Setting out memories

I woke today for the third time in a couple of weeks with pain in my left foot, especially in three of my toes. I tried again to see if I could find the reason for the pain but I can’t see anything. At least today is Friday so I will ask Adam to take a look for me over the weekend, I am guessing it is nothing more than a couple of toenails requiring attention, but well with the lose of feeling coming and going all the time, it is best to have it checked just in case it turns into something more serious.

Today is a day with a difference, my friend Jake who although I see little of but speak to weekly is actually coming here later. He is looking to change his way of life and get a job that will supply him with a steady income rather than his commission based wages at the minute and he wants help with his CV. I understand his need to change things but I fear that at the minute he is going to find it really hard, with so many out there with experience applying for every job, someone who has never worked in that field isn’t going to get a look in. With him being in his 40’s, I think it is going to be even harder. I have only been out of the business world for just over a year, but I feel so disconnected from it now that I can’t be sure that any advice I can give him will be what companies are really looking for, the business world changes quickly and constantly. I will of course do my best for him and I really hope that he is successful as I would truly like to see him settled into a career that might take him through to retirement age.

Until he asked for my help I hadn’t really thought that much about how fast I had lost contact with what is now my past life. I know I struggled for a while with not having a job and still do in some ways, but what I have proved to myself again just how being able to manage change isn’t just a work requirement of a company manager, but a life requirement of all of us. Mind you I have had a huge amount of experience through out my life of coping with my world being thrown up into the air and then having to pick up the pieces that survive and build around them. I know that it is impossible for the NHS to supply everyone who has a chronic illness with a course on how to manage the news and what is ahead of them, but I see now just how many could really do with help at that point, giving them the foundations for what is ahead.

Early in my blog I wrote about how in the past 10 years I spent money and time building my home in to my sanctuary, how I bought things I found beautiful so that where ever I am sat I see beauty, not empty space as so many modern homes seem to favor. Now I am so glad that I did just that. More and more my memory trail round my home is coming into it’s own, being able to look from item to item and from collection to collection, just remembering, is a great comfort, especially strangely on my foggy days. There may be a fog stopping me from remembering 10 minutes ago, so looking at things that pull me in to memories of years ago, somehow makes me feel better. So the second reason for it’s existence also works, the things I see prompt wonderful connections to the past. I know that many people have memory boxes, but a memory box to me is of limited use, you have to make an effort to sit down with your box and go through it, being around you all the time it constantly keeps things fresh in my mind. Fashion these days is towards homes that are more about ease of cleaning rather than spaces to commemorate our lives and our loves. But I can’t recommend highly enough to anyone who is slowly slipping in the memory department to fill that easy to dust in a swipe space, with what you as a person love. Once locked in doors even partially if not totally, those memories grow in their importance, and beautiful things always make you smile and bring simple enjoyment time and time again.

The ‘beautiful things’ is actually one of the reasons I wish I still had a wage coming in, I still see them from time to time for sale and there is no money to buy. I guess that is why I stay away now from sites like Ebay, they just remind me of what I can’t have, an extra negative that none of us need. I suppose that is another change and one I hadn’t really noticed me doing, I don’t sit looking at websites filled with what I want, when I know I can’t have. Some might say that daydreaming is a good thing, well it is, but daydreaming about something that ultimately will never be possible, is depressing. I don’t understand why people healthy or not put themselves through it, learning to be happy where I am and what I have is essential if I am going to survive with things exactly as they are. It may be for some a tough one, but that is why I say again, while you can buy those things you desire, and do it now, once that front door closes and you are cocooned in your sanctuary, it’s to late to change things then.

The measurment of now.

Thanks to the responses I had to yesterdays post, which I thank you all for, I have found one constant string from those who are chronically ill, that the thing we all hear constantly is, sorry we can do nothing. I know I am in contact with what is just a tiny sector of people, but if what I am seeing is the bigger picture as well, it is clear that millions must be wasted by hospitals every year, running tests on people like me who know our bodies in detail, as we have to, and know what is wrong with us without all these tests. My story is just one of many, but I am once again in the position where I told them what was wrong and why, all I wanted then and now, is help with dealing with it, yet I have had months of my problems getting worse without any help, as they wanted the results before they tried anything new. It’s nuts! I can’t help but think that there has to be a better way of doing all of this, that will actually help the people who need it, when they need it. Something that maybe all of us should think about, as clearly to me the medics aren’t thinking about at all. The real effect on me mentally is that of being battered and bruised once again by the medics. I have mentioned several times along the way, I really regret letting myself be pushed into the medical world that I had shut out for 5 years. To date all that has been achieved is more pain, more exposure to looks of pity and yet more confirmation that I don’t need, or belong, in the outside world any longer, it just isn’t worth it. The safest, least painful and least exhausting is my home, the home laid out so that I am independent as much as possible within it, something that is impossible outside it, my home is my sanctuary.

Since the other days bad bout it seems to have settled to it’s normal behavior, of discomfort and isolated section of pain for short spells, bearable as they are just that short spells. I can say it has returned to normal as I am noticing my left leg the most again, funny but that is a strange relief. How my life landed up at a point that I would consider a painful leg a blessing, is beyond me, but that is just the way life is. I suppose that is the way I measure things now, a good day is when I have short bouts of pain and constant discomfort, a bad day is when I am in constant acute pain. Every measurement of life changes, I used to measure things by how my life with Adam was and how well my work was going, but illness changes all that. You don’t even notice it happening, it just changes. Suddenly I find that a great achievement is managing to walk from my computer to the kitchen without holding on to the wall all the way there, or making the same journey in less pain than the last visit. Silly small things take over all the old measure, the whole meaning of life changes and what was important vanishes totally off the end of life’s list. I can look back over my life with some pride at what I did achieve along the way, but that is the past and comparisons just don’t exist. Happiness now comes from the smallest thing, the smallest human contact or approving act. I would never have thought that someone retweeting my tweets, would always make me smile, or that checking daily to see if anyone clicked and ad on my blog would become a ritual in my life, just earning a few pennies seems somehow important. To know I have made someone smile because of a picture I posted or that I have opened a door for someone to a world they knew nothing about, all these things have become important and a source of joy.

Someone who is totally able bodied I don’t think can totally understand the mindset change that happens, or how you could possibly be elated just by making it to the loo in time. I know that the me of 20 years ago would have laughed at the thought that that might be my most important achievement in a day. I know now that I can see from both sides, that to truly understand anything you have to live it. But I also believe that it is possible to get an insight, enough of an understanding to know how to react or even act, when faced with an individual who’s life is so different, without gawping or running away. The only way that will happen is if people like me are willing to lay our lives open so that everyone can see it.