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!

Sorting out the clinic

Evenings for me seem to have settled into a pattern that I don’t like but seem to be stuck with, but they are really strange. What I am finding so hard is that when Adam comes home from work until about 8pm I feel totally awake and happy to be sitting chatting and watching TV together, then something happens. It is sudden and complete, in seconds everything changes, I am exhausted, feel physically ill with it, as in a bit sick, dizzy and feeling a little like being drunk but I’m not. The only solution is to go to bed, which can happen anytime from 8pm to 9pm, just depending on how bad it feels. I lie for just a few minutes feeling worse and worse before suddenly going to sleep. It is incredibly hard to spend all my daytime alone and them not being able to stay awake when I do have company. What I don’t understand at all is the sudden change, I am honestly really awake and feel as though I could easily stay up until 10 or 11, then there is this crashing out, like I jumped of a cliff or something. It never happens during the day, although I sleep for a couple of hours every afternoon, then it is a more normal gentle slide into feeling tired and then tireder until bed is my selected solution, normal if you like.

Last night was the normal, to be honest I could have gone to bed earlier than I did but I was waiting for Adam to come out of the shower. By the time I did get there at 8:45 I felt as thought I was almost ready to be crawling rather than walking. As normal the 11hrs of sleep felt like seconds and when the alarm pulled me into being awake, I struggled to let the night go. In the last few days I have read loads on sleeping patterns and those connected to all and any of the conditions that I have, but I can find nothing that is the same as how I feel. Those who have been reading for a while will already have realized that there is one thing I hate more than any other and that is not having a reason for something. I suppose that is understandable having spent nearly 20yrs fighting to have a diagnosis of my MS, but it just niggles and niggles at me all the time. So if any of you have the same problem I would be interested to hear from you as I feel kind of alone at the minute with this problem. I don’t like alone, lol.

My stomach is really bad in the last couple of days, more and more pain, bloating and discomfort, although the letter that was read to me over the phone has arrived, I haven’t received an appointment yet. The letter doesn’t seem to hold out much hope though, the final line she says she isn’t sure if they can do anything to improve my symptoms due to my MS, I still want to talk to them again as I want it in black and white if you like, that all my symptoms are due to my MS and if there is anything, even something small, that can help I am willing to try.

I phoned to book the ambulance for the 8th when I am going to the pain clinic and nearly lost it on the phone when they told me they couldn’t supply a two man team with a stair climber to get me to hospital before 10am. Every time I call them the rules seem to have changed and I thought that this would mean that I would have to make yet another appointment and wait yet another 6 to 8 weeks. I booked the ambulance then called the clinic to find to my relief that they were fine about it. Although I am meant to be there for 9:15 they do now allow for this when you are being brought to clinic by hospital transport. What is now worrying me is that they said there are only 4 slots where you can book the stair walker each day, so I am now wondering how long I will have to wait to be brought home again. I really don’t think they understand the stress of these constant changes and uncertainty cause for people who are ill. After all they are there to supply a service and the simplest thing to do I would have thought is to inform the patients clearly of the rules at that time, as well as to tell the clinics, after all they should have known the situation when they gave me the 9:15 appointment. I foresee another day of things going wrong!

Disability living

I’m in a clicking mood today, which I guess is another way of saying the world is a little foggy, just custard up to my ankles and rising. I’m not sure when it started but I have noticed that I now take a strange happiness from foggy days, maybe just simply because the day passes before I know it, as I’m not totally locked into anything I’m doing so there is no chance of being aware of time. The more I look at this odd illness I am finding compensations in some of the symptoms, almost as though there exist purely to make life easier with the rest of them. I doubt defective cells actually think on their own, but along with a sense of humor, some do seem to be compassionate. Well how else do you explain something that on one hand fills you with pain and makes you fall all over the place, then lets you totally forget about it, or locks you in your home where there is little to do and little to keep you busy, then makes you sleep most of it. I suppose life is like that as they say give with one hand but takes with the other.

Luckily other than my usual left leg from hell and a digestive system that won’t fade back into the background as it is for most people things are reasonably settled for the last couple of days. When things are on the good side I still get this urge to see if I could hold down a job and live a productive life. Even on occasions I question if I am really as ill as I normally feel, then everything changes again and those thoughts disappear because I have no doubt that I am ill. I don’t know if this the normal cycle of feelings for all in my position, I often think it is there because of all those years that I was told by Doctors that there was nothing wrong with me. The years that I began to believe them, not knowing that those good spells were remission, something long gone. It may be just a longing to turn the clock back and to be part of a world I haven’t even seen for many years. I know that it’s nuts to even think about working or anything along that line, but I guess we all want a simple life, earning our way through each month, rather than being forced to live on a minimum income. It is actually really hard to accept, if you go to my front page of this blog there is a set of 6 pictures showing different views of how chronic illness is perceived, but there is one thing missing from it and that is how it feels to be in a position that means I have to accept disability payments. So often there is this view that the chronically ill are pariahs, scroungers, living off the country. What isn’t seen or even discussed is the pain that being in that position can actually causes in itself. I long to be in the position where I am earning a living again and I could sign off and not accept those payments. Without them well we wouldn’t have a home, or food or any of the basic things we all need to live, but it doesn’t mean we are happy to live this way. If I could go back to looking at my bank account and seeing one payment going in per month, rather than 3 that don’t add up to anything near what I had before, believe me I would be really happy. I am extremely grateful that there is that safety net that takes over and shows a level of care from all those who are able bodied, but pride I suppose makes me find it hard to accept that this is the way it will be for the rest of my life.

Disability comes with a whole rack of things that are hard to accept and are so often the total opposite to what those who are fit and healthy can’t fully understand. There are hurdles from day one onwards, hurdles that are outside how your health makes you feel and this is just one of them, but because it is so focused on by governments and charities it is one that goes on month after month moving in to years. On the psychological side, pride is one of the most painful things to have bashed time after time after time and especially when so many out there see you as some type of fraud.

There is no fear.

I had a message yesterday from someone on twitter yesterday in which they said they admired my ability to cover my fear, I didn’t answer it at the time as 140 chrs would have been impossible. I just hope the lover of honeyed parsnips is reading today. To some I know that it will sound odd but fear isn’t actually something that I really feel towards my MS. At times I guess I have, but not in the way I would fear someone standing with a knife at my throat, there has never been what I would call a tangible fear. At first when I was told that I had a progressive condition I did have a fear of what it would do to me, more a fear or worry about each individual symptom, not about the whole condition or the fact that my life will eventually shortened by it. Fear I think is far to strong a word and I know from talking with others all those feelings of first diagnosis don’t seem to last for any of us for any great length of time.

Even now when I have so much of my life taken over by it and so many symptoms that no longer permit me to live the life I dreamed of, I still have no fear. There is a strange acceptance of the fact that this is the way life is, a feeling of having to take each step as it appears and doing what I can to deal with it. Even now when I know all to well what each thing on it’s own does and what together they are capable of, I still don’t fear my MS or my mortality. The closest I get to fear is the feeling that I have about the speed things are moving. There is the small window in my life that I don’t want to look at and that is the window now opening further. With the development of my mind now creating it’s own stories and it’s own reality. I wouldn’t use a word as strong as fear, but the thought of being locked in that state doesn’t fill me with joy shall we say.

Illness is an odd place to find yourself and I understand that so many who are fit and well can’t totally grasp the place that our minds live in when we know our own mortality, but fear for me is not one of them. I have said before the being forgetful is often a blessing and I guess this to falls into that category, I can with ease forget the things that scare me, regardless how real they are. Maybe a simple way to explain it is this, I live my life in physical pain all the time, but when one area stops hurting until it starts again, I forget it. When asked by someone where do I get pain and what is it like, I can answer with ease about those doing so at that second, but I find it hard to remember all those that are giving me peace. My entire life is like that, I can answer with confidence about how I feel now, but last week, I don’t know and I know even less about next week or year, what I don’t know or can’t remember can do me no harm, and less so can I fear it.

I live my life now in a peaceful state mentally, I don’t get upset often and usually when I do it too passes into what I don’t remember. There is a tranquility now in my life that is a joy to live in and one that I wish I could teach all others to understand and live in to. There aren’t many pluses that come with illness, but this is one of them, one that make life easier to enjoy and live.

A lose of trust

Yesterday evening I discovered that I have been telling myself lies and doing so with great ease and accuracy. This is a little long I know but bare with me as the sequence of events is important. Every second Saturday it has become a tradition in the last few months that we have for dinner garlic bread and different flavors of chicken wings, I went and took them out of the fridge to find that instead of wings there were drumsticks, for the life of me I couldn’t work out why but it seemed logical that ASDA’s had sent a sub although I didn’t remember looking at them when they arrived, I always check subs visually. Despite that I settled that into my mind and called Adam to the kitchen to see if he wanted anything to go along with it and relayed my first lie with ease as I thought it was right. At that point I remembered that I had bought some honey parsnips for myself, my mind then changed the story, that I had intended for Adam to have the larger portion of chicken and I was having parsnips as well, lie number two. After we had eaten there was the blinding second when I remembered what the real truth was, I had bought the drumstick, no substitutes, I had never intended to eat any of them, they were all for Adam as he loves large quantities of meat. The day they arrived I was supposed to have told him that all of the two boxes if chicken along with 2 garlic baguettes where his to eat when ever he wanted and that I was having 2 baguettes and parsnips when I wanted them.

OK that was a long story about nothing on the surface, but the important bit is this. I couldn’t remember the truth or the fact attached to it, so my brain invented a possible sequence of events and fooled me, not once but several times. Each story could have been a possible truth and each time I accepted it without further question as the total and complete truth. I know the final one is right, as when I remembered it was a clear click into place. I can’t help now but wonder how many times I have done this before without the final bit, how many times I lied to myself and worse still, others. Clearly I have invented a way of dealing with the things I know longer remember and I really don’t like that, accuracy and truth are two things I have always held on to tightly. How can I be sure now of either?

I have known for a long time that I now have short term memory gaps and that to me was bad enough, loosing your ability to know what you were actually doing is something I was prepared for to a point. Recently as I have said before I have to check things more and more. I have found myself writing my blog and totally forgetting the subject by the time I go to post it on twitter and so on. I knew long before it got this bad that I would be wondering around not just physically but mentally trying to remember what next, but I wasn’t ready for this story building at all. I really don’t know how to deal with it or what the answer to it is. Short of writing down every single little thing I do and why am doing it, there is no way now of really knowing what my intentions or actions are. I find myself feeling somewhat lost, when you can’t believe what you think is fact, then lost is the only place I can be. I know it clearly hasn’t done me or anyone else any harm but the potential is worrying. My reaction like most people is to want to think about, it work it all out, but how can that truly get me anywhere, I can no longer trust what I think, I am thinking.