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….

Making a differenece

I must have suddenly hit that age, or there really are a lot of desperate people in need of money or wanting to come to the UK. In the last few weeks, I have been hit by so many men on Twitter declaring their undying love, on their first or second tweet to me, that it has quite simply become funny. I guess they look at my picture and read my bio and think here is a target, someone perfect for scamming. I have had the odd one or two in the past, but the numbers have just shot up recently. Yesterday, I think I actually hurt one by accident. He wasn’t like the rest, he had at least taken the time to send me about 15 tweets a day for over two weeks, all in response to one of my tweets. In fact, adding him in as one, I think might be a little harsh as I wasn’t even sure if he was male or female until yesterday. No, I wasn’t being thick, but a foreign name and no avatar make it very hard to work out at times. Last week I started to wonder if my friend was looking for something else, but I couldn’t be sure. Then yesterday, I answered a tweet from him and in it I mentioned Adam, I suddenly received an apology for being friendly with me and promise not to bother me again. He had said one thing I took with a pinch of salt last week, that he was planning to come and see me, and that turned out to be what he was apologising for. People say all kinds of things, something like that felt very unlikely to ever get any closer than just those words, so I had ignored it. In fact, I had totally forgotten it had even been said. Now I feel guilty for just being friendly with someone on the other side of the world. Social media has created this mad world where what we do and say, isn’t like anything we would ever do in real life. A couple of generations ago, you wouldn’t have spoken to anyone without a social introduction, now we not only do we talk, but say the most outrageous things and even personal things, without a second thought.

I have frequently said that if there was one quick and economical way of helping people who are disabled, have a chronic illness, or mental issues and the elderly, is to put them online. What it would cost a health authority is minimal by the saving they would gain from the less frequent visits to doctors and hospitals. Social media is a gift still waiting to be tapped into by those who would gain the most. Loneliness is a killer, and I for one don’t think I would be dealing with my health so well if it wasn’t for everyone that I have met here online. Well almost everyone, there are a few that I could have managed to get on perfectly well without, but the good ones, they out number them with ease. I can say with surety that the majority of issues I have had online have been brought about because of my high number of followers and people that I follow. The numbers alone bring in a degree of nutters, a number of scammers and some, well some that shouldn’t be online at all. I can say that with surety as I didn’t even notice them until my profile level was up over hundred thousand followers, then they all started to appear in droves. To the average user, this place is a godsend and should be utilised for it’s benefits.

When you live with a memory like a sieve, trying to hold multiple conversations with people all over the place is hard. I do try to remember all their personal stories and their reason for being there online, but it’s hard. Just as I am useless with names and faces, I am useless with small chat details, especially when people vanish for weeks and then suddenly reappear as though we were chatting yesterday. It is a difficult world to keep hold of, even more so when they suddenly change their avatar, which was at least a clue to me as to who they are. Trying to remember of a hundred thousand individual and very different followers, is impossible, yet some seem to expect me too. I love my online life and all the people it has brought into my circle of reach, but I can see that it is going to get harder and harder as time goes on, to just make sense of it all. One of the reasons I gave up on Facebook was because people had different names and avatars from twitter, but they expected me to keep track of it all. I couldn’t and it made life harder than I could deal with. Don’t worry, no I don’t intend to give up on Twitter, but please be reasonable when dealing with a sieve and accept a simple fact, you or part of you, might have fallen through one of those holes, not intentionally, but because it just happens.

To date I haven’t tried to use Adams smartphone or even a tablet, I am still content to be sat here with my beloved desktop computer. I have though thought about making a change, not yet, but in the future. With my legs slowly going, I can see the day will come when I can’t clamber out of my chair and make my way to the otherwise inaccessible office space. It appears to me that technology may have actually come up with a new form of computer conveniently at a point in my life that I may need it. I have to say I was totally against them at first. Clearly I wasn’t the only person who looked at them and spotted a problem, everything about them was too small. I have noticed that they are slowly getting bigger, which might just mean that my overactive fingers tips might be able to actually to touch just the thing I want, not ten others at the same time. The only thing that worries me is that I can’t actually go anywhere to test run any of them. It will be a case of pot luck if I choose well or not. The internet may be here for me, but finding the correct access point to match my health needs, is far harder to get. Although I now have little doubt that it is out there somewhere.

In some ways, one of the beauties of being online for many I am sure is the fact that they can be totally anonymous, especially if they have a disability. Suddenly, online all of that can vanish and they are just part of the community. No one has to say anything about their health unless they want to, I can see why some find it a wonderful freedom. I chose to be upfront and totally open about everything and I know that is what draws many to me. They know that what I say is true and that I at least believe every word to be accurate. But that actually puts a pressure on me that I never expected and it was worse on Facebook than anywhere else, people ask me for advice. I have frequently been stunned by the some of the help that I have been asked for, as though I am an agony aunt and one with a knowledge of every single thing in the world. I have lost count of the number of times that the words “I know you will tell me the truth” has been in a tweet and 99% have nothing to do with health. I guess all of us find ourselves in places we don’t expect to be, but this one really bemuses me, as I am just an average person who has spent the last 8 years indoors. What do I know about the outside world? Nothing, any longer.

Although I can understand why some might want my help, for the life of me I can’t understand the next oddity that being online has brought me. Of all the things I expected that being a high profile person online would bring my way, not once did I expect to find myself almost daily sitting looking at a single part of the male anatomy. I’m sorry, but I just don’t get it? Why do some men think this is the way to get attention positive attention from a woman, disabled or not? All it gets from me is a quick report to Twitter, followed by being blocked. After just over 3 years on Twitter I have in the last 18 months been bombarded by tweets and follows of this nature and trust me, it’s not what you want to see while sitting eating your breakfast. Equally, neither do I want to be staring at the female equivalent. I have over the years heard on the TV that there is a huge issue with porn online. I can confirm that and add that you don’t have to go looking for it, it presents itself over and over again. Yesterday alone I blocked 15 Twitter accounts.

I don’t think that I could be happy if I didn’t blog and tweet. It is now so much part of my life that being without it for even a day would leave me at a total loss. I have completely replaced what the outside world gave to my life, but being here. I doubt that when the world of social media appeared that anyone who was writing the programmes even once thought about the housebound and disabled. I doubt that we were even a flicker in a dark corner of their minds, but this has been as of much of a positive impact on my health as my meds are. I once feared that being housebound would bring an end to my working life. It wasn’t I just moved it all online. When redundancy and not being able to find a single company interested in employing me, despite thousands of emails and applications all done online, I joined the world of social media. Computers have been in my life for the past 19 years, in ways I never once expected or thought possible and I can see them now being with me to my final days. I don’t normally envy people at all, but I do envy the generation now growing up, as they have the power of the world at their fingertips. Throughout their lives, they will naturally live within two world, connected in ways that we can only now imagine. Should one land up like me housebound, I doubt their lives will skip a heart beat, their lives will just naturally go on. I know I am lucky, I am the first generation still heading into this bright new world where acceptance is automatic and apart from those with a desire to show off their most unattractive attributes, I love every single one of you and thank you all for letting me into your lives.

Please read my blog from 2 year ago – 20/09/2013 – Reaching the world

Another day another post and what happened to the rest of this week, how on earth did it get to be Friday? It has been one of those weeks when I have slept so much that I actually feel as though someone has stolen a couple of days from me at the very least. I don’t suppose it really matters but…

Relearning the past

One of the first things you learn about chronic illness is, no matter how rotten you feel, life has to go on. It’s a hard lesson and not one that ever get’s easier to live with, in fact, it actually gets harder. For me, I’m not sure if the way I learned that lesson was harder or easier than it is or was for others, no one believed me that I was ill and with my husband constantly not there, either because he was at sea or studying for his next step in the Navy, alone was where I always seemed to be. We lived all over the country, moving every few years but always hundreds of miles away from my or his family, not that that was a bad thing, as none of them believed me either, but with two small children to care for, well their belief was clear, I was Mum and I was on duty 24/7. Being ill with what they think now was RRMS back then, meant that life was tough and I didn’t feel like I was able for much of it, to really be the person I needed to be, but I had no choice about who I had to be and what I had to do, I just had to get on with life. I expect that if you were to sit down a 100 people with chronic illness, that most of them would agree that at first when you don’t understand what is really happening, that it is hard and you push yourself to keep up with everything as there was no clear sign you were really ill. It’s not like getting the measles, then you have a nice red rash and a fever, most of us just have a collection of symptoms that don’t make any sense, so you push on with life and living. To be fair, it was a good lesson to learn as it meant that I pushed on and lived my life to the full, in some ways not being believed worked in my favour as I doubt I would have done many of the things I did, if the truth had been found back in 1982. The only problem with living that long to a plan that was worked out that long ago when I actually had what is really a different condition in many ways is now starting to cause me problems.

Since my MS changed to PRMS and my health had deteriorated, keeping myself going is getting harder and harder. I have taken so many of the steps needed to stay as well as possible totally unguided or helped by others, just by working through it myself and setting my own standards and expectations all along the way. Each milestone had pushed me just that bit further away from living an average life and finding myself housebound 8 years ago felt as though not much more could really happen to me. With hindsight, I can see clearly that my health has still been slowly working its way downwards since then, but in many ways, I didn’t feel it happening. Yes, the COPD diagnosis and the 2 year battle with my bowels, which by the way are still not working, was a kick in the teeth, but other than that I thought I was doing really well and staying more or less level. Hindsight tells me clearly that the person sat here now, is a shadow of the person who was sat here 8years ago. This isn’t just because things are bad just now, no this started 8years ago, when I put a wall around myself and told the world that I was going to survive and things just wouldn’t get worse, but they have, I was just doing what I always do, bravado over where I was and defiance of the future, I’ve become an expert at both. 8 years ago I wasn’t filling myself with Morphine every day or sleeping for 12 to 13 hours out of every 24, I wasn’t unable to remember when to take my pills or to take a shower, I didn’t need to have anyone do anything for me, I was still a whole person with a whole life.

Being housebound changes you more than you realise, it is like everything else in life that happens to you, it is so gradual that you don’t see or feel it, but we all change just a little every day. Add in a medical condition that is eating you alive and restricting everything from your body to your mind and it is clear to anyone that I have changed a lot in those few years. The last few days of feeling hellish have made me admit to myself that this has been building for quite a while, which means it isn’t a flare, flares by their very names appear suddenly with dramatic effects, from their mildest of being so ill you can’t move to their extremes such as not being able to coordinate your breathing, speech and swallowing, or a limb suddenly stopping working, this isn’t a flare. Nor is it what I keep saying it is, one of my sleepy phases, this is far deeper than just fatigue, yesterday’s disastrous shower told me that. My breathing is difficult, not because of my lungs but because of my diaphragm and my intercostal muscles, both conspiring to make deep breaths painful, They are no longer just painful to the front half of me, they now plague me all around my body, putting more and more pressure on my internal origins. I feel as though I am wearing some kind of odd corset as somehow it is sat behind my breasts as the pressure isn’t felt in them at all, although the pain I have to their sides and into my armpits is almost as permanent as my guts being tied in knots. Right now, if I could exchange my upper body with one that worked, I would be most grateful. Nothing I am feeling today or yesterday is new, every single pain, pressure or effect, is one that I have already been living with for months, just all together and all worse, this is not a flare, this is progression, the same progression that has slowly been happening for the past 14 years, that we know of.

I know there is no rhyme nor reason as to what is happening right now, this is PRMS, what do I expect, a 10-page form in triplicate asking permission, it does whatever it wants whenever it wants and I should know that by now. Yes, there has to be a reason why so many things are suddenly going nuts at the same time, and that reason can be as simple as bad luck. 8years of being housebound has taught me a lot, but it seems I had forgotten the first rule of PRMS, adapt as fast as you can or you will be run over. It appears that the future is closing in on me, I can only hope that this is just a glimpse of what is to come and like all phases it will settle, but as I enter my 6th day in which I feel worse than the one before, well all I can do is hope and push gently to do what I can today, just as I normally do every other day. You can’t ignore PRMS, but you can do a very good impression of it if you just try.

 

Please read my blog from 2 years ago today – 4/03/13 – A search for dignity

Over the weekend, my arms haven’t been too bad, a lot of tingles and some mild spasms but I managed not to drop anything or to loose control over them. I was reminded on Saturday night of a sensation I have never written about nor has anyone asked me about it, but I am as sure about this……….

The loneliness place on earth

Loneliness is something we have all felt from time to time, its part of life, but when you are ill or even housebound, there is a new loneliness that appears and it has nothing to do with having people around you. Being seriously ill, especially with a rare condition is a loneliness that it is hard to find the right words for, as you feel as though no one on this entire planet is feeling just as you do, that there isn’t a single human soul that can truly understand what you are going through. For me being housebound isn’t something that makes me ever feel lonely, being ill with PRMS, is often the loneliest place on earth. I know that MS along with many other conditions doesn’t have a clear path that anyone can say this is what will happen next, or this is even what you might expect in the future, so the chances of my having a health twin out there is almost zero. Right now and from it’s beginning of my MS to my eventual end, no matter how many people care for or even love me, I am totally alone. Just occasionally, there is a flash of someone else understands, but they are moments that are set on certain symptoms, not the whole picture, just parts, but there are things that could change out there, that could actually help the millions of people out there who like me are on a solo path.

I did some digging around online yesterday afternoon and I eventually found not a medical site or a one of the MS sites, no that would be like them actually admitting that things can and do get worse than they care to even imagine. I actually came across two sites, both like mine written by actual people who have MS, I was surprised to see that the number of blogs in the last three years had skyrocketed, most unfortunately still shy away from anything other than the average symptoms or are written by people who have RRMS, but as I said I found two slightly more detailed ones. Neither in my opinion gave a full detailed account, but both did talk about how bad the shutting down of their bowels had become. Both talked about the fact that they too could go weeks without any movement, despite taking all the medications both from the doctors and their own discovery, but shied away from describing the pain or of having to resort to any other intervention and one had eventually had to have a stoma. It was oddly good to find that I am not alone, but it also made me once more angry that all the rest of the sites I found said nothing more detailed beyond the one-word, constipation. I know I have had the odd rant in the past at all the sites out there and the doctors who refuse to talk about what could possibly happen, or how painful and distressing the whole thing can become and how they all seem to refuse to tell the whole truth about anything, but this is a perfect example.

When you are battling against any disease that is destroying you slowly, the one thing you want more than anything else, is to be reassured and know that what is happening to you, is normal. The other night when I couldn’t straighten up because of the pain around the area where my appendix is, the first thing I did was check online to see if constipation could be the cause. I had never heard that it could be nor had I ever heard that it could cause extreme pain in my diaphragm either, but I had enough common sense to realize that it was possible, I had checked online earlier when I had felt it briefly when I got up from my nap, just to be sure I wasn’t guessing incorrectly. For someone younger than me or who doesn’t have my life experiences, well I can see quite clearly how many might had been calling an Ambulance, even Adam was expecting me to have called 999 by the time he came out of his exceptionally fast shower. I have never found any site that actually explains how for example, constipation feels in detail or how it can cause so many other things that on the surface, well don’t seem to be truly connected. Like most people until I started having pain and problems a few years ago, my idea of constipation, was quite simply having to strain or passing dry and painful stools, at it’s worst it meant not going to the loo for a few days in a row, but that was it, minor, annoying but not something that could actually impact on your life. I know that it can be argued that all medical sites are trying to do is to give an overview that could apply to the average person with average health, but to find that even dedicated sites for conditions where it is a symptom of the condition, to still hold onto the softly-softly approach, well to me that is actually cruel and possibly even dangerous in some cases.

I truly wish that there was a main stream easy to find site that actually had the guts to lay out everything blankly and truthfully the details for every symptom or condition, from its mildest form to the absolute worst case scenario. I have had the guts to sit here and pour out the details of my daily life, the symptoms exactly as the feel at that moment and their impact, not hiding anything or even feeling the need to hide myself, why is it that no one else is willing to do the same for every medical condition and or symptom there is. I started today by saying being ill is the loneliest place on earth, it is also a loneliness that could so easily be fixed.

Please read my blog from 2 years ago today – 19/02/13 – Together forever

Well today is fun, I’ve mentioned a few times recently that my hands are causing me a few problems, well today they have entered and entire world all of their own. Every evening lately they have been either sore or numb or if they feel like it both at the same time…………