Words of help

Relationships, even when there is nothing wrong with either of you, can be tricky things. When one of you has a chronic illness, the level of trickiness just grows. It’s yet another thing that could with ease be destroyed in seconds. I have known and read many blogs from those whose illness was the final straw, and the relationship has ended, almost as soon as the diagnosis has been made, some don’t even make it that far. I know without a doubt, that I am extremely lucky in the fact that my husband hasn’t just as they say, “stood by me”, but he loves me as much, if not more now, than before. For both of us, our love just keeps growing, but that doesn’t mean that my health hasn’t and doesn’t cause us both problems. Clearly, I can’t speak for him, but if I can find those problems, then I’m sure he has done and does too. We wouldn’t be human if we didn’t, no one’s lives are a bed of roses, every second of the day.

The major issues that my illness brings with it to our marriage have all be discussed before, but I haven’t really spoken about the day to day ones. In fact, it was a line from yesterday’s post that made me realise that something was more than missing.

“When I do have to stand I find myself fighting so hard to stay upright, not because I’m scared of falling any longer, but because if I do, I know Adam is going to have just one more thing to worry about, the very thing my chair was supposed to take away.”

It’s those small worries, the things that happen daily where my first thought isn’t about me, but it’s about Adam, even when I might be the one in danger. If I weren’t ill, if I were living a normal everyday life, yes, Adam would enter my thoughts a lot, but he wouldn’t be there if I found myself tripping over a paving stone. Everything that happens to me, every change in my health that appears, I always think, “How will this affect Adam”. When your partner changes from just that and into your carer as well, everything changes. Even the tiniest thing in my life is now also in his, and I am very aware of that fact. Right now, yes, his life has changed dramatically and yes, he does a great deal for me, but he does still have his own life.

When you first become ill, little changes, it is nothing more than a factor to be thought about, but it really has little impact. Life goes on. You talk about, even plan a little but everything is distant, something that might or might not happen. It slowly picks up and in yourself, you know it is growing and slowly taking over, but you do everything to keep it as that, inside you. For me, I managed to push that right to the day I became housebound. Having only one working arm, many jobs became impossible. Adams first role as my carer had begun. Yes, before that he had taken on things like the heavier side of housework, but not having an arm, meant he had to prepare and bring meals and drinks to me. Directly caring for me. I as a person was impacting on his life. Those words “Adam, can you help me…..” never leave my lips without a great deal of thought. Not because do I believe for a second that he will say no, but because it contains so much more than a few words. Each time I ask for help, it’s yet another thing that I have pushed as far as I can, that I can’t do anymore, it’s an admission of my failing body. More than that, though, it’s an imposition on his life. It doesn’t matter if it is help for a one thing at that moment, or if it is something that will be that way forever, it’s still his time, his life.

Every day Adams work days start the same. Once showered and ready to go, I often wake with enough time to say goodbye, but either way, if I see him or not, he puts out a full glass of coke on my desk, as I am always up within the next 15 minutes. If I don’t see him them, he calls around 10 am, just to make sure that I’m OK. If the weather is good, he comes home for lunch, just spending about 25 minutes at home, before returning to walk all the way up the very steep hill to his work. If it’s raining or he can’t come home for any reason, he always phones me and we chat about nothing for ten minutes. In some ways, I prefer those days, not because I don’t see him, but he has then had a whole day away from the house. When Adam gets home from work, after doing a full day of running around the hospital, he starts by reading my mail. Mail I can no longer deal with, I miss read and tie myself in knots over, frequently they have left me in tears of frustration, occasionally fear and anger. It may only take him minutes, but they’re minutes that should be his. At 6:30, he helps me relocate from here to the settee, carrying all my stuff as I wheel myself there. He’s normally relaxing at that time, but so we can be together, I disturb him, making him stand up again to help me, taking two more minutes. At 7 pm he fetches me a gin and tonic, I can’t do it, as just like the glass in the morning, I’m incapable of carrying a full glass in my wheelchair, two more minutes, more time on his feet. At 8 pm we go together into the kitchen, where he supervises my medications. Sorting out not just my meds for that minute, but also for the next day. While I use my nebulizer, he also fills four small bottles with ginger beer, putting them back in the fridge so that during the day I can fetch them myself. He then empties the bin, sorts out the dishwasher, another fifteen minutes of organising, sorting out and preparing, doing all the things I once did. Then we’re free to return to the living room for the next hour, well that is unless I drink my coke too quickly, then he fetches me more. At 9 pm he helps me undress, prepare for and get into bed. His final nightly task is to sort out the washing. Then, at last, he can have his shower and fully relax. At the weekends, he does the general housework, assists me when showering to make sure I am actually dry and once a month spending four hours making my psyllium pancakes. At some point almost daily he has to run to my assistance, as I’ve dropped something or knocked something over. Then there are the accidents we try to pretend don’t happen, but they do happen when my bladder fails. All of this is the impact of my health so far on his daily life, the impact that anyone watching would see.

What they wouldn’t see, is the worry, the fear, and the frustration that comes with every single one of those days. Or the guilt that I feel every time I watch him having to do anything thing because of me. How every time he heads into the kitchen clutching my empty glass to fill it again, I watch him with half hung head and eyes that feel nothing but sorrow, for once more I’ve destroyed his peace and his rest. If he chances on seeing it, he tells me “Stop being so stupid, that’s what I’m here for”, and I always see the love in his eyes. I have burdened him with so much more to do than any individual should be expected to, and the worst thing is, this is just the start.

I know from what he says, the way he always checks when he’s not here, that he constantly worries about me. I know by the way that he appears in the middle of the night in the kitchen, once I’ve been to the loo, just to check that I’m OK, that even at night he doesn’t rest peacefully, just in case he is needed. I know by the way he doesn’t want to go to work, if I seem just a little too unsteady, too not awake for his liking, that to him, I come way above his work. I know he never stops worrying about me, hardly for a single second of a single hour. If the tables were turned would I be any different, well I like to think not, but none of us know, any more than we did before we became ill, how we can deal with anything like this.

Not once, have I asked him to do anything for me until, I have pushed it far past the point where I am no longer capable, but that doesn’t remove the guilt. The pressures of being chronically ill never end, not just for the carer but also for the patient. Don’t let anyone ever think that being waited on by the person you love is a pleasure, it’s not, it’s far from that. The list of things that lie ahead, that I won’t be able to do is vast, and I will anguish over every single one of them, and he will fuss, and pamper and tell me off for being so stupid, for waiting so long before asking for help. We have all the love in the world, but the one thing we don’t have is time and if anyone is looking for the true cruelty of illness on any relationship, it’s that.

 

Please read my blog from 2 years ago today – 07/04/2014 – Perfection?

I am starting with a warning, a warning to any woman who become disabled and her husband takes over the housework, make sure you go around your home and go over how to clean every single thing that is in your home, I do mean EVERYTHING, miss nothing and be precise. Adam decided without saying anything to me yesterday evening to wash two art nouveau style hanger that are in our hallway. Both where beautiful and both were made to look like ivory and gold, but in reality are made of some kind of ivory coloured compound, painted in what I would call old gold. I bought them not that long after we moved here and for what they are made of they weren’t cheap but they were perfect for my chosen positions for them. With out house…..

Independent or Supported

For many of you out there this is the first day of normality after the holiday, here in Scotland there is still one more, today, so as you might guess I have my snoring companion for one more day. I had a phone call from my friend Jake last night, at first I thought it was just to say happy New Year, but those words were rapidly followed by “So which day do the decorations have to be down by?”. He is only 7 years younger than me but at times the questions he asks makes him seem much younger. I had actually been sitting watching Eastenders when the phone rang, by the time I crossed the room to pick it up, it had shifted to answerphone, I still picked it up but I couldn’t see the number on the display screen because it had switched over. I was sure that I actually saw Teressa’s name on the screen before it vanished, so I found her number and called, she seemed a little surprised to here from me, especially as it wasn’t her that called. We spoke for a few minutes but as we had talked last week for a long chat, we wished each other a happy New Year and I returned to trying to work out who called. Our phone like almost all these days has a display, but I couldn’t get it to show what the last number was that called, I pressed all the different buttons but none gave me a number that I could be sure had been the last to phone here. Adam was in the kitchen washing some glasses, so I took it to him feeling silly as I was beaten by phone, another to add to my list of, I just can’t do. It took him less than a second to find out it was Jake and I left the kitchen as sheepish as I went in.

Tasks like that are so simple but when your brain won’t answer your questions, your eyesight fuzzes up what is there to be seen, and your fingers press a collection of buttons and not just one, what chance do you have? I hate to think what might happen if you dumped me in a lift or in front of a bank machine, I think others would quickly have enough of me and just shove me to the side. It really are those sort of everyday simple tasks that I learned long ago that it was best not to even try, the results are all clearer in my mind than the processes are. Joking a side though, it is those simple things that quickly pile in on us and make it clear you just wouldn’t be able to manage the world out there by yourself. Living isn’t just about being pain free, it is about being able to be independent in the wider world, I have often wondered where I would be now if it wasn’t for Adam, he long ago took over that side of my life, in the truest meaning of the world I haven’t been independent for years. If I was on my own, I would need so many helpers just to get through a normal week that it would be a nightmare with carers coming and with the best will in the world not doing what I really want doing in the way I want it done. It is all very well government going on about independent living, it just isn’t possible for everyone and it probably extremely dangerous for many.

I expect that most people see independence meaning the big things, but in reality independence is all the little things. The things that most people don’t even think about as they do them daily, how do you open a door when you can’t remember which way a key turns or you can’t even get the key in the lock. When you find yourself not knowing where a dirty plate should go as you know it isn’t the sink, but can’t remember buying the dishwasher. Independence means not having someone follow your every move, ready to jump up if you fall. It means not being left feeling as though you have become the stupidest person to ever live, because you can’t do today, what yesterday would have been simple and no matter how much help you have, you will never be independent again. I can’t exist for any length of time now without someone there to help me, be it with a phone, a door or a thought process. I’m luck as the person is someone I know and I love, and also knows me and loves me, I have the support I need and also accept that I need it. I really don’t see how any government can replace what I have, maybe they should stop calling it independent living and call it supported living instead, I don’t think it would sound so much like a threat and more like a gift.

Three in a bed

I’m fighting to stay awake today, I have lost count of the number of time that have found myself propping my head on my fist, with my eyes closing or closed when I notice, I am once more trying to sleep. Last night I managed to sit up to 10pm with little desire to head of to bed and I was delighted to have stayed that extra hour as it gave me more time with Adam, but it could be that I stayed too long even thought I wanted to and thought I could. It is always hard to get things like that just right, I bet that right this minute there are thousands of people in the UK who have done and now feel exactly what I did.

When you are fit and healthy relationships can be difficult to get right, when there is a third entente in between you, it is harder still. It can feel that way a lot of the time, MS really is the third person in between us all the time. In the early days it was the tiredness that often meant I wasn’t up to going out or round to a friends house, slowly my trips out for anything other than doctors and work diminished to zero. All the trips to a restaurant or the pictures just ended, our time together was just that, together the three of us sat day in day out in front of the TV not wanting to talk about anything other than what we were watching. I didn’t feel that I could tell Adam how I was feeling, as I didn’t what to burden him with anymore than what he had to handle. I think that both of us tried to pretend that my MS wasn’t destroying anything but it was and we had to admit it eventually. I think it was about 2 years after my diagnosis that I was suddenly not going downwards slowly it has hurtling me straight into the ground. My brain was all over the place, the pain was out of control and I was in a wheelchair. Talking was hard at all times, and even my Neuro could see what was happening without me talking. I truly believe that if at that point I hadn’t been put onto the Mitoxantrone treatment, well I wouldn’t be writing that was for sure.

Before the treatment started I hardly knew how to walk and every time we had a cuddle or curled up together, the pain sky rocketed. Adam had become scared of causing me pain and to be honest so was I, we both started to back away from each other, as close contact just wasn’t possible. I don’t remember us actually talking about it at first and I guess that it was about 3 or 4 months before we really spoke about why we had no sex life any longer. We had only been married 4 years and up to that point things had be great, then suddenly it all stopped. Adam said that he was scared of causing me anymore pain, something that I totally understand and totally agreed with as yes, that was often the result, but for me on top of that, I just didn’t and still don’t have the slightest desire to have sex at all now. I think at first I was worried about pain and fatigue, but I know by the time we talked it had moved on. It may seem a little odd that two people who were and are attracted to each other, decided to not seek help, but to just accept that was the way things were. It wasn’t even a long or difficult decision for me because as I said my sex drive has totally vanished and unless someone put the words into my head, I don’t actually ever even think about it any longer.

Death of libido in men with MS is fairly common, but not inevitable and most I know ask for help, I did once ask my Neuro for help, but it took 3 months for an appointment with one of the MS Nurses by when I had settled back into not being bothered, so I took it no further. I had asked for help not for myself but for Adam’s sake, I was worried that he would leave me because of it and that was my only reason, and as he said that wasn’t a reason. Now I know again as it was in 2003 that I don’t have the energy, if I can’t walk across the room anything else seems impossible to manage, my falling asleep after the first 5 minutes, might just kill the moment.

I can’t speak for Adam or anyone else who is in my position, I can only talk about what I know is the truth for me. I love Adam dearly and his willingness to accept that that side or our relationship is over, without it being the end of us, has made me love him even more, as I am not too sure how many other husbands would be happy with this situation. Sitting here thinking about a sexual encounter, still gets no other reaction in me other than, please no, the same reaction that I feel when I discover I have to stand up again as I have forgotten something. Yet on the opposite side, I strive to stay awake, just to have a few more minutes with him, love is not an issue.

I actually expect that there are many many couples who due to one of them being ill, no longer share the closeness that sex brings. Getting figures I think might be hard as I suspect that like us, they don’t see a reason to talk about it, I am only talking about it here and now because I became aware it was something I hadn’t spoken about at all, and I suspected that it is an issue to many are facing or may face in the future. In Britain sex is still a subject that people don’t talk about freely, so finding someone else in the same position is even harder. We all therefore deal with it in our own way, quietly and with good old British reserve. I can imagine with ease this being behind or at least part of the numerous divorces that happen when chronic illness moves in as the third person in a marriage, and more than any of the other health problems how you deal with it, and what the outcome is, depends on your own personal views and feelings. We love each other and we both accept that just like many other things, sex is just another victim of my MS, and as long as you do love each other, does it really matter that much?

Rebuilding the Cocoon?

Friday seems to have taken a lot out of me, it is always the knock on that is more the issue than how I feel at the time. MS seems to let you cope, then kick you repeatably for even having tried to. I suppose it will all take a few days to settle, my routine didn’t exist last week and there were quite simply too many changes to deal with, I know I will get there but these are those hidden moments, the bits that others don’t see. I don’t think my gut liked the treatment at all, I am finding it now rather painful in strange places and clearly not happy with the food I have been putting into it. I can point to the exact positions where my breakfast, dinner and tea are, and I can tell you the pain and nausea is clear, I suppose part of it will be the ruff process of pushing the scope, some bruising and so on I expect, but most is empty space syndrome, gaps of air and crashing food.

I spent all of yesterday feeling half here and half longing to be anywhere else, especially asleep. I did at least get my afternoon nap and one again landed up in bed before 9pm, so yes I have just caught up with “Casualty”, I don’t understand either my love for hospital dramas either, I suspect it is because a lot of the time I actually know what they are talking about and sometimes even manage to diagnose the patient before the Doctors do, that I have to admit is fun, a bit like a who-dun-it. I have always enjoyed working things out and I am sure it is also the reason I can’t stand slapstick humor, what is funny about something you knew before it happened, actually happens, sorry I don’t get that at all.

I can see it is going to take me a while to recover from all of the last week, there are just so many parts to it that my body is still catching up. I know everyone seems to think that I should have a great desire to get out of here, but when my venturing outside causes so much stress, why would I want to go anywhere. I really do wish now that I hadn’t asked for help at all, I would be in a much better position if I hadn’t actually. If I had just got on with it and said OK this is the way my body works now and I have to work it all out myself, maybe just maybe I might have it all under-control with out any stress and without people in my home annoying me, and without yet others forcing me out of it. I managed fine for five and a half years then I asked the NHS to help me and it has been nothing but upsetting from that point on. Isolation was a much happier place believe me, everything just ticked along, day after day and I ticked along with it, I would love to have that back, life has been distressing since I lost it. It is strange how help can land up being anything but.

I suspect that when I do go back to the Gastro. department it will be once they have the results of the biopsies, 4 to 6 weeks time and I expect that guess what they will blame it on my MS, as I did right back at the start in March or April. My gut has simply stopped pushing food through, what I wanted then and would like now is a solution, I just hope they are now out of tests and are happy to just do what I asked and help me make it work well enough to be healthy and to not mess myself daily, I don’t think that I was asking that much really. Before that though I have another appointment this month to go to the Pain Clinic after the mess on Friday I am looking forward to this less and less as my appointment is for 5:45, I know the shifts change at 5 so this might not be a smooth system either. There is a real feeling at this minute of my not wanting to go, I suppose that is understandable and a risk I once again have to take, as I am sure if my pain was under control I would feel better in myself, but I can’t put into words strongly enough that I really don’t want to leave the house again if I can just find a way to pull myself back into my cocoon and lock them all outside it for good. Possibly a silly thing to do I know, but in my heart that is really what I want.

Crossing a milestone

After yesterdays conversation with the bank I had to make another call and that was to the Doctors about the pain control issue that might occur on Thursday. My own doctor is on holiday so I had to talk to the other partner, I was ready for a struggle but to my total surprise I had no problems at all, there is a prescription on it’s way to me right now for liquid morphine. I am to take my meds as normal but she agreed that there was a real possibility that I would need more pain control as my normal meds might well be flushed out of my body. It was when I came off the phone I found myself feeling really strange about what had just happened. I had gone into the call ready for a fight to get anything, but there wasn’t a second of argument in the whole call, she said yes straight away and was totally helpful. I found it rather upsetting. I wasn’t looking for a fight but it was the fact that she didn’t hesitate and offered a fast action morphine without any thought about it, it was conformation that I didn’t need, I am really ill.

I know that sounds silly but we all kid ourselves when it comes to our own health and someone jumping in and offering me a high level painkilling drug in a form not normally handed out with ease, was like saying your are incredibly ill and you need this now! I like everyone, ill or healthy, live in our own little bubble that is our normality, if my bubble had a label on it saying incredibly ill, I would be acting that way and as you know I don’t. My bubble says, your fine get on with as much life as you can, my bubble was popped, by kindness and honesty! It is not the first time the medics have taken a sharp needle to my health bubble but just as in the past it is difficult to handle because of the past. I spent so many years trying to get a doctor, any doctor, to listen and to understand that I was ill and all dismissed me as a hypochondriac. To find myself being handed without even a seconds hesitation what I need, is still hard to accept and strange to find that doctors don’t only believe me, but are now quick to help me.

If you are an able bodied healthy person you might find my reaction a little odd but it is yet another point in my learning to live this way. I have just had someone confirm I am really ill, when I feel no worse at this second than I did when they said it, and I am fine. It is another milestone, like the day I was told I had to have a wheelchair, a milestone saying you are more ill, than you want to admit. I always thought that people who would be given morphine were near deaths door, then I was given it, but in very controlled measures, now I have been given it with a take as much as you need to get through. When I spoke to Adam about it last night he said the obvious, I am not the patient who calls them every few days demanding things I don’t need. He is right, but I never have been that patient and I have had that treatment. I feel right at this second that some how the NHS are turning my life upside down, all the doctors are listening and they are all trying to help, it all rather odd and difficult to get my head round. What next?