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 can come up with. I know because people tell me that they are inspired by what I write, so clearly I am achieving some sort of balance, but it is incredibly hard to sit here and set out to write a post about all the great things in my daily life, well think about it, who could. Life isn’t like that for anyone, and if they tried to convince you otherwise, you wouldn’t believe them at all, or worse still you would put them down as a fruit cake. Daily life for me is not really that different than it is for everyone else on this planet, and as boring as that is, few of us are in a hurry for it to end, I am no different, I just have extra things to deal with on top of just living. It is your values on daily life that change, for you to have a good day it would probably include work going well, the children not fighting or going out for a lovely meal, as it is those small things that change ordinary into great. For me it is just the same small things, basic things just like you, change my day from just a day into a great day, and just like you they can also change it into a really bad day. Regardless of what my health has achieved, I am still just a person and one that reacts to life just as everyone else does.

Yesterday I had my weekly fight to get my hair washed, not a biggie just not something I really enjoy, but I managed to turn it into a trial that is still causing me pain and problems. I forgot to bring with me into the bathroom the dark blue towel I use for my hair as it is dyed dark purple. I wasn’t dyeing my hair yesterday but I have found over the years that it doesn’t seem to matter how often you have washed your hair, there is all to often even weeks later some lose colour that leaches in to the towel, my bathroom towels are cream. Standing in the shower cubical, dripping wet and without my towel, I had a choice, chance it or create a wet trail to the kitchen and back to get the one I needed. I took a chance, and I lost! Once dressed I was left with a cream towel which had some pale pink lines on it and I knew I had to wash it there and then or it would stain. I tried to wash it by hand as I would have done years ago, but it just showed me how useless my hands had become, I couldn’t do it, the weight of a wet hand towel was too much for me. I did what I could to get the water out of it and threw it into the washing machine and went to find other white washing to go into the machine with it. I set the machine up and left it to do it’s job.

I know that doesn’t sound like much but that is the first time I have done any washing for years. I sat here playing a game feeling rather chuffed with myself, I had carried, OK in a couple of trips a large pile of washing from the basket to the kitchen, I had dealt with it all against the odds that it would be too much. You wouldn’t believe how something that small can lift your spirits and make it a good day, but that maybe was my mistake, I ticked the good box too soon. This is where my life becomes different from yours, I don’t get to have the good for long, within about half an hour the pain started in my arms, shoulders and neck. With my hair still being wet I had stood up to brush it through again and as I lifted my arm the pain screamed through me. When I went to bed last night it was as thought someone had cut my body off below my bust, as the pain in my upper body was over shadowing everything else. Here I am now 24hrs later and I am still paying for my few minutes of achievement, the upper body section is still painful and every movement reminds me. So how do I see yesterday now, I still see it as a good day, I was faced with a problem, one that I had to deal with and I knew that my body wasn’t really capable of, but I did it. Being proud of having a shower and doing some washing may sound stupid to you, and it would have done to me years ago as well, but it was a major effort with a big price to pay and to someone who’s body normally just sits or sleeps, it is the equivalent of running a marathon.

I suppose the point is that all may to some sound a bleak way to live, but to others who like me live this life, I expect they too like me will smile knowing just how important and how good it feels to achieve a huge nothing.

One Year on

Well I have made it, one complete year to blogging! When I started this I really didn’t think I would be able to come up with enough to write about in one blog far less two, or that I would be on twitter and Facebook, to say my life has totally changed is putting it mildly. I had already been housebound for 4 years, but that was 4 years where my life had changed very slowly, I was already used to working from home as I had been doing so for 3 days a week as it was, going to not going out at all was actually a relief as I found the process utterly exhausting to the point that the days I did go out I was able to do a fraction of what I could from home. Finding that I was now trapped by not being able to use my wheelchair, was actually a relief, one that became visible within the first couple of months as I managed to remove my gastric nasal tube and actually eat enough not just to live but to start restoring my pathetic body weight. Four years of working from home, a total of 13 years working for the same company and I was faced with redundancy, four months on from there and the first blog appeared. I never thought that just sitting writing about my health and my feelings daily, could really make such a difference to me.

The biggest thing that I think has changed is that I have found myself, the one that got lost when I was working in an office type job, I never saw myself disappearing but I did. My work before that allowed me to be totally who I was and to do what I wanted in a way that made me proud of myself. Some how I disappear under a corporate blanket, and it is only now that I can see why people drop out of society and live what we call alternative life styles. The regimented life that we are forced into when we become a drone in an office really destroys your own beliefs and feelings. Don’t get me wrong I loved it at the time and I miss the work side of it to this day, not just the wage. You are left without the time to appreciate what life really is about, to think through how you love people and why you do, to understand what it is to be alive and how to make the most of it, not just pass through it as fast as you can. Working in the corporate world taught me how to lie, they call it spin, how to conceal fact from those who don’t need to know and how to obtain information from those who are concealing it. I didn’t realise how those small facts can really stress you out.

I am at heart a person who conceals nothing, who tell the truth and nothing but, who loves people without exception and regardless of what they do or have done. I don’t hold grudges and I hate to see anger or deception of any sort. Until you step back from the outside and you stop listening to the ad mans babble about what you need to live, you don’t know who you are, you might think you do, but you don’t. When I set out to learn about my MS and all it’s friends and how they effect me daily, I had to start listening to my body and doing what it told me rather than what I told it, I learned so much more than I thought I would. When you center your thoughts on yourself, slowly you start to find a peace, an understanding about what it takes for you to live, not just with your illnesses but with the entire world. For me much of it was about tearing down the rubbish that had concealed me since my childhood, that mass of stuff that we think makes us and adult. I didn’t realise that was what I was doing, I didn’t realise much of it at all, it is only when I read back what has changed that I see. When I was DJing and living my life in a hap hazard way was the closest I got to this before, but even then there was still an illusion wrapped around me, they to have now gone. For me there is no mumbo jumbo about living well and being happy just a few simple steps.

I have learned in this year that we should all listen to our bodies not our brains when it comes to anything to do with our health, well or not we abuse our bodies, listening to it even for things like eating and sleeping will effect how you really feel daily. Then their is routine, routine in everything, eating, sleeping, the things we like to do and have to do. Those two simple steps are all it takes to settling you at your best possible physical health, but it is the mental health that is required to make this all work.

I don’t think you can find peace and happiness as long as you live by what we see around us. What I mean by that is taking away that veneer of what others expect of you, you have to be honest at all times, open about everything and open to everything. I had to revert to the child who cares about and loves everyone until there is a reason not to, then start loving them again. Hate is a word that has to disappear, it achieves nothing. I have had so many reasons in my life to hate people, but the thing is, hating those people allows them to keep hurting you, forgive and move on,

The biggest thing though is to start writing, not if you don’t want for the world to read, but I think that is good as it means you really are hiding nothing, a private blog I don’t think would work quite as well. Writing daily about your day, your feelings, your wants and reasons, is the most wonderful way of thinking through everything and letting yourself analysis just how things effect you. If one year ago I hadn’t started writing I truly think that without a job and with no way of getting one, time alone would have driven me into depression, the activity of writing daily in itself is the final piece of the puzzle as it gives you achievement, vital to our mental health. Who know what I will be writing this time next year, but I know 100% I will be writing as it truly is a magical way, of putting to rest what isn’t needed and to celebrate what is.

One year one I can also say with total confidence that my health is worse, so no surprise there, but I can track it and see where it’s going, thanks to this blog. I have records that show that downwards curve, I expect totally that one year on from now I will be saying that same. I hope though that I can also so that I am happy in my life and my world and that I am still glad to be here, glad to have the love of my husband and daughter and glad to have wonderful people like you reading and helping me through.

Inspiration

I know that I don’t often have photo’s in this blog, well between “Touching Space” and “Just to Share” I think I have enough, but this picture is special. First it is titled “October Morning Mist” and at last it is October, so the first real time for it’s use, but there is far more to why it is here than just what it is called or the fact I actually found and saved this picture in October last year when I had no use for it, well I haven’t been blogging that long yet. It is now one year since I last did a full days paid work. When I found this picture I saved it because I felt like I was wondering around a forest filled with fog, I really couldn’t unusually for me, see where I was going or how to get there. I think I spent nearly the whole of October feeling that way, I was doing all the right things but not getting the right response, lots of nice words, but no job. I found myself looking at this picture a lot when I was at a lose and then feeling determined again to clear that mist and get to the other side. So it inspired me by being there at the right time. It is strange how things like that happen, you stumble across a quote or a picture, or even turn the TV on to find that there is a program on which matches exactly what you have been thinking about, life is weird like that. So would say it is fate other coincidence, and I just simply don’t know but accept it as interesting.

I think inspiration comes to most of us when we aren’t looking or expecting it, I still at that time believed in my heart that I would find a company that could see past my disability and see the experience and knowledge that I had to give them, I was wrong. My life has actually always worked this way that when I am forced into making a change, without meaning to, I have landed up doing something totally different and something I totally love. So I am not surprised at where I am now at this time, so OK it is not a job and I don’t earn from it, but I love writing and love more knowing that it has a real purpose. That is why I posted this picture today, it inspired me when I needed it and led me off on a path I didn’t mean to go down, in a way this picture was the catalyst to my writing. I think more than anything when you are in my position of being housebound and knowing what the future holds to an extent, that you need things to inspire. I used to find my inspiration from the people around me, being a people watcher I always saw things in people that I bet they never saw in themselves, I no longer have people around me, so I now very much draw from the pictures I find. It even to an extent can help with the pain, I know when things are bad that sitting for a while going through picture which relax and or distract really makes a difference, probably why I have so many posted all over the place and stored in my folders.

I have said before many times that achievement and purpose are really needed to get you through being housebound and I do totally believe that, but I would also add in you need inspiration. Inspiration can drive you on through some of the toughest times and I think many give up and sit waiting for the end as nothing inspires them any longer. I think we all draw our inspiration from having people around us and in contact with us, we get it from work colleges, from friends and from family, when you loose nearly all of that due to your health, you become a little lost. I think it is essential that you find another source and not just one, we all need several, as we had several colleges and several friends. I am not a music fan really but I can see how simply that could be a huge help to some. I made sure a long time ago that my home was filled with beautiful things to look at, I knew that I would reach a point when I couldn’t leave here, I didn’t really think past beauty when I built my collection of crystal, but it inspires me everyday. I just have to sit looking at it and I feel my mood lifted, a small inspiration to keep going, to keep enjoying, but it all adds into my nest and to filling my personal inspiration needs.

Replacing the outside world is impossible but you have to build your own version, your nest and your world. The more thought you put into it, the more it gives you back. I am asked often how I stay positive, I think I am more happy than positive, although I suppose they are the same thing in a way. Well the answer is here. Be inspired, have a purpose and achieve, big thing to do, but not if you do it step by step. Build into your life the things that give back all these things and well, like the picture above, let them take you on a path you hadn’t expected, I found happiness, I see no reason why you and everyone else can’t to.

Picture Details:- “October Morning Mist” by Pearl Photo (Wikimedia.org)