is truly amazing. She helps me get up if I’ve crouched down and can’t get back up, and has recently learned to go one step at a time as I hold onto her harness to go down stairs. She also helps me navigate any uneven ground, so I can actually walk short distances outdoors! She comforts me when I get the weepies and clowns around to make me laugh. Precious doll-baby!

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  3. “please let me be human”,,, hum, I don’t even know how you and others deal with your disease, and all the challenges it has. I really don’t. I am” snarky” enough with FMS/CFS, shingles and the extras that goes with them. And much of the time I can’t even stand myself. Sure I try to be nice and patient with others, especially my husband. But it is so hard, so tiring and as I say this I realize how selfish I sound. My comeback to him when I have an extremely ugly day is “well at least you get to leave the apartment and be around people 8 hrs. a day” And again I realize how awful that sounds because he has a blood clotting disorder and has had multiple blood clots in his legs and is left with sometimes huge open wounds that don’t heal for a1 or 2 years. And yet he gets up everyday and goes to work in a warehouse and walks? miles a day on those painful sore legs.(Yes I am sure he has a ball his 8hrs a day out of the house.) I piss myself off so badly and don’t deserve someone like him. And what’s more aggravating is I sound just like my mom. And that’s not good. So I think you must be a saint to go thru what you do and still treat you husband good, most of the time anyway. We are so lucky to have them. We could be like Laura P.Shulman M.D. M.A. above and others that have no one. I don’t know how they do it. I truly do appreciate my husband as I am sure you do yours. I just wish I could be nicer to him. Thinking of you, Brenda in the U.S.

    Liked by 1 person

    • Maybe the doctors should work on that one, a nice drug. I think the queue for it would be out the door.

      I guess the truth is, that we always take these things out on those we love. None of us want to hurt them, it’s just they happen to be there, for you and I, they are the only ones there, so get what ever it on the surface and what is more considered.

      Take care 🙂

      Liked by 2 people

  4. I guess you need to look for other outlets to release the frustration and other negative emotions, so maybe you can avoid sending them over to your husband. I like playing words games, as the only thing I’m thinking about when I play is how to spell a word. I’m not sure it’s a release, but it does help distract me. How about finger painting? Molding clay? Taffy pulling? 🙂

    Liked by 1 person

    • That is the reason I play PC games. I too prefer the puzzle ones as they make me think about anything else that what is happening to me. Sometimes though, I bury myself too deeply, and that is just as bad if he interrupts my line of thought. Distraction only works so far for all of us though, there is a point when our true pain always appears. Unfortunately for him, he is highly persistent with his questions and desire to help, were this is no help to be given. (((Hugs)))

      Liked by 2 people

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