I realised after I had completed yesterday post that I hadn’t mentioned what the Doctor had to say, eventually, about my mole. I phoned on Wednesday afternoon and luckily didn’t get the somewhat moody receptionist who I have mentioned in the past. It was to her email account that I had sent the photo’s. I did actually call back on Monday afternoon to check she had received it, as I had heard nothing. The receptionist who answered the phone had to check but then confirmed that it had arrived. By luck on Wednesday when I called back, my Dr was free to talk to me. He was apologetic, as he had asked that an email was sent to me, to let me know that he thought there was nothing to worry about. Because of the fact that it had changed, he wanted the hospital Dermatologist to check it out and had requested an appointment for me. All of which he said had happened on Monday morning, so when I phoned on Monday afternoon, she could have passed that message on to me, or taken the hint that I was seeking an answer of some sort and sent out the email as she had been told to. I had half expected the doctors response and that I would once more be on my way to the hospital to see yet another consultant. So, it’s just a matter of waiting for an appointment to eventually arrive.
When Adam was home for lunch yesterday, he mentioned that he had requested to have next Tuesday off. I couldn’t for the life of me think why he wanted such an odd day off work. After all, taking the odd Monday or Friday, allows a long weekend, but a single Tuesday is just odd. As far as I could remember there wasn’t a reason why he would want to be at home that day, but with my memory, well there might just have been. He said that it was so he was here for the appointment with the MS nurse. He thought that I might like some support when he came to see me, which was really nice, but he was coming to see me next Monday, not Tuesday, well that was what I thought. It is, in fact, another good reason why Adam normally opens all my mail or at the least reads it. I had got the wrong date in my head, it’s the 22nd, not the 21st. He also thought that it might be a good idea for him to meet one of them so that there is a note on their records that he is now quite clearly my carer. Hopefully, that will make things easier going forwards as they will at least know who he is if he needs to contact them on my behalf. I know he is right, just as it’s right that he now attends all my hospital appointments with me, but somehow someone coming to the house felt different. It took me a few minutes to get it all straight in my head and I worked out why I felt the response that I did. The flat is my domain, I am so used to the idea that this is my world and that I can cope within it, that I hadn’t even thought about the fact that this was an outsider, someone who is as likely to confuse me as many medical people do.
Every time that the MS nurses arrive, they start their visit with a questionnaire that covers all the basic things. Am I still able to dress myself? Can I prepare my own meals? How am I coping with my medication? Can I still wash myself? The list goes on and on, but for the first time in years, my answers are going to be so different. I hadn’t put that much thought into the time scale over which the most recent changes in my health had happened. Thinking about it has made me realise just how stark those changes are and how quickly they have all really happened. Our last meeting was just a year ago and it is like chalk and cheese, I have at last reached the point that not including his love and emotional caring, as I said the other day, without Adam, I wouldn’t any longer be able to cope at all. I don’t think that I have ever actually written or said that before, but it’s totally true, in one year I have gone from independent to reliant and it’s a fact that can’t be ignored. I guess that I have been playing games with myself, tricking myself by skirting around the actual facts and it is all too easy to do. Saying to myself that I have lost my independence and saying that I can’t cope are two totally different things, and their psychological impact doesn’t compare at all either. That is the equal beauty of our language and a huge danger zone for those of us dealing with medical issues of any sort.
Fact, there is always a nice soft cuddly word that sounds similar to those nasty spiky ones that none of us wants to use. It is too easy to sit here and make it sound as though there is nothing really that wrong with us when the truth is the opposite. There is also a huge difference between deluding ourselves and misleading our medics, the second could actually be deadly. As long as we are hiding the truth from ourselves, how on earth are we going to get the treatment and care that we need and probably deserve. Two days ago I sat here analysing my loss of independence. I wrote a whole post about it as though what I was talking about was being unable to change a light bulb, I just didn’t want to face the truth. It has all come to ahead simply because of my wheelchair, but that is now clearly just another symptom, it wasn’t the answer I was hoping for. Somewhere in the back of my head, I had this picture of sitting down over those wheels and the world would suddenly become shiny and new again. It wasn’t, and I have to admit that even an electric chair isn’t going to have that effect either. It will make life so much easier, but it isn’t going to give me back either my independence or my health, or make it possible for me to cope with life by myself. No matter what aids or gadgets we acquire, I am never going to be able to cope with normal everyday life again, fact.
It has never been my wish that Adam should leave me, but my measure has been for so much of my life, thanks to my first husband, “Can I really manage on my own?” Being able to answer “Yes” to that question was so important to me, that it has remained with me right through the last 26 years. Until the last 6 months, I was still able to answer it with a “Yes”, well there were a couple of tiny issues, like emptying the bins, but I was sure I would find a way around them. But for the bulk of everyday life, it was “Yes”, now it’s a “No”. I have been fooling myself in the last few months, no, “lying” is actually the correct spiky word and the true one. I was lying to myself, as the truth was just too painful for me, but I don’t have a choice any longer. I have become that person who has to be cared for, as without it, very quickly I would die. How long would it be before I took the wrong drugs at the wrong time? How long before I developed an infection because I hadn’t been taking care of myself, by washing and showering without someone to make sure that I did? How many important appointments would I miss? How would I manage having to speak on the phone on my bad days? How could I cope with dealing with people, without floods of tears or confusion? How could I clean the house? Do the washing? Sort out the shopping I can’t even lift? How would I just deal with everyday life? The answer to all of those and many more is always now in the negative and my need to no longer be on legs that don’t carry me, has just made every single one of them harder. I can’t cope on my own, full stop.
So I have said it! I have admitted it! Does that mean I accept it? Not quite yet, but I am getting there. Well, I hadn’t admitted any of it until in the last few minutes, it will take longer than that. Pouring my mind out onto the screen may be my way of writing, but it has a downside. I can’t control my brain and it often exposes things here first, then gives me the task of dealing with it. Yep, I hate my brain!
Please read my blog from 2 years ago today – 18/09/2013 – Professional patient
I took my first boosting 10mg morphine tablet, the pain in my ribs was really bad and yet again finding peace to just sit and watch TV just wasn’t there, so I took one. I couldn’t believe not just how well they worked but also the fact they worked really, really quickly! I don’t believe that I have…..
SUCH A SAD POST !!! YET, SO VERY LIBERATING. BEING HONEST WITH ONESELF IS DIFFICULT,BUT SO NECESSARY. YOU MAY HAVE LOST YOUR PHYSICAL INDEPENDENCE; BUT YOU HAVE A LOVING AND CARING CHEERLEADER. WE SHOULD ALL BE SO LUCKY………NEVI
You write about what most people shy away from, disability. Thank you for talking about your MS in such a frank and refreshing manner.
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I AGREE.PAMELA HAS PRMS,WHICH IS TWICE AS DEADLY AND PAINFUL AS MS.NOT THAT MS IS A PARTY EITHER. BOTH ROB YOU OF ALL THE THINGS THAT MOST TAKE FOR GRANTED.IT’S ALL TOO SAD.
Over the past 10yrs I have lost the ability to do much of what I love. Pain and spasms are a constant. Slowly I’ve lost the ability to cook, walk, garden, sew, drive and even read. I’m determined to be true to myself, but sometimes it is a challenge.
I admire anyone who has the courage to speak/write the truth for the many living with debilitating illness.
Pamela, Thank you!
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YES, PAMELA, YOU ARE AN INSPIRATION TO HUNDREDS OF THOUSAND PEOPLE WITH CHRONIC AND TERMINAL ILLNESS’ THANK YOU.