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.

Wheels for the brain

I am still finding staying awake a little on the hard side just now, last night just like the last few I was in bed before 9:30 and still asleep when the alarm went off, add in my 2hrs in the afternoon and well my awake time is becoming very limited to say the least. When awake I feel drained and given the freedom that I don’t allow myself to simply climb back into bed, that is were I would be right now. I know a lot of people really don’t understand why I won’t give in and just go to bed if that is what my body needs, I have spoke before about the routine that is needed but it is also something else and that is maintaining normality. I really don’t want to turn my world up side down and sleep odd hours, I have a need to stay in line with the way my life has been for the majority of my life. The only time I changed it was due to work, when I was a DJ I worked mainly between 7pm and 3am, so I had to switch it but as soon as I gave up that life style I set my alarm for morning and that is were it has stayed. I have a need to still have some discipline in my life, to have set times to do things and for those time to be what I would call normal. I might have it totally wrong but I really think if I let my illness dictate how much time and when that time is to be awake, I would be finding everything harder and harder.

I suspect part of the reason I fight to stay awake is that I am very aware there will be a point when I won’t have the strength to actually fight it, and at that point I will have to give in. I think that I may push myself to do a lot of things for that reason, simply the awareness that one day the choice will be gone and there is a huge desire not to give into it before that time comes. I suspect there is also a large amount of wanting something to be NORMAL, I really hate that world but there is often no other that I can replace it with, yes I want things to be normal.

I have been very much forced over the last couple of weeks to admit that I am past the tip point, I think in many ways it has been harder to admit that than it was to admit I had hit the point where I needed a wheelchair. I had struggled for several years to get around on my own two legs and a walking stick. Where I worked was a standard call center, a long room that I couldn’t walk form one end to the other without having to stop and rest, if when I finished work I couldn’t get a taxi, I was stranded trying to stand until one became available, and I had turned myself in to almost housebound as I couldn’t entertain the idea of going any where due to pain and exhaustion. It is hard to admit you have to give up your legs for wheels but I can assure anyone that is facing that right now that they should stop fighting and just take it. It really changed my life, it was the most wonderful thing I had been given for years.

Admitting that you are now mentally not up to surviving everyday life is much harder, there is no gadget that can help me like my chair did, this is harder because the world can’t give me something to make up for what I have lost. Unlike being unable to walk when I just stop because my legs have had enough, I can’t stop my brain rest it and start again, it just doesn’t work that way. I can see already that as I have tried all the normal memory prompts and gizmo’s and I have gone past being helped by them, I am on my own in many ways. I thought about having someone coming into the house to help me with somethings but don’t need physical help I need a brain that works, someone being here would aggravate me as I wouldn’t feel able to do what I do when I want to. I would find having to talk a trial and I would fret about my home not being perfectly correct and tidy all the time. So I am stuck! As I said I am over the tipping point but still holding on with my fingernails to prevent a fast slide downwards. Without doubt this is the hardest thing I have come up against and it is going to take time, a lot of time to know how I get round or past this. How this will unfold only time will tell.

Peace is returning

Last night when I went to bed I was really hoping that I would wake at least at the same level as I did yesterday, I’m glad to say I did. Although it really seems to be just my feet that are improving, when I woke I felt brighter than I have done for a while, that to me means more than the decrease in the pain. I have lived with pain that long that I find I can get on with things to a point but when you are pulled down by it everything is a struggle, that small improvement means a lot! This morning is the first one for a while were I have sat here for 3 hours without a single tear insight. I haven’t been crying my eyes out it has just been a case of from nowhere a tear or to have appeared and at worst it has been my eyes filling once then clearing, but those tears spoke loudly to me. Although I have problems holding emotions in check they don’t normally run a muck when I am on my own, they are normally triggered by others as Adam knows all to well, but for me to be sitting in tears with nothing but me to trigger them, just wasn’t right.

I know things are still bad but I also now know that I am back in control of how I feel about it all and that is so important, probably more important than getting rid of the symptoms. When you can’t see past where you are and see nothing but a downwards slope it is really tough to handle, I accepted long ago what lies a head of me but rightly or wrongly I had a vision of it being a slow gentle slope, not falling off cliffs all the time. Yes I am in a flare and it isn’t over, but having that tiny improvement makes me feel that the free fall aspect has if not stopped at least slowed and it has given me back enough to allow me to be comfortable with where I am just now.

I’m not sure how to explain the feeling as it isn’t something I ever felt before I had MS but the closest I can get to it was when I had ‘Glandular Fever’. If you have had it, you will know that it is an illness that also drains you and leaves you wondering if it is ever going to be over. I have a memory of being in bed for weeks, with no strength and no energy, just sleeping and sleeping. My mother said I rarely woke for the best part of a week and I still remember when I did get up eventually, that just going to the toilet and back left me zonked. I was only about 11 but I was so scared that I was never going to get better, that my body was never going to stop hurting and that I was never going to be able to go back to school. The last one was the only high point in it, but that physical drain also drained me mentally, I didn’t have the strength to hold a conversation or to be part of the world. Then like now it is that last bit that is the worst of all, the fear that you are loosing the world. I do sometimes wonder if that long term illness was a training ground if you like, I was ill for the best part of 2 months and I wasn’t allowed when I went back to school to take part in anything energetic for another 3 months. I learned then that you might fear you are dieing and that life is never going to be the same if you do live, but the truth is, life goes on and it might not be the same but it isn’t that bad either.

Being out of control and lost to the world in my head is more debilitating than the physical restrictions, loose the battle in your mind and you have lost everything, win the battle in your mind and the physical doesn’t matter so much. I am in no less pain really when I look at the all over levels but I am winning in my head and that changes everything. My world is becoming peaceful again.