Understanding changes everything

Yesterday turned in to one of those odd nothing days, a day when it just seemed to run past me and I somehow did nothing but add on to a list of the things I was meant to be doing. The list grew and I still did nothing, it wasn’t as thought I was doing something that was holding me back or filling my time, I was doing little to nothing other than chalking up something else not done. I have been really tired for the last couple of days and I know that it doesn’t matter how hard you try, when you are that tired you just aren’t able to do the simplest things. It is as though someone has switched you off and all you can do is watch the time pass. My high points of yesterday were the two times that I slipped in to bed and lay there warm and heading to sleep, my low points where when the alarm told me again that I had to get up. Physically the only real down and possible drain, as pain and all the things that surround are very draining, has been once again my left side or lung. There is always on thing, one pain area that seems to over ride all the others and make them fade into a place where they haven’t vanished, but are displaced, everything is focused on that one over powering area alone. When something nags away at you constantly, it eventually becomes impossible to ignore, any one who lives with pain all the time, will know all to well that you don’t forget or stop feeling the other pain area’s, but the one that will give you no peace or no relief at all, just takes over your life at that point in time. Sitting or lying down I haven’t found any real relief from it at all, don’t get me wrong it isn’t the type of pain that you want to scream at, moan and grumble yes, but scream no. The big difference between this and the pains that might you toy with the thought of amputation, is a limb isn’t required for survival, your lungs are. I guess that I am winding myself up about all of this, it isn’t as thought I can’t breath, I clearly can, but a lung that goes solid isn’t normal and I as I said the other day, I don’t have a full and clear understanding of what is going on.

No matter what is wrong with you from the simplest condition right through to the deadly ones, fear is the biggest issue that we all have to deal with. Once you fully understand your condition and when you know what to expect, it all becomes so much easier to live with. I doubt that anyone will have made it through life to what ever age you are, without at some point finding yourself terrified simply because you don’t know what is happening to your body. All of us have illnesses that are just a normal part of life, but during those illnesses there will probably have been times where you have found yourself scared, fearing you are that ill that you won’t wake again. I can think of several, some that have even found me at the local A&E department and once I required an Ambulance to take me there, but on almost all occasions once a doctor has totally explained what is happening and why you feel so terrible, well suddenly you feel that bit better. The doctor has done nothing other than reassure you, but it is as though he has removes at least half of the illness you have. In just the same way I know when I was told that I had MS and I was told what had been happening to me for years was all part of it, I felt better, not cured but better. The biggest change has been that I haven’t had the slightest sigh of depression since that day, why? simple, they were now believing me that I was ill and were no longer treating me as a nut case.

Chronic illness is always going to be different from having a bug, or any short term condition that will go away. Once you know the name of what is wrong with you and you have an idea what will happen, life gets a lot easier for a while, but eventually thing start to happen that no one has told you about, you develop problems you can’t pin down and can’t help but believe are just you, as there is no sign of anyone else going it through it too. The longer you go without an answer or a clear idea of what is causing you to feel the way you do, the more you begin to fear that your symptoms are signs of your illness getting worse. No one tells you what to look out for, what signs are those that show you need to get medical help, or how long something has to be that way before you make an appointment for your doctor to come out and see you, or do you head to the hospital to get it checked out.

Both those issues play on my mind, I am one of those brought up to believe that seeing a doctor is your last line, after all you don’t want to waste a doctors time do you? Yet with my trapped in the house unable to get down the stairs, how I am meant to get to a hospital without also calling an ambulance and all the issues that go with that, especially if all I need is an antibiotic. Then there are a whole range of problems that a hospital visit brings with it, yes they would get me there, yes a doctor would seem me, but what if they want me to stay there? The issues that arise then for me are huge! They won’t let me bring my wheelchair with me and even if they did I am not sure how well I would be able to get around, although everywhere is flat and they do have lifts. Being a life long smoker there is no way I could stay much over a couple of hours without a cigarette, regardless of rules. I am also a picky eater these days and I can’t imagine my eating hospital food, but the biggest issue would be sleep, sleeping on a ward is a nightmare itself. The final nightmare is getting home again, even if I don’t stay I still need to get home and arranging transport is probably the biggest nightmare of the whole hospital visit. I know I have spent too many hours already waiting for them. Yes I have thought it through, I have thought it through because an emergency hospital visit is probably now my greatest fear, to the extent that I know already I would do almost anything to avoid it, including letting my health dip a very long way before asking anyone for help.

Illness is supposed to be a process of getting well again, chronic illness is a process of managing a health that knows only one way of travelling and that is worse, not better. No matter if it is a limb that won’t work properly or a lung that is filled with cement all are just part of my health but I don’t have a plan written up to help me understand what might come next and how to call when or what might appear today. The result although I doubt intentional is that chronic illness eventually becomes a case of not managing your health but managing your fears, from the tiniest to the most enormous. It would be nice though if they gave you just that bit more help in sorting all of that out.

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