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”
Two Rooms Plus Utilities 
I try like hell. Living alone I have no choice. All my life I’ve always hated to ask for help with anything. Now with no car, a huge one for me, I ask for rides to Dr appts, to the pharmacy, get food. The city has helped me with re-plumbing my mobile home and insulation and reattaching the skirting, I went 8 days with no water because my pipes kept freezing and breaking and the skirting kept blowing away so I had to chase it a street over in a mountain of winter snow. I now need help keeping my home clean but I’m putting that off as long as I can. I’m trying to take steps to ensure I can stay living alone until it’s unavoidable. All of these things are important parts of what makes me me. Each one has had an anger and mourning period at it’s loss. I too have lost mental abilities. Knowing what day it is many times a day, I have a calendars layin from the kitchen to my bedroom. Talking to strangers is taxing and takes days to weeks to get my mind and body up to the task. I avoid the stove and oven. I’ve walked away forgetting until the smoke alarm went off. I eat A LOT of fruit, vegetables, yogurt, granola, all the good for you food. I don’t eat out, no car, or processed foods so on the perk side, lost 30lbs since Dec (since being diagnosed Nov 2014 I’ve lost 80lbs) and keeps my Dr’s happy and it’s easier changing my clothes. When it comes to being naked now, I avoid the mirror because I look my skin is melting off of me. I completely understand and thank you for writing it down for us. It amazes me you still have the energy to write daily. And to talk with us in comments. You haven’t lost everything, you still have a voice. Thank you so much for sharing it with us. ((Many hugs))
LikeLiked by 1 person
As I said in the yesterdays post (the first half) I don’t consider that some of them would count as lost to me and other ones, to others. The definitions, in many ways holds the emotional side back. If you like, I argue both sides with myself. Some days one side wins on other, the other one does. A bit like the good and bad days if you like.
We all struggle with loss, it doesn’t matter what it is, but so far, independence is the hardest. I have much a head of me, that I honestly don’t know how I will cope with it, but cope, I must.
My blog, and all of you who read it, are the only ones who hear my true voice. On really good days, Adam hears it too, but then that damn stutter and brain gaps appear. I have to write, I have to put all of this somewhere and it is the thing I recommend highest too all. I just so glad your all here to listen.
Take care, you have so much living to do. Don’t let go of a second of it, as I see a strong independent women, with a very large heart. (((Hugs)))
LikeLiked by 1 person
Thank you. I stutter, forgot what I’m saying as I’m saying it too. I write everything down or I absolutely forget. My calendars are my diary too. This is why it takes me so long to get up to the task of talking to people. I find many people don’t understand MS and how it effects our communication. I’ve lost more but as I’ve said before I’m living it so I hate talking about it to others. It just makes me fight harder, (been told I’m just hard headed), to keep pushing to do more. Hurting so badly because of it.
LikeLiked by 1 person
You are stronger than you think. You have gotten this far, be proud of that. I’m proud of you, and trust me, I know 😉
LikeLiked by 1 person
Lol…ty. It’s an for me to be told I’m strong, especially by you. You’re the strongest woman I know. Women don’t value their strength as I’ve found and always have. So losing any part of my Independence makes me angry at myself. Stupid I know but I value it so much it’s hard to let go of any.
LikeLiked by 1 person
I read your blog everyday. I pray for you as well. I think that blogging about your story gives those of us that are not going through what you are have a better understanding of people who are, or of those we know or knew who were ill. You are an inspiration and your words Matter.
Thank you for your insight and for not giving up.
LikeLiked by 2 people
Thank you (((Hugs)))
LikeLiked by 1 person
I’ve lost so much of my independence. Stuart is involved in every aspect of my life.
Eating…I’m like you, it’s art. Now I can’t cook, so Stuart does it. He tries but it’s not the same. I loved cooking, in my head I still make up meals, recipes…. I so want to get back in the kitchen.
Bathing, I can’t do alone. I am one of those who found a nice bath very relaxing. Reading in the tub, or relaxing with candles, I loved it. Now, I have to have help. Some days a kot of help, others I just need help in and out. But taking a shower, no way…I’ll fall in a minute. Never completely alone. My illness and having to have him be there to help makes it so I don’t get a bath as often as I’d like. And washing hair is worse. Vertigo and bathing is hard.
Going to the toilet. Sometimes I need help with this. If I’m having vertigo I often can’t walk to the bathroom. I have a bedside toilet that Stuart helps me with, he’s cleaned bed pans…. this was hard to get over. It is degrading in many ways, but it’s worse when I have severe vertigo and lose control of all bodily functions. Having him have to clean up everything from vomit to crap, it’s humbling.
Dressing…I can normally do this, but sometimes I need help. And I like to dress decent when I go out, often that’s just to the doctor, so they see me looking better than normal a lot of the time.
Socializing. ..sometimes I miss it sometimes I don’t. We’ve talked about that.
Paperwork…I am overwhelmed now, and I have always taken care of things. Heck I didn’t get married until I was 41, yes I took care of me.
Sometimes it’s even hard for me to read now.
I can read blog posts most of the time, but a good book, or poetry…it has been hard this year. I normally read over 100 books a year. This year I think I’ve read … heck I don’t know…2?
The point …. I get it.
LikeLiked by 2 people
I guess, that it doesn’t matter what the order we lose our independence in, it’s always going to hurt, which is something I don’t think outsiders fully understand. To them it’s like part one of this post, clinical, to us, it’s anything but (((Hugs)))
LikeLiked by 1 person
Yes. I try to see it as clinical sometimes as a way to distant myself, but it comes down to…it’s hard. I’m ok with Stuart’s help, but others…not so much.
My sister couldn’t understand why I wouldn’t want someone to come in and help me bathe. of course she insinuates herself in helping me when she comes in ways I don’t always feel comfortable. When she comes I try to put on my bravest face and not seem as if I need help. But she comes when we do. She doesn’t help the way I want. Cook, clean….don’t try to bathe me or hold me when I vomit. (we aren’t that close)
She helps care for my father, and I can’t imagine how he must feel when she does these things for him. She told me that he feels better when she has someone come in to help him with hygienic needs. I said…Well i would think so. Does she think her father feels comfortable with his daughter seeing him naked.
I don’t have the problem you have with people seeing me naked. I think I have been through so many medical procedures my whole life that it just doesn’t phase me….well for some things, some people. It depends on what they are doing. Help me get dressed, ok, but wipe my butt, no friggin way!!
LikeLiked by 2 people
I feel the same as you both do. How can we do something different? Make it better for all parties involved? I’ve been thinking about this for awhile. I guess for me an in-home nurse. Not someone who loves me and have to see each other after I’m clean. I want make it be as impersonal in my head as possible. Just like maybe, I don’t know, a business deal.. So many indignities an ill person has to deal with, and plan for, be anxious about. Taking energy away from our health issues, safety of our meds, keeping as much brain and physical functions as we can. Made me anxious now typing and the flood of other things to worry about.
LikeLike
I guess it is a case of doing just that. Working out exactly how your idea life would be, then finding out what is possible, before bringing those two together, as closely as possible. I am still at the awkward stage and I know that. I have to get past it, and accept that something’s are always going to be imperfect. 😦
LikeLiked by 1 person
You’re right. Right now I have state medical and federal disability so I’m looking into what is exactly covered for help. I get so overwhelmed now trying to figure out how I’m going to get me taken care of. On good days I do as much as possible but those are getting fewer. 😟
LikeLiked by 1 person
I think it is often forgotten by even our families, that we have feelings, not always the same as theirs. Is it really so hard just ask, “can I do this for you”, “Would you like a cuddle”, whatever, just ask, before you do. I know it can be hard, but have you ever tried to just sit her down and explaining how “YOU” feel. I know you don’t want to hurt her, but you never know, she might understand and then you could both feel right about what she is doing. If you can’t say it, why not write it down and let her read it, with you sat beside her. It’s just an idea. 🙂
LikeLiked by 3 people
My sister…oh, what a story there…I’ve tried to tell her. She gets upset that I’m more comfortable with my husband taking care when I need than her. She can’t understand that he is my rock. We went into therapy together so to deal with this change. I know he considers it an honor to care for me. I’m comfortable with him. is that so hard? and yes I’ve told her all of this.
She can’t get that she can help just by being here.
Or help him…clean some, do some laundry.
But she thinks taking care of me is only being a nurse, anything else isn’t helping me. She really just doesn’t get it.
She once said, “I know you have lost a lot and have to deal with a lot, but you need to get past it and move on.”
When I was in the hospital for seizures they said that my stress could be adding to it. She said, “what do you have to be stressed about?” Then I snapped….I told her to live in my shoes for a day and see what it’s like.
To locosioca – I don’t deal well with having a hired person help me with hygiene. I went so far as to start interviewing people, but I just can’t do it. They can come and clean and cook, but I want my husband to help me.
I handle this better than it sounds.
as I mentioned above, I went into therapy to help me with this transition of losing my independence. Soon I asked my husband to join in the sessions. And that saved us. It helped me sooo much and our marriage is stronger than ever.
to livinginalimitedworld – I had a hard time letting S see me nude, but he doesn’t see the flaws like I do. I assure you I am no longer tones and have gained weight…and lost weight..so my skin is saggy, and I’m still overweight. (I lost 50 lbs.) S still sees this hot woman. He says he doesn’t see me as I was, but he still thinks I’m hot. and I know it’s true because I see how it effects him when I don’t have clothes on. *wink*
don’t be so hard on yourself about your body. We aren’t our looks, we are so much more and that’s what our husbands see, and love.
Even though he has seen me in some ew conditions, we still see each other as the person we married and still have chemistry for.
{{hugs}}
LikeLiked by 2 people
I agree.
LikeLike
I am so happy for! You have all you need in your husband. Sorry about the sister. Mine live 3,000mi away and I am not married. Got rid of that control freak 17yrs ago. I live alone now and I was thinking out loud about what I hopefully can do to take care of me. You’re blessed with your hubby. I hope your sister gets over herself and pitches in where she’s needed! There’s always laundry and a house to clean, or just a friend to hang out and sit with.
((hugs))
LikeLiked by 1 person