Habitual tinkering

I think I’m going to like this. I know it’s only day two of my test, but boy is my stomach flatter than it has been for years. So OK, it hasn’t got rid of the pain and discomfort, that would be too much to expect, but I am just that little bit more comfortable. Yesterday evening passed without incident, and although I was still as unsure of how to sit and find comfort, for the first time in several days, I didn’t want to voluntarily explode. It was after my second dose this morning, that I noticed the reduction in my stomach. There were two reasons that I stopped taking Frusemide daily. The first I mentioned yesterday, the possibility of falling unconscious, the second, I only remembered half way through yesterday, all the trips back and forwards to the loo. I know it’s still early days, but so far, so good. I’ll keep you posted.

Life seems to have become, this constant testing ground, continually trying to find that golden answer to whatever our most pressing problem pf the day. It has to be one of the most frustrating parts of being chronically ill. Every time you fix one thing, or, at least, think you have, it will fade into the background as another takes its place on the annoyance scale. It’s like living on a roller coaster, that has an extra trick you can’t see when you first boarded, none of it is solid, it’s all made out of rubber. Try as you might, you are never going to get the upper hand, as the next trick, is already there waiting for you round that next bend. The biggest and most nasty trick it has waiting for you down the line, should that problem, you know, the one you thought you had fixed, should it reappear, that long sought after answer, never works again. After years of battling with this or that, part of me just can’t be bothered dealing with that next battle.

Don’t worry, I’m not talking about giving up, I am just wondering about the logic of continually fighting battles that I never truly win. I have been ill, we believe for just over 30 years. I spent the first 15 years of that time, without any medical help or even their belief, which is when and why, I had to spend my life trying to fix me, just so I could keep going. I used to believe that I was actually good at it, that I had my health sussed. What I didn’t know then, was the truth of what was wrong with me, that there was never going to be a consistency to what was happening. I didn’t know or understand, that my life was going to be spent in an eternal state of flux. To be fair, I didn’t even understand that when I was given a diagnosis. To me, my understanding of illness was something very straight forward, it does x, y, and z. I didn’t understand that it was even possible that x,y, and z, wasn’t the end, but actually only the start. It isn’t only MS that does this, the more I read other people’s blogs, the more I see the same story, mixed in amongst their words, because, our battles aren’t just with our symptoms, but with the lifestyles we’re forced to live.

Even right now, when on the surface, I am fighting once again with the issues surrounding my half dead intestine. I am also fighting with the fatigue that my “cure” is already causing. The pain and the difficulties that just getting from here, to the bathroom creates, as I have to get there before I wet myself. I’m forcing a bladder that doesn’t bother talk to me, to do more than it normally does and trying to tempt muscles that long ago gave up, to work long enough to get there. Two issues, comfort, and the desire not to be sick, has once more put me in the midst of a battlefield. So is it worth all this, is there really a point in fighting it? Is it possible, that just living with the problem, including the swollen stomach, might just be easier than all of this?

Just think how many issues appear in the space of one year. Issues our health has caused, that medicine can’t cure, that we instinctively, go head down and charge at. Would it really be that awful to just let our health, do what it’s going to do, before it moves on and does something else? It’s just a thought, one that I have to personally admit, although clearly I’m the one putting it forward, I don’t know if I could actually do, well not for very long.

My tinkering with my health, and I suspect everyone else’s, isn’t just a desire to stop, cure or change whatever is happening, I think it’s more about a desire to have control over the uncontrollable. Whether it is by diet, exercise, drugs or alternative medicine, we tinker. Sometimes, we have a modicum of success, we pat ourselves on our backs and tell ourselves “we have control.” If we’re lucky, our success might last days, weeks or even years, but the truth of incurable illness is just that, it’s not cured, not controlled and it’s just waiting. We turn that next corner and there it is again, all of it, just as horrid, just as monstrous and just as in control of us, as it always has been.

Just like many of my posts, chronic illness has a beginning, an unclear middle and, a somewhat fuzzy looking end. Stuck here in the murky middle isn’t the easiest place to be. I’ve done all the tests, all the treatments, the switching of drugs, all the things my doctor advised, and here I am sitting waiting for the end, or not. You see, that’s the thing about the middle, no one knows how big the middle is. Just like my altering midriff, it seems to expand and contract all the time. So as far as I can see, which without my glasses isn’t far, I have quite a lot of tinkering time left to do, and as I’m a creature of habit, trust me, 30 years is a lot of habits forming time, I can’t see me changing my tinkering, anytime soon.

Of course our tinkering has a purpose. It isn’t just habit, although, that plays a huge role, but most of all, it allows us to kid ourselves that we have that control. Even our doctors play the exact same game, they play it with us in full knowledge of the truth. They pat themselves on the back, because they’ve once again they’ve found the answer to our latest problem. We pat thier backs, for taking away whatever it was, that annoyed us enough to make us visit them. We pat ourselves on the back, because once more we have control, with or without our doctors help. Our doctors, though, quietly wait, as they know we will be back. We wait quietly, as we know we’re also be back, as our health never gives us eternal peace. The true point of all of it, isn’t the brief control, but the fact that psycologically we feel better, and that’s always going to be our biggest battle of all.

 

Please read my blog from 2 years ago today – 24/02/2014 – Learning steps

I had an amazing response to the post I wrote a couple of days ago where I posed the possibility that trauma and abuse could be at the trigger to autoimmune conditions. So many just confirmed what I believe……

 

 

 

 

If there were a cure?

Peace, it’s such a simple word, yet it has so many meanings, some so personal, they hurt. I can already hear the questions, how can peace be painful, oh, it can, it really can. To someone like me, someone who knows nothing about war, in the traditional meaning of the word, other than second hand, I believe we have to personalise it to get anywhere near being able to understand it. My war, the only one I have ever fought, or been part of, is simply the war to live. I know life shouldn’t be a battleground, but I didn’t choose mine, unlike those who once mounted horses, or climbed into a tank, I couldn’t choose to be a warrior or simply a foot soldier or even a pacifist, as my battleground is me. I don’t believe, that even the strongest warrior ever actually chose to go to war, they simply do the only thing they can, they fight.

My fight started so long ago that I don’t honestly know what triggered it, but I do remember the day. I was in what our school called Kindergarten, year 2, I had reached the grand old age of 6 and I wholeheartedly believed, that the underside of a road roller was preferable to life. The girls of my year were taunting me. I’m not saying that girls are more spiteful than boys, at that point, I didn’t know, as it was an all girls school. They were taunting me, for what, I don’t know, I sat on the wall watching the roller trundling up the hill. The words just came out, “I’m going to kill myself, I’m going to lie down in front of that roller”, they taunted me even more, so I did what all confused children did, I started to cry and I ran inside. Although I remember a teacher following me into the toilets, where I locked myself in a cubical, I don’t remember what followed, outside of my head. Did I want to die, no, I just didn’t want to live, they’re two very different things. I mention this now, only to give you a start point, as to where my personal war began.

From 6 to 28, it is fair to say that my life continued to flip, from either not wanting to live, to actually wanting to die, broken with bright spots of happiness, but never more than spots. That’s why I have always found my health somewhat ironic, as it threw itself full force at me, in the first elongated happiness, I had ever had. I had had two years of bliss from the day I met Adam to the date they told us that my fears were correct, I wasn’t well and I was facing yet another battle, another war, far bigger than I ever imagined my health had brewing inside me. So surely, peace, a complete cure, it must sound like the most wonderful thing possible. To have that chance of rediscovering that bliss, to take back that happiness and have a life worth living, it must be my ultimate dream. To an outsider, I can understand that, but to me, the idea I might one day be cured, no matter what it might ultimately bring, what terrifies me, is all that would lie in between.

When a war ends, to those who have never lived through one, we have this idealised picture of people just picking up their lives as though nothing has happened. That couldn’t be further from the truth if we tried. At the end of a war, there is devastation, not just of buildings, but of lives and families, they all need to heal and be rebuilt. Becoming well again, after so many years of anything but, would be like waking up in the middle of Berlin at the end of world war two, but totally alone, with a city to rebuild, by yourself. Around me right now, there is a support network, I may not choose to use it yet, but I know it is there when the time comes. If I were to wake up tomorrow totally healed, that network would be gone, other than Adam, I would be on my own. How on earth, do you go from where I am now, back into normality? It’s easy to say, well you get dressed and you go and get a job. It’s easy to say, but it would be so difficult, that I wouldn’t know where to start. I haven’t put a single foot outside this house alone, in 8 years. From the little, and it is very little, that I have seen from an ambulance being taken back and forwards to hospital appointments, there has been so much change out there, that I hardly recognise the place I call home. In just a hundred yards from my front door, the shops that were once there are all gone or changed, the gap, that was once at the end of our terrace, has a completely new three story block of flats in it, and the people who lived around us, have all changed. That’s within feet of my front door, what will have happened in the next 100 yards, and the one that follows that? The city I once knew, how much of it is still there? Eight years is a long time in the life of a city, and finding a job, in a city where not one of the networks I once knew and would have used, have all vanished. Outside of my front door is an alien planet.

If you haven’t worked for 8 years, how do you go about getting a job? With no current work history, and in my 50’s, my chance of anything in the role I once knew is zero. I have missed 8 years of advancement of the technology required, I would have less knowledge of how to go about it, than a school leaver, who wouldn’t be considered either. If I were 10 or 20 years younger, then maybe, I could find a way. Retraining would make both mental and financial sense, but with just 10 working years left, who would pay for it? As for getting through an interview, well that’s a nightmare I haven’t even thought of for over 20 years. I doubt I would have the conversational skills, let alone the confidence required to master that one. When you are cocooned in your own world, the one out there, unlike yours, doesn’t stand still and how you reenter it, I quite honestly don’t know. Remember, that at this point, I am financially aided by the state to live, it’s not much, but it keeps the wolf from the door. If I were suddenly well, that would end, the pressure to work would be unbelievable. Without the required confidence alone, my chances would be nil, with the rest of it, it gets even lower.

When you become ill, friends disappear, I haven’t even held a conversation on a one to one basis, with anyone other than Adam and my daughter. Family don’t expect social skills, strangers do. I am used to being able to sit in my own world and do and say whatever I want. Could I honestly hold my own out there? Would I even fully understand what some are even speaking about, as trust me, I struggle when I watch TV to follow at times, nothing to do with my brain, but to do with changing words, fashions, and acceptability. In 8 years, it’s not just the world, but people change. Watch a movie from 10 years ago and tell me in all honesty, that it doesn’t look and sound dated, well that’s the outside world I last saw, that I was a part of, and right now, I’m still there. The second I was well, I would be pitched into the middle of a world I don’t know, understand, or have the first idea, how I could begin to build a new life in. I’m not agoraphobic, but when you put all of the above together, the whole idea of walking down those stairs and to be in the open is more than just daunting. Even more so, the idea that I could be surrounded by people. Even when I have been to the hospital, I don’t think I have been in close quarters to more than a handful. I don’t know if I could cope with a busy city center, or even going as far as the shops at the top of the hill. I was never great in crowds, unless, I was controlling them, as in when I was a DJ. Even now, just sitting here thinking about it, I don’t think I could be happy out there, with so many people around me. I suppose I would get used to it in time, but I wouldn’t have time, I’d have to go today.

When a soldier returns from war, he is supported back into life by his regiment. If he is wounded, he is cared for, rehabilitated and slowly reintroduced to life. If you get well, your war and the damage it has done to you, psychologically, or physically, is ignored, you’re just turfed back into life. What more do you want, we’ve made you well, get on with it. They don’t even bother to pat you on your head, as a parent would a child, they just chuck you into the world, sink or swim right into the middle of another war. My health will never be cured, unless by a miracle. They might find a cure, but the damage is done, my body would be caught in time, well where I am, no more getting worse, but not better either. That’s not true for some, some will be ill for years, but eventually cured, I don’t envy them at all. I expect it’s fair to say, that the longer we have been ill, the longer we are housebound, the harder it will get. But there is one other element that would change everything, the fact that we are used to this life. This is now our own personal comfort zone, they way we live, the way life is, to throw it all up in the air and to have to once again, start all over, well, even with renewed energy levels, I think it would really, really hard. I guess there really is a point, even with health, that the saying “Better the devil you know”, starts to be true.

Please read my blog from 2 years ago today – 15/12/2013 – Little problems, little choice

I seem to still be paying for my exertions although I did actually sleep last night, it was nice not to be woken over and over again just because there was no way of finding comfort. I know my mind was racing, but I think…..

 

 

 

 

Tomorrows reality

I think my lungs are just that bit better this morning, well I feel like I can actually breath most of the time. Once again I am hanging on the phone waiting to book an ambulance for Thursday, and I guess I might be waiting for a while, that is at least….., wow I take it all back that was quick and easy this time, too easy. Sorry but I just don’t trust them that much, the good thing to me is the appointment is at 5:45 pm, so I am hopeful that most of the clinics that have patient who need transport will be over by then. Now I just need to fill in all their forms so that I have them ready to go. I am thinking of doing that tomorrow and doing it while I am blogging so that I can give an idea of what they ask and what is needed to be relieved before you even see a doctor. I am sure that there are many out there who have like me never been anywhere such a place before, so some of you may find that helpful. I am not doing that today as Jake is coming to see me at 1pm today, so I want all my blogs and so on done before he arrives. Jake can’t open a pay pal account but he likes to buy things on Ebay from time to time, so I set it all up and if he wins he brings me the cash and collects his item, I have one of those items sitting here waiting. I actually haven’t seen him for a while so it will be nice to have a brief catch up. He has been the most constant of friends I have had, we may not see each other a lot but we speak every week and he makes a point of calling me. He cared for his father in his last few months and I think he has a better understanding than any of my other now vanished friends.

I try hard to explain and pass on what I have learned not just here but on twitter and Facebook, but I am touching still a tiny number, and of course they are the ones willing to listen, you can’t make people listen you can just hope that something touches a nerve and the learn from there. I expect that is something that I have in common with bloggers around the planet, a wish to pass on information, not for our own self glory, but so that a tiny part of the world is changed for the good. I wish I had the power of the TV channels, not one of which have I ever seen showing programs that explain those changes that are forced on millions of their viewers. Yes there is the odd program that will appear out of nowhere, or a story line in a soap that lasts a couple of months but that is all I have ever seen. Sorry dreaming out loud again! What is on TV just now that I am finding a refreshing break from all the Christmas programming is the doomsday programs about the 21st of December, sorry but I just love science faction, as in what if our planet was….? How could be survive if….? It never ceases to amaze me how much of it I have heard in Scifi, just proving how great their research is before they start to write.

I have recently received several approaches from well meaning people with what they believe is a cure for my MS, I do research each of them, but I always find one of two things, lots of money with no proof, or that it is something once again for people with relapse remitting MS. It is 12 months since I started to blog, strangle on the 21st, but in all that time and with all the people I have met on Twitter, here and Facebook, I have only once found one person who had the same version of MS as I have, I have made contact now with over 22 thousand people, and no list of hello’s from people with PRMS. It has made me realise more and more that the chance of any cure for me is zero. I had little doubt before I started all this, as well medical breakthroughs take years not days. If today a scientist had that eureka moment, it will probably be 20 – 30 years before anyone tries it on humans, I won’t be around to see that even start. I thought that from about month 6 after diagnosis, but the longer I remain in contact with the outside world and count those like me, my chances are now guaranteed to be zero. So my life is what it is and clearly that is still a good one, it is also one without false hope, something I think can be more damaging than the illness itself. I would drive myself nuts if I were to sit here searching for that cure, that magic pill that will change everything, acceptance of where you are is really one of those important steps towards living a good life, in your new environment. My hope is there, as big and as strong as ever, but my hope is the hope that I can continue to live this life for as long as I can, not that I will be well tomorrow skipping down the street.

Hope in History

I am more than a little aware of the fact that I give a very upbeat impression of disability and I am not going to change that, sorry I can’t it’s just me. It isn’t just am image or a false persona by any stretch of the imagination, I was born with a glass half full nature, I was also born with a, listen to both sides of everything personality as well. I have always in life found it impossible to accept anything without first finding out for myself, the phrase “I am telling you it is right, so accept it”, the most ridicules thing for anyone to say or go along with. To me nothing in life is black or white there are shades not just in between but over and under them as well. This belief even at an early age got me into and out of trouble regularly and has lead me on many a path that were interesting and beneficial to my life.

Many people who have a chronic illness find comfort in religion, I myself have slipped in an out of belief from a child onward, having been brought up in a rather fire and brimstone version of the Church of Scotland I attended both church and Sunday School regularly, but at 15 I set out to find where I belonged and found not the answer I had expected. In 6 moths I went through my training to become a Catholic, attended some Buddhist gatherings in Aberdeen, listened to the teaching of an Indian Yogi, and read books on Islamic and Jewish teachings. I realise now, that I was a little young to have headed of on my quest, especially in the 70’s, when the teachings of ‘Peace’ where heavy in their impact on many generations, especially the teenagers. My conclusions at the time left me not as sure about the world but sure enough that I didn’t feel the need as I though everyone did then, to follow any religion at all. I learnt enough then to believe that there is a God and that every religion has it’s good and bad point. Through out my life, like many I am sure, I have flitted in and out the Christian faith, when my son Jeffery died, the church swept both me and my ex-husband up and supported us without asking. The forces padre’s always swing into action and we needed their support. Alone and many miles from our families, the Church we attended offered us support from every member of the congregation to their ministers, it is that experience that makes me fully understand why many disabled people find religion a comfort, as they offer so much that at times of crisis their network of organisations can be a great lifeline, but it was also a Padre’s actions that made me leave the Church and I haven’t been back.

So why am I telling you all this, well firstly as you should know by now, I don’t shy away from any subject, but I have found that there is an assumption that because I am a happy thoughtful person, that it has to be because I am a religious person. My religious beliefs have really not changed a great deal since I was 15. I am the person I am, because of my life and what I have seen and learned along the way, and from my love of history. I suppose, that I could say that I believe in history, the past has told me far more about life then anything else and like religion there is good and there is bad. I don’t draw my strength from anything greater than knowledge and knowledge to me is the greatest religion of all as includes all faiths, all theories, and all doctrines.

Whether you are a member of a religion or not is a personal choice, and if you have a mother like mine who is an Elder in the Church of Scotland it’s not an easy choice or peaceful choice to make, as still she thinks I should go to church. I do believe that to survive much of what is thrown at those who have poor health or disability, that you have to have a faith in something, if you want to believe in little green men arriving with a cure that is fine, or the mercy of Christ and God, or like me it is science, what ever it is faith is in a strange way what gives us hope, having hope is what makes anyone a happy, strong, giving person. If you have hope it is hard to be bitter, or angry, or depressed, or any of the other range of emotions that I have seen written down as so called ‘normal’ reactions. I have faith in science to control my pain, easy any of the symptoms and in one day finally finding the cure, even if it is too late for me, I still have hope because history has shown me we some how always get there.