In search of help

I’m trying so hard to move forward, to accept what has been happening in the last couple of weeks, but I still feel overwhelmed by it all. Every time that I open my mouth and hear myself talk, I just want to cry or scream, depending on the moment. I quite honestly don’t think that I have said more than five or six words recently, without a stutter or forget what I’m saying. It feels like someone stole my brain, but I’m not even sure that I want it back, well, without it, I probably wouldn’t feel so bad about the rest of it. I always knew that the day would come when I would lose control of my life and my body, but I didn’t expect it to all happen in such a short period of time.

If wetting the bed, forgetting and sounding like a fool all the time wasn’t enough, I have developed so many twitches and tremors that not even lying down, brings me peace anymore. Until now, although I knew my legs could melt from under me, I now have the added joy that they simply give up and fold. Something has happened around the muscles in my leg joints, at times it feels as though they simply won’t lock, and instead, shudder and hesitate, unsure whether to hold me or collapse. Before I never really felt scared of standing up, I have everything arranged in the house so that even if they melted, I was safe. Now, bang and they’re gone. The worst of it, though, is my arms are doing the same, I can’t even trust them to catch me. It really feels like every muscle in my body is plotting against me, and there is no way of getting them back. If you thought that the UK was having political problems, it is nothing compared to the fight going on inside me.

For five days now, I have been drinking Furosemide in an attempt to get rid of the fluid that has been collecting throughout me. Five days on, well my hands are perfect, my legs not too bad, but my feet, well they are still swollen, not as bad as they were, but they still aren’t my feet. Standing, when I can, is still painful and please don’t touch the tops of either of them, as that’s real pain. The really good thing on the fluid side is, I’ve had three clear night of not wetting the bed, but I don’t want to say that too loudly. I never thought in my life that my first action on waking would be to slide my hand under my bum, to check the moisture level before I move, but that’s yet another addition to my life.

Normally, I am really good at getting my head around things, to find a way to making it all fit and slot as just another part of my life. Right now, there is so much and so many different bits and pieces that I don’t really know where to start and even where it will end. The sheer volume of change is totally defeating me. Don’t get me wrong, I’m not slipping into depression, it’s more that I’m slipping into an exhausted confusion. I just so wish that I could have a single day, or even half a day without something dramatic, exhausting or upsetting happening. I long to wake up in a dry bed, for the internet to work smoothly, without annoying phone calls, or no people ringing the intercom, who just want me to let them in, but it’s not for me. For my fingers to understand how to type, for the tremors not to take over and sheer rubbish coming out on the screen. I want to not feel sick, to actually want to eat the food I fetch, without discovering that I’m no longer hungry. If I am, I would just love to be able to eat it without my throat hitting spasm mode and making it all too difficult. All I want is for my day to start and end as days use to. Then, I might just have a chance to turn my mind to accepting any of what I need to work through. I don’t have the time to even think about it, far less work on accepting it all. Is normality, really such a huge thing to ask for?

When just over three weeks ago, I phoned the Doctor to say that I was in a flare, I thought a few steroids and life would settle back into life. I didn’t have the slightest idea then, just how wrong I was. I have never had a flare like this, as in the past, it has been one thing, a lost arm, not being able to breathe and talk, always isolated to a set or group of recognisable nerves. I didn’t even expect a flare could take over my entire body and screw it all up. I’m feel lost. All too often, I find myself just sitting here, trying to work out what next or even how I got here. I have no answers, no idea how to fix all of this, or if this is it for the rest of my life, nothing but new things going wrong, one after another. I have to get some kind of control, some sort of acceptance and understanding, but I don’t know where to start. If you have a clue, well let me know, as I’m totally lost as to what I do next.


Please read my blog from 2 years ago today – Seeing it clearly

I think I have broken through the worst of this phase of uncontrolled muscle tightening, I sat last night on the settee without constantly having to put my arms into stupid positions in a hope of stretching the muscle to the point they would give in. It was totally motionless, I still did it occasionally but that was the big thing it was occasional not constant. So far the morning hasn’t been too bad other……

27 thoughts on “In search of help

  1. Praying for you lovely. I read your blog most days, today you have moved me to tears. I am so sorry this is happening to you, it isn’t fair and it isn’t right.
    I pray that you are able to find some peace in the middle of it all and that this flare ends and all your speech and leg/arm function returns rapidly.
    Much love xx

    Liked by 1 person

    • Other than Adam, I am alone, but I spoke to my daughter last night and my friend Jake calls at least once a week. Visitor are thin on the ground outside of my carers. Although it is hard to deal with, in many ways, visitors make it harder. I always feel as though I have to fight and cover what is happening to me, so I land up putting on an act, which is totally exhausting and doesn’t work that well. Which is when I start making excuses. Thank you for your offer, but honestly, today, I am heading back to my bed for a nap. All this twitching and jumping of muscles wears me out. If I sleep, I at least escape for a while. I do, though, really appreciate your offer. (((Hugs)))

      Liked by 3 people

  2. I have similar problems. I sometimes feel that everytime I open my mouth I am moaning. I know exactly how you feel. I can only say my thoughts are with you, wish I could be of more help. xx


  3. Thinking of you across the ocean. I always read your blog as well and it’s terrible that you are going through all of this every day with no relief in sight. Big hugs to you and your family.


  4. I don t know what to say. You are important and come first at the moment.

    I have a lot going on too! boy it s hard and your post help ie sharing with integrity and with huge amounts of compassion.

    Occupational health have just been referred by social services regarding bathroom, lovely lady experienced too.

    This week I can t walk with frame at all, fortunately after a two yr wait I got electric chair, at the time I was not priority I got an electric chair about a year ago now. This week coincidently it is unsuitable so I said I need one with a head rest today occupational health totally agreed and is sorting one out. Pains me but…….

    I find it hard saying do this or that because we’re all different and so are services as you very well know and I am always frightened of making a situation worse, the last thing you need. But if I were you at this time I would alert occupation health yourself or ask social services to refer you for electric chair as you easily would qualify I think and be a priority. I d do that first.

    Please look after yourself and do not deny feelings, take things slowly and what you can cope with at time I always explain how overwhelming every thing is to people who come.

    As an escape I watch Political Big Brother well ……enough said???

    Take care I ll send you a DM if that so ok.


    Liked by 1 person

    • I tried to get one off them about 8 years ago, at that point, I was turned down. One of the things that puts me off, is the turning space of an electric chair, compared to the one I have now. Some of the spaces in our flat are quite tight and finding one that will fit through, I think will be difficult, as I did some online searches and found nothing suitable. I guess it’s worth a try.

      I take it your meaning a Twitter DM, sorry having one of my dumb days, if so, send me a tweet to tell me it’s there, if not, please explain?

      Take care 🙂


      • Oh sorry I have sent a Twitter DM just to say hello and hope your body calms. Just as I m replying to your posts quite a lot. Best intentions and thanks for replying. 🙂


  5. What you are going through seems unimaginable. You have such a beautiful way of putting it on paper and sharing your experience in raw detail. Thank you for including us on your journey. I see that you feel week right now but from your outlook on life I can tell how strong you are. You inspire me. My prayers and thoughts are with you through this time of your life.

    Liked by 1 person

  6. Idk, what to tell you. When I am overwhelmed by pain, change, and stressed because of it,,,I go to bed. Yes I go to bed. I know nothing else to do so I do nothing. I know I can’t stop or will my body to do what I want it to do. Maybe you are at that point also.If you can’t change what is happening give your self a break. Just go to bed. I have to tell mysel the world won’t stop spinning if I just go to bed. But now my mom might worry me to death, I’m supposed to be helping her. Not worrying her. But I am. And I can’t do one thing about it. So,,,,,I am still in bed.
    No I know you are strong and strong willed !! And that is great. Me too. But this one time, try you going to bed, and not worrying or trying to control it. It stinks,! Being sick stinks ! Being out of control stinks ! More for some of us than others. And right now your body is changing too fast to deal with. And you have known all along this would happen. You have been stong and handled it wonderfully. But maybe now you need to rest. Do t worry. About anything or anyone. You need to rest. See what happens. It might help !

    Don’t worry, we will all be here when you feel like talking. We will be listening and offering worthless advice. ; ) as usual. REST. CALM YOURSELF, WE ARE RIGHT HERE WITH YOU. (((hugs))) and lots of love for you always……

    Liked by 1 person

    • I totally understand your reaction, it is something I used to do a lot, and in a way, I still do as I sleep for 12 hours a night without fail. In fact, that is were I vanished to yesterday afternoon, only reappearing just before Adam came home. It is something I started fighting against when my night time sleep rose so dramatically, but yesterday, I gave in. You are right though, bed is a great place to hide when life is just too much. (((Hugs)))

      Liked by 1 person

  7. I wish I could give you some help. some sage advice.
    It pains me to read what you are going through.
    not as much as it pains you to go through it obviously, I realized just how dumb that sounded.
    my best to you in this most difficult time.

    Liked by 1 person

  8. Hello,read your blog today,I cant believe how you cope,I have problems sure but not like yours.The oxy makes me feel a little confused and that my head is in the shed but I find it easier now to just go with the flow.If you reach a stage where you want to talk I’m here.I can listen as long as you like just D M me.Sending love and thoughts.Nx


  9. Pingback: Taking a time trip: | Two Rooms Plus Utilities

    • It’s so annoying when life falls apart and there are no answers, or even ways of putting them back together again. It always feels like a house made of cards, one shifts when the rest tumble in on top of you. I hope we both find some answers soon, take care (((Hugs)))


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