When I read back yesterday post, I was very aware there was something missing from it. To me, it was something so major, that I knew I had to write a follow on post, one that would not just correct the mistake I had made, but would explain to both you and me, what is really behind my pain. As I said in the opening paragraphs, that I’m hurting, that I can’t accept that I am losing my independence nor the speed that it is happening. Then I proceeded to write a more clinical post if you like, one that explained the physical events that add up to my loss of independence. There was the problem, I wrote a clinical post, how I feel is not clinical in any way. Clinical is what the doctors, the government and the social services assess. To me the person who is living with it all, it isn’t clinical, it’s personal, it’s emotional and it hurts like hell. So this is the flip side of yesterday post. Today, I am going to take each of the six sections, and look at them through my eyes, the person who is living with each one and how they effects me, physically and emotionally.
The first is eating. Eating is to some people, ie, Adam, something that “simply supplies the nutrition that we need. It doesn’t matter how it looks, just shovel it in” WRONG! Eating is probably the most important thing in my day. It gives a break from all other activities, admittedly it isn’t as exciting any longer, but that is down to my lack of ability to cook. I have fallen into just keeping it simple. I have found a few meals that I am happy enough to eat again and again. But I do have a complete feeling of dread about the future. Food should be interesting, it should look great, smell wonderful, taste fabulous and along with the taste, should be a range of textures, to equally excite your mouth. Some of these things I already miss. As things are, I frequently choke on things, so textures have already slipped as softer foods are easier. Meat has almost gone, not that I miss that, but I do miss fish especially shellfish. Preparation and expense have reduced them to rare treats.
If my dexterity fails me and I reach the point when spoons and forks defeat me, then let me eat with my fingers, rather than someone feeding me. I can’t bare the thought of good food becoming a mushed up mess. If you like, a return to toddler foods, as I have seen so many landing up on, so that they aren’t in danger of choking. Food matters in so many ways and as far as I can see, every single one of them is ignored, it becomes all about nutrition. I hate the idea of soft nameless slop being spooned into my mouth. I would rather have another tube down my nose than be fed slop, though, I doubt the doctors would agree to that, just out of preferance. Ask a doctor and food is nutrition, ask a chef and food is art, that the side I fall on. When food can’t be an art, I don’t want to eat it. Right now it may not be an art, but that is down to practicalities of life, I could still eat a meal from any top restaurant you can name. I could, it’s just thanks to life, that I don’t.
The second is bathing. For some bathing is a wonderfully relaxing experience, I’ve never been one of them. So to me, this doesn’t rate highly on my list of desire or luxury. I am happy to be in and out of the shower in five minutes, so my emotional problems with showering are totally physical. I can’t stand the idea of being seen nude. I wouldn’t have batted an eye about it years ago, but now, no. In 9 years of being housebound, every one of those toned muscles that I once had, has turned to flab. I don’t even want to look at my body, anyone else seeing it, is something I want even less. I wouldn’t just be embarrassed, I would be mortified. I will fight with every once of my bodies energy before I would allow anyone, to be there with me, to wash me. To many, I know this will be surprising, but I don’t even want Adam to see me. He has done so now for about 11 or 12 years, I don’t remember, but I’d rather his memory stays as it is. I already find showering exhausting, even though Adam now does all the running around and shifting of towels, clothes and so on, I am knackered in just those 10 minutes, but I won’t give in. Emotionally, this one is huge and I can see, probably the one I will be facing the soonest.
Going to the toilet. It should go without saying, if I have the problems above with bathing, they are going to be doubled with this one. For some reason, even the idea of someone helping me onto and off the toilet is just wrong, terribly wrong. No matter how I have searched, I can not find any way that the word dignity and toilet can ever go side to side as our health fades. The fact that I could already on occasions benefit from a comode in the bedroom is totally ignored, by me. It isn’t just the idea of using it, it is the idea that Adam would have to empty it. The emotional hurdle in that one is higher than the ceilings in our victorian home. Worse still is the fact, that I am supposed to self-catheter all the time, I don’t, I just do it when I know I need to. I can’t bear the idea of Adam having to do that for me and although a lesser hurdel, a nurse coming in a couple of times a day to do it for me, I still hate the idea. To me, it would be better to have a permanent one, but yes, someone would have to enter the bag.
Toileting is a subject that has to be the hardest one to get around, the ultimate thing that says, you have no independence. The final mortification in life. The day that I lose all ability to deal with this area of life, is the day that I have to start thinking about many things very closely. In many ways, this to me is my game breaker.
Dressing and undressing. I have never had a great interest in clothes. I was the person who had enough clothes to keep my body covered in a style I liked, and no more. Everything was and is black, and everything instantly goes together. What I put on in the morning, is what I always wore to the end of that day. I never had different outfits for different occasions, I had clothes. Nothing was appropriate or inappropriate, it was just what I was wearing. To be honest, I care little about this at all. Even when I go to the hospital now, I wear my pyjamas, why change, black baggy trouser and black baggy top, their clothes. I guess you get my drift. As long as it’s black, I don’t really care. But the future, well then I care. I can’t hide my body from the person dressing me, that I care about that greatly. Dressing or undressing while covered by a sheet, is a million times harder and I don’t have the flexibility, if I had, I’d never need help.
Socialising. People make a big deal out of this one, which is something I don’t really get. As I said yesterday. I am happy with life as it is, to me, this has nothing to do with anything except when it comes to when I have to deal with anyone other than Adam. I have grown used to our life and outsiders disturb me, as long as he is between me and them. I cope. But I have spoken about this all before.
Dealing with paperwork. This one hurts. I know it’s an odd one to find pain in, but I do. Since I was a child, I have dealt with everything myself. I taught my own mother how to pay a bill when my father left, as she didn’t have the first idea. I wrote up my own divorce papers which my lawyer only changed slightly. I’ve dealt with pensions, mortgages, you name it, I have done it without aid. I can’t even read a letter from them these days without going into a panic. Dealing with the legalities of life, are now beyond me. This to me more than anything shows me I will never be independent ever again, physical abilities come and go, mental ones, only ever go.
Independence is so emotional, so awe-inspiring that when it comes to the time you are being forced by your own body to let go of it, well, no form from the government, no visit from a social worker can ever sum up what it really means to us. Even the words that I have written here, only touch the very outer edges of it. I don’t think I have the ability or knowledge to put down their full impact. If you still have your independence, even just a tiny shred of it, hold on to it tightly, never give in, just because it might be easier, as trust me, it’s not.
Please read my blog from 2 years ago today – 16/03/2014 – “It’s life Jim”
I know that there will always be good days and bad days and that I will never have any control over which happens when, but what I would like, is to just smooth out the extremes. Yesterday my pain was more or less out of control, I twice reached for and took a booster pill just to get myself set at a level that I was comfortable to go forward with the rest of the day. Yet just earlier in the week I was feeling good and able to get on with life without a second thought about taking more meds, tablets which I now have stashed in three places around the flat. One with the rest……