The trip out and HOME

I have just returned from the Hospital, well not just I have been here for about an hour but I felt so sick when I got back into the house that I have been sat here sort of starring at the screen moving things around. The alarm got me up at 6am as planned and I managed over the next hour and a half to get myself ready to be collected. By the time the ambulance actually arrived I was slightly wound-up just at the thought of having to go anywhere. When you have been nowhere for 5yrs it is a daunting prospect, any way it arrived two guys came into the flat with one of those chairs they strap you into, I can tell you now it is hard and uncomfortable, being carried step by step down through the hall was not that nice a feeling. By the time we reached the front door I was feeling nauseous and the motion of the ambulance made it worse. I think that it was made worse because I had left my glasses in the house, the blurred action of the world passing. I was really glad when they stopped to collect another person and it was just a couple of minutes from there to the hospital. Adam had arranged for the morning off so he was waiting at the hospital for me, there was still nearly an hour to go before my appointment so we stopped outside and I had a much needed cigarette.

There was no one else waiting when we entered the department and I was straight in to see the Doctor, a pleasant surprise to say the least. She was really nice and we went over all the details of the problems that I have with eating and my bowels, she examined me as I expected including the usual embarrassment of an annul examination. I am no closet to knowing what the problem is but Adam and I both left her with the same impression that it is as we expected probably my MS. I have come home with the required containers to supply a stool sample which Adam will drop off at the hospital when I manage to collect it. I am also going back for a ultra sound and I have another appointment with the same Doctor at the start of November, so at least two more visit to go.

The journey home was worse than the trip there, we had to wait for nearly an hour for the ambulance, which was painful as I didn’t have my own wheelchair, they wouldn’t let me take it with me. When we arrived at the house I was brought back up the stair on a ‘stair climber’. It is a horrid motion and I am now an hour and half later just beginning to settle, I really thought when we first arrived that I was going to be sick. I felt so terrible that I couldn’t get back into my normal nightdress and dressing gown, I just wanted to sit quietly for a while and settle. I am so tired now that as soon as I have this posted I am going to bed. Sorry that it is a few word description but I am not up to adding in detail, sleep is all that I can think of. I will fill in the gaps tomorrow.

Learing into the Future

Sometimes I am not as quick on picking up on something as I like to think I am. Strangely this has been on of my beliefs for many years but I realise that it is actually as important to surviving chronic illness, as my belief that you have to keep achieving, for those who don’t want to write or don’t have the space or funds to set up a hobby that requires more component than a PC or paper, at the very list this is something all can do and I did without meaning to. I have mentioned a few times in the past that I have learned a lot in the past few years, not just about surviving illness and how to adapt to a different type of life, but I have learned a lot about history as I have a love of documentaries. I believe strongly that keeping your mind active is important, but it is more than that, I hadn’t realised as it was something I do without thinking, I have been turning my mind to learning and unlike school I am learning what I am interested in. With so much on TV all day long and the sky box to record what is on while I sleep to watch during the day, makes it free and so easy to do.

The strange thing is that when I was at school learning felt like hard work, but when you are doing it because you want to, it is very different. I know a lot of people might think what is the point, well I can see that, it isn’t as though by learning I will be able to get a better paid job or even a job at all, but what it is, is a way of expanding an interest, now that I have the time and the chance to do it. I have found that by making myself watch the odd program that I didn’t think I would like, has also formed new interests that I would never have considered before, notably the second world war. All my life I had been avoiding anything involving it now I don’t think there is a program that I haven’t seen. Although my body has let me down somewhat and even my brain isn’t as sharp as it was once, I still have enough left to work on keeping it learning and keeping it active. That is why as I have mentioned before I worry when I find myself staring into space with nothing in my mind at all, I have never had a mind that stood still long enough to be staring in to space.

Learning is as much achieving as sitting here writing is and I think is just as important. Keeping my mind busy isn’t about avoiding thinking about what is happening to me, but it does stop me dwelling on what I can’t change. It does also give me interests to fill the gaps I would have spent years ago going out, working and doing housework. I believe 100% that if I had done what many think of as the normal journey of slipping into sitting on the settee watching day time bubble gum TV, I would be in a very different state, I believe that I would have been in the state that I fear most, a half human zombie. I am constantly asked how do I stay positive, well this is probably part of the answer, the combination of my natural attitude, achieving, learning and still growing as a person. I am still developing who I am, as long as I am move into new areas, still enjoying discovery of what I didn’t know before, what have I to be depressed about. Life after all is about learning and moving onward, not about looking backwards and wishing what is, isn’t.

Caring for ‘I’

At times, probably because of the memory problems, I find myself sat here without a direction for my writing. At one point I had a list of things I wanted to write about but I found for me that that didn’t work. Writing to a list either caused it to feel flat as I didn’t have the passion of the moment behind it or I found that although I had the subject I couldn’t find the words that day, possibly part of the passions thing. When you are writing about yourself it is hard not to put things down in words that make you sound a better person than you are and that is something I am not. I am no angel and never have been, but I am not a bad person either, well I don’t think so, what I am is just a person. That was part of what I was trying to say yesterday, the scariest part of any illness like mine is loosing yourself. I have often wondered how it is to see what is happening to me from Adams eyes, after all he sees it, I live it and they are very different things. I can only fill in the gaps in what he says on the odd occasion when we talk about it, it is then that I see and feel his pain and that hurts me badly at times. We all want to protect our partners and I can’t protect him from having to watch, and neither of us can protect me from going through it. Chronic illness becomes this huge ball of feelings that neither of us want to unravel, as if we do it will hurt too much.

Dealing with your own feelings can be incredibly difficult but when you are constantly trying to protect another it can become impossible. One thing I have noticed is that it really is important for us to have time to ourselves away from each other. Adam going to work supplies this perfectly. During those hours I have the space needed to allow me to get upset or try out ideas, do things independently without him fussing, like my most dangerous activity, having a shower. Carers can’t stop doing one thing and that is caring, with all the best intentions on the planet it can be suffocating at time, even when I am clearly in a lot of pain getting up and going to the kitchen and back may be painful, but at times it is also essential. Not for a physical reason but for the simple reason that ‘I need to do it’. It is probably one of the most difficult thing to explain as well, those ‘I’ moments. The best I can think of is one that parents see with their children. When they are learning to walk a toddler at some point has to do it by themselves, they have to stand without help, there is a joy in their eyes when they first do it, they are independent of help, they have an ‘I’ moment. It isn’t a one of thing either, as you know at times they still want your help at others they do it themselves and get angry if you help, each time they do it when they want to is another ‘I’ moment. In someways doing silly things for yourself regardless of the pain or effort are needed, those moments when I confirm to myself that I am still there and there are still ‘I’ moments. Frequently help is needed and I am grateful for it, but at others I need to do it myself without help. It isn’t that I am trying to be difficult, or bad tempered, but I need independence to do silly things at silly times, when I want to be silly.

It is hard thought I know for Adam, he doesn’t know when or when not to offer help and when or when not to finish my sentence, the wrong reaction from him can result in my snapping at him and getting angry inside. If he does nothing and lets me get on with it and I actually need his help, well he also knows I don’t like asking for it. There are days when I wouldn’t want to be him, as I know he must feel he can’t do right for doing wrong and I fear those days will increase as I slowly get worse. As I said at the start, being a carer can’t be easy and I have just scratched the surface of it, as, well I am just scratching the surface of the help I will need.

Mind Journey

I am already feeling sorry for Adam, I kept snipping at him last night. Any opportunity and I answered in a fashion that I wouldn’t normally do to him. I am stressing and I have to stop it! It is only Tuesday so I have no idea how I will be by Friday. Yesterday, thanks to having to sort out the transport I got myself wound up about the whole thing, but getting it across to Adam yesterday that I wasn’t worried about where I was going or who I was seeing wasn’t easy, he kept going back to where it was in the building and when I snapped for the third time he took the message and shut up about it. This morning I am more myself again, but that is easy to say as he is at work so there is no one to talk to and no one to snip at.

I touched yesterday about the feeling there is when you are out of control of your own mind and duality that appears in your life, what I didn’t say was that this really is a problem all the time not just when a big stress occasion appears. After the pain and fatigue, the next thing that I was aware of early on before I knew that it was MS, was the effect there was on my thinking. I can see clearly now how others saw it as depression and being quick tempered at times, what I couldn’t explain to them or even to myself was the strange feeling that grew all the time of not being in control and having these two sided conversations with myself. It is one of the main reasons for my life now having to be ordered, but when you are standing in tears in the middle of a shopping center because you are suddenly lost, with half of you telling you to stop it and pull yourself together because you have been here loads of time, the building hasn’t changed it is just a couple of shops, and the other side is telling you that the world is upside down, what do you do then? How do you tell the people starring at you that you are fine, just lost inside a building that I haven’t been in for 2 weeks? It was often easier to let people believe that I had a problem with crowds, or lifts, or even escalators than it was to try and tell them the hell that was in my head. New buildings I had never been in I often avoided or made three or four visits going a little further in each time until I was comfortable to be there. Shopping centers were really the worst, the shops change all the time, so when you find what you know wasn’t there, everything spins into terror. A new shopping center was even worse as it was a case of shops I knew, as they all carry there brand, beside others I knew but I hadn’t seen that combination before, my brain would start screaming all sorts of information at me and I had to get out.

If I am totally honest I think becoming housebound was in many ways a blessing. Apart from work I had already given up going anywhere else, partly because it was all so physically tiring and difficult, and partly because I just couldn’t deal with it all. The outside world wouldn’t stop changing and I couldn’t keep up. It isn’t agoraphobia, not at all, big spaces are often better than small ones, as turn round enough and you will spot something you recognise. The outside world was hard to deal with 5yrs ago, I know and need no doctor to confirm it, it is worse now than it was then, I also know my emotions are right on the surface now, so I guess I would be in tears more than not. I have to admit fully that I don’t think I would last a second out there by myself any longer, even if I had Adam with me, because there is no way of bringing the logic into control of all my mind, I don’t think I would be any better with him there or not.

I know the lesions eat away all the time, they get bigger and they increase in their numbers, I hate to think how my brain looks now. I remember the first Doctor who thought, as it was not his field, that I had MS, was convinced by just seeing my MRI that there was no doubt I had MS. He told me then that I more damage to my brain than he had seen in many patients who had had multiple strokes. I suppose that I should count myself lucky, lucky that I am still in as much control of my life as I am. As I said yesterday, it is the future that scares me, how long will it be before I can’t deal with my home, how long will it be until I loose control of everything and what then?

Two Me’s

Well the letter I have been waiting for from the hospital has arrived!! I could hardly believe it the appointment is for this coming Friday but, oh yes of course there is but, that haven’t mentioned anything about the transport that I need to get there, so I have been trying to phone all morning and the number just rings out without any reply for about an hour, when someone actually did answer they told me that I had to arrange that myself and gave me another number to call. Guess what engaged, on about my 5th attempt I am now in a queue, having waited that long to get into the queue I guess I will be waiting a while, so the phone is now on speaker as I type. I can see how this might work on getting to the hospital but how am I supposed to get home? If this is the system for that well I can’t see how I am expected to get home, no mobile!

I haven’t been looking forward to this from the start but I have to say I am looking forward to it less and less as they days pass. I know how tired I get when things go to plan, if they don’t, I am going to be a complete mess! The appointment is also in the morning at 9:30am just the getting myself ready for it will wipe me out…. They answer at last after 12 mins in queue. It many not be as bad as I was thinking what they will do is bring a stair climber which they will take me down to the ambulance the time they have given to me to pick me up is 8am, so I will need to be up around 6am to be sure I am dressed and so on, it will be an early start for both of us, I will need Adam’s help to get dressed as it won’t be just my normal nightdress and dressing gown day wear, well not quite suitable really. Strangely the bit that had been and still is worrying me most is the getting home again. In the past I have been to appointments where I have seen and spoken to people who have been waiting for hours to come home again. They say the system is now set up so that one hour from my appointment time they return to pick me up. That means that I should be home by 11 I guess, which isn’t too bad I suppose. I know that it probably sounds strange to some of you that I am so wound up about the whole thing, it isn’t seeing the specialist, that bit doesn’t actually worry me at all, I stopped worrying about Doctors years ago. It really is all the stuff round it, if you remember a few weeks ago the state I got into when Adam tried to surprise me by washing a wall, anything that upsets my routine throws me into a panic a feeling of being lost and out of control or everything, lost. A whole day that is disrupted is going to have me in a total mess by the end of it.

I have 4 days to try and get it all in my head but usually it works against me not for me, like anything when you have a long time to think about things, you build it into something it isn’t. Even knowing that, I know how my brain reacts in ways that it wouldn’t have done years ago, and having had people who were sat there in front of me explaining the damage that has been done and the things it will do to me, even knowing all that I still have no control, and no way of easing the problem. Brain damage is a crazy thing to live with, I have in the past explained it as two sides of my brain, at the minute it feels more like two separate brains. So you have just read the rambling mad brain, here is the straight logical one. Two men will collect me, take me to the hospital and bring me back, I will be out of the house for 3 hours. See I haven’t gone completely mad, yet.

A lot of people with MS fear the pain and immobility, I fear the growing damage to my brain. Years ago I did things on in pulse, my mind was fast and agile, analytical and funny as well. Now my emotions live on the outside I react badly to anything that isn’t identical to the day before. Tears are with me now as often as smiles and I have the memory of a gold fish and concentration of a flee. I feel myself disappearing into and blubbering heap of jelly that has no idea what words even are, far less how to use them. I can manage the pain and I am more than content with my mobility, but everything else terrifies me.