It shouldn’t be this hard

I feel so weak, I don’t have a clue why I should feel like this, but I do. In fact, I started feeling like this a couple of days ago, but it has only become worse, not better. Every time I try to stand, my limbs are weak and don’t want to hold me, or even push me into an erect position. At first, as I said the other day, I put it down to the tremors and twitches, but I have begun to wonder what is truly at fault, is it my PRMS, or is it something else.

I spoke to my Dr on Monday, he phoned to tell me that he has at last received the letter from the consultant I saw about two weeks ago. As I knew, he is starting me on a drug that will hopefully melt my gallstones, plus he is arranging for the district nurse to visit me every couple of days, to give me an enema. As it is clear that my bowels are no longer capable of clearing themselves, they hope that the enema will stimulate them to move. At the moment they are bulking up until there is nowhere else to go, which is decidedly uncomfortable, if not painful. I took the opportunity to talk to him about the fluid retention and how it is now clear that I have been swelling up for far longer than I thought. Over the days that I have been on the higher dose of Frusemide, my entire body shape has changed, so he suggested that I stay on the 40mls to stop it from returning. I forgot at the time that there is an issue with my being on such a dose as I have Vasovagal. When it was diagnosed with it, I was warned about taking Frusemide as it might aggravate it. For those who don’t know, Vasovagal can and has made me pass out with incredible ease. Which is exactly how I feel, as though I could do at any second. I can’t be sure, but I think that could also be aggravating the twitches and tremors. Adam and I talked about it last night and agreed that I shouldn’t take it today and see what happened. By mid-afternoon, nothing had changed, despite me drinking as much I possibly could, without throwing up, another sensation that is hanging around, but we will see.

I know all too well that I might just be grabbing at straws. We all do it when we feel out of control, whatever we can come up with, has to be a better answer than the one we don’t want to face, that this just might be what it is, a new way of living all over again. So I’m holding tightly to that straw, no matter how thin, as I don’t know how well I would cope with that dreaded reality.

I had realised a few weeks ago that I was putting on weight again. At the time I was totally lost as to why, as I haven’t changed my eating habits, and although my weight had gone up when I was first housebound, by a very annoying and unshiftable 3 stone, it had stayed constant since then. I avoided standing on the scales, but when I was at the hospital, they forced me onto them. I was horrified when they told me that I was just under 14 and a half stone. Another 17lbs, and every single one of them more unwelcome than the first. This morning, I fetched the scales from the cupboard and ventured to stand on them in the kitchen, 13st 4lbs. I’m still not happy about it, but at least the Frusemide has clearly removed the mythical weight as it was nothing other than water. Which leaves me in a total quandary, carry around unwanted fluid and possibly feel better, or be happier about my shape and weight, and feel like death warmed up. Why is it, that the longer we live with our pet illnesses, that the harder the options get and the more likely it is, whatever the result, we’re not going to like it?

Wednesday 29th

I had to stop writing yesterday, I was feeling terrible, so for the second day in a row, I retreated to my bed. By the evening, I was feeling a lot better, not perfect, and the twitches were still there, but smoother if twitches can be smooth. The difference from the day before was marked, Adam and I decided it was worth not taking the Frusemide this morning as well, just to see what happened. Well here we are, the next morning and I don’t feel like I want to pass out. I twitching like a mad twitchy thing, but I don’t want to pass out. I think we have the reason, all we have to do now, is find the balance, what dose will control the fluid without making me feel ill.

The district nurse has been and like some kind of mad whirlwind has taken over my life. Firstly, she took my blood, but then there were a million questions, and chat about every single part of my life. Of course, we started with my bowels and the type and frequency of enema that I will require. She isn’t happy with the type that has been prescribed, it is a Phosphate Enema which she feels it too violent in its actions and in her experience, the smaller more modern ones, are better, but we clearly have to try the prescribed version. I’m hopeful that it will be here by Friday, so she will do the first dose then. She asked if I was having problems with my bladder, so I let her know about the leakage I have during the day and my recent nighttime bed wetting. To my delight, she is the person he should have sent me to, not the hospital continence team. She can supply the towels and pads so we don’t have to keep buying them. She did say, though, that it might still be worthwhile seeing the hospital team as well, as they might be able to offer other options, especially as I can no longer manage to self-catheter.

With the toilet areas all covered, we headed onwards. Next came mobility and how I was managing my wheelchair. She totally agreed that I should have an electric chair and is going to get me referred back to Westmark, the department at the Southern General hospital, who are responsible for the final decision. Then came the fact that I haven’t seen my Neurologist for at least 7 years, if not more. She could see that I was very reluctant when we got onto that area. I went over the last time I was there, and what had been said by all the different departments who I saw back then. I explained how they had all told me the same thing, that there was nothing that they could do for me. She was clearly not happy about what she was hearing, and I knew from what she said that she knew as well as I did, that I had just slipped through the system. There should have been return visits, and something had quite simply gone wrong. She is going to take a look at my notes and see what happened back then and let me know when she is here on Friday.

The stress of her entire visit built and built, by the time she left, I was once again a jibbering, twitching wreck. I know that I react to strangers is my home badly, but this one really pushed me. I had a distinct feeling that she intendeds to sort out my life, and I’m not too sure that I want her to. Yes, there are elements that I need from her, but the actual organisation of it all, I really don’t feel I am up to it. There will be more hospital visits, more people to see and more things to do when all I want is peace and quiet.

Please read my blog from 2 years ago today – 30/06/2014 – The doctor lottery

I seem to be just jogging along the same path every day at the moment, inside all I want to do is sleep, but when I am lying down I find I can lie there without sleep appearing. Yesterday afternoon I lay in bed during the afternoon just aware of once again how dead my arms and legs where and how incredibly tired I felt. I would have sworn that I didn’t sleep at all, but the clock told a very different story, I had slept for well over…..

14 thoughts on “It shouldn’t be this hard

  1. Tell her about your reaction to her visit when she comes on Friday. Let her know that you need to remain in control and move at a slower pace.

    Her job is to help you, and she can’t know she’s overwhelming you unless you let her know that up front.

    Emphasize that you’re more a “pallative / comfort” care patient versus and aggressive care patient, and maybe that will hit a button in her subconsciousness that lets her understand you better.

    So glad to hear that you’re otherwise doing ok, even if it did mean changing the dose on your other medicine. 1 day at a time is true for us all.

    Liked by 1 person

      • I pray that you become stronger every day, and that you try to eat even if you don”t want it until this passes,, and it will.

        Liked by 1 person

  2. Hello,reading your blog you seem perhaps a little brighter and I am happier for you.Gosh whirl wind just doesn’t cover it does it.I suppose everyone brings some thing different to the table and if she can sort even a few of your probs out that’s ok.Things have changed such a lot since my day and I marvel at the amount of input you have and that’s no bad thing either.Stay strong,sending love and thoughts Nancy.

    Liked by 1 person

    • I find it hard to believe just how much things have changed in the 17 years since I was diagnosed. Every time I have called for help, the system, the department names, there locations and not to mention the people have all changed. What hasn’t, has the amazing long lists of questions they all want to ask. Hopefully, the results will show πŸ™‚

      Liked by 1 person

      • Often when things. change so much, I give up and think I can fix or handle things on my own. Why is it so hard to accept help??I guess when it comes to health we like to “think”lol they we are in control. Ha, are we wrong ! Anyway,,,you are not
        alone in wanting to keep control of your own health decisions. I am too. Hope you are feeling better today. love ya! Btw, I’m leaving to go home tomorrow, been here almost 6 weeks. Long dreaded drive, and feel pretty exhausted, but so anxious to get home? Miss my hubby So much.But I think my mom is much better now. She is a fighter, healthier than all of us, and she is 90 !


      • Make sure you stop and take a rest when ever you need it, driving when your tired isn’t a good idea. I’m sure that your husband is as anxious as you are to see you, but safety, in this case comes first.

        I very much get the impression if you make it to your 50’s healthy, you make the rest of way, and yes, your right that they always abound with health and energy. If only we had just some of that luck.

        Take care, drive carefully and when you get home give him the biggest and tightest hug, as your another one with a wonderful husband, and he like Adam deserves to know it. πŸ™‚

        Liked by 1 person

  3. Pingback: Stepping back | Two Rooms Plus Utilities

  4. I probably already responded to this, but in case I didnt, thanks so much for caring and responding. I had song hot trip. There were so many traffic jams and one was an hour wait. It took one hour to go three miles. Even with the air conditioning on I was aware of the heat outside.
    I really hated leaving my mom, but was so happy to see Joey. When I pulled into the parking lot he came out to great me and the look on his face was like when you have a puppy and leave for a while. When you come back home they have this look on their face between a puppy smile and a growl. Its like you aren’t sure if they are going to lick you all over or bite you !
    And yes I hugged him so tight and one for Adam.
    I am home settled in and still tired. Plus I’m pretty sure he and I both have a sinus infection. It then I alwYs have one from Marc til

    Liked by 1 person

    • Sorry wasn’t finished. From March til early winter. So aggravating.
      I am sorry if I didn’t respond earlier, maybe I did. I am,so foggy . The past few weeks are all a jumble. Today is the first time I have really taken the time to respond in depth, so, sorry if I’m talking your ear,(eyes) off. Haha
      I am so sorry you have been having such a hard time. But I really think your helper might be able to actually help,,once she gets to know you, if she will take the time and slow down so she can get to know you. Yeah. That’s a big if. Just trying to think possitive. As you know I am still reading your older post every night. And think of you often. Talk later, BrendaπŸ™‹

      Liked by 1 person

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