Life through closed eyes

I am currently walking around with a plaster on each foot, the podiatrist came to see me yesterday. It is partly my fault, as she did call me about four weeks ago wanting to come out and cut my nails for me, so it had been five months since they were last done. Part of the reason that someone has to come in to cut them for me is that due to a birth defect my toes are curled and all my nails including my big one, now have nails that curl and grow into the skin. When I was able to reach them and see them clearly, well I had learned how to deal with them, but now, well even the podiatrist agrees that it is a bad idea to have Adam cut them. The extra week meant that they were in a greater mess than normal, even though Adam had had a go at them with a nail file a couple of weeks ago and she had to take a scalpel to two of them to cut and lift the nail out, hence the plasters. It was my right foot that needed the most work, but as always with my body, it is my left that is now the painful one, there really is some warped thing going on in my body as even when the facts say the opposite, it is my left side that suffers the most. This morning, I have found yet another reason not to walk around too much, as the toe on my left foot is crying out ever time it touches the floor, like a little electric shock. Some things don’t change I suppose, it is still the smallest, stupidest little things that cause us bother, I never once thought that PRMS would leave me unable to do something as small as cutting my nails, nor that it would lead to them being attacked by a scalpel. It really is the everyday things, the things that all of us do all our lives without a second thought, that makes our lives difficult once our own abilities have been diminished and it isn’t our illness that makes us feel disabled, but the million and one things that just everyday life require.

I know that the first thing I worried about after diagnosis wasn’t how long I could cook a meal for, or cut my toenails for, it was how long I could work for, I really didn’t understand just how unimportant work really was on the scale of things that life held in the future for me. I doubt anyone ever thinks about how long they can make a cup of coffee for, or carry that cup from the kitchen to the living room without spilling it. We are all so blinkered by the major things that the minor ones never enter our heads and no one ever sits us down and explains the full impact of what our health is going to do to us. It is almost as though everyone assumes that we will or have worked all these things out for ourselves, but I don’t think any of our minds work that way, we are so worried about our financial positions and staying part of the able-bodied world for as long as possible, that the truths of disability never get the slightest look in. I do remember wondering about how long I would be able to walk for, but I never once sat and thought about the reality of life in a wheelchair and how most of the outside world and much of the inside, was going to become an no go area for me. I never thought about being housebound, I do though remember thinking about becoming bedbound, but as where I might be a for a few months at the most before I died. Somehow in my head all the in-between stages didn’t exist and I very much doubt are in any of the heads of those people who have been diagnosed with something similar in the past few years.

It isn’t until the day you try to do something and find that it isn’t as easy as it was the day before, that you suddenly start to think about losing that ability. I remember in the weeks before I lost my left arm, I kept finding myself unable to do silly little things, that the weight of something would suddenly increase and I would drop it. In fact, the day I really noticed it and started to think, was when we were putting up the Christmas tree. I remember struggling with everything and getting more and more frustrated with it and with Adam, as I had to tell him over and over that my arm wasn’t able to do this or that, as he moved at his normal pass rather than jumping at lightening speed to either catch or take from me whatever was in danger. Hanging the decorations on the tree was a total nightmare as it is very much a two-handed job and I had hundreds of tiny breakable ornaments to hang, plus thousands of decorations for the rest of the house other than the trees and no I am not exaggerating, we do have thousands of Christmas decorations. Over that month, things remained at about that level, with odd things happening and problems that kept reoccurring, even then I still brushed it aside and kept telling myself that I couldn’t possible lose my hand, hands don’t just die suddenly. Even then, I never once thought that in the first week of January I was going to wake up one day and find it totally dead, nor that it was going to take a year to get it back to a useable level. Quite often, even when things are staring us in the face waving red flags and shouting, we don’t see it until it does it’s worst and we have no choice but to accept it.

I don’t know if it is willful ignorance or just the normal simple ignorance of the able-bodied of what life as a disabled person really means in its finest detail, but I do know that none of us have the slightest idea of what lies ahead of us. I used to think that someone should write a handbook on becoming disabled slowly, now, well I guess the truth is that few of us would read it and those that did, would simply dismiss it as impossible to happen to them. It doesn’t matter how many peoples lives I read about or I have told to me, I still find myself somehow unable to accept that most of the worst things I come across could happen to me, just as I am sure many who read my blog can’t see the same things I write about happening to them. My arm did teach me one thing, I no longer don’t pay any attention to the small things I feel or see, I try hard to make mental notes, not always the most reliable way of documenting anything, but I try. Should something happen again, well I can see if it was a one-off or a real change. My list of one-offs is huge and is kept company by lists of two-offs, three-offs, four-offs and so on, I still have to workout at exactly what point it falls off the lists and becomes part of life.

Progressive illnesses aren’t always hard to live with because of the things that you have get worse, but because new things keep appearing, one after another. You keep telling yourself that you are fine, that surely nothing else new can happen now, but it does and what we know, has nothing to do with how we handle it, that has everything to do with who we are and how we handled all the things before. It has taken me a long time to understand why my neuro wanted to see me every year, I used to think that it was because I was in this small 5% of MS patients with PRMS, now I realise it was because although he wasn’t saying it, he could actually see my future. I didn’t know until the last few years just how rare some of my symptoms were, as I was already then displaying several of the rarer ones. From everything I can find to read, I now seem to have them all, but if he had told me that then, I don’t know what I would have done, possibly attended his surgery for a couple more year of nods and smiles as he ticked off all the rest. From what I can see, well my path is now set and with luck the new things will be fewer and further apart, as long as they don’t find some other condition lurking that I don’t already know about. I do know though that there are still a million things that I can do right now, that I won’t be doing in the future and I am sure that some of them, well some will be totally unexpected, as no matter how much I read or listen, simply because I am as human, and like it or not, humans do a very good imitation of being an ostrich with their head in the sand.

Read my blog from 2 years ago today – 9/04/13 – An act or a lie >

I am a bit drained at this second, Jake phoned for his weekly check on my and his calls are getting longer, the longer he is not working. I love the guy, but it really is just too much right now. I am managing to put on that gloss, the “I’m OK” cover, but it is getting harder and harder. Despite everything…..

It’s more than memory

I’m just waiting for the phone to ring as I have made my phone calls to both the doctor and the MS nurse. Of course, just because it has to be the way my life works, my MS nurse who I normally see once a year and never call, is on holiday today and won’t be back until tomorrow and my doctors call back, well that’s like working out the length of a piece of string without seeing it, sometime today. I really hate this waiting for calls, as soon as I put the phone down, well my body decided that it needed to go to the loo, my brain went into this stupid spin of should I go or should I wait. So OK that is stupid, but I never have the luck of getting the timings of things like this right, sods law always says that phones and doorbells ring when every you aren’t there and available to answer them. This time it didn’t, but that is exactly how my brain works these days, it creates panic points when there is no need to panic at all. It’s odd how when your health goes, your brain seems to want to make your situation harder, it is almost as though there aren’t enough things already going wrong in your life, that it has to start creating them. I don’t know why, but it runs over time with what if’s and what next’s, I guess it is all part of the fact you begin to feel useless and everything is harder than it has to be, so why would anything happen the way you want it to. Don’t get me wrong, I haven’t got the disastrous belief that everything is against me or anything like that, it is just that when so little of what you want is possible and more and more seems to be taken away all the time, well you can’t help feeling everything else is going to go as well, it just a matter of when.

Yesterday I decided that I was right, it’s was time that I asked Adam to help me with my meds, right now I don’t know exactly how we are going to do this, but we have put together a list of what all my meds are and when they are each taken. I can’t see right now what his thinking is or how it is going to make a difference to taking them in the morning as he is at work before I take them but it will make a difference to the evening ones, I shouldn’t miss any of them as he is always in the kitchen in the evening and can easily keep an eye on what I am taking. I never thought that the day would come that I couldn’t do something as simple as take the right meds, I foresaw a time that simply because of lack of mobility that it would be easier for him to fetch them for me, but never that I would be able to be staring at what I take every day and wouldn’t be able to see that I had something missing. Mind you, I never thought that I would be able to add in unrequired or unconnected words to a sentence without being able to see it even when reading it back, but it happens all the time. Well not so much in the past couple of months, I found a new free program called Grammarly it actually constantly checks everything to make sure it makes some sort of sense, I am sure it will miss the odd one, but unlike a simple spell checker it checks that things are grammatically correct as well. I may not always agree with it, but it does help a lot and works with loads of programs, even those you might not expect. If only it were so simple, just to get someone to write a program that corrects all the things I now get wrong.

It is sometimes hard I know for others to understand what is happening inside my head, logic says that all I need are simple reminders, alarms set up to tell me to do things, trays of tablets to take at the right time and so on, but none of that works any longer. It sometimes feels as though I have two brains, one that still works on the logical steps in life, that still believes in writing a to-do list and routines. The other is filled with these huge gaps and voids where everything just doesn’t happen and it whole purpose is to chuck these gaps and voids into the middle of normality. The results, well it’s these blind spots, where I can’t even see what is wrong, occasionally the gap isn’t positioned perfectly and then I have this vague recognition that something isn’t quite right, but I can’t pinpoint just what it is. One of two things then happens, either the misalignment is so bad that eventually reality manages to get through and the error is corrected or the gap settles correctly over its target and the error is either there forever or until something or someone outside of me corrects it. On top of that, well there is what has been a permanent issue for a very long time, where I receive the reminder to take my tablets for example, but I am distracted, that distraction, well it overwrites the reminder and again it is gone. The most frustrating thing of all is the fact that I can write down a detailed description of what is happening, but I can do nothing about it and that isn’t logical.

I am very aware that like everything else in the last couple of months is getting worse and just like all the other things, it is making my life tougher and tougher and is putting more and more onto Adam, who doesn’t need any more at the minute. For about a year, Adam has had an alarm set on his mobile phone for just before 8pm, this is so I take my meds at the right time, but should that alarm sound too soon as I want to watch the end of the program we are watching, or if he doesn’t remind me to go when it ends, I will forget. It only takes seconds, so if he turns the alarm off thinking I have heard it and I haven’t and he is then distracted by something on his phone or laptop, well I just don’t get my meds until he realises, or on the odd occasion, I do. All the prompts in the world, even the human ones are fallible, there aren’t any clear cut answers or simple steps that I or we can take and worst of all, this is probably on the surface one of the smallest issues I have, but very possibly in time the most important one. Pain, discomfort, fatigue or any but one of the other symptoms I could list, don’t affect anyone other than me, right now memory is the only one that affect anyone outside of my body as another human brain, is the only answer that stands a chance of working.

Forgetting things, losing your memory, not seeing things that right in front of you, they are all tiny things that other people brush aside and say “it doesn’t really matter”. That is rubbish, it matters and matters more than you would believe until it happens to you. We are our minds, when they fail, even if those failures are small, they affect everything else, miss a tablet, miss the opportunity to make yourself better for a while longer. Miss a tablet, miss the chance of a good nights sleep, without hours of lying there trying to work out what is wrong with you, why your pain is so high and why you can’t sleep. Miss a tablet, your bowels start to clog and you’re in pain and discomfort for days. Miss a tablet and you rip apart the lining of your stomach, creating new problems that could have been avoided. But it’s not just tablets, it’s showers, it’s food, it going to the loo, it’s all the things that we say people do without thought, trust me without thought we do nothing and I know that for a fact.

Read my blog from 2 years ago today – 8/03/13 – It’s so good >

I sometimes worry that what I write about here can appear to be a somewhat bleak picture of the realities of chronic illness, and to be fair on some levels it is impossible to not paint things in that light. None of us would put at the top of a list of things to achieve in life as being chronically ill and housebound, but it really isn’t all as bad as your or even my imagination………

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…………