Too ill for basic care

If there is one thing throughout my entire life I have hated, it is being proved wrong. I know it’s bigheaded to believe that you are always right, but when it comes to my own body, I thought I had, at least, one area of speciality that no one could argue with. I was daring to think that after 4 days of almost peace, where my pain levels had slowly begun to settle, that the bad spell, was on its way out. Last night, proved me wrong and it did it in style.

I had spent a very uncomfortable evening sat on the settee. Adam had to fetch me some of the antispasmodic the doctor prescribed for me just before 8 pm, as my stomach was tied in loops. I’m not really sure if they helped or not. Yes, the sharper edges of the pain was reduced, but they brought me no comfort what so ever. It is now my third time that I have tried them and compared to my worst spell, they worked miracles, but compared to me average, they did nothing. He has prescribed Buscopan, which is a very common drug for IBS, something I don’t have, according to the tests run by my consultant the last time that I saw him, despite the fact that I have all the symptoms. As always when I am unsure about the effects of a drug, I give it a quick Google, just to see what their effects are supposed to be. It was totally unhelpful, but I had to laugh at the final line in Wikipedias synopsis “It is also used to improve a death rattle at the end of life”. What on earth has that got to do with bowel and bladder problems? So many drugs seem to have some other odd usage, but at least, I laughed. What I did find out though has made me wonder if I should be taking it at all. Apparently, it shouldn’t be taken For “certain conditions when there is reduced bowel activity”, but it totally unhelpfully doesn’t say which ones.

By the time I went to bed at 9 pm, I was delighted to be there. Sleep had been dragging at me for what felt like forever. My stomach was in a mess, with pain showing up all over the place and there were area’s that felt as though they were being badly stretched. Experience was telling me that sleep was my only option for peace. Within seconds of lying down, I feel into a deep sleep. 11:30 pm found me awake, drenched in sweat and in pain, really bad pain. As I sat up, I knew I was going to be sick and that I had to move as fast as I could. I took a risk, a huge risk and left my wheelchair behind me, as it would do nothing but slow me down. As it turned out, it was a good decision. With a wrench, that came from somewhere around my waist, I started to bring up my last meal, eaten at 4 pm. Just as has happened in the past, as I was being sick at one end, urine was leaving me at the other and there was nothing I could do about it. I did what I could to tidy up, but my entire body was shaking, I felt terrible and I had used what little strength I had pushing myself to my feet. I had grabbed my dressing gown, which was lying over my wheelchair and had brought it with me, as I wrapped it around me, I sat on the loo to do two things, gather myself and to try and empty what remained in my bladder. It was after that, that I called out for Adam.

I had staggered my way to the bathroom door, fighting the pain with every step. As I reached it, there was Adam. The sudden vision of him standing there waiting for me, listening to me throwing up, started the shame meter.Β He sorted me out and took me in my wheelchair, which he had fetched long before I called, through to the kitchen for a cigarette and to give me some much-needed liquid. I sat in silence while he cleaned up the mess I made in the bathroom. Once again, I was in the horrid situation of knowing my husband was having to clear up my urine. If there is one thing on this planet that will strip you of all embarrassment, it’s shame, and I had it in buckets. It doesn’t matter how ill you are, whether or not it is out of your control, or any other fact you can think of, you still feel that shame. When Adam returned to the kitchen, I didn’t know how to look at him or what to say, other than “Sorry”. To make matters worse, as I put out my cigarette, I hurtled once more for the bathroom and doubled the amount I brought up and the mess he had just cleared.

This morning, I still feel terrible, but that’s not new. My bowels moved without pain or issue and the pain in my abdomen is still there, just as it was last night, last week and last month, but not at bad as it was last night. I don’t feel sick, but Adam and I have discussed it and are in agreement, I’m not going to eat today, just lots of liquid. I’m also going to put a large measuring jug that I have, into the cupboard in the bathroom. Hopefully, if this does happen again, I will be able to grab it, so I don’t leave myself feeling shame, just because I’ve been sick.

I don’t have a clue what else I can do, other than speaking to my doctor again on Monday. Whatever is happening down there in my stomach, is getting worse. When you are housebound, your options diminish dramatically. If I could get down those damned stairs, I freely admit that I would be now sitting in the emergency room at the hospital. I would be there, just so a doctor could check my abdomen to be sure there is nothing they can find that could be causing it. I would be there, not because I feel this is an emergency, but because it would put my mind at rest that I’m right. I can’t get down those stairs, so I’m stuck here. To get to hospital, I would have to call 999 for an ambulance, but I don’t believe that I need that type of attention. Doctors don’t come to your house these days, not for anything, not even when you can’t get to them. So I’m stuck, I can’t get that peace of mind, I just have to wait until I can speak to my GP and that’s not until Monday. Somehow, I doubt that even then, will I actually see him, or any other doctor, which is wrong as if I could get down those stairs, I would be in his surgery, not on the phone. My chronic illness has led to the situation where I don’t get the basic level of medical care, everyone else takes for granted. How can that be right?

 

Following a couple of comments, I just want to make clear that the point I am making is that being housebound, singles you out. Society has set up systems that work for the majority, and I don’t want to be treated any differently, just allowances made for the situation my health has left me in. If what is happening to me right now, was happening to you, you wouldn’t call an ambulance, you would simply go to where there is a doctor you can see, something I can’t do. The barrier of being housebound, is a barrier to my getting that basic care, that everyone else, takes for granted. On top of all of that, the cost to the NHS of my calling 999 for an ambulance is huge, followed by the cost of another to take me home again. This is one of those gaps in the system, one I have fallen into.Β 

 

Please read my blog from 2 years ago today – What’s missing….?

I woke this morning as exhausted as I was when I went to bed, but at least, I woke once more pain-free in my back but not quite so comfortable in my lungs as yesterday. So pushing myself to have my shower just after Adam went to work, well might sound rather odd, but I am hoping that if I push myself this morning to stay up to time with my normal routine I will be able to have my full 2 hours this afternoon, rather than a short nap followed by a difficult shower. It often feels as though……

 

 

 

 

 

25 thoughts on “Too ill for basic care

    • As I said, I don’t believe this is an emergency, there is something wrong, the sort of wrong where if I was able to get out, I would go to the hospital as my GP is closed at the weekend. Again, if I were able bodied, I would go to see my GP on Monday, but all I can do is talk to him on the phone, no examination, just my description. It isn’t the care that an able bodied person would get, but I’m stuck here, so it’s the only care I get. I haven’t seen my GP for years.

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  1. I’m so sorry to hear about what you’re experiencing. From what you shared, it sounds like you do have the option of calling for an ambulance to take you to the emergency room. I think that if it will bring you peace of mind to have things checked out, as you said, maybe it is worth giving them a call to help you. I know it may bring about extra attention, as you mentioned, but again, if what you’re going through is critical, and you’d like the peace of mind of being examined, I think it’d be worth it to have the ambulance take you. There may be a physical barrier of the stairs, but it sounds like there’s also a mental barrier of not wanting to have that extra attention around the ambulance being there. I’m saying this with love and concern, not to be harsh, so I hope you don’t take it that way. Sending you lots of Love!

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    • I’m not bothered about the attention, it is quite honestly the fact that this isn’t an emergency. If what is happening to me, were happening to you, would you call an ambulance? I would be surprised if you said yes. I am no different to anyone else, just housebound. I don’t believe, although I can’t be sure, that I am not in an emergency situation. After all, it was last night and here I am, in pain as always. Being housebound, shouldn’t be a reason for an ambulance to be called, that was and is the point I was trying to make.

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  2. I am so sorry for your isolation and the feeling of being trapped, which is dreadful. I wish I had meaningful advice or could offer help beyond saying that I wish things were better for you and that some doctor would look outside the box and find a way to help you the way you need to be helped instead of putting you into a system that doesn’t work for you.

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  3. I understand, like anyone else you thought an ambulance was not needed….I m sure Adam would have called one if you had not recovered, well not exactly recovered, hope you know what I mean. Yes you might have gone to emergency room if you could or not. This pain seems to have been here a while, I think, it is unexplained. Glad your talking to GP on Monday, I would ask for a home visit as you have not seen them face to face- see what they say? Seeing your circumstance is different.

    Ah, to put light on it all a small bucket works well next to the bed (lined 2 carrier bags!). If you don t have a commode I recommend one.Yes the embarrassment comes with it. But as I think you and Adam are married. Hopefully less cleaning up to do?

    It is a gap in the system? In the moment of the time you have 101 things going through your head……and that would not be there if you simply had option to go to emergency room. It is so true.

    Oh you are so brave writing this blog.

    Thank you.

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  4. I can’t begin to imagine the stresses and suffering you have had to go through for such a long time. Here I felt having tonsillitis over the last few days was terrible. But your post sure put my current illness into perspective.
    I also find it incredible that someplace like the UK (I assume you live in England?) would have no house call service. In Australia, there are house call doctors 365 days a year. You just need to phone, and they can attend.
    And what a caring husband you have πŸ™‚
    Take care

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    • You are very close, I live in Scotland, but still the UK. We can get home visits but on during normal working hours. So get ill at the weekend, and your stuffed. The rest of the world is 24/7, we’re still 9 – 5, Mon – Fri 😦

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  5. Having been a part of the system for many years and also having two close friends with chronic illnesses one who is housebound without extensive help, even after a wheelchair lift was installed I understand the system and it’s shortcomings. I remember spending hours on the phone to get a client of mine the help that she needed and that was the best part of 30 years ago! I suspect that today those hours would be wasted.

    To me, the bottom line is that if you are in that much pain and distress, your problems do justify a 999 call. I also believe that GP’s should do house calls for those who are unable to leave their home. In my area there is a visiting service but you need to be very persistent to get someone and if things are as complex as your needs are, getting someone who really understands is not likely to happen. Though perhaps just getting a professional who will really listen is more important than getting someone who knows all the details of your case? I hope that Today brings some help and understanding. {{Hugs}}

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  6. My sister (in Fife) is having treatment for lymphoma. Day or night if she has a raised temp or has been sick for too long she can be admitted quickly to a ward. Her treatment has been amazing; the care and medical attention could not be faulted. She notices the difference between what the NHS gives her and what it gives to ME patients. I hope the day will come when the medical needs of ME patients is recognised and the right and timely medical care can be given.

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    • In real life, things are never as easy as others think. Financially, we just can’t do it. I doubt our mortgage company would be happy if they even knew I was no longer working. It’s cheaper to pay a mortgage than rent, so that option isn’t open either. We are more than stuck, as even the agencies you would expect to rehouse us, won’t. We don’t have kids and families with children always get housed first. We are on all their lists and have been for over 12 years now and not even an offer. Reality stinks sometimes 😦

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  7. I’m the one who wrote the blog about the CDC and Dr Deb Houry…(Fatwa issued)…if you have ibs or Kron’s my brother in law’s life was saved by Dr. Dalman (or Dahlman) at home protocol for ibs and Kron’s. It’s supplements, diet…it takes but months and involves some at home kit blood testing. I’m unclear what is going on with your lungs. CF?

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    • I have COPD, it involves both emphysema, but the major player is my PRMS. It has attacked the nerves which means that the actual mechanism of breathing no longer works properly. On top of which, I get spasm both in the lungs themselves and in the intercostal muscles and diaphragm.

      I don’t have either IBS or Kron’s both have been ruled out. At a best shot, it is again my PRMS, which destroyed my bladder years ago. It is a logical conclusion as the Vegas nerve controls all of the above along with my heart, which I have already been diagnosed with Vasovagal. The problems with my intestine have taken longer to show, but are now doing so quite dramatically. The types of food I eat make no difference. In fact, my food is governed by what I can swallow. Food sticks in my throat with ease and I frequently choke. Overall, I would say the whole system is falling apart.

      I just wan’t some kind of pain control that works and relief from the constant feeling of pressure, relieve that and breathing would also improve.

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    • I don’t know what like you followed, but it brought you to a post that is about three weeks old now. Luckily, thing did improve, but I’m still having issues and your right, I do have an amazing husband πŸ˜€

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  8. Pingback: There processes, that’s all | Two Rooms Plus Utilities

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