Challenging Speech

It is strange how much you get used to having you days to yourself, for the last few years I have spent the majority of every day and every year on my own, as Adam clearly has to work, when he is on holiday as he is now it all seems a little strange, his holiday only started on Friday and this is only Tuesday but I have had to check that twice today as with him being here it feels like a weekend, it is just a little odd. Another one of those things were logic says one thing and another part of my brain says another, but not in a scary way this time, just a normal reaction that anyone would have.

The living-room is now back to normal and it looks so much better as I knew it would. It is really hard to explain to others the things that lesions on your brain does to your thought processes especially when there is the perfect logic telling you the world is fine but the fight and flight side is shouting back everything is wrong and you should be terrified. There are loads of occasions where the my two sides of my mind argue over what is happening, that is were a lot of frustration comes from especially when trying to talk. I expect that a lot of people who develop speech problems find it difficult as part of me knows exactly what I want to say, but as I start to talk one of three things happen, it all comes out fine, I forget within the first few words what the next word is, or all words that I had lined up to say, or thirdly I start to stutter and get frustrated trying to get the words out.

For my entire Adult life until just 9yrs ago my speech, was vital to my income, I was luck as a child to have had vocabulary lessons, so I spoke clearly and with a little accent, any sign of an Aberdonian twang had long gone. In my first marriage not only was I married to an English man but I had lived for many 7yrs in England and when finally back in Scotland due to living on a Navy estate, I mainly still mixed with English people. The result of all of this was that most Scottish people would ask what part of England I was from. My first while waiting for my divorce was running a hotel lounge bar, I then went into sales, before returning to being a DJ not just in pubs and clubs but for a while on the Radio. When I chose to return to a more mainstream job I went into telly sales at first, then into operations management. All the way I had clear speech and a fast mind that was ready to answer or fill in any space required. Taking all this into account to suddenly find myself unable to bring two words together, well I think you can guess how I felt.

Strangers treated me as an idiot, they get quickly frustrated with me and that frustrates me more, making the whole thing worse. Speech is like many other things in life you take it for granted until the problems start. Adam being the person that I speak most to used to it and on the whole he is patient and doesn’t try to finish my sentence for me, occasionally he will. I don’t mind normally but if he is in a mood and start doing it to everything I say I get wound up and tell him so. Believe me I know how hard it is to resist completing others sentences, but when it is done to you 10, 20 times a day you land up being hurt in ways other wouldn’t expect. I know I slowly at work spoke less and less everything was done by email as it was the only way I could be sure that what I wanted to say was actually listened to other than completed incorrectly by another.

Stuttering is one thing, it’s annoying and difficult but worse still is when your mind goes completely blank, there is nothing there to follow the few words you have said. Every single one of you will have had that happen to you on occasion it is normal, our brains seem to find it funny to be able to completely embarrass us, mine has become not just embarrassing but scary, I don’t just do it every now and then, well unless you mean 10 or 15 times a day as now and then. I can’t imagine how it would be if I was to be with another person all the time everyday, I suppose it would multiplied up, but to find continually that your mind has suddenly gone blank and on occasion not just to the sentence you were about to say, but to be totally blank, no knowledge of what the conversion was about or why you were even talking. That is frightening. It is almost as though you brain went to sleep for a second and waking up, wiped it clear. To find yourself in that position repeatedly isn’t funny.

Whether we like it, mean it, or do it subconsciously we judge people greatly on how they talk. You can see a stunningly beautiful or handsome person, but if they open their mouths and sound anything other than what you expected your entire opinion will change at that instant. Having all my life received a certain reaction to find that it has change 100% can be hard. The cruelest thing about any disability is often not the disability itself but they way you are treated. Psychological pain is fixed with a pill and is harder to swallow than one as well.

Chaos

I found myself stupidly upset yesterday. I had gone for my afternoon sleep and as I always do before I went I had planned out in my head what I was going to do when I got up. I had taken my time in the morning not really writing or going thought my tweets with any great speed, just taking it easy with a gentle day set out for me. When I got up from my sleep I came back into the living-room expecting to just switch my computer on and get on with my plans, I couldn’t. Adam after years of nagging had decided to surprise me by washing the white wall behind my computer desk. It was taking him longer than he thought it would, not surprising to me as I used to wash it twice a year and it was over 6yrs since I was last able to do it myself. So what upset me? Well that is simple and I think many of those reading this who have damage to their brains will totally understand. I have damage to my frontal lobes and my emotions are closer to the surface if you like, I also can’t cope when things are not where they are meant to be. Adam thought he was doing something really nice but he was succeeding in scaring the hell out of me and I couldn’t hide it.

When I entered the room the first thing I noticed were some ornaments that should be on top of a unit behind my desk were on the fireplace base surround. At that second I felt agitated and I was trying to calm myself when I started to see loads of things out of place and when my eyes eventually found him, Adam on a ladder cleaning the wall. He was where I had to be and everything was wrong. To most of you reading this it will sound really nuts, but I was scared, as with everything were it shouldn’t be meant I didn’t totally know where I was. The space that is always kept set and unmoved was in chaos. Worse still the carefully made plans were also in chaos, as I couldn’t carry them through, I couldn’t get to my PC. There was a small logical voice inside me saying it’s ok, calm down, nothing is wrong, but it was just too small.

Adam could see my distress and came down off his ladder apologising and explaining that he was trying to do something nice, as it was all meant to be done before I got up. I knew all that but my confusion and distress were over powering everything. He stayed calm and spoke to me and I slowly calmed as well, the wall still isn’t finished, as I had to complete my days plans, I had to get to my PC, it was all too much for me to not continue the plans. Once I was sat in my place I calmed down slowly, Adam was great at just letting my calm down and settle into what was happening, there were a few tears as they don’t obey any commands to stay in my eyes and off my face, but for once they didn’t last.

It is really hard to put into word that feeling when something small makes you feel as thought the world has flipped into total madness. I have never known in my adult life anything that would match it before the MS caused it, so to call it agitation, confusion and fear is about all I can say, I can’t compare it to anything else other than once I was in a small car accident, I wasn’t hurt but the shocked fear is a similar feeling. Probably why some use the phrase ‘it was a car crash situation’, I do know it is illogical to react like that but once triggered finding and holding onto logic is impossible, once it is in control it takes time to pack it back up and slot it into place again. I don’t know if you can imagine having that feeling in somewhere that should be a totally safe place to be, your own living-room.

I have written before how I really don’t like things moved and Adam knows it better than anyone else, but doing so with all the best reasons in the world, still really upset me, if he had warned me, I know his surprise would have been ruined but if I am warned I have more control, as I would have played through the worse cases possible and I would have planned my day differently. If my life isn’t the same, isn’t under-control I loose control, not being in control of my own mind is one of the scariest parts of MS, and if you as an outsider so me when I am like that you would list me as mad, completely certifiable. For that short period that is how I feel too.

The past is repeating – fact

In the last few months I have been keeping notes about my left side of my body, I am not sure why, other than an intelligent guess that I have more lesions on the side of my brain that controlled that side, I have always had more problems with it. It was the complete loss of the use of my left hand that first forced me into staying at home and working from here until I was made redundant last year. With out any use of my hand for several months I couldn’t use my wheelchair and I still can’t as I have little strength in it to this day. It took the best part of six months to get enough use of it to not require the brace I wore throughout that time. I tried hard not to wear the brace more than I had to but my hand was safer when in it than it was just dangling around from my elbow, below that point I had no sensation or reflexes, it was a constant danger to itself, I leaned quickly that the braced and held by my other hand avoided unnecessary bruises and bumps. There had been little change in it for a long time, but I notices at the same time as the pain increased in my left leg, more and more of my left arm was loosing sensation.

The palm now is almost gone completely it is a strange sensation to watch my touching it and not feel the touch. When I make a fist the palm feels as though it has died and stiffened, muscles and nerves seem to cause strange feelings around dead areas. It would be like you holding a disc of hard plastic about 2 inches round in your hand and them making a fist round it. When making a fist my finger tips no longer actually touch my palm in the normal position, I can’t get them there, if you place your finger in my hand I wouldn’t be able to tighten my fingers round it, you would feel almost no pressure, the grip has gone for all practical purpose. Add in the constant strange slow pins and needles feeling also tells the story that the nerves are trying to spark with little success, this also happened the first time round. On the good side, although my finger movements are slower they are still there, but getting the right key on the key board without checking where my hand is I totally hit and miss. From the best point that it recovered to a few years ago it is now quite rapidly regressing, bit by bit it is dieing again, I was cutting an onion the other day and my thumb collapsed, I couldn’t grip with it, I also lost all strength in the muscles in my left upper arm. There is no doubt now in my mind that it is once again dieing.

That on it’s own would be bad enough but I have also started to get some of the milder symptoms in my right hand as well. What I can and cannot do is changing again. I have mentioned little bits of this in my posts from time to time but I feel that it is no longer something to keep an eye on but to document as a fact, my left arm is vanishing and my right has quite a few sympathetic symptoms. As long as I have enough strength in my wrists then I don’t have a problem that needs to be braced, it is when the wrist goes there is no option but to brace, as a hand that hands limp on your wrist is completely useless, I am wondering though if I should by a right hand brace in case as happened with my left, I wake one morning to a dead hand.

As I learned from the first time round there is nothing at all the medics can do, I remember the look on my Dr’s face when he found not reflexes, he sort of raised an eyebrow and said ‘well, yes, it’s dead’. He looked totally lost when I asked if there was anything that could be done and all he could say was we just have to wait and see what happens. That was it, I went home knowing exactly what I knew when I went in there, this also tells me that there is no point in even telling them this time. One more step written up and a start point in many ways for a written tracking of what the future might hold. Position now, just as before, wait and see what happens.

Seven steps

I always read all the comments over my different posts from the day before and I started writing a response to my post in this blog left yesterday. To date I have always said that I know what works for me and is often the way it was as I wrote that I realised that I do know where the process of improving my life started and when I wrote it, it all pulled into place, the light-bulb went on above my head and I saw the whole thing in simple to follow steps that made sense. I have written bits and pieces of it all over the place in my blog over the months and although I knew they were written it still didn’t seem possible to put them into logical steps. Well here they are….

Everything starts with structure, the structure of your day form the very start of that day the time you get up. When you are housebound or just unemployed it is all to easy to switch off the alarm clock and never turn it one again. This is a terrible big mistake, you have to choose a time at which you get up every day, no lie ins because it is Sunday everyday has to start at the same time to begin with.

STEP 1

Brush the dust off your alarm clock, choose the time you will get up and stick to it. For me that is 7:30, no that wasn’t the time I got up for work I was up 3hrs earlier than that when I was working in the office, this just seemed reasonable for the start of a day,

STEP 2

You also need to set a reasonable bed time, one that will let you get enough sleep to be able to get up. For me that is between 10:30 pm and 11:00 pm I like to watch the evening new but it has more to do with that being a long enough day without the danger of me falling asleep on the settee.

STEP 3

If your condition requires you to rest or sleep for a period of the day well scheduled that, I know I have to sleep in the afternoon, through trial and error I also know that I need at least an hour or more. I worked out that I didn’t need more than 2 hours I just took it somethings. So I bought a timer which I set each afternoon when I go to bed for 2hrs, if I wake sooner fine I get up but I always, like with the alarm clock get up when it beeps at me. Spend the next week getting used to the new routine of sleep and awake times. That week should have settled you to the sleep routine and you are ready to move on.

STEP 4

You now know how much time you have to fill in each day, but there will be daily things like showering and eating, you need an idea of how long that takes as if you plan too much in your day, you will be disappointed, so be realistic. Step 4 is a ‘To Do’ list. You first list will be a little odd as it is your test list, put everything on that list you now do on a normal day, I don’t know what you normally do but if you do physio, put it on the list, housework on the list and so on with rough times, even put on that list the time you spend doing nothing but watching TV. List complete, the next step is to set that alarm knowing that you have your list, for the morning.

STEP 5

This first day tick off everything on your list as you do it, adding the true time it took so that in the evening you can see how what you thought compare to what the truth is. If you managed everything then there is your first achievement, I know it doesn’t sound like much to do what you already do but it is, because it shows you are realistic about your life as it is, if you are trying to cram in to much then change your to do list, I am quite sure all of you will get those timings wrong on a lot of things. Now is the time to look at all the things you do now that you have to and what you are doing because you are bored or don’t know how else to fill your time. I used to spend more than half my day playing computer games, as I had nothing else I thought I could do. I expect that is something that will be reflected in some form in most lives and it is that time that has to change. That is step 5, what do you want to change what is it you don’t like, make a list of those things. My list of what I wanted to change was huge and daunting to say the least.

STEP 6

This is in someway that hardest step because it involves us all being honest with ourselves. What is it you don’t like and what is it you would like to change in yourself and your life. That is where your first ‘Desires’ come from, this wasn’t that hard for me as I wanted to stop being lazy and just playing games. I knew I was lazy, I knew I could do more and I knew I wanted to write. You might have a hidden desire to do a craft or learn French, but be realistic, I wasn’t going to be able to go back to an old hobby I had of needle point as I didn’t have the dexterity. What ever that Desire is or even if you can’t come up with one, schedule into your ‘ToDo’ list a 30 minute window a ‘find out session’. Spend those 30 minutes finding out online what you need to be able achieve your desire or goal. If you really don’t have a desire, then I suggest you start from something you used to do and enjoy. Sit down at your PC with a pad of paper and start your research, enter it into Google and let it, take you on a discovery session. You will be amazed how many things are achievable for free. One I used to do were online competitions, free with an extra reward of the odd prize. Although I at one level don’t like voluntary work, there are a lot of charities and organisations who need people who are good at admin style work that you could do from home and for many that is a great way of being part of something, even if it is only and a few hours a week. Do not accept that you can’t reach your goal without spending huge amounts of money, because unless you are wanting to do a degree or become a diamond polisher I am sure you will find it if you look hard enough, you might actually even find you come across something you had never thought of doing, that takes you in a new and interesting direction. Each day repeat that 30 min window extending if you want to an hour. Do this for a week and I really wouldn’t accept anyone who said they didn’t find inspiration in that week to write down a ‘Desire’ they really want to achieve. That is also a major achievement.

STEP 7

This is the final step after this you should be able to change your situation enough to change the way you feel about yourself, your condition and your future. Take your ToDo list rewrite it, put in instead of the things you don’t like about it, short sessions starting at 30 mins of working on your ‘Desire’, everyday that you have ticked off all your items on your list you are achieving. It won’t take long until you throw away the ‘ToDo’ list because you will have settled into the routine and your day will have structure, you will also know your desires and your achievements. These are the core of what keeps me mentally active, involved, busy and happy. What have you got to loose by trying. I lost only what was getting me down, I also learned a lot about my illness and what it will allow me to do and not do. Most of all I found happiness in where I am.

Desire

I seem to be running behind to day, one of those days that you just sort of loose what you should be doing as you keep drifting off into happy places were time doesn’t matter. I actually feel good today, that doesn’t mean that I am not in pain, far from it, but you don’t stop being human just because you have a Chronic illness. All of us have days like the one I have today, a happiness that is there just because it is, a happiness to be alive, a happiness to part of the world, no real trigger nothing that is about to happen, just simply in a good mood because I am. So many people seem to think that you loose the average human feeling when you are ill, there is a perception that we should be permanently depressed, continually on a downer, how can we laugh or smile, what do we have to be happy about, we are in pain, can’t go out, no parties, no outings, no life. Wrong!!!!

I may not be physically part of the wider world, but that doesn’t mean I am not mentally part of everything. I still know what is happening out there, I still feel all the things you do, I am still capable of understanding, of laughter and of love, the real changes are physical. Clearly there have been huge psychological impacts when major changes have taken place and I have screamed and kicked my way through, cried and mourned losses, been scared by dramatic situations were I believed there was no way back, but there is always still hope, always expectations of things being better. I have been ill now for seriously ill now for 12yrs always going downwards, if I had spent all that time psychologically in a downward path as well then true, I wouldn’t be a person anyone would be comfortable around.

I still have so much to live for, to share, to enjoy, new things to experiences and so much to learn and to discover, there is still wonders to see and exploration of knowledge to do. My life is so full, that the small problem of mobility has slowly become unimportant on the scale of my life. As long as desire exists, then life exists, I desire all those things and I am not going to let my health hold me back. Chronic illness is a destructive force that has to be balanced by what you desire still to do. As long as my desires out way the illness then what do I have to be on a downer for? In some ways I would say I am lucky, I have the time to peruse my desires and to share my life, to write this, be on Twitter and Facebook, to pursue my goals of breaking apart the myths that exist about MS, Chronic illness and being housebound.

I really now believe that there are just a few things required to survive anything, you must have balance, you must understand what is happening to you, you must have desires and passions, you must have goals and achievements, and you must have love. I don’t think these are isolated to me, I believe that they are the same things required to have a happy life for anyone, ill or not. If you have those things then it doesn’t matter what illness you have, what disabilities you have to deal with or how bad the pain is, there is still purpose and happiness to be found and enjoyed. I fight daily to hold onto all those things and if or when all of those things are impossible or overpowered, then will be the time to be a pain the butt to the entire world and live in a downer, the time to reassess my life. For now though I will remain that impossibly happy, polite, caring and loving person, who shouts about making and having a good, happy, life.