Feelings change everything

For the third January in a row, I have found myself in tears on a Sunday evening, the series “Call the Midwife” is back on our screens. I find it a really great series, well made, true to it time line in history and with every episode it pulls on my heart in ways others might not feel it, as it keeps touching on subjects so close to my own life. From the child who broke my heart for ever, Jeffery, through the one I just couldn’t reach, Christopher and the one who’s love is so important to me as I lost her, then found her again, despite her father’s best efforts to keep us apart, she still comes home to me now, my beautiful Teressa. Due to circumstance more than anything else, all three of them are locked in my heart as tiny children, even the two who are now over 6 ft tall and dwarf their mother. I really shouldn’t watch shows like that, last night my pain was so clear that Adam stopped what he was doing just to give me a cuddle, he wasn’t even alive when Jeffery was born, but he knows better than many just the impact he had on me. Yet again the odd tear is running down my cheek, I guess we never forget and it never truly stops hurting.

I woke in the middle of the night needing to go to the loo, I don’t know what time it was but lying there beside me was Adam, it’s the first time in over 8 years that we have shared our bed at the same time. After several nights of him saying he would come through, he had at last made the jump and was there just where he always should have been. I don’t know if I woke him, or he woke me but he spoke almost as soon as I started to move, which instantly told me that my earplugs weren’t working. They only work well for about 3 days, then need to be washed before used again, it is as though they lose their spring and can’t then fully seal the ear drum from sound, so when I returned to the bedroom I had to try and find new ones, all the time hoping I was not disturbing him which I am sure I did. I had been really surprised to wake and find him there, but it was a pleasant surprise nearly marred by my falling over, I don’t know if it was because he spoke to me as I was putting on my dressing gown or pure coincidence, my balance slipped and felt myself starting to go backwards. Stupidly it flashed through my mind that I couldn’t fall, not then, not just after he had come to bed for the first time, that was more in my head than any danger to myself. Once I had made it back to being actually in the bed, he rolled over so he could hold my hand, I was glad to hold it but it was so odd just trying to go back to sleep that it took me much longer than usual, I can see it is all going to take both of us a little time to get used to it again. I know I woke several times more before the alarm sounded, mainly as I was finding being cuddled up in my normal fashion of the duvet right up under my chin was causing me to overheat. I had totally forgotten that lying next to him is like lying next to a fire, he somehow radiates heat constantly something I have never discovered to be true of anyone else I have ever known. If I am being totally honest, well I could go back to sleep right now without thinking about it and for some reason, I am also not able to hold a constant temperature this morning, I am either too hot, or too cold with no happy measure that works throughout my body. Right now, my top half is roasting and I have had to take off one of my dressing gowns, but my legs are freezing, it is all part of my PRMS I know that, but I also know that if I haven’t had enough sleep it is always worse, but as I said we will get used to it. I am sure that within a few days of sleeping together again, we will do just that, sleep.

It’s going to be an odd week again as he is off now until the 4th of Feb, as much as I love having him around, it never leads to a week that feels as though it has been normal in any way. I guess that is the reason why when anyone suggests that I should have a carer who comes into see me, well I turn it down forcibly, in a way I actually cherish that little bit of freedom that allows me to do what I want without having to think about anyone else’s needs or wants. Part of that, I know is down to my just being and independent person, but there is also a large dose of actually just enjoying my own company. Adam often jokes that I enjoy the silence when he is not around, but it is, in fact, the total opposite that I enjoy. I love being able to have the TV on loudly, not worrying that it might wake him from his normal slumber on the settee, I also don’t have to worry about letting cupboard doors bang or the floorboards creaking, I can just go about my day with my mind on nothing else but myself and what I want and need to do, when I want to do it. I know that sounds selfish, it’s not meant to be, but I know the day will come when what I want just isn’t going to be practical and I am going to have to share my entire life with others there to care for me, so whilst I can still manage, well I am going to make the most of and enjoy every minute of it. When you know your future, well you honestly then see what you have right now in a different way, being myself has become something I hold onto far tighter than I ever did in the past. For most of my life, I was always happy to go along with others wishes and accepted that what I wanted was just a small part of a much bigger picture, it took me a long time to work out, actually I don’t think I really did until I was told I had 10 years left, from then on I know I have become that bit more selfish and that bit more determined to have my life my way. I just read that back and it sounds so bad, it isn’t meant that way at all, but those who read regularly don’t need me to explain that, I wouldn’t miss a moment that I do spend with Adam, when he is awake.

Right now I don’t know why but I am in pain in both my armpits, it happens from time to time, but there is nothing there that I can find to be causing it. One of the things I have found in the last few years since my walking has become somewhat unsteady, that I develop odd pains in odd places. I am sure that I what is happening is I am pulling muscles when I catch hold of things to steady myself, just like the mysterious bruises I used to have all over my legs when I was still working in the office, I am managing to damage myself in my attempts to save myself from worse injury. I doubt there is a single person with any form of MS who hasn’t found the same thing to some extent, it somehow though just doesn’t seem fair, it feels as though you simply can’t win and this stupid illness will get you one way or another.

 

Please read my blog from 2 years ago today – 26/01/13 – Arguments insideĀ 

I have been reading through old entries in this blog, it is hard for me to get my head round just how much I have written in one year, mind you if you write everyday if is bound to add up quite quickly. When you sit down everyday with a purpose that says you have to write exactly and truthfully, how you feel and what has happened in the last 24 hours, it may sound either really simple or really difficult……..

Right or wrong

I found myself in the middle of the night just sitting on the edge of my bed, I had woken up for no reason I could find and for equally no reason I decided I needed to sit up, I was sat there still wearing my earplugs and sleep mask with my head down as though I was looking at the floor. I wasn’t in pain, well no worse than normal and I didn’t need to go to the loo and I was still tired, I just didn’t want to lie down, which made no sense. I think I sat there for a couple of minutes before deciding it was rather silly and I took my mask off and almost automatically headed for the bathroom, just in case it was just my bladder not giving me the correct or recognisable signals. Just in case seems to be one of the ways you learn to live with a body like mine, you can never be sure of anything or accept anything on the face value but this time I had made a wasted journey, annoying, yes, but better than wetting myself. I knew I was tired, but I equally knew that I wasn’t going to go back to sleep at that moment so I sat in the kitchen for a while and smoked a couple of cigarettes.

Earlier I had made the decision because I had put it in yesterday’s blog that I had better tell Adam about the lump on the back of my head, he instantly went into his doctor mode, asking me what were rather stupid questions, but I have learnt to answer them all, as it is the only way to stop him from turning nothing into a disaster. No I hadn’t fallen over, nor had I banged my head on the headboard of the bed, nor had I got up in the middle of the night without waking, fallen over and knocking myself unconscious before going back to bed still all the while asleep. Sitting in the kitchen running it all through my head, it all seemed rather funny and cute, just as the fact that I had a sore left arm which I had already told him that I was sure was an injury rather than an PRMS symptom, although I didn’t know what or how, suddenly in his head it had measured up as my having a heart attack. This is, unfortunately, one of the side effects of having a condition like mine, somehow we find ourselves with partners who are paranoid about every single little thing that happens with your health. No matter how much I love him, and I do, he is so scared about every little thing, from what has, to what might and what never will. Today is shopping day, late this week I know but hey we all slip up sometime, but he will be home at lunch time regardless of the fact the the weather is terrible, the heavy bags I can deal with are now lying on the hall floor so he will get soaked today just in case I might fall over them, my sight isn’t good but I am not blind. It’s the same with everything, the slightest sign that I am not as perfect as I can be, well it is turned into something that might kill me any second, if I didn’t love him, he would have driven me up the wall by now, I know all to well he cares and is just trying to look after me. At least last night I managed to leave the bedroom without waking him, as all to often my efforts to avoid the creaking floor boards that all old houses have isn’t at all easy, especially when you are inclined to the odd stagger, the tiniest squeak usually find him standing in the kitchen with me, just in case he is needed, what he needs is a full nights sleep without keeping one eat open and listening for me all the time.

I had sat there for far longer than my cigarette took to smoke and when I tiptoed back across the hall I stopped for a second to listen to see if I could hear him snoring in the living room, it wasn’t until I had undressed and I was getting back into bed that I realised that I was still wearing my earplugs, so OK the memory isn’t that sharp at that time of day. Adam had fixed the bed for me earlier, it had taken minutes and turned out to be exactly what both of us thought it was, the two sides of the mattress elevator had split apart, it was just a brief job of slotting them back together, as it turned out I should have asked him to do it the night before. I think it had been separating for a couple of weeks as lying on it correctly was at first odd, I had become used to sleeping on a sideways slope, it just shows you, you can adapt without even knowing you are. Even on an incredibly comfortable bed, I didn’t go back to sleep straight away, partly because my head was hurting again but mainly because I couldn’t stop thinking over and over all the time that Adam has spent just worrying about me in the last 14years, time he shouldn’t have been worrying about anything. He may not be officially my carer, but he truly is, even though it is mostly in his head, whenever I try to get him to stop and to reassure him that I am fine, he just says “it is his job as my husband to worry about me”, it is also his job as a human to live and as my husband to be happy.

Why is it that it is always in the small hours that our brains click onto things that could easily be thought through during the day, but they believe that 1 am is a much better time. Chronic illness is a multi-edged sword and it isn’t just me who is being slowly destroyed, it is also my beautiful husband. As much as I would love to have my health back, I would rather see him happy and free of constant worry than my being well again as it wouldn’t change anything, after all that has happened he would still be as he is now, just waiting for something to happen. I may have all the physical pain, but I honestly think that he like many caring partners is carrying enough mental pain to equal it. If he isn’t worrying about my health it is about our financial situation and what will happen in the future as my health gets worse and this house becomes more and more unsuitable, he mentally beats himself up about it constantly even though there is absolutely nothing that can be done about any of it. People forget all to often that when someone’s partner becomes seriously ill, they to become ill in so many ways, none of us were born mentally strong enough to deal with all that happens in this situation and no one teaches us. We support each other as much as we can, but it is all to often the blind leading the blind and undoubtable, because I know it is true for me, when I am struggling I don’t always listen as much as I should and I am sure when he is struggling it will be the same thing the other way round.

For some things like support groups help, or counselling, but he has tried both and found neither of any assistance to him at all, so we muddle on doing what we believe is right and what we think might just make it that bit better for the other, but are either of us right.

 

Please read my blog from 2 years ago today – 08/01/13 – The monster ‘Can’t’

It is now 6 years since I last left the house by myself, my final day in the office when it all went so wrong that they gave me permission to work from home, I don’t think at the time that I truly realised what an impact that day would have on my life………..

999 or not?

I really thought that I had broken through the spell of not being able to eat, I had made it right through the weekend without missing a meal or not finishing it, then yesterday morning I ate barely half and today, I can’t even face making it. The good news though is that it has confirmed just what I thought, it is the spasm in my diaphragm and guts that are stopping me. It wasn’t that I have been spasm free, far from it, they had just reduced in their intensity, which I believe proves my theory that the locking of my diaphragm is restricting firstly if I can eat and secondly putting pressure onto my stomach with the result that I then feel sick. Proving my theory is only the first step, the next is what do I do about it, as clearly I need to eat just like everyone else, plus today and on many other mornings as well, I am feeling sick just from taking my morning meds. The fact that I still have on tablet stuck in my throat just below my voice box and my guts are throwing spasm so bad that my entire body starts shaking and sweat is pouring out of me, isn’t helping much either.

I can’t even sit when they are at their worst like that and I couldn’t type to save my life, so then I have to stand and try and let the fact my body is stretched to deal with what ever is going on inside of me. I wondered through to the bathroom when they were at their worst, why I am not totally sure, as other than the fact they are in my gut, I honestly don’t feel like I am going to go to the loo, well not any time soon. I stood for a few seconds at the sink and was shocked at just how white I had gone, I am normally rather pale, but honestly I was white, all and any colour that was usually there had totally gone, add in the sweat and boy did I look ill. When I start pouring with sweat like that due to spasms the instinct is to start shedding layers of clothing, but the house is actually really cold, so my skin starts burning as it doesn’t want to be uncovered, even if my body is tell me to.

In the past hour this has now happened 4 times and to be honest at one point I was very close to screaming for help, but who and what for? I am an PRMS patient, I get spasm, I get really bad spasms just like I am getting this morning, what could anyone do for me? Nothing! I woke up at 5 am this morning totally drenched in sweat and at the time I could find no reason for it, I had woken suddenly but when this all began this morning I knew instantly what the problem must have been last night, but the spasm must have been a sudden sharp burst, gone when I woke. Which is actually exactly what the first two spasms this morning were like, sudden, sharp and startling. I have only been up for less than three hours and I am already shattered, there is nothing like pain for stealing all your energy and it isn’t being helped by the fact I let myself get so cold, the cold always makes me want to sleep.

I may have been ill for most of my life and now lived with PRMS in full flight for the past 13 years, but I never know what to do when things get like this. It isn’t just that it comes out of the blue, that is one of the things that goes with the turf, but it is the constant clatter of questions in my mind, starting with “You know it will pass, do you really need help?”, then “How long do I let this go on for, before I have to call for help?” They have to be the hardest questions to answer, as no one wants to look like an idiot calling for help for no reason at all, or in today’s case, for one that is nothing more than trapped wind. No one want to look like a complete idiot or waste other peoples time for absolutely nothing. When a spasm is in a major muscle, like my legs or even arms, it is easier to know that there is nothing anyone can do to help, but when it is in my gut like today, or the more common ribs, diaphragm and lungs, the answer is anything but easy. It becomes a new range of questions, starting with “Is this my PRMS or is it something else”, how am I supposed to answer that one, I can’t see inside me, I could quite easily at this second have a compacted intestine that is getting ready to split, I doubt it, but I could. When it’s my chest I have on a couple of occasions terrified for a few minutes that I was having a heart attack and on others that I wasn’t getting enough oxygen. Clearly I am still here and still alive so I would have felt really stupid about calling for assistance on any of those occasions.

Until the spasms started happening in my upper body and intestine, the answers where simple, it might hurt like hell, but no one dies from a spasm in their leg, no matter how bad it is so the only thing that there is left to question is how long do you let it go on for and how much pain you can take. I have never called for assistance for those sort of pains, but I have never had a really painful spasm that has lasted longer than 15 minutes and I think that one ran away on fear as I had the phone in my hand when it suddenly vanished. I have never been given any guidance on any of this, no one gives you guidelines as to what to expect, what is normal and when it is right to scream for help, we are all left in the dark trying to work it out for ourselves and I don’t think that is right. When there is no longer a single area of your body that is unaffected, knowing if it is that or something else, just gets harder and harder and there are no simply ways of working it out. If I had called for help every time the questions started, by now they would be taking my phone away from me, but joking aside, I would have been in and out of hospital a very large number of time. No one lives with pain without questioning over and over, is this right, is this how it should feel, or is this something new and different, nor are we immune to plain and simple fear

There are no easy answers to any of it, I guess it is a case of knowing yourself, your condition and your pain levels, after that, well it’s all guess work and prayers that you make the right decision at the right point in time.

Read my blog from 2 years ago today – 19/11/12 – Looking towards Christmas

I realised over the weekend that Christmas is again crashing towards us are full speed. I used to love Christmas so much as I love all the decorating and giving or presents, everyone always told me I went OTT but I gained huge pleasure in doing so. My home would be decorated beyond most……