Back in action

One of these weekends, I know I am going to kill Adam. It doesn’t matter how much I love him, but if you heard the noise he makes while he sleeps on the settee, I’m sure that most people would forgive me if I did. Honestly, he has to be right up there, in the top ten of snorers on the planet. I just don’t get it either, as he isn’t wildly overweight or any of the other things that they say is behind it, but the noise is unbelievable. I have to admit that most mornings I just block it out, but there are mornings like last Saturday when every single snore felt as though it was vibrating through me, and that is something you can’t block. I guess it just goes to prove, that it doesn’t matter how much you love someone, sometime’s, they can do the most innocent things, but it pushes you right to the edge.

I know that I have spoken to Adam about it in the past, and he has always said no, but I am sure that there are things about my health that must really get to him, after all, he is human. He would have to be superhuman to not even once, get exasperated by the fact that he has to do so much for me, and our home. There are so many people who can’t even deal with being asked to fetch a coffee, so for him or any partner, to have not once thought “Not again”, would amaze me. If I can get exasperated by his daytime snoring, I can’t accept that not once he hasn’t thought, “Not just now!”. I know without a doubt that some people aren’t as good as Adam is at hiding it, but even he lets out the odd sigh, or noise that tells me, he is not best happy. It is those human factors, the sounds, the body language, and expressions that I believe, is the source of people feeling they are a burden on their family, or are when more extreme are behind so many out there feeling that they are alone, or that their families just don’t understand, or believe, what is happening to them.

I have come across many who have said such things, I even have personal experience of it. Although I wasn’t diagnosed, and at that point the doctors couldn’t find the reason for how I felt, I knew that there was something wrong. I had, of course, spoke to my first husband about how I was feeling. His reaction didn’t really surprise me, as he wasn’t exactly the most caring of people, but he clearly didn’t believe me. I now guess that he was looking at me, couldn’t see anything wrong and therefore didn’t believe I was ill. He was very much that sort of person. If I wasn’t lying on the floor unable to move, well, I was well enough to cook dinner at least. Even my mother’s reaction was suck it up and get on with it. So yes, I really do understand those who are struggling alone, despite being surrounded by people. The fact that the majority of chronic illnesses are invisible makes having one, far harder than it should be. The people we expect understanding from is our families, not getting it, is worse than any doctor saying, they can’t find anything wrong. My health had nothing to do with my ending my first marriage, but there is one thing that I am now sure of, I would rather be alone right now, than live with someone who just doesn’t understand, no matter how hard that would be.

No matter how much you love someone, and no matter how long you have been together, being ill strains every relationship. I know that I am incredibly lucky to have Adam, and no matter what he says, I do worry about the future. Five years ago, all Adam had to do for me was the housework. As every year has passed that has grown into having to do everything in the house, and looking after me more and more as well. In the last year, there has hardly been a month that has passed where something new hasn’t been added to the list of support and help that I need. When he is here at home, there isn’t an hour now passes, that Adam isn’t doing something for me, or doing something that I once did. Right now, he is doing it maybe not always with a smile on his face, as he isn’t like me, someone who smiles with ease, but at least not with a frown. Yet I don’t even need to ask if we could afford to have someone else here doing it all for him, that he wouldn’t jump at the opportunity. It isn’t just that he would like more leisure time, I know that he would just like the chance of having some time off.

For the first time ever, I am beginning to feel like I am, not a burden, that isn’t the right word, but that I am taking up just too much of his time. I know that he is happy to do it all, but I just feel that it is starting to become unreasonable for me to ask him to do anymore, on top. I don’t know what the next thing will be, what part of me will fall apart and need his help, but whatever it is, I honestly think that we are not far off the day when no matter who we each feel about it, we will need help from social services. I know a few months ago I spoke about finding out what they could offer, but everything went on hold, and still is, because I wanted to do everything in a set order I had in my head. I wanted to work backwards, starting with my funeral. As you know, if you’ve been reading for awhile, that all hit a stop when I discovered that my funeral plot, wasn’t in my name. That problem still hasn’t been fixed. My daughter has just started a new job, that means she has a lot of traveling and is in fact, right now she’s just returned from Poland. Finding the time to visit her father on my accord, quite simply hasn’t appeared yet. She will, but waiting for it now seems unreasonable.

Life, though, has done what it often does, it is pushing its way forward and forcing me to change everything. I really think that the time has come, when I have to stop waiting and start on the other things on that list, before whatever that next thing is, arrives. I just don’t feel that it is fair, no matter what Adam might say, to ask any more of him, if there is another answer. Where I start, as always I don’t know, but I have to start and stop just sitting here hoping that my health will remain level, when, it so clearly has no intention to. I think this week, I need to look at that list and see what else I can do now before I’m not able to.

 

Please read my blog from 2 years ago today – 09/05/2014 – Injuring my ego

I have managed to injure my right ankle. The stupid thing is I don’t remember anything happening that could have caused it as it feels as though I have pulled the tendons just behind the ankle joint that run up from your heel to a couple of inches above the ankle joint. It is the sort of injury that you don’t need to move to be able to feel it, I spent all day yesterday limping and woke again this morning aware of the pain before I even put any weight on it. I know I took a fall last week, but since then I have had a couple of wobbles but nothing severe enough to damage another part of me.

One of the big dangers that you learn to live with isn’t just what your condition is doing, but all the silly little injuries that you manage to do to yourself along the way. For years, I have found really deep bruises all over…..

Charting progress

We all know what it is like when you get a silly idea into your head, and you just can’t shift it. I had one of those about a year ago. and it landed up with my purchasing an oxygen level monitor. I had it in my head, that my levels were dangerously low, and even worse, that every night, I was receiving increasing levels of brain damage. It always felt as though the change from vertical to horizontal, was making my breathing so much more difficult. At the time, I was waiting for an appointment at the chest clinic and the appointment, wasn’t come around quickly enough. As it turned out, firstly, the monitor didn’t actually arrive until a couple of days before the appointment, and secondly, the consultant told me that readings of 91% didn’t mean I was about to die, it could fall right into the 70’s and I would still live. I wouldn’t be energetic, but I’d live. Once I had had my mind put at rest, by the doctor, not the monitor, I put it to one side, grabbing it occasionally, but in the main, I forgot about it.

It actually feels like a long time since I last just sat here doing nothing, but with my oxygen monitor on. I used to do it occasionally, more because my eye was caught by it sitting beside my keyboard, than any other reason. In some ways, I probably should have used it more often and built a clear chart, that would make finding the abnormal easier, but I didn’t. So when over the last few days, when my abdomen has been creating pressure levels off my normal scale, I thought that I knew my oxygen levels would be low, but I didn’t have that much-needed chart, to be sure. I was getting reading from their highest at spikes of 93% right down to 86%, and one dip falling at 84%. All figures that I have seen before, just as I have seen all my differing heart rates, but I don’t remember a single one, with any certainty. It has made me realise, that although I have this tool, plus a few others, I have totally missed the opportunity, to build a picture of just what my lungs and heart are doing, or not doing.

When last summer I had a bout of pneumonia, I know that Adam was worried sick. I am quite sure that he was more worried about me, than I was, as he even took a week off work, as he wouldn’t or couldn’t leave me alone. The other day, Adam was looking for something in the coffee table draw, as he was scrabbling around in it’s overloaded contents, I spotted the instruction leaflets for my oxygen monitor. I thought he had thrown it away, after reading it. Clearly, he was still holding onto it, just in case, he has to put it on my hand and read the results, and clearly, it’s something that still worries him. I did think once before of keeping a chart just out of interest, but now I am wondering if the time has come, that not just for my curiosity, but for Adams future sanity, that such a chart, might just be a really simple and effective answer. I know from experience, especially from that dose of pneumonia, that I can tell him a million times, I’m fine, if his eyes can’t see that, he won’t settle. This might just be a way of giving him, some peace, and if adding on ten seconds to my morning meds routine, would do that alone, well it’s has to be worth it.

I think we, the chronically ill, often forget about what our partners see and what is going on in their heads. As I said, saying “I’m fine”, when “fine” is the one thing we never are, doesn’t mean anything to them. I have sought frequently for a way of convincing Adam, that I’m not going to keel over dead, in those five minutes it takes for him to go to the loo. It is one of my almost daily frustrations, especially at lunchtime, when he phones because the weather is too bad, for him to walk down the hill, to the house. Quite often our entire two-minute phone call is spent with me telling him, that I’m fine and trying to find a nice way of saying, I don’t need him to come home. There have also been numerous occasions when stopping him calling the doctor, has been just as hard. I have never really thought about it in depth, but that chart, might just in the future, be my answer. It also, might be the way of showing me, the pigheaded, “I’m never ill”, obstinate, single-minded, me, that, I actually do need to see a doctor, and now.

There is one fact that I can’t ignore and that is, that my health is getting worse, I’ve tried, trust me, I’ve tried. But it’s that very attitude, that has got me this far, but it is now the attitude, that makes Adams life harder. He knows all too well, that my left leg could be hanging off, with no more than a thread keeping it connected, and I would be asking him to fetch me a plaster. It works for me, but not for him. I have seen the worry on his face when I’m not doing too well, but it’s just my way to brush it off, as it’s my health and my problem. I guess that I had missed one important change, it’s no longer just my health, like everything else in my life, it’s now Adams as well. What I mean by that is. that I am now able to do less and less for myself, I have openly told Adam that I need help and why. He now monitors so much that I do and has taken over the rest of it, but I haven’t opened up a way for him to monitor just how well I am, other than to look at me. This would give him that opening, a way to be sure and to put his mind at rest, that nothing more serious is going on, that I’m keeping from him. After all, he doesn’t have x-ray vision.

 

Please read my blog from 2 years ago today – 25/02/2014 – I just don’t do

I really have to push myself today as I need a shower. I needed it yesterday as well but I just couldn’t find the strength inside me to get off my backside and sit in a small cubical. So OK it isn’t as simple as that, the big problem is the overall effort it takes and that horrid sensation of pin sharp water digging…..

 

 

 

 

 

Alternative Joy

It is hard for me to put myself in the place of a carer but I have tried often when I have seen the pain in Adams eyes, as though just looking at me is causing him pain and the tears are just below the surface. I don’t remember what the conversation was the other evening that brought that look to him, but I knew at that second he was in more pain than I was and it started me thinking.

I have often said that I felt it was harder to watch what is happening to your loved one than it is to actually live it, and that really is the truth. It is hard to find the words to use so that I can express this totally so bare with me as I work this through. Over the last few years were I have had to learn to deal with loosing my old life and adapting to one locked in a body that has little resemblance or little of the abilities we all take for granted, I have found there is something inside me that has guided me through the whole process. I know totally that in this I can not talk for others but I feel I have seen it in others so maybe many of us feel this way. The step by step lose of my health, my mobility and my body have been equally stepped by a feeling of peace, acceptance and understanding, explaining that is harder than it sounds. If I had been told that I had to stay in the house for a week, lets say 15 years ago I would have been climbing the walls in a couple of days, pacing round the house staring out the windows and looking for an escape route. Yes I was a normal human easily aggravated and determined to have my life my way. My pain tolerance was no different from others and having a tooth ache, would have sent me running to a dentist, seeking relief. I wasn’t a quick tempered person so that hasn’t changed much, but I was easily frustrated if I couldn’t do something, as I was used to succeeding at most things I tried, failure to me wasn’t an option. So I was a normal standard human, so yes if the rug had been pulled out from under me as that point and I had woken to find my life as it is now, I am 100% sure I wouldn’t have been able to cope, I would have been angry and unable to deal with the pain and totally unaccepting of sitting here day in day out with no escape, but that wasn’t what happened.

The process has been slow and has taken me gently to where I am now, everyday has been a slow step, not seen by others. Everyday I have changed just a little more and I have adjusted, I have learned. Adam like any carer can’t see those tiny changes, those tiny steps that allow me to continue to the next one, after the next one. To someone outside my body they would still be seeing themselves taking a huge crash to where I am now. I never took that huge crash, the biggest was the days I heard the words but by the point of my diagnosis I already had started the path of adjusting. When you as a viewer hear the diagnosis you feel a pain that I never did, as inside I already knew, I already had made adjustments and changes.

As time moved on yes you as a carer watch the pain and the difficulties, but you don’t see the strange things that the human brain dose, you don’t see the gift that it gives to someone who has to live it. Where it starts or how it happens I am not sure but there is a peace that starts to grow, I didn’t go looking for it, it appeared by itself. It is almost as though we have an alternative setting that kicks in and it carries you through the pain, gives you the escape route of sleep, removes the hard edges of everything by removing them and locking your memory to forget. Pain is something you handle when it happens and then you move on, quickly forgetting the last bout and strangely not fearing the fact it will all happen again. Frustrations have become short lived and there again you learn to find other ways. As time has gone on there is a magical change, one that changes us inside, one that allows us to accept each new thing as it comes, but I know it is hard for others to understand how this can be the case, but it is. I am at peace in a way I have never known before and I have seen that in many elderly people and others who like me have a chronic illness. Yes there are the bad day, the horrid days, the times when suddenly it all explodes and the world feels like it is out of control, but every time it happens the peace returns.

I know it is hard to watch someone you love struggling day after day, but look in there eyes when they are sat still, do you see anguish, do you see pain all the time, no. Take away the difficult short spells each day, the spells when the spasms stop me in pain, take away the difficulties of walking to the kitchen or back, the exhaustion and the confusion, over all of it only part of my day, the rest, the rest is peaceful, the rest is still very much living and very much worth having. I truly believe it is harder to watch all those things than they are to live, trust me when I say that the over riding emotions that life has given me is one of peace and happiness, the other things well they are the difficulties of life, just in a different more personal way.

As I said at the start I can’t talk for everyone but I am sure you have seen what I have written here in others because I have and I really do believe it is all part of being ill that we find an alternative joy to life and a peace that until you feel it is hard to understand.

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.