It’s up to us

The phone call with Jake yesterday left me disturbed for the rest of the day. I don’t know why, but all of a sudden when I was in the middle of doing something else, I suddenly felt the cold blank fear that grabbed hold of me when I found that I wasn’t there. This isn’t the first time that something odd has happened and it has hung around for hours if not days. When you don’t know why something can happen, you are left with a double fear, what caused it and will it happen again. Dealing constantly with a body that does things that would have many running to the doctor in the belief that they were either dying or going mad, is no picnic. We the chronically ill, are probably the ones who spend the least time in our doctors surgery or calling them out to our homes, despite what you hear on the TV. Listen to the constant reporting on the reasons for the NHS is straining at the seams and you would believe that people like me see our doctors at least once a week, if not daily. I would love to know where they get their figures from. In all the time that I have been housebound, my doctor has been here once. Yes, I speak to him on the phone, but only when I have a problem that I just can’t fix or work out for myself. Spread those calls over my 8 years of being housebound and I doubt that you would find I have even spoken to him more than once every three months and most calls have been under 3 minutes.

It actually makes me angry the way that the chronically ill are portrayed and thought about by those who aren’t ill themselves. Which is the reason that I chose the picture to sit on the sticky post on my home page. I don’t know how that image can be broken other than for more and more of us who are chronically ill, making a stand on social media spreading the truth of our lives. Ask most healthy people what they would do if they woke with a dead hand as I did on Sunday. A hand that didn’t recover full motion or normal sensations within an hour, or as in my case until the next day, and I am sure that more than half would be on their way to the hospital. I just got on with it and wrote about it, as I do with everything else. If I were able to go to the hospital and acted in that way, I would be there at least once every week. But that is the difference between the chronically ill and the rest of the world, we just accept that our bodies are falling apart and there is nothing anyone can do about it. My only contact with any hospital is when my GP feels that the input of a consultant would be helpful, exactly the same as anyone else in this country. In fact, I think it is fair to say that the majority of chronically ill people do everything that they can to avoid going anywhere near a doctor or a hospital. Yet, week after week there it is in the stats being held up as one of the reasons that the NHS is having problems, the number of chronically ill in this country.

The biggest impact we have on any medical body is the time it takes for them to diagnoses us. Over 75% of all hospital visits I have ever had where those when they kept telling me they couldn’t find anything wrong, but they nearly all passed me onto other departments. Apart from a break of the last 9 years pre-diagnosis, where I just gave up and got on with it, which means I had 21 years of that and know that I am not alone in those time scales. Half the time post-diagnosis when we go to the hospital after that point is a waste of time. Appointments where our consultants just nod, smile and say see you next year. If the NHS want to save money then stop wasting our time by dishing out appointments from a rota. Instead, allow us to make an appointment when we need their input. Personally, I got so fed up with seeing my neuro’s nodding head, that I stopped going and I haven’t been there now for 7 years. As we age, I admit that those of us with a chronic illness will start to draw more from their services, but so do even the so called healthy. In fact, if you take into account our lack of longevity, it wouldn’t surprise me to find that it probably balances out in the end.

If we are ever going to break this blame game, or societies view of us as lazy spongers who could if we were just pushed, actually manage to work and care for ourselves, we have a lot of work to do. And there is the problem, we are caught in a catch 22, the majority of us just don’t have the energy to fight anything else. Assumption is often the biggest driver of prejudice. People assume far too much about every subject there is, chronic illness is just another one. That isn’t going to change until all of us who has any chronic condition is willing to tell everyone that we know what is wrong with them, then continue to live our lives well for as long as possible as proof. Once forced to face their own assumptions as being wrong, then there is a possibility that the world will change, but it will take each and every one of us.

As the years have passed I know that I am getting more sensitive to those who in my opinion pick on the chronically ill. I guess it is because I can’t get out there any longer and prove them wrong. I am invisible to the world apart from here in my blog and on Twitter. The TV is my ear on the world and what I hear often hurts. I get just as angry about the way the chronically ill are portrayed as I do about the constant reporting on obesity. I can no longer do anything about my weight, like most who have little to no mobility, weight happens. Yet daily the word is always picking at me that I eat all the wrong things and drink sugar filled fizzy drinks. I do neither. I know all the right things to eat and I eat them in small quantities. Not one program I have watched has ever even once said that there can be a medical reason that someone gaining weight. Rather than being pointedly told over and over to exercise and eat less, I can’t do either. From the day I was diagnosed to the day I became housebound, I portrait a positive view and image of my illness. I proved daily that there was no reason to stop, to not work and not be part of the world. I was sat in a wheelchair, but I looked smart, I was slender and I worked as hard those around me. I am just one person, it would take the same from each and every one of us. but I believe we owe it to those who will follow in our footsteps and wheel tracks.

Please read my blog from 2 years ago – 22/07/2013 – From peace to twitch

Yesterday was a more normal day, we didn’t talk about or work on any of the things that filled Saturday night, I think we both needed that small space to breath, before any more happens. I plan this afternoon after I have had my nap to make a few phone calls and see what I can find out, but……

3 thoughts on “It’s up to us

  1. I totally agree with your comments about going to the doctors/hospital. I have always avoided doctor/hospital appointments (more often than not any appointment is because “they” called me) & I have never been admitted as an IN patient in hospital. However, rather than “patting myself on the back” and thinking what a good and noble person I’ve been, I realise that I’m an extremely lucky and healthy person (apart from the SPMS).
    I think that this is true for the vast majority of people, but unfortunately this is not newsworthy and as always a few “bad apples” go and spoil it for the majority!

    Liked by 1 person

  2. i’ve never felt any judgement or been accused of using more than my fair share of health care. but i reached the point where i stopped trying to figure out why odd things were happening to my body. that waking up with a dead hand – “hmm. never felt that before, i wonder how long before that goes away, or is that part of my new normal.” spot on, other people (who i call muggles) would be in a panic to wake up and not be able to move their legs, or have a full bladder but not be able to pee. you and me, a shrug and we step into the next moment.

    Liked by 1 person

  3. Wonderful post, thank you for sharing. I found myself nodding as I read. I absolutely agree, I haven’t seen my GP in months, even when something is wrong I tend to just get on with things and hope it will resolve itself. I see our practice nurse every two months to have bloods done & my BP checked when she asks how I am I usually answer, as we all do, “fine”
    You’re so right, to listen to the news we all litter up the doctor’s surgeries 24/7 with imaginary symptoms we’ve found on the internet & are convinced we have. The thing is, we simply can’t allow other’s opinions to drain our already limited supplies of energy. We have to just live our lives as well as we can and pay them, and their toxic prejudices, absolutely no mind. Sending heaps of hugs xx


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