Lobe loss

I received a letter from the doctors yesterday, they are sending out the MS Support Worker for their annual visit. I thought a support worker was supposed to be the person you called when or if you need help, it was only when I reached the bottom of the page that I found for the third time in three years, my support worker has changed. I know these things happen, staff change constantly for hundreds of reasons, but another new support worker means yet again I am going to be sat here going over all the history and batty ideas that I have had from the previous ones. I have expressed before several times that it is this sort of thing that makes me turn my back on the so-called help, that is an offer from the NHS, to date their help outside of medication has been anything but helpful. I used to phone the doctors and tell them not to come out and see me, that if I wanted anything I would call, but that caused a wall which meant when I did need help it was harder to get, so once a year every year, I have to go with it. I know what it is that annoys me and that is their insistence they will be able to help when they come through the door, followed by an hour later them leaving having discovered, once again, that I have everything covered. This is also typical, I have 2 weeks to wait for this visit and here I am already getting agitated by it.

I know this is all part of the damage I have in my brain, that the damage done means I can’t deal with anything outside the constant calmness of the life I normally lead. One letter, one change and I am getting uptight. I managed last night to put the whole thing to one side and ignore it as I knew that Adam needed my attention, he had an interview for a position in the hospital that he really wants, but he is convinced that he won’t get. We spent most of the first half of the evening with him saying there was nothing to talk about, but then throwing in something else that happened when he was there. He too has been agitated all week, building himself up for it, as he hasn’t like many people been to an interview for years. Last night he didn’t need me being wound up about something that isn’t going to happen for days. I let myself be absorbed into his needs, then the TV and distracted myself fully until this morning, I think I had only been up minutes when I found my mind was there tied up and winding the rest of me up even further. How do you deal with a brain that can turn nothing into a major event, that reacts to the minutiae as though it is catastrophic?

These are the things that if you aren’t living them, in fact even if you are, that just don’t make sense and finding a way to explain it which is understandable is almost impossible. I am reacting physically as though the world is ending, my muscles are tensed and my mind is racing without barriers and without true direction, just as you would if you had just stepped out of a car after a minor accident. Adrenaline is flying around me looking for the reason it has been called on for, but finding nothing, that just triggers more. I am stuck on a ferris wheel running at double speed and each time I reach the top, there is an uncontrolled drop before it pulls itself back to the top again. I think this is the worst I have been for a very long time, in fact, I think it was the last hospital visit I went to last year, but it wasn’t as bad as this. Now that is either due to one of two things, the damage in my brain has been getting worse, or the fact life has been quite and controlled for a while, that this small thing has triggered what was just waiting to happen. I would like to think it is the second, but I fear it is the first.

Being out of control is something I will never get used to, I was always the one who remained level-headed and found the solutions to things, I didn’t panic, I just got on with whatever was happening and I got through it. To find at the age of 53 I have become someone who can’t open a letter without it sending me nuts, is to me unexplainable. I know the technical reason, that I don’t need to have explained to me again, my brain has become confused with it connections, some are now missing others have built new ones, but kind of got it wrong, it triggers unnecessary reactions to stupid things, I get that. What I can’t get is if I know it is happening, then why can’t I pull myself back into coping with it, as I used to when it first started happening? I am sitting here at this very second with fear running through me, I can write all this, I can be logical about it, but I can’t stop it, it has control over me. Distraction, worked last night, but right now, it is of no use what so ever. Maybe writing about it is making it worse, that is always a possibility, but if I don’t write about it, I am failing in what I set out to do, it has to here for those who might also feel this way and have no understanding, or worse still, feel totally alone as though no one could have possibly been here but them. Trust me being alone in something like this is not nice, I know because I still remember how it felt before I got the diagnosis of what was happening after 2 years of tests.

Doctors telling you why something is the way it is helps to a small degree, but not when that thing is actually going on. Logic doesn’t work when it comes to brains, especially a logic that is as cold as I felt it was when they told me the results. I had to go to see a specialist and go through a range of memory and cognitive tests, the first round of them didn’t even get me a letter to tell me how I had done, I had to wait months until I once again saw my Neurologist, he told me then that the results weren’t too bad but there were signs of some issues and he wanted me to go through the test again, twice, six months apart. I did and I waited for them, the results showed that I have and was still increasing damage to my frontal lobes, which is the explanation for my memory problems, but it is also the reason why I get out of control like this. My ability to control my reactions to things has changed, I am getting less and less able to make clear thought through decisions and I know I have a growing inability to regulate reactions. Both fear and tears happen without any reasons that I can see, but being told all this, rereading it as I just did because I couldn’t remember some details, doesn’t help when you are living it and no one has ever been able to help me get any control back.

If the all the physical sides of MS weren’t enough to stop me from working, I know without a doubt that I would no longer be able to work under pressure around other people, I would be sacked very quickly. In the last 4 or 5 years, I know I have lost my ability to be with strangers because I know it takes nothing to set me off either into crying or to get angry. Adam knows how to handle me, how to keep me calm and how to keep my world constant, I can only hope that continues, but I do fear that the time will come when he can’t. For all of us as we age there is always that fear that our brains will be the part of us that will let us down, I have been living with it slowly happening now for a what feels like a long time and I have found nothing that makes any of it any easier for me, all I can do is to keep documenting it as it all happens.

 

Please read my blog from 2 years ago today – 20/6/12 – New Problem? 

I ended my post yesterday in a rather hurried and odd fashion which I apologise for, I have to say though I spent the rest of yesterday in that odd place. All evening I was still trying to work out why suddenly I was feeling and using the word normal in connection with something that is clearly not normal in anyones life. I know that it may sound like a really odd thing to get hung up on but it…..

Working togeather

Not long after I joined twitter I made contact with a group of people who have been unfortunate enough to have a brain tumor, just one of the many groups of people that I have found share many of the problems that I do. It changed my reason for being on Twitter, I set out with a desire to lift the profile of MS but I realised quickly that many already filled that role and my position in amongst all the different groups was to focus on being housebound and all chronic illnesses that can bring anyone to this point, not just those on my rather long list. I mention the brain tumor group because of their tag, #BrainTumorThursday, Thursday is the day they have chosen as a focus day. I have chosen to bombard everyone everyday, and I never apologise for the huge number of tweets I send out daily, yes I have lost many followers as I dominate the timelines, but nearly one year on, I am just as determined to continue telling the world about my life as I ever was. It has taken me a year to have attracted 23,000+ followers so I have just scrapped the surface.

The more people that I meet on line often with conditions I haven’t heard of, or in most cases that I have heard of, but just didn’t realise how many symptoms we share. The more I realise that my crusade on being housebound was the right choice. It is incredibly easy to become transfixed by the illnesses we each have individually, totally understandable, but I now feel more and more that the name we give a condition really doesn’t matter so much as what we all have in common. Pain is pain after all and if you loose your memory does it really matter if the cause is MS, Parkinson, Dementia or Alzheimers, all of us get in a muddle and forget. I suppose that it isn’t until any of us find ourselves living with something that is impairing our lives, that we start to see that just like the rest of life, being put into a pigeon hole doesn’t actually really help us live our lives. What our individual conditions are matters to the Doctors, they need to know as they have to prescribe for us, but outside the medical world, we are all just ill and all in need of support and understanding.

For me the biggest thing I wanted to know was that I am not the only person who has a symptom, that feels the way I do because of it, both mentally and physically. That kind of support has come from right across the spectrum from able bodied onwards, to people a thousand times worse off than me. It is ironic that I spent so many years desperately searching for the name of what was wrong with me, to find eventually that the name doesn’t matter outside of a hospital or Doctors surgery, what matters is what we can all share with each other. For years after my diagnosis I really thought the only people that could possibly do so where those who where identical to me, I was so wrong. Charity organizations polarize the situation, trying to do the right thing and to offer the help they think we all need. For many they offer exactly what is needed, but I can’t help wondering if more could be achieved if they all worked together, rather than individual on all the same things.

So I shout about being housebound, it is a rather large umbrella that’s true, but for those who reach this point in life it appears to be the only one. Be it cancer, MS or any other illness that steals away the outside world, does it matter how we got here, what matters is how we make it work for us and how we as one huge umbrella can help each other. More and more I see what is identical about everyone, even those who are totally fit and healthy strangely can find themselves here as well due to nothing more than old age. I don’t know how many people are housebound in the UK, I did try to find out using Google and amusingly kept finding articles I had written, in the top ten. Although flattering it showed me how little information there is out there for those who find themselves living this life. It looks as thought I need to start shouting louder!