Feeling like a burden

I feel bad for not answering a tweet I received a few minutes ago, I know I should have, but it was one of those statements that I knew was impossible to answer in just 140 characters, or even 4 or 5 times that. It was in response to one of my tweets I send out to bring them to my blog and they had simply added another line to one, what they added said “So dang true. Makes you feel like a burden too!!”I doubt there is a single one of us who hasn’t felt that way at some point and it doesn’t matter how many times those who are caring for us tell us that we aren’t a burden in any way, it doesn’t stop us from feeling it, often very deeply. I would be surprised that other than the laziest people in the world, once chronically ill doesn’t feel like a burden at some point. For me the first time I really felt it was when I had to start handing over jobs that I felt were mine, I don’t know how Adam saw them, but they were things that I just did, as for all my life had done them. I am sure that he did help at times before, but when I could no longer manage to stand long enough and didn’t have the energy any longer to do the housework, I had to ask him to take it over. For the first few months, I felt so guilty every time he did anything of my personal housework list, just getting the hoover out of the cupboard was enough to start that feeling of guilt. I was already housebound by this point, so although I was still working from home and bringing home a good wage, I still had it in my head that I was at home all the time, so surely I could manage it. I think that’s where the guilt comes in, we are just sat there, they are going out to work and then coming home, having to look after the house and run around fetching things for us. The longer you let yourself feel that guilt, the bigger that sense of burden grows, it is just like depression in that respect, let it take hold and it will take over every part of your life before you know it, mix it with depression and I don’t even want to try imagining what it does to you then.

Whenever I have spoken to Adam about it, he gives me what now seems to be his stock answer, “I’m your husband and it is my job to look after you”, the more I tried to talk to him the more frustrated he got with me. I think it was his frustration that got to me, I know that winding him up is never a really good idea, he is one of life’s moody people, push too hard and he starts to grumble just under his breath and huff and puff as he goes on about what he is doing, so I would leave it and let him get on with it. It was a slow learning curve for me, but I discovered the obvious, he didn’t see it as a burden, he just saw it as the way life now is and what he couldn’t deal with was me making a fuss about it. He also prefers to see me sat still, as he is also a worrier, his permanent worry is that I will fall and be really hurt, so the more I stay still, the happier he is. It has taken us a few years to come to an understanding, one developed through trial and error on both sides, I now understand that I can ask without guilt if I need something done for me and he knows that he has to give me some freedom to live as he can’t do everything for me. He says that I am most pig headed person he has ever met and in some ways he is right, I won’t give in to doing nothing before I actually have no other choice, but in other ways he is wrong, a pig-headed person doesn’t know what guilt is and doesn’t take into account other peoples feelings on any subject, they just do what they want.

We all feel like we are a burden at times, but to actually be a burden whoever is caring for you must feel forced into looking after you. Adam isn’t forced in any way what so ever. I might feel as though he is as if I were well, he wouldn’t have to do a lot of things he now has to do for me, but he doesn’t hold a grudge against me, he does against my PRMS and that is a very different thing, but me, no. He doesn’t have to be pushed into doing the housework, he might huff and puff about it, but he huffs and puffs about a lot of things, from his computer not being fast enough, to the fact he left something in another room and has to go and fetch it, everyone, grumbles about things that aren’t their personal idea of perfection. Even before I found myself asking him to do more and more for me, he wanted a maid, a cook and, in fact, the whole range of household staff and still does, including a masseur, but that’s just part of his lottery winner world. Does he really grudge doing things for me, not at all.

As time is going on there are more and more things that I have to hand over to him and ask him to take on, he is now my memory for everything from taking my meds to having a shower. Even if he is out and not actually able to come home and see it’s all done, he phones to ensure everything is running to routine as he knows just how important it is. He didn’t hesitate when I found myself totally unable to deal with the mail, or with people on the phone, he does all that for me, as I just get distressed and confused. I know and so does he, that what he does for me now is just scraping the surface, as time goes on he will have to do more and more and we have talked about it. I hate the idea that one day he will be caring for someone who is bedbound, feeding, washing and cleaning up after me, but he doesn’t seem phased by looking after me like that, he just says that what needs to be done will be done. No one wants to be on either side of that equation, but that is life, we don’t want to slowly disintegrate nor do we want to watch our partners disintegrate, becuase it hurts in a way that is beyond words. But it isn’t about want, it’s about life and that is how most life ends, we are just going to have to go through it a lot sooner than we ever thought.

There is one question that we all have to ask ourselves when we are feeling like a burden, “Why are they doing this for us?” No one has too, they could pack their stuff and leave without even saying goodbye if that was how they were inclined, but they don’t, they’re still here. They are still with us, happy to help, happy to care for us because of one thing, they love us, love doesn’t know that word burden, it doesn’t know it and it doesn’t understand it. It is love that walks back and forward to the kitchen for us, love that does the housework, changes the bed sheet, washes the dishes and runs to the shops because we can’t do it ourselves, it is love that keeps them with us. We’re not a burden because they love us, just as would have been the situation if we had found ourselves in their shoes, out of love, we would have cared for them. No one is a burden, not if there is love.

Read my blog from 2 years ago today – 12/05/13 – A slow painful day

Dragging my heels isn’t a trait that I usually would put into a description of myself, but yesterday’s strange feeling at the start of the day flourished into an inability to keep up with anything. I spent most of the day simply happy like a 4-year-old to find things to fiddle with, rather than doing what needed to be done. It is amazing the things that you can find just there in front of you, things that suddenly seem……..

Surviving love

Life can be a real strain at times when you are living with a mind that seems to have a perverse joy in tripping you up all the time. I am in one of those phases where I am spending more and more time simply frustrated with myself because I just can’t follow through with a simple thread without getting wound up in it. It doesn’t matter if it is just in conversation or finding myself unable to complete a task, I keep finding myself unable to finish what I have started. Adam has always been the type of person who doesn’t like things being pointed out to him, which with the age gap and difference in life experiences often is very difficult for me not to do, when you are comfortable with the person you are talking to it is especially hard to be guarded all the time and not simply let your mind run your mouth. There have always been and I suspect always will be times when tact has gone out the window and I hear what I am saying at the same second he does. Having been a manager and with a reasonable understanding of different management styles and personalities, I often find myself trying to help him with situations at work where he has become wound up by the behaviour of his manager or someone he is working with and I do my best to explain what I believe their thinking and actions are really about, whilst trying to calm him down and not make any of my guidance sound patronising. Over the last few months, his stress levels with work have been through the roof, something that if you read back over the last month you will see clearly the knock-on effects. In the last couple of weeks, everything has been rapidly improving because we have spent long periods talking and going over both our lives together and his work situation. It is because he is now so much calmer and dealing with thing so much better that I actually feel able at last to write about this as I know if I had before that he would have read it then bottled it all up again out of fear of putting stress onto me.

When your mind isn’t quite what it was and you know that without any malice or even any reason behind it you can become wound up, not quite shouting but forceful in your speech without hearing, feeling or even comprehending that it is happening until much later, being a confidante, is hard, incredibly hard. It meant that for the first couple of week when we seemed to do nothing but talk, I had to put a lot of my energy into monitoring myself, whilst listening and responding with thought to what had actually been said, rather than just letting my answers flow. We needed to listen to each other, something I think we both had not really been doing for a while. When life centres around what my health is doing at that moment, both of us as people have at times, vanished and us as a couple, well we didn’t always exist. Like millions of couples out there we were coasting and for me that meant life was easy, but for Adam it was stressing him even more, as he rightfully felt that everything was on his shoulders. It wasn’t the way it was planned or even thought about, but it was what happened because I was so caught up inside my illness and he was doing what he thought he should. It is hard for me to write for Adam and I don’t intend to, this is really for all those husbands and wives who are ill and find themselves feeling an odd combination of guilt, reliance and love for the person who they adore, but can’t show it in the ways they used to.

There were a couple of occasions recently when simply because I had reached the point of exhaustion, that I knew my tone was scalding and judgmental, neither were the desired effect but they happened and I later had to apologise only to have Adam say that he knows it’s not me, as if it were, well he would have been gone long ago. It doesn’t matter how much they understand what we do and say thing that aren’t really in our control or that they know without a doubt that we aren’t that snappy, rude or demanding person who just sits there doing nothing, I realised in the last few weeks, that I had stopped saying sorry. Somewhere along the line, probably because Adam kept telling me I didn’t need to apologise, I stopped. It wasn’t until we both stepped back and took a long hard look at us, each other and ourselves that I noticed it, I had allowed my disabilities to take over, it rather than me, was living here with the person who did everything for it. Other than when he brought me something, I couldn’t remember the last time I thanked him for doing the housework for me, or the washing or any of the other things he now does that used to be my jobs. I know that just like the “sorries”, he told me to stop thanking him and just like the “sorries”, I did. I had also stopped even trying to not snap, or to be abrasive, what my brain did, I did and I carried on without doing anything about it. Between the three of us, me, my illness and him, we had pushed each other away and let my illness win and it happened without either of us even seeing it.

It is incredibly difficult to live all the time trying to control the uncontrollable, but in the last few weeks, I have been doing my best to do just that. I haven’t achieved my goal of being human with an illness, rather than just the illness all the time, but I have realized that I have to keep doing that for as long as I can, not being easy isn’t an excuse, it’s a cop out. Yes, I have to still stick to routines and I have to keep my world as stress free as I can, but that can be done and still remembering that my carer is also my husband and he has every human emotion and feeling that he always had, even if I no longer do. Temporal lobe damage is a fact, it means I will never be the person I was or able to do the things I once did, but I still have enough control to be able to show I care more than it might appear that I do. It is so easy once you are this ill, to just slip into routines that you don’t intend and to not notice the importance of the small things that lets other know just how grateful and appreciative of everything that they do for us. I have already lost control of many of my emotions, I react in ways that I wouldn’t have done years ago and I will never have that control back, but I do have the ability to say sorry even if I am not allowed to use the word itself and we all do.

When your mind feels as though it is no longer yours, making mistakes in simple social responses and reactions will happen and we can’t change that. When your body is always in pain and as useless as a burst balloon, it will let you down and embarrass you, it will mean that you can’t do much of anything of any use to anyone and we can’t change that either. But we can remember for as long as we can that the people around us, especially those who care about us are humans with human feelings and we have to remember to treat them as such, for as much of and for as long as we can. To those who are our carers, please don’t bottle things up, we are fragile but we don’t break with the slightest knock, talk to us if we annoy you, hurt you or put more on you than you can really handle alone. Love can be shown in a million ways, but when it is hidden behind illness, from either side of that barrier, it means we have to try that bit harder to still be people and to make sure our love is felt, as it is the one thing that really can and does make a difference to our lives.


Please read my blog from 2 years ago today – 27/02/13 – Which are worst 

The appointment for endoscope has arrived, it is on the 14th of next month. At least with this one there is now need to drink huge amounts of nasty cleaner, I just have to not eat for 4hrs, which I know I can do with ease. Unfortunately it is an afternoon appointment again……….

Is it something else?

I was driven to bed last night by a combination of tiredness and pain. Not the pain that wants me to scream, but that long drawn out aches that there is no relief from. As often happens I was quite comfy sat on the settee for the first hour, then just after 8pm, first my left foot start to hurt around the outer side around my ankle that spread over the front of my foot, then my intercostal muscles and diaphragm joined in and finally my left arm. I have always found that no matter how traumatic severe pain is, it is the constant aches that seem to wear me down especially in the evenings when my energy levels are low. To be totally honest, I would swap it any day for a short-lived strong spasm as once they let go that is it over other than the shadow that remains for a while, almost like a threat that it could return any second, but it is normally just a threat and it’s over with. As I always do I sat there to 9pm, determined that I wasn’t going to vanish to bed earlier than required as even though Adam isn’t at work just now, I still love that time we spend together just sat watching TV. It was my arm again that woke me this morning, but to my surprise
Adam wasn’t in bed, it turned out that he had just fallen asleep on the settee and actually woke not that long after I did. I heard him just after 6:30 am as he tried to sneak into the bedroom, even though I did have good earplugs in place. There is something about the sound that the bedroom door makes as it moves over the carpet that I am totally turned into, asleep or awake, this morning I was already awake and glad that he was coming to bed as it meant I could get up.

It can be hard to work out when something started in my life and if it is part of my PRMS or not, the doctors think that my first symptoms were back when I was 21, but that is a bit of a guess on all sides, but it feels like my left side has always been the side of my body that has been affected worse than my right. Every symptom I have had has always appeared first on my left side and it is always the side where pains and aches are more intense, if it were equal to my right side, well life would be a breeze, without a doubt I wouldn’t have become housebound when I did. It was the complete death of my left arm that lasted nearly a year, followed by the fact it has never regained its true strength, that forced me to stop going out. Without out it using my manual wheelchair was impossible and stopped me going out alone, then the rest gave in and made going out totally impossible. I honestly think if it hadn’t been for my arm, I would have been able to manage the outside world for another couple of years, my left side has a lot to answer for. I know without asking that every time I say my left arm is hurting that Adam starts to worry that I am having a heart attack, it is a fear that I totally understand as that is how he lost his father when he was just 10. I have to be honest in saying that if I were, well there is a huge chance that I would just be sitting there trying to ignore the pain and telling the world that it is just my PRMS. Between my arm and the pain I constantly get in my chest, well who knows, but if I were to go to the hospital everytime I felt it, well I would be living in A&E, it is yet another one of those things that I just honestly don’t think I would be able to tell the difference.

Clearly I have thought about this, as I wouldn’t have written that paragraph if I hadn’t, I guess it is just one of those things that once your health is shot, well you just don’t know what is what. On top of that, well doctors see the letters PRMS in my medical records and instantly that is the reason for everything else, even my COPD has an element of MS connected to it. I know without a doubt that it is one of the things that plays on Adams mind, I’m not stupid, but it is unfortunately, the way life is and no matter what I do, I can’t stop him worrying. I am sure that there are couples around the world who live just as we are, who have the same worries and the same problems and that there is no right or wrong, but I just wish that there was. I don’t know how it is that I can just accept things the way they are, that I don’t fear the worst at every twist or turn, but I am incredibly at ease with it all, as I know there is nothing that I can do change it. In the years to come, I know without one second’s thought that there will by other symptoms that will appear, symptoms that I am sure will mimic other conditions and we will have all the stress of that to bear as well, but what can we do about it? PRMS is a condition that affects the nervous system and it can do whatever it wants to any nerve in the entire body, that basically means that anything can happen.

None of us, well or ill, knows with any certainty what will happen in the next second, far less what will happen in the next year, but the ability to mimic, to make you think the unthinkable constantly and that is going to get to anyone, even me occasionally. So OK I am officially dieing, but that doesn’t mean today, nor does it mean they have got the timeline right, eight years to go, well it could actually be a lot longer.


Please read my blog from 2 years ago today – 30/01/13 – Sorting out the clinic

Evenings for me seem to have settled into a pattern that I don’t like but seem to be stuck with, but they are really strange. What I am finding so hard is that when Adam comes home from work until about 8pm I feel totally awake and happy to be sitting chatting and watching TV together, then something happens…..

It’s good to cuddle

I suspect that it doesn’t matter if you are ill or not for us all to recognise the patterns that most relationships follow, starting with not being able to keep your hands off the other, through to a much more mellow and laid back approach to not just sex, but our lives together. Back in 2012 I wrote a post where I was honest about what had happened to our lives physically, sex has not been part of or lives not for 12 years, something I am sure there are some out there who couldn’t even imagine, well neither could I, but PRMS and MS can find us living lives we never expected.

Until my PRMS changed everything I was what most people describe as a tactile person, I was never happier than just being curled up on the settee cuddling into Adam. I remember driving him mad as I couldn’t even hold his hand without constantly caressing his skin by gently rubbing my thumb over his, i did it without thought, he just couldn’t stand it for too long and would either clamp my thumb to keep it still, or pull his hand away. When sex becomes something you have no interest in and to be honest in some ways are scared off as you know your body doesn’t need an excuse to cause pain or jump into a flare, nor do you have the energy to even spare, well you start to avoid anything that might have the slightest possibility of even the thought appearing. Slowly I stopped curling up on the settee, partly quite honestly as it hurt, anything other than the most basic position that my body can’t object to is preferable over anything that might annoy, but mainly I was keeping my distance. Adam equally knew that pain was a huge issue for me back then, they were still trying to get my medications correct and I honestly can’t remember at that time even considering it anyway near under control and he was really scared of causing me pain. I don’t remember it being a sudden change, more something that just happened, we slowly started both keeping our distance with my PRMS firmly sat between us, ensuring that we never became close again. In the morning or anytime he was leaving the house he would give me a kiss and whenever I went into the bedroom to sleep, we would briefly cuddle and give each other a kiss, that was the extent of our physical contact on any day. If either of us were upset about something, from the minor to the major, we would lift the unwritten no contact rule, permitting an extra hug here or there, oddly almost always standing, but once the trauma was over everything slipped right back into normal. That was exactly where I thought we were just now, that our talking and discussing and reassurance of each other over the last few days was just another repeat of making things right in the minute, but something changed yesterday.

I don’t know why but I had hit a point in what I was doing on my PC that I didn’t really have anything to do, so I closed it down and joined him on the settee, he was about to go out but I just wanted to be sure he was OK. Somehow we landed up with him lying on the settee with his head on my lap and me stroking his hair, he was holding me tightly and despite the slight lift in my pain levels it felt right, for the first time in years it didn’t enter my head that I had to keep my distance, just in case. I realised later that was because I knew he was going out quite soon, but it showed me something that I had also been pushing away, the need to just be close to the person I love. You tell yourself so many things that don’t make sense and somehow force them into make some kind of twisted logic just to get yourself through everyday life and as time goes on, you even start to believe the story you’ve embellished. I have been blowing all contact between us out of the water because of a few times where the pain of just being held, was too much to bare. In my mind it had become a true fear that anything other than the lightest cuddle or the slightest squeeze of my hand was out of the question, not to even be tried as pain was the only possible outcome, when in fact it probably isn’t now that my drugs have my pain under control a lot of the time. Adam had given up sleeping in our bed, as he feared waking me because he has seen over and over what a couple of bad nights sleep does to me, but bad nights still happen even when he sleeps on the settee as he has done now for years and along with his fear of causing me pain, well we landed up avoiding each other in anything than the slightest physical contact.

If we didn’t love each other so much, our marriage wouldn’t have survived half the things that it has and if there is a single person out there that doubted us, well how much more proof do you need. Chronic illness will push you to your limits and beyond and if you can survive that, not just the illness, you can I am now sure survive anything. We are now in a position to rebuild our relationship from what has to be one of the most solid bases possible. I will always be in pain, I will always have days when I just need to sleep and even talking has to stop as my brain is fried, we can’t change that, but we can change everything that goes around it and make things better. There are still two things that stand out to me as beyond coincidence but that is what they are, firstly my comment of just over a week ago that the finer points of our relationships where missing from what I had written to date and the fact I sorted out everything I do online and trimmed two hours off every day, giving me much needed time to spend just talking, both done before our chat last Sunday that burst the dam.

This week has been exhausting and painful at times, but it has also been incredibly uplifting and refreshing, to not feel like the only true communication beyond everyday chatter was done through my blog, to actually talk about everything and anything we have thought of concerning ourselves as individuals and as a couple. I thought my illness had stolen far more than what it was doing to me and wrote about, it hadn’t, it was Adam and I out of misplaced assumptions and fears that had done that one all on our own.


Please read my blog from 2 years ago today – 24/01/13 – The measurement of now. 

Thanks to the responses I had to yesterday’s post, which I thank you all for, I have found one constant string from those who are chronically ill, that the thing we all hear constantly is, sorry we can do nothing. I know I am in contact with what is just a tiny sector of people, but if what I am seeing is the bigger picture as well, it is clear that millions must be wasted by hospitals every year………

The first steps forwards

Well, I broke the ice yesterday so here we go. I doubt if it is just me, but I find looking backwards on life not always the easiest thing to do, not because of the pain that lies there, which undoubtedly there is, but because I can’t always remember the finer points just the overall general sensation of how my emotions were at the time. I also know that it isn’t just the looking back just now that is hard, it is the fact that Adam and I have gone over so many things that we didn’t deal with at the right time, that I am both raw and extremely tired, oddly for once though it feels like a good tired, one that I actually deserve to feel. The pair of us both thought that we had sorted everything out in our own minds and with each other just what the real impact of my illness meant. What I hadn’t taken into account was that he was just trying to be strong for me, so that I felt able to get on with what was happening to me, without worrying about him. I fear that right around the world there are couples doing exactly the same thing, but it leaves me feeling a bit guilty, not what he intended I know, but I can’t help it as I feel that I really should have put the pieces together and seen the truth much sooner.

As long as I thought that I he was fine, I was content to push on with the tests and treatment that had to be done. I couldn’t possibly count the number of times that he asked if I wanted him to come with me, I always said no, not realising that what he was really saying was he wanted to come with me. I just couldn’t see the point in both of us having our day disrupted by sitting in a hospital waiting for a doctor. Even when I was having chemo, I pushed him off to his work and wouldn’t let him fuss over me, I thought that as long as he could see that I was fine and I wasn’t falling to pieces, he would be fine, just as he appeared to be. Both of us were playing games, putting on a front of calm understanding and total ability to take whatever the world threw at us. I now know that the act was far bigger on his side than mine and has only appeared in his constant fussing about things, like the shopping arriving and him having to come home at lunchtime to put it away, just in case I tripped over one of the bags lying in the hall, or his almost daily request to let him help me. I doubt I need to explain to anyone who has read for a while, but I am a strongly independent person and he is a deeply caring and loving one, the circle that appeared was inevitable really, simply because we are two different people who fell into a rut and stayed there trying to be the other.

The really stupid thing is we have been here, well no not here, we have been no way even close to this point in the past, but we have had points where some of this came out and was buried all to soon after with just a sticking plaster in place to heal it. Times when a catalyst would appear, usually some stupid heated discussion that caused a comment that couldn’t be taken back and everything else just followed. In total honesty, we aren’t the type of couple who argue, maybe we should, as then we might not play these stupid games and stop moving through life believing the other is perfectly alright. Anyway, this time is going to be different because firstly I am writing about it as it is happening, that means I am not dismissing one single second of it. I no longer have the strength to keep on playing games, I also have hit a point where I have been forced to slowly admit more and more that I am no longer the person I once was. I don’t have the strength to hold myself together any longer and I clearly don’t have the strength to hold Adams world together as well.

Talking is only the first step, despite both of us going to a MS support group when I was first diagnosed that didn’t work for either of us, it was more a collection of people who were vying for the slot of worst off, both in health and situation, no support at all, but Adam is going to try again. We are going to see if we can find a support group for carers as honestly the medical condition really doesn’t matter, what matters is a group of people who understand just what it means to partner chronic illness as that is the support he really needs and look into what other help is out there. I am going to also be more honest with him as to what is exactly happening to me and the help that I do need when I need it, whilst accepting more of his when it is offered and he is not going to bottle things up because he feels I have enough to deal with.

Knowing the right thing to do for even your own partner can be hard, especially when you both act of our love for the other, without remembering they are not you and you honestly don’t know what their true reaction will be to anything, the best we can do is guess. It also doesn’t matter how many small things happen along the way, it can be put right if you are both honest with each other and you both are more than willing to accept where we each went wrong and work to make sure it doesn’t happen again. Any marriage requires daily effort on both sides, especially when there is a third party involved and that is exactly what living with chronic illness is like, it’s the third member of our marriage. One that neither of us can predict, control or even at times understand, all we do know is it is all too often in control of both of us.


Please read my blog from 2 years ago today – 22/01/13 – Spin-off 

Yesterday I had no choice in what I wanted to write about, when pain engulfs you like that there is no way to make you brain think of anything else. It is like you have moved into a bubble that excludes you from the rest of the world, even from the room you are sat in and…….