I started my day today as I do all to often now, with pain in my abdomen. What the rest of my body is telling me, is that I am nowhere near ready to go to the loo. I’ve tried, which was a terribly bad idea, as I now once again have a piece of stool lodged just where I don’t want it, and with no way of shifting it in any direction at all. So many of my muscles no just quite simply don’t have the strength to do what they once did. As little as four years ago, this quite simply wouldn’t have happened. Trust me, it is just as uncomfortable as the very idea of it, but it’s just one of a list of things that just make me feel useless at times.
The other week, I wrote a post about my mother-in-law have just being diagnosed with cancer and how I felt useless when it came to supporting Adam and her, because of my health. That, though, is a type of useless I know without a doubt, everyone on this planet could relate to. But there is another useless that takes the chronically ill, to fully understand.
I used to think I was useless when I couldn’t walk for the ten minutes, it took to get from my house to the bus stop, where I could get a bus to take me to work. Even more useless when I became unable to walk the length of the call center and to keep working I required a wheelchair. I also remember the first time the shopping was delivered and I could shift the full shopping bags from the hall the kitchen. These are the types of useless that I’m sure anyone with chronic health can relate too. The everyday events that we suddenly find ourselves faced with, and after a lifetime of being able to them all without thought, suddenly we can’t. It doesn’t matter if anyone else is aware of it or not, we feel pathetic and completely useless. There is such a feeling of failure, of being unable to do anything and it just grows, more and more things happen and our list of inability seems to keep growing. It is almost like life is standing over you, with this big pen, and anything that you do, it is just waiting to put a big black line through it, and mark it off as another thing gone, another thing you can’t do.
It’s horrible, and having people telling you it’s OK, doesn’t help in the slightest. Being told it’s expected helps even less, and it appears we are just supposed to get on with it. To not react badly because of it and to just move on. Just because we have a certain condition, just because we are slowly becoming disabled, we’re expected to take it all in our stride, as though nothing has changed.
I remember feeling so many different things. So many different emotions, but most of all, it felt as though I was alone with it all. Yes, I could ask for help and yes, help was given whenever it was needed, but that was a million miles from the point. The point they all seemed to miss with such ease, was that I could no longer do it. Back when my life started slipping away from me, I didn’t have the slightest idea how I was supposed to feel, how I was supposed to react, or even what I was supposed to do so. Those around you look at you with pity, but pity isn’t what you want. Others, try to pretend nothing had changed. They act as though they haven’t noticed that you’ve lost three stone in weight, that’s there’s a nasal gastric tube stretched across your face and are now permanently, sat in a wheelchair. For them, there isn’t a right or a wrong, they are as unsure as we are, but they can walk away and get on with their lives, we can’t. We’re stuck in the middle of it, feeling useless and most of all, lost.
I was good at the bravado, at putting on a face that said to the outside world that I was OK. Now, I realise that was possibly the wrong thing to do, but as we are given no guidelines, no guidance of how to act, of who to confide in, or even who to turn to. We have no choice other than to get on with it, to put up with feeling useless and make the best of things how they are. If I could get out of this house, I know I wouldn’t hold back for a second in telling anyone, what is wrong with me. If I either needed help, or I didn’t like the way they were looking at me, hell yes, I’d tell them that I have MS, total stranger or not.
It doesn’t matter if it is the first time you failed to lift a bag of shopping or it is the millionth time, you still feel useless. The hardest thing to do is to unlearn. It doesn’t matter what age you are when you became ill, you have been learning from the day you were born and that knowledge is vast. Life has taught us that our abilities only ever grow. As a baby, we can pick up a rattle. As a toddler, a toy. By school age, we’re already able to carry our own bag, filled with a tonne of things we don’t need, on top of what we did. As a teenager, we can lift almost anything that an adult can, and we just keep getting stronger, and wiser as to how to lift anything. Now suddenly we’re ill, now we have to unlearn, and not just about what we can lift, that was just an example. Our health means we have to unlearn almost everything, not just about the physical side of life, but quite often mental and psychological, and it’s hard.
To survive in an adult world, we became adults, but we are now expected to continue in that world and we are digressing, stepping slowly backwards into childhood, but we remember what it means and feels to be grown up, even though we are slowly growing down. It isn’t just the physical us that is changing, for many it is their minds, for some it is both. We forget, we forget all the time. The things we once found easy, are becoming harder and harder and there is nothing we can do, but learn to cover it up, to use tricks to keep us functioning and gadgets to replace what we once did with ease. But still, we are expected to survive in an adult world. To be grown up and even more so, to react like one, even thought our chances of feeling useless just grow and grow.
I know without the slightest doubt, that I do things almost daily, that I remember scolding my children for, things I told them to not be so “stupid”, or so “silly” about, yet here I am doing just the same things. Chronic illness is designed to make you feel both of those things and million similar other emotions, and there is no avoiding them. One of the most important things I have taught myself is to not worry about it. So what if my muscles are “useless”, if my brain makes me feel “stupid”, or if I do “silly” things. I can’t stop myself feel that way, but I can stop myself fretting about it. I wish that I had learned that years ago. That I had not spent hour after hour fretting over what went wrong that day, and just had a good nights sleep instead. We are going to get things wrong. Our bodies are going to let us down and our minds will fail, they are facts. Fretting is a choice, and trust me, if you’re still at the start of this process, your health will be so much better if you don’t worry about what is done and gone. In time, you to will feel useless more often that you can count, but it doesn’t mean anything, other than your health is letting you down, not you, your not letting anyone down.
Please read my blog from 2 years ago today – 10/04/2014 – What the Dr didn’t say
I think they call it sods law, I bought the new router the other week and I did have an issue in fitting it, so I reluctantly went back to the old one, the one that I had chucked over the settee in front of me and had bounced it way onto the floor. Luckily it’s flying lesson hadn’t done it any harm what so ever, in fact, it seems it did it some good as it hasn’t lost connection or dipped in speed even once since. So I now have a new router and a new modem, as I needed to replace that as well, all just sitting here with nothing to do, part of me is saying well just change them, you have the new stuff and it’s ready to go, but part of me is also saying why change it now, it’s working and I have a full backup for when the problems start again, which I am sure……
Words of wisdom that can’t be truer. Thank you for putting into words exactly how I feel.
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I’m sorry that you’re having to go thru what you’re going thru. I have Fibromyalgia & a few other things going on, but I know it’s nothing compared to MS. I, myself, have memory problems & I’m “only” 46. My grandma had Alzheimer’s & I do get concerned about getting that. I guess we just deal with what life throws at us the best we can. I enjoy your blog, even though I don’t comment all the time.
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Don’t worry about commenting all the time, it’s good when people do though, as it lets me know who’s behind the numbers. Memory issues can be really tough to live with, but it’s like the rest, be it pain or what ever, we find our ways of making life work.
I have no reason to worry over Alzheimers, but I think along with all the different forms of dementia, it’s a deeply held fear of many of us. Luckily for you, there is no heredity associated with Alzheimers, but some how, science doesn’t remove that niggle. I wish I was “only” 46. 🙂
Take care (((Hugs)))
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I agree with a lot of the feelings you’re expressing, however, I’ve learned to cope with the messed pants and not beat myself up after an accident because I KNOW I would have made it to the loo given enough time and bodily warning about the disaster about to befall me.
I had surgery as a child to tighten up my muscles to try and give me enough warning, and while that worked for years, I need another surgery and am choosing not to have it. I wear a pad against all risks, even though it’s been about a year since my monthlies stopped, and I plan my day around what I eat and drink (or choose to do without) in the hope my body won’t betray me. Again.
Truly, it’s all about perspective and exercising kindness toward yourself. Losing control of one’s body as a comparison for when you are trying to teach children discipline and they pee their pants is not in the same category at all, and I wish there was a way to magically solve this self-acceptance problem for you.
I’ve been in nursing homes or around exhausted carers who have said, “She did that on purpose” and left their elderly charges to lie in their own filth as punishment. Not true – but still they are sometimes punished by ignorant, exhausted people because they forget that their patients are losing much, and bodily control of the plumbing is just another such loss.
Even thiugh they did a repair to help with muscle control as a child, I’ve still cleaned up my own filth upon occasion as I didn’t make it to the loo in time, and now my panties and jeans are filled with the evidence of my loss of control.
Like the film, “Charly” based on the book, “Flowers for Algernon”the knowledge that you are going backwards and losing control, and then enduring the loss of what little children have mastered is just another indignity in a situation filled with them.
We get told so often that autonomy is crucial to quality of life, and yet we cannot always control the very basics; try as we might.
I understand the frustration you speak of for being unable to control even that small aspect of your world. I’m sorry there’s no peace for your anguish. Even telling you, “You are not alone” doesn’t help, because you’re fighting social conditioning meant to instill shame and stop the child from having such accidents as they were learning self-control and growing up, and your own psyche beats you up when you KNOW you’re not doing it on purpose, for attention, etc.
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I was talking about far more than just bowel and bladder issues. I totally agree, no one does it to just get attention. My condition is rapidly leaving me doing thing almost every day that I have done since I was a child. I drop things, can’t eat properly, need prompting to do things just generally going backwards. When you know your an adult, when you know these things wouldn’t happen without your health, your left feeling useless, stupid and silly. As I said, the trick is to not fret about it, something that is hard, but I’m learning.
I’m sorry that you personally have lived with they issues you have with your bowel. I can’t imagine what it has been like living with it all your life. Mine doesn’t yet let me down consistently, but my bladder is almost on that line. My bowels do cause me huge issues, but not in that way. (((Hugs)))
I’m going through much the same things with my body being unpredictable and failing, and in my case I often am not getting the necessary help, which is a real matter of survival, and that’s scary. My local support system is very tenuous at best and so I’m getting by on a wing and a prayer.
I think I have to tell myself numerous times a day it’s not my fault, I don’t deserve this fate, and that circumstances are beyond my control because although intellectually I know that, the emotionally programmed messages from the outside world are a constant challenge to overcome.
If it’s any consolation I do believe that the chronically ill are quickly becoming the majority and that it’s just a matter of time before the public perception of us changes. I hang onto hope it will be in our lifetime.
It’s an ongoing challenge to maintain a good self-image when barraged with negative messages by people who judge us harshly from outside and we feel increasingly alone with our struggle for quality of life.
Hang in there.
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I to think the balance is changing, but mainly due to the elderly outnumbering the young. The issues of old age are frequently in line with those of the chronically ill, so it will change, it’s just a matter of time.
For me, I also know my brain is failing along a similar line of that seen in dementia. No matter how wrong it is, I often wish that it speeds up, but only so that I don’t have to be so aware of what is going on. Being an intelligent human in a world of uncaring ones, is often the hardest part of the whole thing.
Hears hoping we both can hang in there.
I have had a rough weekend and the libel in my chart at the place where I’ve had most of my doctors in the clinic and the lack of adequate documentation from my hospitalization at the other hospital continues to haunt me and cut me off from the care I need. Woke up several times the past two nights with my heart stopping for a few seconds and then straining to beat.
The mobile Primary Care that I was told would be starting the Saline infusion is still not getting all the data from the records and in addition since nobody will put down the diagnosis in black and white it’s making me look like a fool.
I know what you mean about being cognizant making it harder, but I really fear what would happen to me if my cognizance went because I think people would just absolutely murder me. (Even if you develop Dementia you do suffer. It’s just that you don’t understand exactly why). If that ever happened to me it would be open season. I’ve been dealing with alot of people locally who are not just incompetent but malicious and seemingly looking for easy targets to take out their pent up anger on. It’s frightening just how many people work in the healthcare field that are unsafe for vulnerable populations to be under the care of.
Hoping some good news comes soon 🙂
This is just what I needed to read tonight before more uncomfortable (to say the least) testing in the early morning (which is a very bad time of day for me). I was beginning to fret about more diagnoses that would have no cure and mild treatment at best or the blow of something serious and the end of the line being fast forwarded before my eyes again. but, your right, our bodies are going to fail us. We don’t get to pick when or how. It just happens. It’s not at the fault of us or who we are. It just is. It happens to everyone at somepoint, make the best of what you have. Thank you for that reality check. Another wonderful and helpful post. It may not make things ‘better’ but it makes them calmer. (((Hugs)))
I’m glad to have been able to help. It is hard to accept, but what other choice do we have. It is often a case of us v our health, just remember your the stronger of the two. (((hugs)))
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