Valentines

Thursday morning, another week heading off to an end, and yes I do know it is Valentines day. To me it is one of those over hyped days that is due only one thought ‘forget it!’ I really don’t get the worlds desire to follow like sheep and spend money or things that no one actually needs, if you want to tell someone you love that you love them, then just say it, everyday! I just realised how grumpy those opening sentences sound, I’m not grumpy just making a point, because I can. Love is incredibly important to all of us but I think it takes on a new importance and validation when you are chronically ill. Although Adam and I make a point of saying “I love you” several times each day, and although I smile and feel lifted by the words I know in my heart just how much he loves me, without any words at all. He is still here!

I have read so many blogs of others who like me, have a chronic illness, where the writer is totally alone. Their partners simply couldn’t ‘cope’ with them being ill. No matter how it is worded or what the excuse attached, I personally just can’t see anything but a person who has had their love challenged and it came up short, they didn’t really love partner, it was just a convenient way to live and when that convenience became anything but, they have left, there was no depth to their love. That may be a sweeping way of dealing with all the reasons they gave, but I always come back to that core point, they didn’t love them. If you truly love someone, I can only think of just a handful of reason why ending a marriage would be the right thing to do.

I have tried many many times to put myself into Adams shoes and see what he is feeling and going through because of my illness, and I have in the past written in detail how he took the initial news and how he went through a long and painful adjustment. But he went through it and he stayed, he has told me that he never thought of leaving, he loves me and he had married me. My illness was all part of the deal, all be it not one either of us expected. I know in myself if it had been the other way round, I wouldn’t have questioned looking after him, just like Adam I would have seen it as a totally unfair thing to happen to us, but never a reason to leave.

If you are lucky enough to have the love of someone who truly loves you, it does clearly make living with chronic illness much easier. Just knowing that they are going to be there with you throughout what ever is going to happen in the future, give you an amazing strength to call on when needed. Although so far there have been few times that I have physically needed him to just hold me, while I went through bad spasms which have debilitated me totally. Having him supporting me physically was boosted beyond that, as I couldn’t only feel his arms, I felt his love and that gave me just that bit more belief that I can survive all of this with him by my side. My body lets me down frequently and when any of the list of embarrassing things that I don’t like happening when I am alone, happen when he is here, he just takes it in his stride and assists where needed with no sign of disgust or reluctance to help me. If I try to stop him he answers the same thing every time, that he is my husband and it is his job as such to do these things. It is hard for me to imagine the rest of my life without him and when ever we talk about the inevitable end stages he clearly doesn’t even want to think about it, far less talk about it.

So it is Valentines day, so what. It’s Valentines day every day when you have unquestioning and unlimited love by your side, in your life and in your heart.

The flipside of kickback

Yesterday I wrote about the bad side of Adam’s adjustment to ‘OUR MS’, well it is only fair of me to balance this with the good things that came through his adjustment period. If you think about any relationship it is often easier to remember the bad things, not because you are looking for them but the good side is what brought you together and keeps you together, sadly the good thing become everyday and often unnoticed for that reason. If someone says to you daily ‘I love you’ it doesn’t lessen the meaning or feeling when heard, as I know my heart still swells with it every time I hear him say it, but it does mean that 10yrs later the fact it was said daily leaves it lost and unremembered, we remember what was different from now what is the same. It instantly sounds bad when I said he would go out drinking and not come home until drunk, yet when we were together at weekends everything was great, he was caring and loving and a better husband I couldn’t of actually hoped for. The time together was wonderful, if I hadn’t had MS and if he had still been going out with his colleges nightly, I probably would have been with him and his drinking would have been less not because I would have stopped him but because we would have gone home together, just as we did before. Before my diagnosis we shared our social life, that sounds a little as though I stopped going out because of my diagnosis, it wasn’t like that, my diagnosis came after I had moved into the progressive stage my going out for the evening had tailed off as my energy did, I had to save that for work, so Adam went alone.

Weekends brought us together and any anger that I had slipped away, we were together then and it made up for the days before when things had been strained between us. At the weekends we would be just like any other couple, MS was only talked about or mentioned when it had to be, even thought there was no denying it was getting worse. My MS was jumping forward at silly rates at times, there is a two week period that left me and everyone round me, that Adam loved me totally and what was happening to me was tearing him apart.

It started on a Saturday morning when I told him that something I had eaten the day before was still stuck in my throat and I was having problems breathing. It was the start of two weeks were he later told me he thought I would die, strangely I didn’t and I found myself reasonably calm, which probably helped me a lot. He took me to the emergency department were the offending plum skin was removed, but they weren’t happy with me at all as even after removing it I was still not able to breath properly. I was taken to a ward which had single rooms, Adam came with me looking as white as paper. I still remember him not holding my hand, but squeezing it tightly, he seemed to not want to let go even to let me move into a bed from the wheelchair. I don’t think there is a human on this planet who if they had seen him then, could of had the slightest doubt of his love. Every second the hospital would let him, he was there at my bedside.

That was a major trauma, but I have seen and felt more times than I care to admit, were he has held me as I can’t hold my balance, taken the weight of my body, as he has led me to where it is safe to lie down or sit. Held me simply because it is all anyone can do, when I had sever twitches and spasms, sat with me until they had subsided and comforted me when I can find peace no where else but through him. Not once has he left me to struggle, other wise when I have told him to. Not once has he shown that he is fed-up with the tears and frustrations that build up in me and take over. He takes his time constantly to keep my life calm and ordered, as he knows better than any how change and disruption heightens all my symptoms. He checks on my constantly as he knows that OK now, may be hell a minute later. He watches and he supports, he cares and loves, he cleans up and sorts out, he fetches and carries and he does everything he can to help me through the whole mess. Not just when there is a flare but every day, from his waking to he sleeps he shows me nothing but love. The word Husband or carer, is beyond what he is as neither touch the surface of what he is to me.

A partner or carer is expected by those outside of the situation to do all these things, as that is there role, but no one has trained them, they haven’t spent years studying, gaining degrees. They have no better idea than the person who is ill, what is the right or wrong thing to do, what is to be expected or if there is something else wrong. Unless you are living in my side of our partnership or my husband, it will be almost impossible for you to truly empathise with either of us, I can only give you a window to glimpse through, but both sides of this relationship will kickback at it from time to time, it is natural. So if you are there right now don’t guilt trip yourself, you are human not superhuman.

Partnering illness

I have been reading back through some of my posts and I noted that I have spoken a lot about my life now that I am housebound and the time before I was diagnosed, yet little about the time in the middle. There is really although I may not have really written about it a whole 5yrs in the middle missing. I suppose that much of it is just everyday life but there are big areas where many will be that I am going to pull back in bit by bit, probably knowing me not in the right order.

In the main life didn’t change immediately, once I had accepted what I had been told I very much went back to normal flow of life, although you might be better asking someone who knew me at that time if that is how I remember it or how it really was. I do remember feeling as though I had adjusted with ease and I probably did adjust faster than some would, when you have had a life of trauma after trauma you learn to accept that it will happen again. What I do remember most at that time thought wasn’t me, it was Adam. I have already written a post on our wedding anniversary which explains about how we met and married, we on the outside may have appeared as a slightly odd couple thanks to the age difference but we were very much in love when we married, bought out first home and sat in the waiting room of the consultant to hear the news that what had been found by accident on an MRI scan was correct, I had MS and following the other test they could also tell me that I had Progressive Relapsing MS.

It is just about this point that I want to switch the spotlight from me to Adam. I have written little about the effect all of this has had on him, as it isn’t in many ways my MS but ‘OUR MS.‘ and I can only tell his story from my point of view. Adam was newly 23 when we got the news and he seemed to deal with it well on the surface, we had a lot of shared tears and a lot of shared worries. I feared despite his promises and insistence that it would never happen, that he would leave me as it was too much. He had married a fit and healthy 38 year old who loved the freedoms of going out on an evening and was happy to go camping, walking and act the fool, our future together had always held the fact that I would be old long before him as nothing terrible, just a fact, this throw a new factor in that we had never thought about, that way before age brought it to our lives, I was heading for a life of being disabled and him as my carer.

I saw changes in him that I know he didn’t at the time, over the next couple of years he was there in many ways to support me through the searching of what was going to happen, and accompanied me to hospital visits, support groups and anything were two was better than one, but there was something happening that grew to a point that it threatened our lives together. He had always enjoyed a drink and wasn’t good at having one drink he preferred to keep drinking, and he did. Nearly every night after work he would go to the pub with his work colleges, phoning to say he was having one drink then home, I would call a hour after he had said he would be here ,to be told just finishing this one then home, the next call and the phone was off. This went on and on, weeks then months, eventually he admitted something I can’t believe I was ever stupid enough to have not worked out, he was deeply in debt. We remortgaged the house and the promise was made of never again, that he was going to sort things out and that was it. He didn’t and it wasn’t, the nights out drinking changed to nights in drinking.

I am sure that I didn’t help any of this as I became a strange combination of clingy, wife, parent, boss, hysterical, invalid, child and monster, the worse he got the worse I got. I feared inside it was all over and I admit fully I did push and push and push, I feared loosing him and our home and if it was going to happen rather then, than years later. Inside I was getting angry at him, although I thought I understood, I just didn’t need the added stress and the constant worry of what next. I don’t know exactly what was going on in his head but I did know in myself that it was a kickback, I don’t think he had the slightest idea of how to cope, unless it was in the bottom of a glass. I would say it was fare to say that I never saw him sober on one single evening for about 2, maybe 3 years, I would drink as well but I am the type of drinker who doesn’t like being drunk, a couple of glasses are normally more than enough. He again had lost control of what he was spending and wasn’t keeping up with what he owed. Again we had to remortgage and again we made promises and started again. I feared a pattern was there that would continue and I didn’t know what to do about it as I loved him despite it all, especially as I was totally sure inside it was all because of my MS.

Adam stopped drinking a few years ago now, he had for several months been having panic attacks and had convinced himself that he was having a heart attack on each one. No one was able to convince him otherwise, not even the doctors. I tried, his mother tried even his sister had a go, he was making himself ill as he now slept little, ate little and drank a lot. For months he had trawled the internet telling himself his liver was damaged and also his heart, his behavior was genuine, he sat often in tears, the fear clear on his face that he had destroyed himself. We had been to my friend Jake’s for the evening and as always Adam got drunk, just as Jake did. I can’t remember now exactly what happened that night other than I do remember Adam making a fool of himself and Jake getting pissed off with him and telling him so. What ever it was that made him wake-up to how he was acting, he did, not one alcoholic drink has passed his lips since.

We recently spoke about all of this and for the first time he said what I had been thinking all a long, it was a backlash, a panic at not knowing what to do, a grief at what was lost and all that MS was doing and would do. We have been married now for 13yrs and I still feel guilty that he is trapped in someways more than I am by my MS, I physically can’t go out and about, but my physical condition is also trapping him, in many ways we are housebound. Adam may well be able to go past the front door but he is always tied to me, even when at work he phones to check that I am OK, away from the home doesn’t mean away from the fear that I will fall and hurt myself badly. Away from the house yes, but away from ‘OUR MS’. Society looks at the person who is ill with pity and asks in passing if their partner is OK, but we don’t give them the support and equal admiration for living with it all. I do admire him and he deserves admiration, what happened to him was nothing compared to what he gives to me daily by being here and caring for me, it doesn’t sound much on the surface but it is. Our wedding vows bound us together, but no vow can bind if the love that made them isn’t still there and isn’t strong. The old fashioned view of duty is now that, old fashioned, duty isn’t what keeps anyone somewhere they don’t want to be, this is 2012 and if I felt that he was here for that reason and that reason alone I would divorce him, because I couldn’t live like that.

I still often wonder what is going on in his head and how he really feels as he is the type of person who doesn’t really talk about things that he sees as fact, his view is if it can’t be changed why talk about it, so I still have to guess. My guess, he loves me and there will always be a bit of kickback at MS because that is how he handles things. All partners of those who have a progressive illness have in someways a more difficult role that the person who is ill, the partner has to watch it without being able to stop the invisible source of what is slowly eating and away at and destroying the person they love, that person is disappearing tiny bit by tiny bit, that person is in pain and there is nothing they can do but watch.

More Transitions to deal with.

Last night there was a really rare occurrence, Adam and I had an argument. We have had in our 14 years together very few arguments or even cross words, although others around us frequently have thought otherwise. Our relationship has always had a snipping context to it, one line comments that have no possible answers to them, or if possible to answer, it is with another one line comment. Unless you have ever had a friendship which is like that, it is hard to explain that we are really playing a complex game, the rules of which have been laid down over the years and others can’t just join into without getting it wrong. So when last night I found myself constantly explaining how I felt and what I meant it was all rather strained and odd.

To call it an argument I know is wrong it was more a need for action without causing offense. It stems from one of the biggest differences there is between us and that is our individual views on how often housework is needed to be carried out and whether it actually matters if it isn’t done.

I have always been houseproud, not a word that I really like but it best describes how I like my home to be. I have always kept my home as Adam would describe it, as ready for the Queen to pop in for coffee. I would say ready to have a photos taken of without embarrassment. I hate being able to see dust sitting on anything or dirt at a level it is obvious. This time of year is horrid in that respect as suddenly after months of low light levels and closed curtains, suddenly there is the bright clear light of spring filling each room and here is the crunch not shinning back off every object it touches. Our home is full of highly polished object, chrome, silver and crystal is visible where ever you go and all of it should do one thing, shine. Add a vale of dirt or dust and it fails in one of it’s primary roles. The warm weather of the past few days had seen me spending more time in rooms actually filled with light, meaning more time to feel dismay at the state of my home. My world is small and to see all of it deformed by lack of care hurts deeply. Action was needed.

Yesterday morning before Jake came round I started to find out what it would cost to have a cleaner come here to just sort out what I couldn’t do and what Adam didn’t want to do. When Jake arrived he made a comment about the state of things, I have known him for over 20 years so he knows me well and he knows how I like my home. By the time Adam came home, slightly later than normal, I was already slowly passing steam from my ears, what followed was inevitable.

We passed the conversation back and forward, throwing one liners that changed on my part to cutting comments mixed with tears, frustration, emotions and begging. He sat silent as he does at times then simply said ‘I suppose I could try to do an hour a day after work’. He then got up and without another word went off and started with some much needed basic housework. I didn’t actually feel any better because here is what the whole thing was really about. I knew we can’t afford a cleaner, what money we have is much needed for the basics of living, I rarely ever ask Adam to do things for me. Usually I struggle silently unless he notices and offers help, to ask for help isn’t a sign of weakness or anything else that you might think it is. No asking for help is changing his role in my head from husband, to carer. I don’t want him to be my carer, I want him to remain my husband, my friend, my companion and nothing else. At times I have already had to let him step over the line in my head, I have had to accept him doing things for me so personal and embarrassing that I wouldn’t want to ask anyone for help with, but there has been no other way.

This is one hurdle that although I have clearly seen it ahead I have managed to keep my distance from. It is harder than any other hurdle that MS has presented to actually cross over. He has told me repeatedly that it isn’t a problem, that it is the way things are and that he doesn’t see it as him being my carer, it’s just part of what being my husband, requires. He can tell me that a million times but I still can’t or don’t want to accept it. I accept that in time I will have to but this transition stage is a hard one, as my self image along with his, are what have to change in my mind. The time for that change has to start now but I still don’t want to make it.