Monthly Archives: May 2014

The small things in life

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I don’t know who you are but good morning to the six people reading my blog at this very second, 10:49 am 31/05/14. I really love that little globe at the top of my blog page, it has this strange effect of changing my mood, just by looking at it. There are days like today when I pop in to pick up the details for the link at the bottom of each post, to the post from 2 years ago and I am greeted by flags around the world, flags belonging to people who are connected to me, right at that second. Just knowing that at that second all of those people are reading, well it makes me feel proud of what I do. Then there are days when I am alone, no one there but me, but I can see thousands of dots, dots belonging to people who have been to my page, turning countries greener and greener as time goes on. Sometimes I enlarge it and I try to work out just which town, city or village the dots belong to and what sort of person it is from there, that was drawn to read and why. Either way it gives me a boost most mornings, telling me that I am totally not alone, all around the world and from places I never imagined there are people, real people who by just clicking in and reading have touched my life, as much as I have theirs.

Almost every day I see and speak to no one other than Adam, well I’ll correct that just slightly, I answer the intercom every day to the postman, one of the drawbacks when someone works out you are always at home, so my world has shifted to a major degree to online. I think if you were to go back to the start of my blog it wouldn’t be that many posts in that I first make the suggestion that everyone who is housebound should be given and taught how to use a PC, tablet or smartphone, whichever suits best. I know from my own life that this window onto the world has become the most important escape and way too still be part of the world, so when I heard someone on the morning breakfast news, saying the same thing as though it was their personal and stunningly new suggestion, made me laugh. I make no claim to it being my idea either, as I am sure millions of others have also come to the same conclusion, that it would help to end loneliness and give most a new lease of life, plus also saving the NHS a fortune. Why I am mentioning it here though isn’t just because so called experts with NEW big ideas, need to be taken with a pinch of salt, but because there was, of course, the so-called other experts who tried to argue that it wasn’t enough on its own and that people can’t possibly live a full and content life just online.

The longer I am housebound and the more I have learned just what works for me, the more I find myself in total disagreement with so called experts, as they simply don’t know what they are talking about. They can have as many degrees as they like, unless they have either lived like this, or they have taken time, to do proper research, not loaded questions in favour of their views, they can’t possibly understand the first thing about any life other than their own. On several occasions in the past I have come across questionnaires which have being put together to collate information about living with MS or other chronic illnesses, the problem with every single one of them, is they only allow yes or no answers, to questions that have clearly been put together by people who aren’t ill, they are the things that a fit and healthy person might think would be important to a disabled person.

From the start, I wanted to write to give the true picture of life once housebound, as, despite many long searches, I could find nothing online to help someone like me. My goal hasn’t changed, but strangely the longer I am writing and the more I read or see on TV, the worse the situation seems to have become. I started this morning by saying the effect that one silly little widget with a spinning globe can make to the mood of one person, imagine just how many others could get that sort of life daily, it doesn’t take having expensive carers or companions, it is the small things in life that make the biggest difference. I know the world is very different now, but 20 years ago I would have been writing a list of hugely expensive things, things that I would have thought were essential to live a good life, now I doubt if one of them, would I even think of listing. I know I am lucky to have Adam, he is my real world and when he is not here, well the virtual world does me just fine.

I just wish that right now there were a group of people all working together, to work on finding those small things that make people happy and how to put them together with the people who need them. Yes, they could put together a site that would be a community access point for all those who need a simple route into the online world. It would need to be incredibly simple to access and navigate, not filled with annoying flashing things, or pop-up ads with fiddly small “x’s” that you can’t click due to bad dexterity. Everything designed for the elderly and the disabled to use, not bright spark kids who know everything. Most of all, though, whoever it was doing the work, well the first and most important thing, to talk to the people who need it, not just doing what they think is right. All to often I just feel that I am being told what is best for me, what I should need and what I should have, even when they are my idea of hell. We are not all the same, some people will long to go to a community centre and sing songs, but some will be just like me, but just don’t know how to do what I do, because no one has taken the time to teach them to use a PC. I find it hard to believe that the world has changed so much in the past 20 years, but they still expect the disabled and elderly to need just what they had back then.

 

Please read my blog from 2 years ago today – 31/05/12 – Help for others

My health has always been wonderfully iffy, to put it mildly, before my diagnosis I read and read, trying to find out what was wrong, there were so many illnesses that it could have been, that I found I had every illness I had heard of and many I hadn’t, clearly that wasn’t the case, but I was aware that MS is far from the only illness that causes not just cognitive problems, but other brain damage as well, so when the other day I was asked by a friend on Twitter to tag some of my posts……

Research

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I woke this morning with the pain in my left side that I had the other day, it wasn’t anything like as bad as before but it was there, just as it has been on many time before. It took me until last yesterday to be sure, but I honestly believe the pain is coming from my lung, I have written many times about the pressure and discomfort that I get when lying down, well this is in the same source point, it just stronger and further reaching. I have noticed many many times now that one area starts to really hurt, to produce pain above what my meds can handle, it seems to trigger pains elsewhere, I don’t know if I am right or not but I have this idea that what is happening is that my natural pain relief centres on the worst area, leaving the rest of me to just get on with it, the result I become aware of pain that was there all the time, just masked. So much of living with any illness seems to be guess work, there just isn’t enough information anywhere to tell you exactly how a body responds to different situations or how it could possibly affect you, all you can do is try and work it out for yourself. There is one thing I am sure of and that is there is so much personal research and so many possible theories, sitting in millions of blogs, giving fuller and more detailed information than any doctor could pull together and no one is using it for anything. I know it would take a lifetime of work to do it, but there is a full-time job for anyone who wants to work on any individual chronic illness, I am sure there will be thousands of breakthrough items just sitting there doing nothing.

Of course just knowing that the pain is coming from my lungs, still doesn’t answer if it is my MS that is causing the pain or my emphysema, on one level it doesn’t matter, but on the other it really does, as if it is my MS then there is nothing, no medication or physio that could possibly help, but if it is a sign of my emphysema getting worse there is a possibility there might be something out there to help in the future to control it. More guesswork, more waiting and more time spent dreading it happening again at full strength, as it would again pose the question that I raised the other day and I am still no closer to answering, is how long do you wait sitting there in pain, before you call for help? Once again I have searched online in vain for an answer to that one, but nowhere does it say act at this point or that, the concentrate on long-term control, not sudden acute attacks. I remember quite clearly when I had pneumonia, I called the doctor to the house who wrote a prescription and brushed the whole thing off as not important, despite the fact I could hardly move and when I did the pain was unbearable. 6 hours later I called again, the pain wasn’t worse, just no better and I was at the end of my tether, unable to find even a minutes relief. A different doctor arrived who called an ambulance and gave me a painkilling injection, I was in the hospital for 4 days on intravenous Morphine and constant oxygen. It is the luck of the draw which doctor is going to help you and which will do absolutely nothing, I am still convinced if the second doctor had seen me the first time round, he would have done exactly the same thing, he wouldn’t have left me there in pain. I don’t speak to my GP that often but I have made a mental note, this is a question that I am going to ask him if I remember!

A couple of days ago I was asked by one of my Twitter followers if I would retweet and appeal for them, I always check them out as I have found in the past that often it is someone trying to drum up votes for some on-line competition, or businesses trying to sell something. I don’t forward those sort of tweets as I had always held it to health issues or issues around children, this person didn’t settle for one request sent when I was offline they sent it about 10 times to me within an hour. I as always took the time to read through what it was all about and found myself angry and absolutely not sending the tweet on to my followers. It had come from the husband of someone who like me had MS, his wife had a lifelong dream that he wanted to make happen for her, so far no problem, what annoyed me was he was asking people for money as his pay, wouldn’t stretch to cover the cost. I could totally understand his motive, but what made me angry was that I too have unfulfilled dreams, so do millions of other, but I wouldn’t ask anyone to give money to make them happen. Yes, if it was for a child who is dying, that is totally different, but for an adult, someone who has had a life, who has had the option to make it come true themselves and still has much of their life still to live, no. I sent him a private message, just saying I didn’t approve but wished him luck with his endeavour. It was clear he had already managed to raise some money, but I personally just don’t get it at all, there are so many people out there who struggle to just live with their illness, due to bad housing, or pure health care, or lack of adaptations and equipment, they are the people who should receive help, not an adult with a dream. I don’t often give my view on things like this, but to be honest it really made me see red, even though I remained polite. I know it is up to an individual if they give money to this sort of appeal or not, but the site they were using to collect the money on was filled with appeals from individuals, most with little true value behind their appeals other than to give them money, internet begging if you like and most worrying, none of them had any proof of who or where the money was going, sorry to say thing but I think that most of them looked like scams, so please be careful if you to are contacted in this way, think twice and if you want to give money, give it to a recognised charity who desperately need everyone’s support.

 

Please read my blog from 2 years ago today – 30/05/12 – The medication quandary 

Last night I found myself online at a time of day that I usually spend with Adam, he had come home from work then gone to the chemist with my prescription which had arrived that afternoon. Unfortunately, the Oxycontin wasn’t in stock so he will be picking that up this evening, so another day of not knowing how to sit stand or move. When he came home I unpacked all the meds, two carrier bags full, they were all sat on the kitchen unit looking like a weeks shopping, rather than the medications by one person just to get through life. During the winter we spend…..

Out of control

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Another drug is now being prescribed for MS in the UK and once again I have received several really thoughtful tweets from people to let me know about it. I actually had for once beaten them to it as someone mentioned it months ago, of course, I checked it out straight away, only to be once more disappointed as it is for the treatment of relapse remitting MS and of no use to me at all. Sometimes it nice being different from everyone else but I really drew the short straw when my MS was diagnosed as progressive relapsing MS, 5% that is all of us there is, just 5% of all people with MS have this form and I have to date only met 2 online. It was one of them thought that said something that made me smile and accept it a little more, all they said was that “We are the lucky ones as we don’t have to take all those horrid drugs that other MS suffers do”. It is true about a lot of things in life and health is no different, if you can’t see the funny side, well you would be wallow in depression. I know that I get frustrated by my health, but I also laugh at myself a lot, in fact, I have learned to laugh when many might cry. I have a habit now of first saying to myself what would an outsider think if they saw me right now, stupid things like trying to commando crawl in pyjamas and dressing gown, it doesn’t work as everything slips, get tied around you and leaves you little further along the trail you had planned and I know without a doubt must have looked ridiculously funny. Or when on days when all muscle control is gone and I can’t help passing wind with every step I take, there isn’t a kid on the planet that wouldn’t laugh at that and when alone I try to remember that and not get my self-wound up about what I can’t do anything about. They say laughter is a great medicine, I say it is the protector of sanity.

I suppose we are all guilty of taking ourselves too seriously, of being too concerned about what others think of us and unfortunately, that doesn’t change just because your body is now out of your control. It is hard at times to remember that it isn’t our fault, or that there really isn’t anything in the world that can be done about the millions of things that happen again and again, but you have to try, for a perfectionist, well it is even harder. Strangely it isn’t the falling over, the stammering, the strange body twitches or even the problems cause by my bladder or bowels that embrace me the most. They are the obvious effects that go hand in hand with MS and are all easy to accept, as they are all things that are clearly out of my control, just as they are out of anyone’s control who has this illness. They are the easy things to laugh at, to put in their place as being part of my life that I can’t control, but there is one thing that I can’t laugh off, one thing that I feel ashamed of and embarrassed by and although I know logically it isn’t my fault, I still would do anything to change.

Even after all the things Adam has seen, has had to do for me, or even he has read here, or we have talked about, I still try to be as close to the person he married as I possibly can be. I know, he knows and world knows that I’m not, I don’t wear make-up, do my hair or even get dressed nicely any longer, but those things I have found easy to pass over and put away in a box, as they are the small things, he has always saw me as I am now at weekends or in the evening, so that one I can cope with. Yet I can’t deal at all with the fact that I have gained weight, I keep myself always covered as much as I can, I sit in ways that hide some of it and drape my dressing gown over the rest. It’s not my fault I have gained weight, it is just part of being ill and not being able to move, but I beat myself up about it daily. To be honest it isn’t helped by people constantly going on and on about just how much damage being overweight does on TV. It sometimes feels as though every day at some point I am being shamed for something that is the last thing I want to be, fat. This is the first time in 30 years that I have been over 10 stone, which for my height was spot on the weight I should be, in fact, I was often below it. I now weigh 13st 8lbs, I dread standing on the scales, but I keep doing it, in the hope that one day it will start going down instead of just up and I truly dread the future. For nearly 6 years I have managed to keep my body hidden from Adam, I couldn’t bare him seeing me naked, as I can’t even bare seeing myself dressed. Short of stopping eating at all, I can’t see how to win this battle, I have cut and changed my food over and over again, but when you can’t do anything physical, not even walk, what are you supposed to do?

Years ago after I had my first son, my weight was worse than it is now and I lost it all by myself, I simply started to count calories and slowly I lost the weight, never to put it back on again. Yes I am human, I had the odd blip were a few pounds when on, but I lost them always with ease and as long as I kept track of my eating, I was fine. I couldn’t understand why anyone couldn’t lose weight if they really wanted to, calorie counting now is so easy compared to back at the end of the 70’s, then everything had to be weighed, worked out and written down, but it was easy enough and it cost me only the price of a book that told you the calorie value of almost everything. It also taught me for life, as I counted in my head roughly every day what I ate from then on, no weighing just estimates but it was enough, so to find that I now eat around 1500 cals a day and the weight goes on, well it’s depressing, to say the least.

I never thought that once I knew my future that one of the things that would be high on my list of things that make my life hell, would be something so simple and every day as weight. Life really is a funny thing to try and live.

 

Please read my blog from 2 years ago today – 29/05/12 – The medical quandary 

Medication is almost as difficult at times to handle as the illness is so I agree totally with the title to the above picture. Although I constantly say you have to listen to your body I do when it comes to medication find myself waiting, just as it took me several weeks of increased pain to call my GP yesterday and discuss again the options. The only med open to me now that can be increased is the Oxycontin, I have been on it for several years now and I am taking 30mg……

Flare of phase?

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Just an hour ago I was in agony, so much so I was on the verge of calling the doctor. I don’t know what caused it and all I can do is put it down to my MS, but the pain was blinding and tears were rolling down my face. I had just come back from the kitchen and sat down when suddenly from nowhere it started. My entire left side from just below my breast to touching my waistline was from a couple of inches from my spine to the centre of my ribcage was screaming at me, not as in a cramp or spam, but just blinding pain. I couldn’t take a breath but I knew that I had to relax and breath through it, taking time, to let it clear, which it appeared in no hurry to do and when I did eventually take a deeper breath as I needed to, the whole thing upped its game. Luckily I keep some of my booster pills right here at my PC so I took one and returned to controlled shallow breathing, before the time it would have taken the tablet to work it started to ease, I remained still just breathing and letting it do what it had to. It took a full 15 minutes to ease off enough for me to start to breath more normally and another 20 to drop to a level that I could get on with things. That was now 2 hours ago and I am still in pain, more to my back than the front and side but still there, still reminding me every few minutes, that it happened.

I can’t for the life of me work out what caused it or what it could be other than my MS, so I am left in the dark having to accept it was a spasm like none I have had before. I don’t understand why in the past couple of years my MS has become so fond of attacking my upper body. For years, it was purely my legs and arms, but now that it has found that I actually have a body to go with the limbs and brain it had already discovered, it is having huge fun finding out just how much it can really do. I can only guess that just as my limbs, the true damage is in my brain, as whatever happens it is always worse on my left side and it also spreads to other areas once triggered. Today it moved upwards to my armpit and down to my groin, not as bad as the central point in my side but it still spread, if it were pain from something inside me at that level I don’t think it would have spread, it would have stayed just where the damage that caused it was, that is why I worked out it had to be my MS. It is the first time thought that I have ever considered calling for help, the pain was really that bad that I just didn’t know what else to do, but I am glad now that I didn’t pick up that phone and scream for help, as I would have felt so stupid by the time it arrived. It has though left me wondering just how long do you put up with pain before you do call for help, half an hour, an hour, longer?

Yesterday was a special day, it was shopping day and it was a special shopping, well for me anyway. It was the first time in my adult life that I didn’t have included in my shopping at least one carton of cigarettes. I know that doesn’t sound much, especially when I add in that my cigarette draw still had over 50 packets in it but it usually is kept all the time at between 80 and 100 packets, if for some reason it drops below 80 I used to start worrying, if it feels any lower I would panic, even when I was fit enough to go out and buy more. I needed to know that my backup supply was fit and healthy enough to cover all possible situations, like them, not being delivered one fortnight, or my going into hospital and needing a supply here, for Adam to bring to me. So to me this is BIG news and something I was both surprised at and happy about, because of my new e-cigarette, I was totally at ease with the idea of not ordering any this fortnight and I am totally at ease with the idea of letting my backup supply drop to between 20 and 30 packets. I honestly never thought I would see a day when I wouldn’t be panicking about not having a huge supply just in case, I suppose all I need to do now is buy several more bottles of nicotine oil and stock them instead. I still don’t see me stopping smoking, but I have stuck to just 10 a day now quite happily, as even now there is something special about those little sticks of burning leaves that I love.

I just had to take a ten-minute break there, as the pain returned. Just as the first bout it started in my side and back and spread out from other upwards, more towards my armpit, I guess today is going to be one of those days, a day when I am just going to have to go with it and get through it. What with the other day being racked with mad sensations and now this, well I am now thinking that I am possibly in another phase of things getting worse again. It is really hard to ever pin these things down, I suppose if you have relapse remitting MS, it is easier as anything like this would be put down immediately as a relapse, but when you have progressive relapsing MS, it is a lot harder. When does progression turn into a relapse and when does a relapse return to progression? Personally, I have always been content to see things as phasic, my health seems to travel in waves, not recently have I felt that things were that bad that I needed to attack my body with steroids, the only answer they ever seem to come up with. I try hard to not ask for them as they really screw everything else up and finding a chemist who will just fill the prescription without a days delay for them to speak to the doctor to confirm the dose, seems to be impossible. The dose is normally 10 times what would normally be prescribed and I have to take them for at least a week, honestly, I feel worse on them than I ever did when I was on chemo.

I don’t know how I would be if I had called for them more often and there is no point even thinking about it, like a lot of things in this world you can only do what you think is right at the time and there is no point kicking yourself afterwards.

 

Please read my blog from 2 years ago today – 28/05/12 – Finding the path to content

Over the last few weeks I have been suffering with increased pain in my arms and legs, I think I have mentioned it several times in recently but I keep putting off calling the Doctor as I really wasn’t keen on upping any of my meds really. It looks as though I am going to have to give in and make that call. The whole of the weekend and again this morning the pain is just silly, I can find no relief when either……

Understanding OK

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It seems the slower I get the faster my life is moving, just a couple of months ago I was really impressed and blown away when I was receiving between 80 and 100 new followers a day on twitter, I said then it had taken a sudden upturn, well it has done it again, with over 200 new people joining me daily. I am always tempted to sit and analyse the people who join me, but I fear if I do, that I will start to make changes to what I do, in an attempt to please more people and that I know would be a huge mistake. If there is one thing that I have learned and learned slowly is that trying to please people gets you nowhere, in fact, it always eventually backfires and leaves you floundering. I remember when I was a child I didn’t have many friends, I wanted so much to be like others that I would try to be like them, it drew in a few friends for a short time, but I always blew it at some point by saying or doing something that just proved how different I was from the rest of them. So I never had those huge numbers of people around me that I saw in the playground daily, I was the one sat on the steps either alone or with just one other.

I am sure that no parent sets out to make their child’s life miserable, but my parents managed it with a skill that I have never seen equalled. There were so many rules, so many things that I wasn’t allowed to do and so many things that I had to do, even if I didn’t want to, that I now remember my entire childhood until I was 13, being overshadowed by the feeling I was inside a box looking out, desperate to escape, desperate to even breath. Everything about my life, including my first marriage, was all about appearances, I swear that the TV show from the 80’s “Keeping up Appearances” was inspired by my family, but they softened it and made it funny, as no one would have believed the truth. It took me a really long time to understand that you can break out from however you were brought up and have a real life away from the past, I have written several times saying that I feel I have had two childhood, two totally separate lives, just today though it struck me all as so ironic. Here I am housebound, but I have at last managed to have that circle of people who want to be around me, who are drawn in by what I say and do, some stay, other go, but the there are now more than I ever dreamt possible. Life is more than a little nuts, it is truly insane all too often.

Yesterday one of the people who have been following me for a while decided for the first time to read some of my blog, they aren’t ill themselves, but have a friend with MS who doesn’t really want to talk about their illness and like most of us when asked how they are, answers with just “I’m OK”. The tweet I received expressed how different the world I live in is from the life they lead, almost as though we live on different planets. I often describe it that way myself, but having someone who is fit and healthy enter my world and pick out so quickly from just a couple of posts the differences and was left stunned by the alien concept of living life in constant pain, proved to me yet again that the majority of people have no idea of the truth of our lives or how little the medical profession can really do for someone like me. It also proved to me that I need to keep going on, that I need to keep pushing the message out there on Twitter about what life with chronic illness really is.

“I’m OK” is the stock answer that most people give when asked how they are, even when I know that the person asking is actually truly wanting an honest answer, not a stock one. I know all to often it take Adam to read my posts before he really knows how I am feeling that day. Yes he sees it, but I am now incredibly good at covering much of it up, actually I am going to correct that, it isn’t about covering it up, when you live with something all the time it becomes normal, I don’t stand up and walk without knowing before I move, the pain that I will be in once I do. I don’t act, I just do. Adam sees me daily, he now knows from the way I sit, walk or even speak if I am struggling or if things are just steady as they always are, but he knows that asking me is going to get the “I’m OK” response. I have nothing to hide from him, he probably knows more about my body and health than most husbands do about their wives, most wives don’t pour every thought, every feeling, into a blog for the world to read. The “I’m OK” is said not to hide but to protect, I have no desire to distress him further than he already is by my health, finding out the day after, is less disturbing than at the time, by the next day it is clear I have survived it, so nothing to worry about. I think it is fair to assume that the majority of people who live this way, don’t want to distress those they love or care about, most of us still want to protect them, even if we can’t protect ourselves. Adam never accepts me saying it once, or even twice unless I am looking him straight in the eye as I talk, what he doesn’t get is that protecting him is one of the few things I can still do and I will until I can’t do it anymore. Telling him the truth at the time would achieve nothing, he can’t do anything about it, he can’t take the pain away and all he will do is worry, so I don’t lie, I tell him the truth, “I’m OK”, proof, well I am still alive.

 

Please read my blog from 2 years ago today – 27/05/12 – The game of MS

There are days when the world seems a bigger and brighter place. No, I’m not trying to be sweet or cutesy, but those days when for no reason there is a general good feeling about the new day. Being ill doesn’t mean you have to be depressed and or depressive. I can see how some people get drawn down and find themselves drowning in pain, grief and self-pity, I am not saying…..