Rebuilding the Cocoon?

Friday seems to have taken a lot out of me, it is always the knock on that is more the issue than how I feel at the time. MS seems to let you cope, then kick you repeatably for even having tried to. I suppose it will all take a few days to settle, my routine didn’t exist last week and there were quite simply too many changes to deal with, I know I will get there but these are those hidden moments, the bits that others don’t see. I don’t think my gut liked the treatment at all, I am finding it now rather painful in strange places and clearly not happy with the food I have been putting into it. I can point to the exact positions where my breakfast, dinner and tea are, and I can tell you the pain and nausea is clear, I suppose part of it will be the ruff process of pushing the scope, some bruising and so on I expect, but most is empty space syndrome, gaps of air and crashing food.

I spent all of yesterday feeling half here and half longing to be anywhere else, especially asleep. I did at least get my afternoon nap and one again landed up in bed before 9pm, so yes I have just caught up with “Casualty”, I don’t understand either my love for hospital dramas either, I suspect it is because a lot of the time I actually know what they are talking about and sometimes even manage to diagnose the patient before the Doctors do, that I have to admit is fun, a bit like a who-dun-it. I have always enjoyed working things out and I am sure it is also the reason I can’t stand slapstick humor, what is funny about something you knew before it happened, actually happens, sorry I don’t get that at all.

I can see it is going to take me a while to recover from all of the last week, there are just so many parts to it that my body is still catching up. I know everyone seems to think that I should have a great desire to get out of here, but when my venturing outside causes so much stress, why would I want to go anywhere. I really do wish now that I hadn’t asked for help at all, I would be in a much better position if I hadn’t actually. If I had just got on with it and said OK this is the way my body works now and I have to work it all out myself, maybe just maybe I might have it all under-control with out any stress and without people in my home annoying me, and without yet others forcing me out of it. I managed fine for five and a half years then I asked the NHS to help me and it has been nothing but upsetting from that point on. Isolation was a much happier place believe me, everything just ticked along, day after day and I ticked along with it, I would love to have that back, life has been distressing since I lost it. It is strange how help can land up being anything but.

I suspect that when I do go back to the Gastro. department it will be once they have the results of the biopsies, 4 to 6 weeks time and I expect that guess what they will blame it on my MS, as I did right back at the start in March or April. My gut has simply stopped pushing food through, what I wanted then and would like now is a solution, I just hope they are now out of tests and are happy to just do what I asked and help me make it work well enough to be healthy and to not mess myself daily, I don’t think that I was asking that much really. Before that though I have another appointment this month to go to the Pain Clinic after the mess on Friday I am looking forward to this less and less as my appointment is for 5:45, I know the shifts change at 5 so this might not be a smooth system either. There is a real feeling at this minute of my not wanting to go, I suppose that is understandable and a risk I once again have to take, as I am sure if my pain was under control I would feel better in myself, but I can’t put into words strongly enough that I really don’t want to leave the house again if I can just find a way to pull myself back into my cocoon and lock them all outside it for good. Possibly a silly thing to do I know, but in my heart that is really what I want.

4 thoughts on “Rebuilding the Cocoon?

  1. Hi, I am new to your site. A friend had viewed it on facebook and I followed him. I must say, even though I do not have MS, your dilemna with your health is similiar to mine. I have several conditions, most inflict pain of some kind. I have asthma, diabetes, fibromyalgia, arthritis and many more problems. I am early retired and my days consist of laying around, reading and watching TV. I have insomnia which keeps me awake for days amd then makes me sleep for a day. I have been sleeping in the daytime for the past two weeks. I had plans for Saturday night, so I stayed awake for 30 hours on Thursday and Friday hoping to sleep on Friday night to be normal on Saturday. I went to bed at 10pm and got to sleep at 7am with the help of a tranquilizer, a pain pill and a sleeping pill. When I woke at 2pm, I was so droosy, I just went back to sleep. I woke again at 3am and will have a messed day today because of it.
    MsScorpio

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  2. The more I hear about what many people are enduring with their illnesses and how badly the health service seems to function, I am beginning to lose hope that it is there to help. I think that modern medicine is mostly trial and error and even then, they don’t always have a remedy for whatever they find. Often though, they don’t find anything, but we still know we are ill.
    I agree with everything you have written and like you, think that sometimes the invasive tests can be more of a pain than the illness.
    I do hope that you manage to get back into some sort of routine this coming week, as our bodies do depend on routines to feel well.
    It’s a pity the pain clinic can’t send somebody to visit you at home. I can understand why you wouldn’t want to visit them after the last fiasco.
    take care
    xxx

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  3. I have both MS and Fibro so I know your problems well. When I started writing I thought I was writing to the MS world, it quickly became clear that many many people with other conditions have come across or are living with many of the same problems. I now find that I am writing to the Chronically ill and an ever growing number or able bodied people who simply want to understand the problems we live with. I am glad you have joined in and I look forward to any comments you wish to leave in the future. I am sure you will find much that you can relate too, and hopefully the same strength and joy I still find in life 🙂

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  4. I have said it before and I still believe that we have all grown to believe that Doctors can cure everything, when the facts actually are that they can cure little, unless it is a case of cutting something out, or putting something back together. I believe they try to help but as you say they all to often can’t.

    I just need a few days to get myself back on track, but it is really tough on someone with health like mine to have to go through something like Friday as it has done so far, more harm than good.

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