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.

Accepting Christmas and more

Monday morning and I woke to two legs in spasm! Since Friday they have been bad again, I had been lucky and they had settled over November just the odd spasm, rather than having the odd period of normality. All weekend they have been driving my nuts again, no position to sit or lie in where they will settle and just act like other peoples legs. Stress as we all know by now it behind this, and stress is what I had thrown at me on Friday, this is why yesterday I questioning is it worth it to keep going back when the result isn’t my getting better, but my getting worse. Everything seems to be out of kilter, I have had more problems with my dexterity and pains through out my body. When I went for a sleep yesterday afternoon, I at first just couldn’t settle, I had so many twitch and spasms that sleep seemed impossible, it actually proved just how tired I was, as eventually I drifted off, somewhere around the point I was asking myself if I should just get up for the twentieth time.

I was really in two minds about returning to the hospital yesterday, I know I have to go and that is the beginning and the end of it, but I can’t stop wondering how many people just never go back because of experiences like mine. Adam is going to speak to his boss this morning to see who it is exactly we should complain to, the treatment I was given, is simply not right for any patient. Transport for the immobile is essential and although I am not sure what I can do to change it but I am going to give it my best shot, I am not a person who moans and does nothing, regardless of my health and the fact I can’t get out there and meet any of them, what I can do is make a pest of myself, until someone gets so fed-up hearing from me that they take some action. I really do have to try not just for myself, but for all those who can’t complain themselves, which I fear there are all to many of. One of the things I was thinking or was to send the email not just to the NHS but also at the same time to the local papers and if I can find the right ones some of the investigative TV programs as well, it is always amazing how bringing in the media makes some people actually take real action.

My stomach and gut still hasn’t settled, I have had two days of trying to eat normally but it really doesn’t like it, last night I thought that I would have some yoghurt at about 8:15, I ate about a third of a large pot, and enjoying it very much, but by 8:45 I felt so ill I had to go to my bed. This morning I have had my breakfast and again I have pains all through the top half of my gut, I know it just has to settle as what has happened to it isn’t exactly something it was designed to put up with, but this is day three!

I have had that itchy feeling that I should be doing something and I know it has everything to do with it being December! I used to take a weeks holiday at the end of November, just so I could give the house a really good clean, including things like shampooing the carpets and washing walls. Something I am sure I got from my mother, but I was itching to do it and I still am!!! It is one of the silly things that get to you when you can’t do it. I was always so house proud and I actually loved doing housework, there was to me no feeling in the world like making everything clean and shiny then sitting back and just looking at it, that is all I can do now, look at it. Once cleaned I know my home was ready for Christmas and everything else would take care of itself. I know that I can be very old fashioned at times when it comes things like that, but you can’t change who you are inside. I may have had to accept, but accepting has nothing to do with liking, liking is a million miles apart and I doubt I will ever like it.

Rebuilding the Cocoon?

Friday seems to have taken a lot out of me, it is always the knock on that is more the issue than how I feel at the time. MS seems to let you cope, then kick you repeatably for even having tried to. I suppose it will all take a few days to settle, my routine didn’t exist last week and there were quite simply too many changes to deal with, I know I will get there but these are those hidden moments, the bits that others don’t see. I don’t think my gut liked the treatment at all, I am finding it now rather painful in strange places and clearly not happy with the food I have been putting into it. I can point to the exact positions where my breakfast, dinner and tea are, and I can tell you the pain and nausea is clear, I suppose part of it will be the ruff process of pushing the scope, some bruising and so on I expect, but most is empty space syndrome, gaps of air and crashing food.

I spent all of yesterday feeling half here and half longing to be anywhere else, especially asleep. I did at least get my afternoon nap and one again landed up in bed before 9pm, so yes I have just caught up with “Casualty”, I don’t understand either my love for hospital dramas either, I suspect it is because a lot of the time I actually know what they are talking about and sometimes even manage to diagnose the patient before the Doctors do, that I have to admit is fun, a bit like a who-dun-it. I have always enjoyed working things out and I am sure it is also the reason I can’t stand slapstick humor, what is funny about something you knew before it happened, actually happens, sorry I don’t get that at all.

I can see it is going to take me a while to recover from all of the last week, there are just so many parts to it that my body is still catching up. I know everyone seems to think that I should have a great desire to get out of here, but when my venturing outside causes so much stress, why would I want to go anywhere. I really do wish now that I hadn’t asked for help at all, I would be in a much better position if I hadn’t actually. If I had just got on with it and said OK this is the way my body works now and I have to work it all out myself, maybe just maybe I might have it all under-control with out any stress and without people in my home annoying me, and without yet others forcing me out of it. I managed fine for five and a half years then I asked the NHS to help me and it has been nothing but upsetting from that point on. Isolation was a much happier place believe me, everything just ticked along, day after day and I ticked along with it, I would love to have that back, life has been distressing since I lost it. It is strange how help can land up being anything but.

I suspect that when I do go back to the Gastro. department it will be once they have the results of the biopsies, 4 to 6 weeks time and I expect that guess what they will blame it on my MS, as I did right back at the start in March or April. My gut has simply stopped pushing food through, what I wanted then and would like now is a solution, I just hope they are now out of tests and are happy to just do what I asked and help me make it work well enough to be healthy and to not mess myself daily, I don’t think that I was asking that much really. Before that though I have another appointment this month to go to the Pain Clinic after the mess on Friday I am looking forward to this less and less as my appointment is for 5:45, I know the shifts change at 5 so this might not be a smooth system either. There is a real feeling at this minute of my not wanting to go, I suppose that is understandable and a risk I once again have to take, as I am sure if my pain was under control I would feel better in myself, but I can’t put into words strongly enough that I really don’t want to leave the house again if I can just find a way to pull myself back into my cocoon and lock them all outside it for good. Possibly a silly thing to do I know, but in my heart that is really what I want.

On going denial

One week on and my back is still hurting, I have to admit it is better than a week ago but I really did think it would have gone by now. Adam is back at work today so normality is once again restored in the home if not in me and yes I did make a start yesterday with my writing so I am no longer looking at a blank page if you like, I guess that unlike this blog I will do a lot of rewriting as this is daily I don’t really have the time to do that, I write from start to finish then check it over to ensure it will makes some sense to the reader, part of me thinks I should maintain that style, but it is hard to for some reason.

I have found myself thinking a lot about the post I wrote the other day about my decision that it was time for me to stop using the cooker without Adam in the house, I’m not going back on that decision but it has left me wondering how many other things will appear in time that I wouldn’t be able to do safely. We already had to change the bathroom from an over bath shower, to shower cabinet and I at the same time managed to get a raised toilet fitted so our bathroom which should be safe and easier in the years to come, although I know Adam would still rather I only use the shower when he is here, which I admit will probably have to happen eventually, but not yet. The two rooms that I guess will have to be adapted in time are out living room and bedroom, at least the bedroom will be a case of changing the bed for one that is easier for me to get in and out of. This week while my back has been sore I have had a great deal of trouble getting out of it, although I have managed with a slide and twist. It has opened my eyes though to the needs of the future as my muscles weaken all over I won’t be able to do this by myself, and I need to, as I sleep not only at night but in the afternoon as well. I hate the idea of having a practical bed rather than one that looks good and fits exactly into the space, any change in size would be a big issue as our bedroom isn’t exactly huge, there isn’t a spare piece of flat wall anywhere other than at the door as we have two wardrobes and two draw units that fill all the space to the centimeter. Change anything and something else would have to go and them what do we do with our belongings? In that respect I realise now that I should have done more work on the house when I was still working and had the money to, but no one expects to be made redundant and unable to find another job.

Like so many other people these days we would need a lottery win to be able to do everything that would make our home a better layout for going forward, as yes there is probably a few changes needed in the living room as well. I suppose I didn’t do it as like everyone else there is a denial that goes on for ever, I still find it hard to get my head round things like the cooker, I had the idea in the back of my head but my expected dates for any of them to be still years away. So how soon could all the other ‘one day in the future’ items actually arrive? It is easy to say ‘I wish I had’, but it really was bad planning and huge denial on my part. If I could go back and sort out all these things, well I would, and I would now have a home that I will be happy with how it looks going forward and would also be adaptable. Anyone out there heading down the same path please think and act now while you can, not what I did, blindly head onwards with blinkers on to the future.

I suppose that denial will continue regardless what I do or what I try to do, and the reason is easy to explain, no one wants to picture themselves becoming more and more pathetic and frail, but that is my future and I don’t deny that, I just deny the timeline it wants to take, as it isn’t the way I want it.

The home coming!

After a week of stress and pressure that I know I have spilled out on to these posts I actually have some good news to finish the week on. Teressa my daughter is returning to live in the UK. She has been working for several years now for Sega in San Fransisco a job she has loved but is now going to be working at Sega UK in London. I am so happy that she is going to be closer, I know London is the other end of the country but it is far easier to come and visit from there, than it is from the USA. It has really been too many years since my little girl has lived here, apart form the 6 months she stayed in Glasgow when Adam and I married, she really hasn’t been here since her early teens when her Dad took her to New Zealand. Although we clearly won’t be seeing each other all the time, we will at least be able to talk, timezones have always been a problem for me and I worried about phoning and waking here, which I did a couple of times. With skype we have to arrange the calls but not in the middle of the night for one or the other. It is a kind of strange feeling knowing that in just another month or so her and her boyfriend will be flying into London to stay. I might actually get to meet this one, as I have never met any of her partners, I didn’t even meet her ex-husband. They say constantly that it is a small world and how fast our modern transport is, how easy it is to just jump on a plane, but they forget always to say how hard it can be, to afford that transport.

Although Teressa has clearly been a world hopper, something I guess she gets from her father, I never have been, I am a home bird. I love flying well if my memory from when I was 12, I love flying, it was just when ever I arrived there I wanted to get on the plane and go home again. The idea of my going to the US was actually always a fantasy that both of us knew wouldn’t happen. Even if I had had been able to afford flights, hotels and all the cost that are attached to time spent away, I think I know in my heart that I would have given her the money to come here rather, than me actually going there. Now well things have changed and I can’t see me ever being able to go anywhere so her home coming party will have to be done on Skype, I’m sure we will manage one of our unusual conversations where we say little and everything, we are so similar that one word often replaces a whole bundle of sentences.

I am also getting more settled into the idea of seeing my GP, apart from one 10 mins spent with a doctor about 3 and a half year ago, it’s 5 years since a proper medical visit. On Monday I am going to start keeping a list of the thing that I need to mention as otherwise I will probably land up saying that everything other than my bowels and legs are fine, I have done that too many times in the past. I think that one though is a universal problem just at it is to say to a waiter that your meal is great when it actually is horrid. I was trying earlier to work out why I feel I waste doctors time and I think it is another one of those things that I can thank my Mother for. I have this vague memory and it is in her voice, telling me to hurry as we didn’t want to waste the Doctors time. I can’t remember when or why, but that sentence is tied tightly to her, like so many other things, several already documented.