Never alone

I made a wonderful discovery last night, nothing that will change the world but something that made me feel just that tiny bit more sane. Anyone who has a condition that effect their nerves will have had spells where their skin feels to be on fire, but when you touch it there is no difference in temperature from the rest of you. I’m not sure what made me do it but both my hands were on fire and the tingling associated to it was driving me mad, I had just finished massaging it in an attempt to stop it and both my hands were sat on my knees my right slightly cupped around my left but not touching it, I couldn’t believe what I felt, there was heat way above the temperature of my hand radiating from it. I lifted both hands and tested it over and over again and every test proved the same, clear heat radiating a heat far higher than my skin temperature. Adam was beside me so I asked him to repeat the test, I made sure his hand was at the right distance about half an inch above my hand and I waited, he could feel it too, he also confirmed that although my hands were warm, they were radiated heat, clearly higher than that of my skin! Neither of us can explain it, but it does explain how I suddenly feel like I am sitting inside a furnace, my body is radiating a heat that is trapped with by my clothes. I had always noted that when I uncovered my skin, in seconds it would feel as thought it was being plunged into freezing air, the heat was no longer trapped and my skin temperature was returned instantly to normal, something I know I have written about several times. I still can’t explain how in any way I can actually radiate heat so different from my actual temperature. I would be interested to know if anyone else can repeat the experiment with the same results, odd things and this is odd, totally fascinate me.

It’s is one of the things I love about writing, I mentions something and others come back to me thinking they were the only ones to ever discover it. So often they are just those silly little things, like the above, they aren’t the things that will change anyone’s lives, but they are the things that you find yourself thinking about over and over again. It doesn’t matter what it is, but you can be sure of one thing, finding any thing like it on the net is impossible, so you are left once again believing it’s just you! I don’t actually think there is anything worse than that feeling, that no one in the world has any idea just how you feel or what is happening to you. I know that there are hundreds of associations out there, groups the actually meet up and groups that are here on the web, all offer support and advise but not all of us want to be part of them. I did when I was first diagnosed but because of what I found in all of those groups, just wasn’t for me. I was amazed at how every group I came across always had this self appointed leader, the person who had every symptom anyone mentioned and always had to have it worse than anyone else too. Finding the in quotes “normal” people was hard as they lurked around the fringes, putting in the odd word here or there, just for it to be picked up and almost over powered by the goby one.

Illness can make you feel as thought you are totally alone, even when you are still out and about in the world, you are isolated just by the fact you are the one in the wheelchair or with the walking stick. I know that people don’t mean to isolate you but many do it without even knowing they are, it’s just the way they look at you as thought you are from some alien planet. Every time your body lets you down, you are once again alone or in some cases, wishing you are, bladders and bowels don’t care who is around you. Once your body is out of your control, you are instantly no longer part of the world, simply because your body makes you stand out and makes you a point of interest. I for one didn’t like being stared at, being embarrassed and being unable to do anything about it, so to find people at last who just understand how it all feels and are happy to say, yes that happens to me, without making a huge song and dance, is a huge relief.

I spent most of yesterday evening once again trying to find a position I could sit without feeling as though I was unable to breath, I knew that Adam had noticed as he even offered to fetch me a booster tablet. I had done my best to move as little as I could, as I know what it is like sitting beside someone who is always on the move. It’s hard to know what to do sometimes as none of us what to upset our partners even slightly, especially as they already have to put up with so much. Just because I have a named selection of illnesses, doesn’t give me a right to do what I want all the time, in fact I actually think it is a reason to think of what he want and needs even more than I did years ago. We have always been a couple who don’t really socialise a great deal, despite meeting first in a pub and actually getting together in a night club, once we were living together we spent less and less time with other people, something that happens in a lot of relationships. It is rare for Adam to go out now, other than to the shops and once in a while to see his mother or sister, he always spends several hours before he goes checking and checking again that it is OK for him to go out and leave me alone. I know that he is always worried that I will take a fall or that I will need him for some reason or another, so it isn’t just when leaving me for social reason, he checks every morning and before he returns to work every afternoon, that I am going to OK until he gets home again. I used to feel guilty about him closing his life off because my life is closed, I worried about him not having some social life or other, but we have grown into living the way we do and when I have spoken to him about it, he always said that he is happy with things as they are. Illness doesn’t just isolate the sufferer, it can isolate their family as well, it will work differently for other people but we seem to be isolated happily together, without a need to live in any other way. It’s very much a personal thing and each couple will either make it work or sadly won’t as I know does happen, I guess it’s down to love and how you can adapt together. You can be isolated without ever being alone, I know he loves me and I love him, I also know that even when he is at work, he hasn’t left me alone in anyway at all as I always know his love is there.

One sided worlds

I woke early this morning as I was desperate to go to the loo, I really hate it when that happens especially as getting out of my bed without using the elevator although still possible is painful, but using the elevator is slow. Having to lie there and work out which option is viable, isn’t really what you want to do when your bladder is screaming at you to get on and move but still half asleep with an instinct to pull the covers up and drift off again. My bladder control isn’t brilliant like most people with MS, no matter how much you may think you can wait, it is inclined to disagree and then takes the opportunity to prove it. I decided to go with the elevator system, which by the way is working perfectly ever since I attacked it and tightened all the straps I could find, it hasn’t stuck once. 6:45 am and I had been ejected from bed and having moved as fast as I could, I was awake with yet another decision to make, go back to bed or get dressed and make it the start of my day. Nothing ever seems to have or be a simple choice, within in 5 minutes of waking I was already in my usual system of working out energy usage compared to which would work best for me and the rest of my day. Taking into account the everything, I opted for staying awake as it would take away the struggle of getting back into bed and out again, all I had to do was get dressed, something required in both options. I didn’t mean to wake Adam but I guess I had done when I went to the loo as I did notice a great lack of snoring once I was on the move, yet I had heard it clearly while still lying in bed, he had once again spent the night on the settee, regardless of walls and doors I had heard him the second I woke. As I settled myself onto my chair and turned the computer on, he sat up and turned the TV on for me, the first light I had seen other than when I opened the fridge to fetch my glass of coke, the day had begun for both of us.

Last night I wanted to go to bed when Eastender’s finished as I was in pain and tired but I stayed up as it was so nice for the pair of us to actually be really watching and communicating about a scheduled program. It wasn’t just the program but for some reason Adam had shifted from his end of the settee to lying propped on a cushion in the centre of the settee, bringing him within inches of me, instead of out of reach. It’s funny how unlike what I see in other families we are, we rarely talk about what we are watching, long conversations are started by it, but always they turn into what we know from our own lives, rather than what the program is telling us. I actually think that all to often both of us avoid talking about what might be called important subject, unless the TV gives us the option to do so. Despite having been married for 13 years we still gently walk around each others feelings, not getting into conversations that we know will upset or hurt the other, even when we know they are things we really should talk about. So we wait, well I do, I can’t talk for Adam as I have never asked him, but I wait for the door to be opened by an actor giving me the cue to take over. Once you are chronically ill, talking about the big subjects, the things that effect both our lives are all to often not talked about at all. Yes we talk about the small things when they are happening, we communicate but don’t really share much beyond that moment in time.

No one could spend all day every day talking about all of the painful subjects that come with bad health, in fact I think we might actually talk about it less then other people do. There is always those few hours when a doctor trigger a subject that we will then talk about, but it is almost as though we seal it off at that point and dismiss it as discussed and done. As people grow and life changes us, our opinions change, but somehow those closed subject still remain closed. I don’t have some major thing I want to talk about, that isn’t why I am writing this, it is far more a case that I wish the doors to every subject on both our sides could be open, without the danger of hurting either of us. I don’t think this is something totally unique to couples who are living with a chronic illness, I think that many many couples have the same taboo areas, places where because we don’t want to hurt those we love, we avoid, it’s just when one of you is dying, there are more painful places available to go. For me I know one of the problems I have with talking about anything serious, is the limited time we have together, when you only see someone sometimes for as little as two hours a day, simply because of sleep, those limited time slots have to be happy, not spent in tears or turned into even worse possible anger. My relationship with Adam is my world, he is the person who keeps me connected to the outside world, tells me his stories from work and lets me know that life goes on outside my world. A world that he is the centre point and as such the person I want to protect from anything painful, it is my nature and what I see tells me, it is his nature too.

There are so many things about living with someone who is housebound that I can’t write as they would have to come from Adam, I can only ever give my side of everything. I can only guess at the pressure that it puts on him, it can’t be easy to have someone who relies totally on you for so many things, but the one I guess must be the hardest is the fact I rely on him for much of my happiness. Yes we are married and yes that means we are in a partnership, one we vowed that we would care for each other in sickness and in health, but neither of us saw this coming and I don’t care what anyone says, it is a partnership that is totally unbalanced, as I can give so little to it, at all.

I have at last managed to work out my energy bills for the last year! It has taken Npower that long to give me an accurate bill and following my phone call earlier this week I now have the full picture. I have to say firstly how nice it was to find that at last they are using one of the most basic system on there phone server, the call back. It used to be part of my job to program and care for the phone server and it’s so basic and such an old addition that I have never understood why others didn’t use it. I made my call, the system asked if I wanted a callback and I accepted that option, no listening to loud music, no getting a painful arm holding the phone while I waited, I just hung up and they called back with in 15 minutes, brilliant! Anyway it turns out they had sorter the whole problem out, the issues was it was in three separate bills and only the last was on the web site, that is now fixed and at last I can say I am happy with everything. Even happier to now be able to see that my measures of energy saving I have been working on for 3 years has totally worked. I am guessing I am one of the few people in this country with bill that have only gone downwards over that period, in 2011 I was paying £86 a month for both electric and gas, in 2012 £78, 2013 down to £71 and now I have a price fix for 3 years at £67 and this is the first time I have used a deal. It is a lot easier than many think to keep your bills down, first step don’t use lights you don’t need, my TV lights the room, I have one storage heater in the hall and it heats the entire house, I set it daily to match with the weather forecast. The washing machine, tumble dryer and dishwasher, all used year round are used at night during the cheap rate and I don’t open the curtains from the start of winter right through to spring, even thought we do have double glazing. They are small things but once you are used to them, it’s a simple why to live and it keeps the money in my bank and not theirs.

A happiness anniversary

Although still wishing for a 100 hours sleep, I find myself actually feeling rather upbeat this morning, not that I was on a downer before but exhaustion had a habit of removing all emotions and leaving you as a smear on the floor. I was surprised when I woke this morning to find that I had a headache, I seem to have had quite a few in the last couple of months, but they have all developed over the day, not thumped through my brain as fast as my eyes opened to the alarm clock. It’s a really odd one for me as the classic all over headache has never been a feature of my life, I remember when I last worked in the office being asked regularly if I could give someone an aspirin, despite always answering the same, that if I did, I would be breaking the law. I really thought that work would be something that I would miss terribly, but with it now being 2 years since I was made redundant, I am surprised at how little I actually don’t miss it at all. I suppose the fact that I had been working from home and had used fully the closing weeks to look for a job, everything from that point went reasonably smoothly. Each change and each step further away from the world of work has been very much like the turning the pages in a book, my memories of the page before are clear, but 10 or 20 pages ago, well I know the story but the precise wording has blended into the past. 2 years ago I stupidly thought that my skills alone and persistence of emailing 100 of companies and agencies, would mean I would be working again very soon. I never allowed for the fact that British companies can’t see past having their employees in the office and living not far away, it was an impossible wall to get past, although I had preformed every element of my work from home for 3 years, they just couldn’t seen how easy it was for me to do so. I kept fighting their views for a whole year, before I gave in and accepted that just as the government had written me off as unable to work again, so had the entire working world and I had to accept it or drive myself insane. Sometimes you have to give in and for me the day that I stopped and faced the fact of what my life was going to be like from then on, was actually a day that empowered me to start living a new life and to stop trying to find a way back in time, to a life that had gone.

I’m not sure what made me start thinking about it again, other than it is two years ago this month I was made redundant, but it is actually the sentence I wrote last, that was the starting point that made me think back. It was that fact, that I had to face a situation, already clear to others, that my life had to change. The hardest part of being housebound is actually that word acceptance, amazingly it is made harder by people who think they are being helpful and trying to give you hope and away into what they think it the right way to live. I still to this day find myself chatting to people on line who want more than anything to get me out of my home, be it by moving house to somewhere they think is more suitable, or by finding away of helping me to get up and down those stairs. I have written many times about the detail of why my actual location has nothing to do with being housebound, so I’m not going over it again today. Becoming housebound doesn’t happen over night for most of us, mine was a slow slope down that hit a bombshell and then over night the door was closed for ever. Learning to live in a different way, did have a gradual start, one that eased me into a different life style, but still without really knowing it, I was still fighting it. Amazingly the one group that I thought would be throwing me down the stairs physically, the DSS, the benefits people held their hands up and said “You will never work again, so here are your benefits even thought you never asked for them”. That was from a government desperate to get the disabled into work, but they had their information from my doctors, it didn’t help my self esteem at all. I was caught in this strange world where I felt almost bullied by one side telling me I could still have a normal life, a job and everything else that required me to be outside. The other side were saying throw up our arms and accept you will never live that way again, you are a right off. Just one year ago all of that was still fighting a battle inside me, still trying to demand and destroy, voices with opinions and not one of those voices had sat down with me and asked one simple question, what is it I wanted from the rest of my life.

I believe that if you are going to live well in a housebound world the first and most important thing you can do is simple shut out all those alien voices and I hate to say this, but that includes even those you love, because this has to come from yourself and you alone. It wasn’t until I was able to do that, that I actual was able shut out all of my past life and look at myself in a new world and how I was going to live in that world. I was free to start making decisions, not just based on my health but also on my what was in my heart. You can’t do anything until you are at peace with where you are in life, you have to accept what limitations you have to live with, without those who keep lying to you and quoting stupid lines about there are no limitations, yes there are and you are going to have to live with them. It takes time to accept you have a new life and there is no going back. I wasn’t able to do anything until I was at peace with all of that, then and only then could I start to talk to others and to be able to say I was in myself happy. It may seem like such a small thing, but to be happy, to know your limitations and your ambitions is what makes life liveable. I am so at ease with it all now that I hear those people who want to tell me I can live my old life, but they no longer upset me, because I know my answers to them and I am happy to tell them.

Housebound isn’t easy, 6yrs nearly 7 now since I was last out there alone as a person, not on two feet, but on 4 wheels. Those first 4 years where a training ground, mixed with old and new, but it honestly took me until 2 years ago to finally feel at home in my home and so at home I am happy to be here for ever. It’s a long slow process and it takes strength, for the oddest of reasons, it takes strength to shut out all those who think they are being helpful, they aren’t living in the same world, so only you can decide anything.

Change the system

So many people say how much they have been helped by reading my blog as they have found a voice that says what the feel and relays the all the things that go along with not being well. Well please believe me that it is a two way street. Yesterday I need to know there were others out there who felt just as I did and had run into time and time again to similar situations and that I am not alone. There is one thing that gets to me though and is actually making me angry and that is this simple fact, if so many of us find the same reactions, same miss handling and the same pain from what our so called health professionals have to say and their so called expertise, why are we all just putting up with it! Fundamentally there is something wrong, something that is failing millions, yes I can say millions as if I have managed to find so many from a small pool of people there has to be millions. I alone can’t come up with the answer to all the things that happen to me or others but I really do think that this is an area of medical care that needs looking at. I can see clearly that there is a nasty twist in all our care and that care is actually making many of us far more unwell, than we were before we went head to head with the NHS. I have thought about it before and although I know the pitfall of any change is the fear of being sued, I can’t’ help feeling there has to be a better way of actually helping people.

I know that it is going to take me a few days to get myself back to what I call normal, another of the NHS blunders, if a doctor just want to talk to you, then there is a thing called the phone or even Skype. Once you are ill enough to be housebound, you really don’t have the energy, even when someone carries you down stair and you spend the rest of the time in a wheelchair, going out is hugely destructive. It will probably be next week before I feel right, all part of the reason I have decided that doctors are of my list of people to see. It actually amuses me that doctors seem to be among those people who don’t understand what housebound means, they think they are beyond the rest of the world and can command your appearance in their office, it is truly bizarre when you think about it. I am more than aware that many people, mainly those who are healthy, can’t comprehend how a small amount of activity can destroy you for days, to be honest I have nothing I can comparer to it from my years on the healthier side of life. Most activity even the most strenuous will leave you at worst tired for a couple of days, but you can still get on with normality, this goes way beyond that and I can only suggest you think of how your body feels when you have the flue. Take away all the bunged up feelings and the coughing and so on, just think how your muscles feel and how drained you are of energy, that is probably the closest I can get, now imagine feeling like that for a week, just because you went out for a couple of hours. Now imagine that someone who just wants to talk to you, demanded that you go and see them, how would that make you feel?? My body seems to have felt as thought I have had the flue for the last 8 years without a break, being made worse, more drained and more unable to manage, is part of what drove me indoors and has kept me here. The only good thing about going to the hospital is the fact that it confirms why I live indoors and why I can’t live with the rest of the world.

I am going to have to find some energy from somewhere this afternoon, as I had an email today saying that finally my bill from Npower was there and correct, guess what? it isn’t! They have correct it from April this year through to November and that is correct, but they forget to fix the over charge for November 2012 through to April 2013! I can’t believe that I have been fighting with them now since April and they still can’t get it right. For all their apologies and their promises, I am really running out of patience on this and I am going to make it clear to them when I talk to them this afternoon. This will be their last chance and if it isn’t fixed this time I will have to take it to OFGEM. I really can do without all this hassle, no one needs it but it is playing on my health as well as I can’t actually work out where I am financially or what I have to spend on fuel for this winter. I am not calling until this afternoon as I already know that phoning in the morning is actually just a way to sit and listen to there holding system, in the afternoon you usually get to talk to someone. I guess by tonight I will be crawling of to bed worse than I was when I went to bed last night. I don’t know why but I had a feeling that this week would be one I would rather not have, so far I am being proved right. Fingers crossed that tomorrow will bring something better.

MS brushing

Yesterday left me totally drained, there wasn’t an once of energy, fight or understanding left in me, my two hours sleep made no difference at all. I have found almost every time that I have been to the hospital, regardless what they say, I am always left feeling like they have managed to destroy me in seconds, even when I have come home with a positive result, as rare as they are. Yesterday it took right through to the point I said goodnight to Adam for it to all slot into place and those screaming holes that I couldn’t find the answers to, suddenly where filled and the tears that flooded down my face when he said, “I’m sorry that today was yet again the same old result”, I couldn’t actually even look him in the eye as he had hit the nail on the head. That was what was wrong with me, I had been brushed under the carpet of MS for what feels like the millionth time. When I was given the diagnosis of COPD, split into two halves equally guilty, MS and Emphysema that actually gave me some hope, some really hope and every last drop of it has now gone. I know all to well even then that the MS had the upper hand, but they could still as needed treat the Emphysema and keep it at bay easing half the problem.

Yesterday they changed that, the Emphysema has moved down the scale in my head, there hasn’t medically changed at all, but hearing it described in such a different way, destroyed it all I had put together in my head. Suddenly I have found myself with nothing to fight as my MS has already won, I hadn’t expected other than the through MS Hug, that my breathing could be effected so badly. I can accept that the pain in my diaphragm and the corseting of my ribcage are all down to my MS, but being unable to breath not only because of pain, but because my lungs just don’t know how to bring in air, still doesn’t fit. I have to keep taking all the meds and using the inhaler to help keep my lungs open and breathing, but what is going to stop my MS from locking down all the muscles it so clearly now has control of? As long as I had the belief that half the pain, half the difficulty in breathing and half the discomfort was nothing to do with my MS, I had half a chance of surviving for all of their 10 years. Now it has all changed and that as you all know, takes me a little time to get my head around it all and to settle myself to the new facts.

I have lived for years with this happening again and again, it feels as though half my life was spent fighting for a diagnosis, which I eventually got, only to now be fighting for someone anyone to not brush every symptom I have under the one flag, Multiple Sclerosis. It’s really nuts and something I suppose I haven’t really talked about, but it is something that rips you into pieces at times. MS can’t be cured, mine has relapses and steady progression in a downward line, but how am I or anyone else meant to be able to manage a condition that know one tells you what might happen next? A year ago I started to have problems with my diaphragm, I was sent to two different department and had countless tests done, they discovered things I didn’t know I had and in the end it appears that a year ago I had a MS flare that attacked my diaphragm and set off a downwards progression. If a year ago I had know it was possible for MS to cause what I was feeling, I would have asked for steroids, with any luck they might have stopped it as they have done with other flares in the past and I might not be in the position I find myself in now today. I can’t help feeling that as soon as a doctor knows you have MS that they then look for ways of passing your symptoms into the MS mix so they can then hand you back to your Neuro, who pats you on your head and sends you home again. Medical pass the parcel, that must cost a fortune to the NHS and equally must destroy patient after patient.

The longer I have lived with my personal monster, destroying quite happily by itself, the less I need others to destroy me as well. I am being drawn more and more into the belief that I should care for myself as much as the medics will allow. My GP until this last year has actually let me do so without any great problems, and we worked well between the two of us, I diagnosed, he confirmed and we together chose a medication that we could both agree on. I have no desire to head off to see any other doctors in the near future and I am going to do everything that I can, to not have to do so. Clearly if I had a heart attack well I might no be able to avoid it, but for the general care of anything that appears, I will deal with it. I feel I need to sit down with him and talk it all through, which if I was able to get to his surgery, to on the surface to talk about something else, I would then slot it in, but I feel I would be wasting his time to just pick up the phone and have a chat. I just have to remember and wait for a reason to call.

There are always other downsides to days like these, things that someone who doesn’t have MS or any of the similar conditions, I have been going through heightened stress and the one thing that does with style is to make everything else go wrong. This is day two of pain that has climbed the scale every few minutes in all four of my limbs, last night I had to take my booster pill just to go to sleep. I did mention briefly that my left thumb isn’t happy, well neither of my hands are happy, even when sat still they are in pain, burning up and the fire climbs from finger to elbow. The worst thing isn’t the pain, it is the sudden locking of digits and numbness that I recognize from several years ago when at the same time of year, a gradual down hill started and then the sudden flare, that took all use of my left arm away. All I can do is wait, but the higher stress isn’t helping anything, given just a few days I know that most things will settle down and yes I will improve as well, it’s just going to take time.