Learning with attitude

Last night turned into one of those where I was restless and never really reached a deep sleep that could take me through to the morning. I know exactly what was wrong with me, but there is nothing that I can do about it. I am in the 48 hour period within which, when my body decides to actually let go, I will be going to the loo. It’s is total madness. I have gone from never going and never knowing when or if I would, to having a couple of days notice, followed by about an hours notice, then a two-second emergency run to the loo. I know it’s great that my bowels are moving, but do they really have to make such a fuss about it? Bodies I always thought were meant to be the vessel that carried us around. Perfectly preprogrammed with every internal process required and we didn’t have to ever think about it. Just another lie that I was told about life, along with the one that said “when they went wrong, they could be fixed”. It would just be nice for once to find something that I wasn’t lied to about. I remember all those horrid lessons at school called Biology when we were taught us how amazing our bodies are and how perfectly they worked. It was backed up by parents who took you to the doctor with every ailment from a cough to operations to remove those defective parts, but always being reassured with that line “the doctor will make it better.” Not once do I remember anyone once warning me that as time went on, I might just fall to pieces and unlike Humpty Dumpty, they wouldn’t be able to put me back together.

As a mother, I totally believed in never telling lies to children, never using baby language and in teaching not telling. I totally believed in answering all their questions, regardless of their age, or how busy I thought I was. I was so sure that it didn’t matter what you told a child, they only remembered what they were ready to learn and capable of understanding. But by constantly teaching them and answering their questions no matter how embarrassing or hard to answer, it meant they had the building blocks to move on to bigger subjects, knowing that they had the truth. It turned out to be totally true. My daughter can’t remember at all having the facts of life explained to her when she was 6, following a question triggered by the news, about how an 8-year old had had a baby. Yet she does remember never being fobbed off or being told a pack of lies about babies being found in a cabbage patch, or any of the other stupid things kids are so often told. I know that I was educated through the 60’s and 70’s and that things have changed since them, but I honestly think that children should be taught that they too could have their lives turned upside down by their health or the health of those they love. Having a small amount of knowledge about any subject, makes adjusting and learning far easier. Even if they were lucky enough to sail through life unaffected themselves, it might help to change reactions and attitudes towards those who do have an invisible illness. The stats say that one in twenty-five of us will have a chronic illness of some sort. That makes it impossible for someone to go through life, totally unaffected, even if it is just in the workplace, we all will know someone eventually.

The hardest thing for anyone to teach another is attitude. I so wish that it was something simple, something that we can just pass on to someone by placing our hand on their shoulder, but we can’t. I have never been able to work out where it really comes from, is it something that is deep set in our personalities, or is it something that we learn from our parents and extended family. For me, I would say it is a combination, but I do believe that it is also something that we can learn and change if we are determined to. I know I had the base there set in place when I was a child by the behaviour of my family. Their attitude to things like health and work were the ones that I started out with. I was and am, so different from my blood family that I think that is where personality plays its part, but I also learned much of it too. Our attitude more than anything is the thing that will make us sink or swim in any situation, but health is probably the biggest one. If you are the sort of person who takes to bed demanding nursing when you have a cold, you will find chronic illness really tough. But if you are like me, who had to have a limb hanging off by a thread to not show up for work, and even then if the surgeon had said it could wait a few hours, I would have gone to work, then it will be easier. That though is the bit that I think we learn. If your mum sent you to school with the measles, well health is probably not going to be something you see as an excuse, but it is only the start. Attitude is something that affects every second of your life when you are chronically ill. How we react to every tiny thing in our day, changes the next second and the one after. It is incredibly easy to bring your mood down, just because one tiny thing went wrong. This is where I had to learn.

It was hard and still is at times to just let things go. To just say that that doesn’t matter, it happened, it’s over and now move on. If you can’t do it, you have to learn it and learn it fast as heading down uncontrollably, has you heading into depression with rocket powered boosters behind it. I know that some people think that I am tough on myself, but I quite honestly have to be. I have to push out all those worries and problems, get rid of them and find a new way that works. I get rid of them here and if you read all I have written, I know that you will see that. In time, you also find the positive result of it. (I still hate that word positive.) It was Adam that first spotted it, he realised what I was doing and how this blog was my way of working through what life was throwing at me. You, dear people, are my psychiatrist, my counsellor and more. My writing is my sounding board, my place to shout and scream and come out of it smiling. I write daily because daily I am pushing myself to deal with life and to correct my attitude to me and the world.

Ask anyone with chronic illness and they will tell you that being ill has changed their entire view on life. I am no different and like others I wish I could inject all the knowledge into those out there getting it so wrong. I can look back and see just how wrong I was getting it and part of that reason was my attitude. I blamed myself for everything, it was always my fault and I was the one that had to work harder to get it right for everyone else and eventually me as well, somewhere off the end of the list. I let things get to me and dwelled on them, not for a couple of days, usually months, sometimes even years. My illness opened my eyes to what life is and what the point of it is. If I am not happy, there is no point. You can’t be happy with the world on your shoulders, even your own world. My life changed, some might say too late. I might have agreed once, but no longer because I am happy right where I am, living as I do and that is all down to getting my attitude right. Not even my world sits on my shoulders any longer, I am where I should be inside it and part of it.

Learning can be a painful process, but without it, our lives would be hellish and I for one never intend to stop learning. I may not have yet learned to love pain, but I have learned how to deal with it and how to live with it. Like doesn’t come into it, but my attitude most defiantly did. I stopped hating and fighting it and started working and living with it. If something is wrong with your life, if it can be changed, change it. If it can’t be changed then look to your attitude and change that. It can be done and it’s worth it.

Please read my blog from ¬†years ago – I’m still here

Everything has to be rushed this morning as Teressa and John will be here around 11am, they are coming for lunch today as their is some show that neither Adam or I have ever heard of, but apparently has been running in Glasgow for around 20 years, that they want to go and see. It is always the way, family arrive turn your world upside down and…..¬†https://livinginalimitedworld.com/2014/08/06

Understanding people

I have zero energy today so for that reason I am cutting back a little on all my normal daily activities on line, not stopping just cutting. I don’t know if it is this stupid cold or if it is my MS but I suspect it is both. MS is this horrid illness that sits there waiting for any excuse to have an extra pop at you, a cold is one of those perfect excuses. Actually I think I should stop calling it a cold and just admit it that it is Bronchitis again! I don’t think that I have blown my nose any more than normal and it is only my lungs that are congested and I only have a cough and a bit of a wheeze, but either way it has now managed to drain me of any energy that I had. Even making my self lift my arms to type seems to be beyond what my body wants me to do, but as always I don’t have the sense I was born with and I am ignoring it, actually that is me being hard on myself, I know that giving in totally is a bad thing to do, giving in makes it harder and harder to actually get going again.

Yesterday I had this strange thing on Twitter where someone suddenly started being really abusive and swearing at me, I couldn’t think of a reason why or how I had upset them so I went to their account to see if it was just me they were acting like this towards, and at first to my relief I found it wasn’t. I wasn’t clearly hoping that others were also victims but I had the confirmation that it wasn’t me at the root of their rant. I made a huge mistake and tried to find out what the problem was and to calm them down, it was a mistake as it got worse, to the point I had no option but to bloke them. I have through out my life come across complete strangers who have taken an exception to me as a person and the more I think about it the more I have realised that what annoyed them so much is a combination of myself confidence and my insistence in being totally polite all the time. When someone has lost it and is swearing and shouting, being nice to them, seem somehow to make it worse. Knowing this you would think that I would have learned to shut my mouth and back away, but I have this need for some reason to understand everyone and to understand their actions, people watching to the extreme. I remember on occasion where my insistence on being nice got my pinned up against a wall with the aggravated gentleman with his hand round my throat. I was a bar manager at the time and he said that I had totally ignored him on several occasions, I still say to this day that I didn’t, but when a bar is really busy it is easy to miss people, anyway the point was I tried to be nice to him apologized and tried to calm him down, then he blow his top came round behind the bar and grabbed my throat. I find this type of reaction something alien to me and I can see no reason why anyone would act that way, I don’t think I have ever lost my temper at all with strangers and the worst arguments I have ever had, have been short lived.

I doubt now I will ever understand people of that nature, or how someone who is polite and friendly can cause such an extreme reaction in another. I guess I am and always will be, too nice for my own good, I can’t even remember saying something to anyone who pushed in front of me in a queue, or made a comment that I over heard, I just smiled politely and fumed inside, why, simple, nothing is achieved by being nasty, just turn the other cheek, smile and walk away, life is too short to do anything else. Add to that that these days I just don’t have the energy to be able to sort out the lives of others with an attitude well.

I spoke to my Mum yesterday for the first time from last Christmas, sorry no we spoke in February, I had received a Christmas card with a cheque in it and I know how she panics about them not arriving so I called. In most families if you hadn’t spoken for that length of time there would be loads of questions and things to say, we talked for less than 15 minutes and that was that. My mother has always seen this a normal way to be and all attempts that I have made in the past to make our relationship more average have failed, she is in her 80’s now so I doubt that it will ever change. Talking once or twice a year is normal for us and the conversation that we had was normal as well. Both of our healths and then her announcing that she won’t be here much longer. I have been hearing that from her since she turned 50 so I was actually watching the clock to see how soon it would be said for the first time, a new record was managed, not even 3 minutes in. As always it was her that brought the end to the call in her normal way of a short sentence about how much it was costing me and followed quickly by good-bye. She is another person that I have a little trouble understanding but she has been that way all my life, doing the minimum needed to be called Mum and no more. I don’t think it is that she doesn’t care, more that she has no way or showing it, I have no memory of cuddles or kisses as a child, more regimented performance, something that I think came from her childhood as she was brought up by a nanny, so mothering wasn’t something she understands. Her 3 minute announcement I think actually have a ring of truth for once, she has been in hospital twice since we last spoke and both times for around 3 weeks, she actually did sound frailer than normal, but there is nothing I can do from here, but let the rest of the family take care of her and wait for the phone call from my little brother, as he will be the only one who would think of telling me.

Changing Life

I woke up this morning tired, not how you are supposed to feel after 9 hrs sleep, I guess that means I will be tired all day. I actually can’t remember the last time I woke up feeling really great and bouncing with energy. I remember that great feeling of a new day with expectations of things to be achieved and fun to be had. I don’t remember when that ended but I do know that is gone. I’m frequently being told not to hold on to the past as it is gone and that I should use my energy planning for the future. I know this sounds bad but I can only answer that by saying ‘what future’. Yes I have plans of getting a new job and things I would like to do my home once I have one, but that doesn’t fill me with the warmth of my memories.

There are for me just as there are for everyone, dark areas which some would rather not remember, yet now I also embrace them. When you are forced to change your world, constricted with no way of continuing what you had, you see everything in a different way. I could moan about not being able to dance, walk or run any longer, make myself feel bad about MS or I can let myself truly remember, remember all the good feelings and find a freedom that reality had taken away from me. I haven’t stopped living I just changed the way I do it. Physicality is so much part of our world that to lose it seems unthinkable.

I challenge you to spend just one weekend at home, were you can speak to on one other than your partner, you can do nothing but sit in front of your PC in the day and TV in the evenings. No you can’t do any housework, a blessing you may think, but think that into the future and the dust that just has to lie there. You can’t read a book as your eyes won’t let you, nor can you knit, sew or any other craft type project. Theses are all gone, as is anything you need to do standing for more than a few minutes. You will then get a glimpse of the easy side of having MS. Then when you wake on Monday morning, I bet you will be happy to go to work, happy to have another person to talk to, happy to be outside. The thing is in my world I don’t wake on Monday morning to anything different than I do any other day. I wake to a limited future with a rich past.

There is still a lot left for me to do and much I want to do, but I have to accept that mountaineering just isn’t going to happen. I thought I would never survive living this way, yet I have and I think the reason why I manage is quite simple. I balance what I have with the richness of what was.

I’m not anything or anyone special. I’m not different or stronger than you, the only difference between us is I have Multiple Sclerosis, that’s all.