Positive Damage

At times it is all to easy to stop looking out and to spend too much time looking in wards, when you are ill and on your own a lot of the day you loose that feeling that there is a world out there. I often wonder if that feeling is compounded by the fact that annoyingly it has manage to get on fine without you, and you just weren’t as important to it as well think we are. I constantly keep coming across people who like myself are ill and confined to their homes and far too many of the are deeply depressed by the whole situation, a bad side effect of spending so much time looking in. I know I am really lucky to not really suffer from depression, I have days here and there that are reaction depression, the type that we all have when something major goes wrong in our lives. But the deep set clinical depression is something that vanished from my life when I was diagnosed with MS, all the depression I had gone through for years just disappeared as at last I was being believed and I at last knew that there was a reason for how I had felt for so many years. But there are then the ones who seem to react in the completely opposite way, diagnosis for them seems to be the trigger for a life long depression.

Having gone through it years ago I can empathise with those who just can’t deal with what is happening to them and slowly slip into that spiral that pulls you further and further down. I know it all to well and I am so glad that I am free of it now, although from time to time that it may come across in what I write as being depressed but I’m not, I am just reacting strongly, something I have little control over due to the damage that has been done to my brain by the lesions I have. I have wondered as well if it isn’t these lesions that have something to do with my upbeat reaction to life. There is no doubt in my mind that there is a connection, well if I can be flung into tears when they aren’t appropriate, why not laughter as well. I know myself that in situations like those of the other day where I was totally stressed in the space of a few minutes by a phone call and in tears before I hung up, equally cleared in less than an hour. I am completely emotionally unbalanced, those reactions are not those of the average human, nor was the recovery from it.

The last time I have a test done to see how I react to a selection of tests, showed that I was loosing it. The cognitive results where strongly not normal, something I knew but it had to be proved. I also know if they did those tests again the results would be worse again, but now I question that word “worse”, as everything is slipping I still remain upbeat most of the time and that sets me out as different from other who are going through what I am, could it be the cognitive damage is actually working to my advantage? Could the damage actually be making me happy? It is a thought but one I can’t prove. I am sure if I submitted myself to a visit to the MS specialist he would want all those tests done again for his research, well they wouldn’t actually help me any more than having them done before did. Doctors seem to be obsessed with tracking things, a tracking that doesn’t actually help the patient, it isn’t as though they can change any of what is happening. I could and probably are totally wrong, but either way as long as I stay on the up side of happy, I know that all of it is easier to handle, I just wish that I could do something for those who struggle to accept what is happening and continue to find the good things in their live, as they are there, just as they are in yours or mine.

Normal abnormals

Shopping day again, it seems to come round so quickly although it is once a fortnight not weekly. I am just waiting to hear the van outside and the noise of sliding doors, followed by clanging sounds as the green plastic boxes hit the pavement. I always hear it long before the door bell rings ,and to an extent I even know which delivery guy is outside by the noises I hear, it strange how we learn these things, like when waiting for a friend to arrive we jump at the sound of a car, just in case it is them, but we know when they do arrive as we recognise the engine sound of their car, and the others, well we jump to them, as we don’t trust ourselves to get it right. I don’t remember being quite so good at it when I was mobile but it does seem to be a skill that has grown, the less able to look out the window the more my recognition has improved. They say that when you loose one sense another takes over, it may be my mobility that has gone, but my hearing and brain have worked together to form an alternative.

With the shopping due this morning I also know that Adam will be home for lunch today. Weather permitting, he will come home for a brief visit most days, but on shopping day he has taken to coming home regardless. The delivery men are great and they put into the kitchen the items that I have to put away there and then, the items for the fridge and freezer, but the rest is placed on the hallway floor, from there I pick up bits and pieces that I can lift and slowly put it away, taking some rest every few items. There are of course things that I can’t lift and move, I used to always just leave them on the floor in the hall and Adam would put them away in the evening, then suddenly for no reason I can think of, Adam suddenly decided that they were a danger to me. He thinks that with them there I might fall over them, it is something that worries him a lot, I know that. If for instance he is hoovering and leaves the hoover somewhere to do something else, he warns me it is there, in case I might some how not see an upright Dyson hoover and fall over it? So today all the heavy items, that I agree I might forget about, but would always see, have to be moved by him not for my safety but his peace of mind. It is really sweet of him and I know it is done out of love, but it makes me laugh as I hate to think what is going on in his head to see it as logical. I do wish that I could put his mind at rest over many small things, but I have tried and failed so many times that it is easier really to let him do what ever it is he feels he has to.

To date not one of the falls I have ever taken have been due to me tripping over or walking into anything. If I am to fall it is always for one of two reasons, either I have simply lost my balance, most likely when I am turning a corner or just as I am standing up, especially if I have been daft enough to kneel on the floor, my balance doesn’t seem to want to deal with the different shifting angles involved in the standing or bending process. The second reason is slightly more complex, I have vaso-vagal which means that my heartbeat can drop suddenly causing my blood pressure to drop and then I pass out. Some actions like holding my hands above my head, to say shut the curtains, but normally for no reason at all the nerve will be stimulated and over I go. The Doctor who diagnosed the vaso-vagal said it was most likely that my MS has damaged the nerve but it is something that also happens without any outside reason. What ever the cause the fact is I don’t fall over things, I just fall over as simple as that. It is one of the reasons that I stay close to walls and furniture as I have developed an art of more sliding down things, rather than simply hitting the floor, it saves me from knocking myself out which has happened in the past.

Falling is part of my life and it is strangely another of those things you learn to live with and find a way round i.e. my sliding down rather than falling. We all adjust and absorb these things into the new normal, but they remain a source of worry to those around us, it is hard to remember that at times. I doubt that Adam will ever see it as normal and I suppose that is one of the things I love about him, illness is an odd collection of abnormal normals.

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.