Time to prey

I don’t know how to write about the last couple of day, or actually, even where to start, as, in many ways, this all started about a week ago. I know that I have written about all the stress and tribulation of going to the hospital and finding that the tiniest muscles in my face can really destroy you, but there is has been other things taking place, things I was ignoring as I didn’t want to believe they mattered. I’m not sure of the exact day, but I think that it was probably Friday of last week, that I started to find that my arms just weren’t up to doing the limited things I required. At first, it was just this feeling of them becoming tight and stressed. I had to keep stopping and shaking my arms out in the hope that they would carry out the next action without complaint. As the days have ticked on, it has become worse and worse. Even something as simple as clicking my mouse, made my arms feel as though they were going to explode and that I wanted to scream. It wasn’t pain, just a tension that stopped me from living my normal life.

Both of my arms are affected and as I spend nearly all of my day on my PC, well, it was just a matter of time each day before I reached that point, where not just my arms, but I wanted to explode. When your life is limited, and something is doing it’s best to remove even that little that you do have, well, frustration and anger grows quickly. The actions that I am able to complete, are all now stilted and so much slower than I am used to. In the past, I have been used to just my left arm causing me problems off and on, but this time, it is both of them, and that isn’t funny in the slightest. I have literally been sat here in tears, doing my best just to copy past a name off twitter into my spreadsheet, or whatever it was on my spreadsheet into to twitter to send. The tiniest action felt almost impossible, and each one caused the internal tension to grow and grow.

It wasn’t until this Thursday that I really started to take it seriously and to face the fact that it wasn’t just something and nothing, this was something that was totally unignorable. The exhaustion that I thought I had caused by doing just a few facial exercises, was being made worse by every tiny thing that I did, including just trying to hit a few keys on this very keyboard, I’m sat at now. My hands seem to be tingling all the time and my level of feeling I have in them, keeps coming and going. Both of them are also shaking whenever they take the notion, something that is a touch upsetting when you’re trying to light a cigarette or have a drink. It was on Thursday, for the first time ever, I had to switch off my PC just after 4:30, I couldn’t manage anymore, normally, I’m sat here until about 6:30. All I could do was just sit on the settee and hope that resting would bring them back to me. It didn’t.

My left arm is affected from my shoulder down and so far, in my right arm, it is just from the elbow down. There is no way that I can lose one, far less two, after all, they are my only mode of transport these days, there is no other way to move my wheelchair and I don’t dare to use my legs. Stopping and resting may sound like the answer, but as soon as I am motionless, they start shutting down. I can feel it starting at one point, then just spreads and spreads, taking them over totally until they just feel dead, although, I can actually still move them.

When I woke on Friday morning, my left hand was close to useless. I had to coach it into doing what I wanted, but it was once again a slow and daunting process. It was so bad, that I knew there was only one thing to do, to call my Dr for another round of Steriods. He has prescribed me another round of, and I dare you to pronounce it, 500mg once a day for 5 days of, Methylprednisolone, yet another mouthful in more than one way. At this moment, I am without a doubt, losing my hands and I am not going to let a flare take them aways from me as it took my left-hand years ago. Without a doubt, this was the wrong time for me to have gone through all the outings and so on, that, I have in the past week or so. I have been over stressed again and again and my body is once more showing me that I am not up to it and it really doesn’t like it. I have managed in the past to take high dose steroids without much of an issue, although I know that many find them horrific, to me, the worst thing about them is their taste. I don’t know how they do it, but the second they are in your mouth, there it is. It doesn’t matter how quickly you swallow them, or how much liquid you follow them with, that damned taste is there in your mouth, and it’s foul.

Adam was at home on Friday, because we had the visit from the Social Services, something I will write about in my next post as there is too much to tell today. His being at home, though, meant that as soon as he was free, he could take a taxi down to the doctors, fetch the prescription and head home again. I have to take them just once a day, but it does mean, an extra five tablets to swallow, as if I didn’t have enough of them, to take anyway. It is very much a case of swallow and hope as it isn’t a written guarantee, that anything will improve, just my best shot. When I spoke to the doctor he told me to give them for three days and if there wasn’t any sign of improvement, I will need to get in contact with the MS Nurses at the hospital. I know already that that will be a more than interesting conversation since I haven’t been there for about 8 years, I’m just hoping that I don’t have to make it, or when I do, I don’t land up again in their clutches.

 

Please read my blog from 2 years ago today – 05/06/2014 – Time to kill the bedside

One of the problems I have had all my life is an enquiring mind. I know that many won’t see that as a problem at all, but trust me it is, as it has managed to cause me more strife and lost friendships than anything else. I have always soaked up information, stuff that most people forget or don’t even listen to, in itself that can be a good thing, but the downside is that I have never understood……

19 thoughts on “Time to prey

  1. Pam, You are in my prayers. Linda Steinberg

    On Sun, Jun 5, 2016 at 7:14 AM, Two Rooms Plus Utilities wrote:

    > livinginalimitedword posted: “I don’t know how to write about the last > couple of day, or actually, even where to start, as, in many ways, this all > started about a week ago. I know that I have written about all the stress > and tribulation of going to the hospital and finding that the ti” >

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  2. I am so sorry that you are dealing this this. MS is a horrible condition and I am thinking of you and hoping the additional pills, while aggravating, will help. I am in the middle of taking my 8 for my Lyme disease myself!

    Liked by 1 person

  3. Hi Pam, I hope the use has come back in your hands. Mine went numb and I lost the use in both hands and one leg a few weeks ago. It is the worst I have been so far in 18 years of illness and was very scary. I think it was overdoing it and an infection which caused it and my one arm is still week. It is so frustrating but we appreciate the rare good days so much. Sending you hugs and be kind to yourself.

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    • Typing is fun, when done at snails space. not! My fear is that like 10 years ago that I lose one for a year. So far on my second day of drugs, it does seem just that bit better, only time will tell, but I did lose both legs from under me, twice this morning. It seems we win some and lose others. Glad to hear yours is improving. When even when we have learnt to take it easy, will life actually let us do so? (((Hugs)))

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      • I want to believe that this is critical point which comes and goes away as it is appropriate for chronic diseases, Your wish to live will be conqueror.

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  4. Hello – thank you for stopping by my blog. I am so very sorry for the challenges you face every day living with MS. Living with an invisible disease (Fibromyalgia) is why I started to write as well. I didn’t think I had anything to say until one day I saw this question in my mind’s eye “Does God really love me if I am chronically ill?” I knew the answer was yes from everything I’d already experienced and I wanted others struggling with any type of chronic pain in their life to know that amazing, freeing, wonderful truth as well. Wishing you unconditional hope every moment of every day.

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    • I stopped by as I also have Fibro, so I am always interested in what others have to say. I see it as our responsibility to tell our stories in the full as our doctors and all the official websites, tell us only a fraction of the full truth. Keep writing as every voice is valid and every voice is needed. (((Hugs)))

      Liked by 1 person

  5. Try taking the steroids with baby food, it really helps to mask the flavor almost completely! If you can find one with rice starch it totally masks the flavor. I also have fibro, COPD, severe Asthma (hence my steroid knowledge) and AVN (loss of blood supply to bones in my hips, knees and ankles) and have been disabled since 2007. Hugs

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    • Thanks for the tip, unfortunately, I had to face the final dose this morning, but I will hold that in note for the future. I have done all that I can to avoid them orally, but there is no other choice now, without having to stay in hospital rather than just go there for treatment. (((Hugs)))

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