A secret, I can’t keep

Despite the fact that Adam is on holiday this week, I am going to be on my own today, he is going to visit his Mum. I know that it sounds terrible, but this to me, is one of the good things about being housebound. Don’t get me wrong, it’s not that I don’t want to see his mother, it’s the fact, that she lives in the middle of nowhere. To me, nothing is worse than being stuck on a bus for hours. I have never been a great traveller, I hate buses as much as I hate cars, you sit down and that’s it, your stuck. Condemned to sit there, over miles of boring countryside, that looks just like all the countryside you have ever seen before. Travel was never high on my list of things to do. For some reason, I have never fully understood, I actually used to enjoy being on a train or even a plane, the problem arose, when I reached my destination. All I wanted to do, was go home and that feeling didn’t change, even when I was somewhere I had chosen to go. I don’t know what started it, all I do know is, it was there within me, from childhood on. I would almost say, that I was born this way, as I can’t think of a single occasion or event that started it. No matter where, or how long I was due to stay there, be it hours or days, I just wanted to go home. I went off it even further, the day they said that you could no longer smoke on a bus, train, or plane. That for me was the final straw, I haven’t left Glasgow, for any reason, ever since.

I guess, we all have things like that, that are almost part of our DNA if you like. It doesn’t matter what we do, or what happens, we just can’t change them, nor can we find the real reason for them. Oddities, that have always held us apart from others, but feel totally natural to us. I know for a fact, that if I said “I hate going away on holiday”, others always looked at me as though I had fallen off a Christmas tree. It is one of the things that I have found totally wrong in this world, that we are made to feel like an alien, just for being ourselves. This example is a truly minor one, I could have chosen several that I personally have, but thanks, to Adam, this was the relevant one to today. That, though, doesn’t actually change the core element, it set me aside and made me feel odd, but only when others knew about it. In some ways, there is a clear parallel there with living with an invisible illness, it can be our secret, or we can tell others, but at what cost. It is for some, I know, a huge soul-searching time, do you tell everyone, anyone, or no one?

I didn’t have to think about it at all and that is the absolute truth, I didn’t question it, not even once. I had nothing to hide and nothing to be embarrassed about, I was quite simply ill and it wasn’t my fault. I didn’t just tell those who needed to know, I told those who I thought should know. When you are told that you have a totally unpredictable illness that is also progressive, it means that unless it is a fleeting relationship, people will notice something. You could argue, that it is no one else’s business other than yours, but surely it is less embarrassing, just to be honest. I went to work the day after I had my full diagnosis and didn’t just tell my direct boss, I told those I considered to be my friends and my staff. I also told all of them, that I didn’t want it to be a secret. I preferred that people knew that the reason I might be staggering down the call center or suddenly lying on the floor wasn’t that I was drunk, and if I did fall, that I would appreciate a hand back up again. As time went on, I also saw it as a great way of teaching those in the company about just what PRMS was and what it did. When a couple of years later I had to have the chemo treatment, Mitoxantrone, I sent a company-wide memo, asking people to stay away from me if they had a cold, due to my weakened immune system. Outside of that period, they all knew they could ask me anything at any time, I was quite happy to talk about it. There was one huge change within the entire company that I noted and documented, the sickness level fell. Firstly, it was me, that the call center staff had to speak to if they weren’t coming into work. It’s hard to call up someone who is clearly far iller, but still at work, and say your not going to be there that day. Secondly, that effect snowballed. Just having someone around who was not being beaten by illness, does make people think twice about just how ill or not, they really are.

Outside of work, I was just as free about talking about my health. Anyone, even total strangers, I had no problem saying what was wrong, if there was a need to. Once you are in a wheelchair, well that need diminishes as it is no longer invisible, but it is then, that I found more people asking. I suppose if you still look reasonably healthy, people do wonder why you are on wheels. There were many occasions, where I found people looking at me in a way that I could see the question in their eyes. I would always smile and tell them that it was OK they could ask, or if we were already talking, I would just bring it into our conversation so that they didn’t feel rude. To me, that is the way to deal with it. If we, the disabled, want understanding from the public, we have to be ready to give it. It is human nature to have questions, to have the need to know, we are inquisitive creatures, especially children. I have had several odd questions from them, one I remember clearly in a cafe when I had my nasal gastric tube. On that occasion, I even landed up taking my spare tube out of my bag. She wouldn’t believe how long it was, so I showed her how the two matched against each other and explained the missing piece was deep inside me. Her mother, well she had been doing what grown ups do, telling her daughter in a whisper, not to stare and not to ask loud questions. I just wish, her mother had felt that it was OK to question.

I can, though, fully understand why some people choose to say nothing, for as long as possible. Some will just feel that it is personal, that it is their business and no one else’s. I can see that, but what happens when they do suddenly slur their speech or can’t walk properly? How long will it be before they are forced into telling them anyway? Aren’t their colleges and friends going to feel bad, that they didn’t feel that they could share such a thing? Personal, to me, is fine when you are talking about things like finance, but any health condition that is bound to show itself at some point, can’t be personal forever. I do understand it, but I believe that it is littered with pitfalls and it’s only a matter of time before it’s out of their hands. I don’t know how it is in other countries, but if it is a case that they fear they might lose their job because of it, well that can’t happen in the UK. The law is quite clear, you can’t be sacked because of your health. The company has to make appropriate changes to your work and workstation so that you can carry on working in safety. That includes, regardless of cost, buying new desks and chairs, putting in ramps when required and a lot more than anyone thinks. It can cost the company thousands, but they have to do it, it’s the law and mine did.

What we tell people is up to us, but it is something, that needs thought. I was perfectly upfront with much of it, but yes, there were some things that I kept to a select few. Discussing the use of catheters, or the loss of libido, weren’t the sort of subjects I was going to bring up with the sales team, as they say, too much information, but the more general things, well I had and have nothing to hide. Some conditions clearly can be hidden if that is the person choice, but I would urge everyone to think carefully, there are pros and cons to either side of the argument. Our health can be isolating, to volenterally isolate ourselves futher, seems an odd thing to do. Even if my condition had held a social stigma to it, I like to think that my reaction would still have been the same. In fact, I think, that I might actually have been some what forceful about telling people what was wrong with me, as my duty to teach, would have been felt even stronger. To me, education is a wonderful thing, whether you are the student or the teacher.

Please read my blog from 2 years ago today – 22/10/2013 – It’s a day

Pain took hold of me yesterday afternoon and destroyed my plans for the rest of the day. I had been going to have my nap earlier than normal so I could then….

Big steps, huge questions

I tried yesterday my idea of making pancakes out of the Psyllium and it worked really well! Much to my surprise the taste wasn’t too bad and by using salted butter, a really small amount, to cook them and a tiny piece on top to melt into them, the tasted wasn’t perfect, but perfectly edible. I made just three small pancakes about 7 centimeters round and half a centimeter thick, in total they containing about half the dose the doctor recommended, with an equal amounts of flour, one beaten egg, and some milk to make a really thick batter that sort of drops of the spoon. As I didn’t have any self-raising flour, I tried plain, which made them a bit heavy as beating in the air was hard work. I now have the right flour, so today I am going to make a double batch and try putting half in the fridge until tomorrow, I am a little worried that they might turn to rubber, but without trying I won’t know. I know the plain flour didn’t help, but they were a little heavy and very filling, I couldn’t have managed another mouthful if I had tried. I was also full for a long time after, which for some people might be a good thing, especially if they are trying to watch their weight, Psyllium could be a way of curbing appetite whilst doing their insides good as well. Anyone else who is going to try the pancakes, remember to have plenty to drink with them as the Psyllium will continue to draw water into itself even after cooking and eating. At the moment, it looks as though pancakes will be on the menu daily, but in time I am hoping that I can also come up with some other ideas that I didn’t find online as most of them didn’t really appeal. I do now also have the ingredients in the house now to try the milkshake idea as well, as I will need variety and if I am going to feel so full so quickly and a way of spreading it out over the day as I severely doubt that I will manage the whole dose in one. I will, of course, keep you updated with the possibilities and the results, which so far other than feeling full, are zero.

Diet for me has been a problem area for many years now, with my body so anti-food, but my weight still rising as I can’t do anything but sit around like a lump of lard, what and when I eat is a constant puzzle. Changing my diet totally, as that looks as though is exactly what I am going to have to do, isn’t exactly filling me with excitement. The hard thing is getting enough of everything I need to stay alive, out of the limited things that I can or want to eat. My appetite is tiny so I have developed a habit of grazing on something different every few hours, which doesn’t fit with filling milkshakes, pancakes and large quantities of liquid, which are filling on their own. When you are still mobile you never really think that closely about what you eat, even though we are supposed to. Yes, I didn’t eat certain things out of likes and dislikes, but also because I knew that tucking into burgers and fries isn’t exactly going to do anyone’s waistline any good. Being active though actually means that we can eat a lot of things that we shouldn’t and get away with it, being sedentary, not just sitting in an office, but truly sedentary, every single thing you eat just turns into fat that you don’t need. I even went as far as checking the calories required by someone in a coma and was shocked to see it is the same as someone on a diet, I was shocked as my calorie intake was below that already and the weight was still going on. I was left with one conclusion, I had to try different things until I found what worked for me. In the last 18 months, my weight has actually gone down a little and I do mean a little, as over that time I have lost half a stone so my fears of what my new diet will do to me, not just health wise or how my PRMS will react to it, I believe is a very fair concern.

This isn’t the first time that I have had to deal with something this complex on my own, it is something that has reared its head throughout my illness. I was very aware the other day at the hospital that the doctor I saw was shocked at just how little help I was receiving, even from those who were supposed to be there to help me. It is a problem that I have found over and over again, the so-called experts aren’t experts in anything other than the average. If you don’t fall into their limited range they all just group together and tell you to listen to this or that doctor, it’s almost as though they fear going against your revered medical advisor. It didn’t matter if it were the continence nurse, district nurse or the MS nurse, their answers were identical and simply didn’t work for me. It took one doctor of a higher rank in their club to say stop it all, this is pointless let us look at it from a different angle. Similar things have happened before to me so I know already that all the rest will now fall into line to back him up, like little soldiers they will take their commanding officers words as the new bible and they will just repeat them, without the slightest personal knowledge what so ever. I know that medicine is a huge field and no one can be expected to know everything, but I am finding more and more that their lack of knowledge actually outweighs what they know. It is bad enough when you have just one condition, but as soon as your health becomes a complex mix of different conditions, the knowledge of how to care for you goes out the window.

The odds say that somewhere out there in this huge world, there will be someone else with my exact mix of conditions, the chances of finding them is nil, finding a doctor who has successfully treated someone identical to me, is even less, so I like so many other people am on my own on working out how to care for me. No one, not even the doctor who started me off on this path of finding something that will help me deal with the complex mix of dead and overactive nerves in my guts, actually knows what will be the thing that will make the difference I need to make life good again. I might be doing exactly the right or wrong thing for my PRMS, but is it the right or wrong thing for my Fibro or my COPD, or will it upset one of my minor conditions, all I can do is cross my fingers and hope. The medical profession can’t help someone like me, I may keep turning to them because I am at a total lose and I may as I was this time be lucky to find someone who listens, but that is what it will always be, luck. I don’t believe that they don’t want to help, it’s just they are at as much of a loss as we are, but the good ones, well they at least try and even if their trying is nothing more than a list of possibilities, well that is a million times better than nothing at all.

I may not be in a coma, or be the size of a beached whale, but nutrition is so much more than just keeping ourselves alive, as it has to be enjoyable, if it’s not, we give up. If you want proof of that, well just look at the millions of people who are morbidly obese and the long lists of failed diets that follow them. Even when our very lives depend on it, we would rather eat what we shouldn’t, than eat what we know we should if we don’t like it or if for some reason it is not right for us. Bring all these things together and you are at the start of the battle that I have just entered, nothing is as simple as saying do what the doctor says, especially when the doctor is talking rubbish and almost as hard as when you know he is talking what possibly might be the right answer. Right now I have hope, that alone is bolstering me and making my doubts and fears seem small, but I know without a doubt that I have to be aware of them all, as it takes seconds to make my health worse and months to make it better.

Read my blog from 2 years ago today – 22/05/13 – Relief from my body

As a day, yesterday turned out OK after my shock of my online electricity bill, it just shows how what you imagine as a nightmare can be changed totally but how your phone call to complain is handled by their customer service staff. Having worked in call centers for years, I know how hard it is not just for the companies to find staff like that, but for staff to remain positive and helpful through the entire day. There is always a knock on…..

Naïve

One of the things that goes hand in hand with living with most chronic illnesses is they are totally unpredictable, one day or even hour can be totally different from the last. This one annoying fact I think is responsible for our lose of friends early on in our illness, before all the other reasons they disappear come into play. I can remember quite clearly how after not showing up for a couple of leaving do’s for work, that the invites from those around the company, other than my closest of work friends quickly dried up, people just stopped asking me. I’m sure they like me were fed-up of hearing the “well I can’t say, but if I can, I will” line, followed by no sign of me at all, other than a message sent to say sorry. It is so hard for those who don’t know anyone who is ill, to get their heads round just how up and down our lives are, or how impossible it is for us to say even a couple of hours earlier if we will be able to come back out for the evening. I am sure that all of us who are ill have equally felt guilty about letting people down, or having to miss another night out, just because we are ill, doesn’t mean that we don’t still want to be part of the world. For me saying no to a party, hasn’t been an issue for a long time, these days it is more a case of doing the things that need to be done, without loosing the energy to complete it, before I even start. All those early issues seemed so huge that I honestly thought that I was having a really tough time, I couldn’t see then just how mild and how tiny they really were, to me I had every symptom and surly that was as bad as they would ever get, being naïve is something I have always done with great skill and style.

Like most people these days as soon as I had my diagnosis, I was on line reading everything that I could, 13 years ago, there wasn’t a huge amount out there, these days, well type any illness into Google and pages appear one after another, filling the screen with a bewildering choice of view points. When I first looked there were a few medical sites, but mainly the info came from amateurs, like me, but to my disappointment now as then, is too many of them put their information in a medical format, which is something that totally fails to tell the true story. So it wasn’t surprising that I could sit and tick off every symptom and come to the conclusion that I had the lot, but as I said a couple of days ago, every symptom changes, even pins and needles are now nothing like I had had ever before in my life, yes a symptom, but intensity changes everything. I am totally sure that right this second there is someone somewhere in the world sitting post diagnosis of what ever, ticking their way down a list, without the slightest understanding of what their future really holds. I for one, would have loved to have come across something like my blog, that told me everything without holding back, well I wouldn’t be writing it if I had, but I am equally sure that there are some who might find life easier at that stage not knowing, for some naïvety is a blessing.

It wasn’t long after I started on twitter that I ran head long into a person who had set herself up as the person with all the answers for those with MS. A question had appeared to which I gave my blunt to the point answer, you would have thought that I had answered telling the person to go and commit suicide, when all I had said was simple to the point truth. She went for me, sending tweet, after tweet and me being me, I answered every one. I was trying through out to calm her down and to make my point, an hour later, she became the first person I had ever blocked. Which of us was right was never established, should it be her 110% sugar coated pill, with a cuddle attached but not answering the question, or my to the point, sorry, this is the way it is, but don’t let anyone push you around approach. The person who asked the question still follows me, I have never asked if she still follows the other person as well, it’s not my business, nor have I asked her which advise she felt helped her the most, as the poor girl felt so bad about the whole thing. I guess the truth is we all go out there and stick our finger into each pie, until we find the one that we like best and that is where we take most of our information from, keeping the others around, just in case we don’t get the answer we want from our main sources.

Is there ever a right or wrong way of answering or passing on information about something so personal as health, well probably not, what there are millions of options on, is the type of person who is asking the question and what they need at that second. From the very first email that was sent, the fact that people can’t see each other and read into things, things that simply weren’t what the writer intended was clear. Sometime writing is a scary responsibility, what I say daily could be read by anyone, I don’t know their mental state, what illness they have or if they have the slightest understanding of who I am as a person. I have often feared that something I might say, might just lead someone to accidentally or otherwise, do some harm to themselves, especially when I talk about what I have done and survived, without realising it could be dangerous. I know that I repeatedly say, “I am not a doctor”, but all to often I know people also say when giving advice to others “I read it somewhere” as though everything we read is nothing but fact, advice is probably the most dangerous thing we ever give, but I am going to give some…….. Naïvety is a blessing only to those who are scared of, or aren’t capable of, understand the truth.

If you are recently diagnosed with any condition, find out as much as you can about it, at every stage, not just from doctors or medical sites, but from as many different sources you can. Read about it, talk about it and arm yourself with all the knowledge your brain can hold, even if like me you might forget most later. The more aware we are of what lies ahead, the better we will be at dealing with the now and making our futures as comfortable and manageable as possible and I’m not just talking pensions.

Those who read my blog regularly know all to well that I am still working my way through the whole process, still trying to work out what is happening, what is right, wrong or something else. All I can ever do is write about what is the now and what was the past, the future is still waiting to be discovered, I wish I wasn’t so naïve about that, but I still can’t find out the facts about any of it, we are learning them together. Today I am tired, in pain and wishing I didn’t have the shopping arriving in the next hour. I am also wishing that my diaphragm would let me take a full breath and that my guts would stop hurting and that I hadn’t watched “Holby City” last night, great show, just a little to graphic when your guts aren’t working and they happily removed someone’s as thought it was nothing.

 

Please read my blog from 2 years ago today – 26/11/12 – Dealing with business 

Well this wasn’t the start to the day I had expected. I was woken at 6:10 by Adam doing his pig impressions and gave up trying to either shut him up or of any chance of getting back to sleep, so I got up and started my day. Adam eventually got up and headed…..