Sensations go deep

Would someone please cut off my hands and give me some peace! Please!! Sorry, I’m whining. It’s not like they are the most painful things I have ever had attached to my body, it’s just they won’t shut up and won’t give me even a seconds peace. I thought that the steroids would have done the trick, that today, they would have been as close to normal as they ever are, but their not and it’s not just them. You know that feeling, when you have just come inside, on a bitterly cold day and your skin is so cold, that it feels like it is on fire. Well, I have that from my elbows down to my fingertips, (worse on the back of my hands), my cheeks, lips and nose and oddly, at the top of my spine and on my front, are disks about the size of a side plate. Not so intensely, it is also inside my mouth and down into my stomach. Add into this, the fact that my eyesight is also totally screwed and I can’t see anything clearly. When I woke this morning I was so tired that all I wanted was to go back to sleep, but I had twitches so bad, that staying still was impossible, usually, lying down clamps my body still, but not even that was working. I gave up trying at 7:30 am. My body is still screaming out for sleep, I’m dizzy and I would just love to throw up. PRMS really sucks at times!

This flare isn’t showing the slightest sign of going anywhere. My doctor said if they didn’t work, that I should call the MS Nurses and see if there is anything more modern to try. I haven’t called them, but I have looked online and there is nothing. I have searched and searched, but not even the research papers showed a glimmer of hope.

Feelings and sensations don’t really sound like much, but they can be both distressing and overwhelming, especially as I haven’t had total peace from them for over a week. Everyone alive has had things like pins and needles, but in most people, they last maybe ten minutes, they’re annoying for the time they are there, then they are gone. This is far more intense than pins and needles, but try just for a second, imagining your living with them right now and they aren’t going anywhere. They have plagued you for a week and all that seems to be happening, is they are getting worse. There is no escape, nothing that will break them, even for a few seconds and you’re isolated inside this mess of constant sensation. Skin isn’t supposed to crawl, it’s not meant to be beyond alive, it’s just supposed to be there, doing nothing. When nerves are going mad like this, I have to admit, that I get scared by it. The past has shown me, that it can all too often, be a prelude to them stopping doing anything at all. This is a mirror of when I lost my hand, it too started with sensation, built to weakness and then died. For that to happen to two hands and my face, well I’m sure you can understand my fear.

Jane, my carer is due here again today, although I wasn’t even slightly aware of thinking about her coming, I suppose that there is a chance that her visit, is also playing a role in my not being able to go back to sleep. Everyone has been so supportive, so many great messages and people telling me that I am in their thoughts. I know that it’s not, but it still feels so stupid that something as simple as someone helping you shower and dress, feels so huge an event in life. I am beginning to get myself past the point of “I just can’t do this”, after all, we are three days past her first call, and I haven’t died.

In an odd way, Adam has helped me a lot with the whole process and he has done it without even knowing. Because I am struggling so much with life just now, he has been stepping in to assist me. I know that this might not make sense to some, but because my tremors are so bad, he decided on Thursday that he was going to try and stop them. I have written before about how physical contact between us is difficult, due to the pain I am in, the pain he thinks he will cause, and simpler things like the positions that I sit in and because I rarely sit still. I was in full flow of tremor that just wouldn’t give in, he suddenly slid across the settee, pushing himself as close to me as he could, then clamping his arm around me. He hasn’t held onto me like that, on the settee, for what feels like a really long time. I have to admit that at first, I was really uncomfortable with it. Not because of how he was holding me, but emotionally. It has been a long time since he has done such a thing, that anyone has really touched me, outside of goodbyes and goodnights. Physical contact in that way felt alien to me and I realised that that was part of the problem, no one has really touched me, in any way at all, for years. Outside of Adam, I haven’t even been touched by another human being for years, not even a handshake.

While we were sat there, things started to click together in my head. Without a doubt, I know the biggest thing with Jane coming here, is my loss of independence, but it was also followed abruptly, with the fact that no one has seen me naked, or even semi-naked, touched me or been involved in my life, outside of Adam, for as long as I have been housebound. Just having Adam holding me, opened up things I didn’t expect, and showed me, just how much I have really been isolated. As we sat there, I felt myself putting all of this together and I understood, even more, why I have been beating myself up, stressed to the max and so uncomfortable with this new phase of my life. Being showered by someone, brings together all those things I haven’t been involved in, or felt for years. Understanding is always the first step in living with anything. We have to understand before we can accept anything.

I’m not at ease about today, but I am far more at ease than I was on Wednesday. If I felt well, then I don’t think that today would be half as bad as the last visit, I just feel so bad and that is something I can’t change at all.

 

Please read my blog from 2 years ago today – 12/06/2014 – Somethings don’t change

It is only, 7:27am, extremely early, well it would be if I hadn’t been awake since just after 3am. I woke again as I did the other day with mad sensations, throughout my entire body, not painful, but when your skin is alive and burning, sleep doesn’t come easily. I did try, in fact, I lay there for half an hour before getting up for a cigarette in the hope that just being upright and moving would be……

28 thoughts on “Sensations go deep

      • Right from diagnosis I said I was happy to try anything, even experimental. Nothing happened. I actually think it has a lot to do with where you live, not just your condition. If there is research going on where you are, then you are asked.

        This exact treatment sounds a little hairy to me though, as they have already established that one in twenty four die from it. That’s why I said it’s good to read other versions of the same report. Different writers, pick up on different things. With results like that, there is clearly a lot of work to be done and they probably won’t be looking for those, who have been seriously ill for a long period of time. In fact, most actually want newly diagnosed as the condition, isn’t so deeply embedded.

        Thank you, though, for thinking about me and if I get the call, believe me, I will be writing about it here.

        Take care (((Hugs)))

        Liked by 1 person

  1. Comment by: Stephen Walker

    Hi Pam,

    You seem to be in a dreadful place at the moment.

    I read into your words a lot of STRESS. And stress is a VERY negative player in MS.

    You need to find, and I know it seems impossible, a way to relax, properly relax and let the concerns of the world pass you by.

    The visit by Jane is playing on your mind. She is probably a very nice lady but, she is invading your space. She is coming into your house when you just want to be left alone.

    If you don’t object, I should like to write a post on this subject and use your experience as an example. I will credit you with a back link to this post and would ask you to provide me with a brief comment that encapsulates your emotions right now, that I might use.

    Like

    • I know all about the stress factors. I have been trying hard to cur off and go somewhere else, especially, as I know I am in a flare, but it’s easier said than done.

      Please go ahead with you writing, I will try to come up with a comment for you to add, although right now, I’m not sure what, mind you, I’m not awake. πŸ™‚

      Like

  2. I hear you. Everything hurts. It’s impossible to imagine unless you have been there. Have you tried meditation? There is also a part of your brain that sends the message of pain. If you can train yourself to switch off that part…..no more pain. Discuss with your pain clinic or GP. Good luck.

    Liked by 1 person

  3. Oh this is bloody awful I ve had sensations but not near this extent .. I hope its a flare and eventually fades, you need a holiday from the sensations! The beautiful embrace from Adam sounds great and brings tears to my eyes and probley something he s wanted to give to you for so long give him one back when your up to it! I m being positive here thats when your dreadful sensations calm. I know what helps for me in the medicine cabinet I mean is only slightly but enough is clonazepan and pretty gablin plus the visit from a carer and yes I ve said I don’t want to get out of bed to her and was offered a bed bath ( she is so caring she wanted me refreshed)I had a shower πŸ˜‚. If your not up to a shower just have a wash with help at hand. It’s not written in stone. Be gentle on yourself. Really really hope your multitude of sensations calm down and a little touch of lovingly contact happens more often. Our bodies can easily shut it out when you sound you have loads of love to give just a small spontaneous touch now and again will help in a place that doesn’t hurt☺ hopefully you got a spare inch. This pain your talking about is one you never read about anywhere to this extent, as I know of,so congrats again for managing to record it so well. Well eventually I hope you get your shower and enjoy it sort of. Taking things slowly as you have is the best way as you have and is my motto but I ve run like a bull in a China shop which has been one huge mistake. Any way if you watch Sunday night TV or what ever you do enjoy and hope all this passes and eventually calms. X

    Liked by 1 person

    • I’m hanging on to the flare theory, as I couldn’t bear this as a constant. As I said the other day, I desperately need a break and I am hoping following Tuesdays hospital appointment, I will get one. My health isn’t up to these constant events, I need some peace and some rest more than anything.

      Adam holding onto me, meant a lot and really did change things in the way that I feel emotionally. Of course we hug, give each other a quick kiss and so on, but just being held in that way, was so different. Somehow, I am not going to let go of it again, even though it is miles deep in other problems.

      Thank you for the tip about being able to say, “I’m not up to this”. I honestly hadn’t thought about it. πŸ™‚

      Liked by 1 person

  4. Hope fully we can share things, I thought you and Adam had the kisses etc but the bear hugs are difficult. When I told my step grandson about SW coming to talk about my sore legs I asked him what should I do he said ‘ chop em off ‘ he he I said I d have to shuffle on my bottom. Maybe a 3 yr old gets stuff more than ever. But no way do they feel like your hands. I have faith it’s a massive flare.

    Thanks for your reply x x x

    Liked by 2 people

  5. Hello, I don’t know if this will help, it did for a while for me.I was in a good deal of pain,from upper spine to foot.I was told to lie or sit where I could be reasonably comfortable,begin at the feet and concentrate in switching off the foot,when that was done move up the leg and switch off that part and continue up the body switching off,eventually I would fall asleep and find at least I had a little respite.It took me a little time to get it but it worked.I was certain it wouldnt work ,soft right? ,give it a go.You read as if you are a bit better, I do hope so,if I can help in anyway,tell me.!Sending loveNancy.

    Liked by 1 person

    • Hi Nancy, This is a brilliant technique that I was taught many many years ago. I find that it has mixed results when it comes to nerve pain, but I use it almost daily for other types and of course, if I can’t get to sleep.

      Thank you for taking the time to outline it here and for thinking about how to help me πŸ™‚

      Liked by 1 person

  6. I vaguely understand the constant pins and needles thing, as it is part of my fibro stuff, but I don’t understand the fear of it possibly ending in nerve death completely… that’s a terror I can’t comprehend, and I’m sorry πŸ˜₯ it sounds truly awful and I wish I could understand, but the best I can do is hope that this but won’t end that way for you and is just being triggered by the stress of the massive changes in your life right now. Hopefully when you reach a place of understanding and a little less stress, the sensations will decline and you will return to your previous level of normal. I will keep that wish in my thoughts for you and send positivity your way.
    I’m sorry you’ve become do isolated. I’ve started realizing I’m doing that to myself lately too, and I’m trying to stop it. It’s nice that Adam is willing to try to help with the tremors though, but I understand the awkwardness (Dan had done the same when I’d gotten them from pills). It sounds like you needed it though, at least from a mental perspective.
    As always, I’m sending positive good thoughts your way!

    Liked by 1 person

    • I don’t believe that nerve death is a problem with Fibro, I could be wrong as clearly with my having both Fibro and PRMS I am inclined to get to two muddled. Yesterday, I saw slow improvement in somethings, but I’m not jumping in any direction yet, it’s too soon.

      Our men try so hard to help, and I realised a long time ago, it’s often better to let them do whatever it is, than try to explain that it doesn’t stand a chance of making any difference. We have to love them for it though.

      Take care πŸ™‚

      Liked by 2 people

      • Nerve death isn’t a problem, that’s why I don’t understand that terror. However, the pins and needles pain that lasts for what seems like forever is one of the pains I get with my fibro. I don’t think everyone with fibro gets it, but I do. It’s one of my least favorite pain types, and I’m really sorry you experience it on a semi-regular basis 😦 I don’t think I’ve had an episode last quite as long as the episode you describe here, but I can imagine how utterly miserable you must be! 😦 Hopefully, there will be relief around the corner for you!

        Liked by 1 person

      • I think your idea of nerve death and mine a different. When the nerves died in my left arm, about 10 yrs ago, I lost the total use of that arm for nearly a year. I could be wrong, but do you see it as just loss of sensation? My terror is the possibility of losing all use of both arms, life was almost impossible with one, two, well I’d never manage.

        Liked by 2 people

      • My idea is the same, I mean it isn’t a problem with fibro. Nerve death is definitely a problem! I mean it isn’t a problem i have to worry about so I don’t don’t understand that party of what your after going through. I was trying to avoid simply saying “I understand” and instead give a frame of reference for what I exactly I am able to understand and what I can’t.
        — I understand what nerve death is; but what I am incapable of understanding is the fear of it happening due to illness progression.
        — I understand the horrible discomfort that long bouts of pins and needles sensations cause as I’ve often had them for days at a time myself due to my fibromyalgia.

        Do the bullet points help reframe how I was trying to say that the first time?

        Liked by 1 person

      • Yes, thank you. It came across very differently, as though you couldn’t understand why I was terrified by the possibility of such a things. I thought my wording hadn’t worked and that I had totally failed to get my point across.

        Thank you again for explaining. πŸ™‚

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  7. Pingback: Sharing – Sensations go deep | Possibility of Being

  8. Hi Pam….I was so hoping you would be relieved of this awful feeling by now. ….But I see you aren’t. I am so sorry and worried for you. I don’t like giving advice, so usually I dont, but I can’t help it, I’m going to. I do fear nerve death and paralysis because of my back. Along with other goodies I have DDD. Sucks. I have had e surgeries and tons of p.t.. And will have much more. Heres the only thing I that helps me, streching even if it means the therapy people have to do it for me, gently. Ok,, maybe not for you.I understand. Next gabapentin. You probably already take that. Next, epidural blocks in the spine. That is what saves my sanity. It doesn’t always do a lot for the pain but it gets those pesky nerves settled down. I have been getting them for 20yrs. Sometimes it takes a series of 2 or 3 to do the job. But they save my sanity and limbs. Probably none of these alppeal to you or maybe you already tried them. I just want you to have relief so damned bad that I can’t stop thinking about it. Please don’t be aggregated by the suggestions. I know this blog is for you to tell your story, not to receive armchair advice. Sorry I won’t do it again. But I will hope you get relief , soon ! And yes those bear huggs can work miracles. I also put myself in a
    corner and avoid people. Avoid their touch and conversation. Except Joey. He like Adam is my rock. I hope he doesn’t break under pressure.

    Like

    • Sorry I didn’t answer this sooner, I saw it this morning before we headed out to the hospital and I’m sorry to say, I forgot about it when I came home.

      I don’t mind if you feel you can help, who would, help is what we all need after all. Yes, I am on Gabapentin, you were right there. I am hoping the new trick I came up with a couple of days ago will keep me going for now. I did discuss nerve blocks with my doctor years ago and he said they wouldn’t help me, because of the condition I have. I can’t remember why. At this second I have too much in my head to think clearly, I hope todays short post will put you mind at rest about me. I do worry that what I write upsets others, so please don’t worry.

      Take care (((Hugs)))

      Liked by 1 person

  9. Glad you saw this and it didn’t upset you. Did your hospital appt go okay??I dread those for you. I know it’s a lot of moving around and bumping you.
    Don’t worry about us get to g upset. As I said before I feel like you are my closet friend now and I am normally concerned for you.I am so glad you found something to give you relief. Wish someone could find a cure for your awful disease. And as long as MS has been around I don’t understand why they haven’t found a cure. Of course there are lots of diseases that don’t have a cure,,,but .MS is one of the most horrible ones. And lupus. My sister in law has lupus, very severe. I lost another sisterinlaw to lupus and a good friend. It is a horrible death. Yes those 2 diseases need a cure, or at the very least a better treatment. She is on 35 different pills every day mutiple times a day, plus chemo.Its awful, and she won’t quit work, don’t know how she does it. She says if she ever stops going and doing things and working she knows she will die. That’s sad.She goes from 6am til 10pm every day, terrified to stop.She has 2 grown boys an a grandchildren, she sAys she refuses to die her. Mind over matter. Haha. Glad it works for someone.. Someone mentioned in you replies today that meditating helps them and can stop pain. I cannot do that. I sure wish I could. Especially right now. The pain today is big !!! Hope you are better. Stay wrapped up. Too bad you aren’t here 98 degrees. I hate it. I hate being hot. Is a winter so much. Btw I’m still in KY with my mom and I am so tired and feel myself slipping back into a flare. But I’m stying as long as I can. Who knows. At her age I may never get to see her again..and this is the first time in 5years I have gotten to come home. So bye til the next time, still reading your older post.😌😌🌸🌸

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    • The problem with both MS and Lupus is they don’t know what causes it, without that, they can’t cure it.

      I too hate the heat, it makes me feel sick and so tired, I would far rather that it was winter, which is odd as the central heating keeps the house warm. I’ve never got that one.

      Take it easy looking after your mother, there is no point making yourself ill. If you do, you won’t be of any use to her at all, so take it slowly and enjoy your time with her, that is far more important. (((Hugs)))

      Liked by 1 person

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