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.

11 thoughts on “Partnering illness

  1. I have occasionally seen tears in my parners eyes when watching me struggle in the earlier days,it would seem it upset him more than it did me,I was too busy coping with the physical effort of it all.

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  2. It is my parents who taken care of me with my fibromyalgia. I use to be somewhat embarassed by the fact that as a 40 something man (now 52) that my parents had to really help me. no more. I would not be hear without them. I have never found someone to share my life with. (Well, actually I have, but her problems are far worse than mine, and the biological ones are the least of her concerns.) These diseases and maladies are not ones you can deal with by yourself. You have to do it as a team.

    I know that fibromyalgia in and of itself is not deadly, but if I had still lived in Colorado, on my own, I would not have made it. Living at home, with people to help me, look after me, in the first three months, I lost 60 pounds. I could not eat, sleep, work, or any of the other day to day things one must do. And as I do tend to be solitary naturally, I would have become increasingly isolated and weak if I were on my own. And then, in that weakened condition, physical and mental, anything can happen. I have nearly done that “anything” a few times, which is why I am at home, not the high mountains forever.

    It is never easy, but you have to have partners to deal with this. You have Adam and others. I have Mom, Pop and my brothers and sisters. But they have your problem just as much as you do. And the gratitude you feel for them is unexpressible, yet always being communicated. In mamy respects they give the gift of life. And in our own way, we give it right back to them.

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  3. It is so important that we as you say give back, our carers be they partners or family they have to adapt to the new life none expected and there is no reason why they should psychologically adjust any quicker than we did. They may not have the physical pain but they have everything else and a bit more on top to handle.

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  4. I am not sure at all how I would feel if I was watching Adam struggle instead of the other way round. He has on numerous occasions said he wished we could swap bodies just so I could be free of it. It is a different pain from ours but their pain is no less real.

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  5. You are right in saying that you are both grieving for the life that you hoped to have at the beginning, but now won’t have.
    It is hard I am sure for you both to know that your life will take a different path from the one you planned. Full marks to Adam for being there with you through all of it and full marks to you for caring for his pain as well as your own. It sounds like you are both having to support one another in different ways.
    Thank you for sharing this. It does help me to understand in some way what my best friend goes through with her MS.
    take care both of you xx

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  6. Sometimes we forget about what our partners are going through when we face adversity. It is happening to us, why do we ned to worry about them? But as a society we should be caring about the carers as much as the person who needs the care. It is just as hard for him, seeing you like that, it must be so hard and I feel for you both xx

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  7. Wow… Thank you for sharing your (and Adam’s) life with us. Your honesty and openness will be of great help to so many who do not yet know that they will be heading down the chronic illness path.

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  8. Adam hasn’t told me what his thought are on this but I hope that he sees the importance of my writing it. Not all know face the same or anything like it, some will face worse. Illness is pervasive in it’s effects, like a creeping fungus it takes over millimeter by millimeter, everyone who gets within range.

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  9. Pingback: The first steps forwards | Two Rooms Plus Utilities

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