Doing well?

We had already said “Good night”, told each other that we loved each other and Adam had shut the bedroom. Then, it opened again. “You did well tonight, answering all those questions.” I was sat in the dark on the edge of the bed, still trying to put my earplugs in, but that made me smile. All I had done was sit with Adam in the living room, filling in the remains of the PIP form we have been slowly working through. Am I really that so far gone, that answering questions about myself, requires such a statement to be made? Actually, I am.

Our previous attempts had ended up with me totally frazzled and feeling like I had just been asked to write an essay, on my opinions on War and Peace, an essay, that couldn’t be one letter shorter, than the original book. It is incredibly hard to sit and have someone read out word for word, the questions, then to sit and formulate the correct answer, then dictate it.

Reading has been a problem now for a quite a while. I used to be a really good at reading, despite the fact that I have dyslexia. I had learned a system that meant my brain would put in the most logical word when I came across one, that I couldn’t fathom, as long as it was in my head, it wasn’t a problem. Fortunately, once we leave school, we’re seldom asked to read aloud. It worked for me and was amazingly accurate. Something has gone wrong in this system over the last few years. These days, I insert the most ridiculous things, words that change the entire meaning of a sentence or leave me totally confused. The worst thing is, once I have inserted that word, I can no longer see the original. It simply doesn’t exist. When it comes to reading a blog, or details of anything online, well my perceptions and conclusions don’t really matter, but government forms or mail are important in a very different way. The result is frustration, agitation and frequently brings tears. So now I have to sit like a child, listening to Adam reading it all out slowly, to be sure that I am understanding exactly what is really there. Even though I know what will happen if I do, the temptation to grab the letter or form and read it myself is huge. The longer the paragraphs are, the more likely on top of that is the possibility, that I will lose concentration, and have to ask for him to backtrack.

Filling in forms, especially important ones like the PIP form we were filling in last night, means I have to come up with not just answers, but accurate ones that give a clear picture of my situation. Giving such answers, is something that is filled with dangers. Clearly the first is my memory. How am I supposed to give the date of this or that consultation? Remember when or where something first happened, or how things have progressed? This is my memory. There are 4 years of daily writing here, but searching it, is difficult and finding details, is even harder. Adam has to not only read out the form to me but, he also has to write down all my answers. If that form was online, then no problem, I could have sat here and typed them all, spell checked and deleted and redone them over and over. Paper forms have boxes to be filled, for people other than me, to be able to read, something that simply wouldn’t be possible. My once script perfect letters are now spider markers walked over by an elephant. It was my art teacher who taught me to write. Letters didn’t work for me, but when they were turned into art, I got it. I even remember one of my ex-bosses saying that my acceptance letter was one of the most beautifully written pieces she had ever seen, I hate to know what she would say now.

So there we were, Adam reading and writing and me, trying to give full answers. My concentration doesn’t just take me away while Adam reads, but it also fails me while I am answering. If my answer is long, plainly Adam will start writing, then ask me “what came next?” Next, next to what? Once more I’m somewhere else, I don’t remember what I said, so once more, Adam has to read back not just my answer so far, but often bits of the question, so I can work out, just where we are, and so it would go on. It has been a slow and difficult process for both of us. When you have been ill for so many years, it’s almost impossible to answer some of the things that they want to know. As for the current situation, well, to be honest, the main problems in answering them, is the fact, it is a paper form. There are never enough lines, or big enough boxes to allow for you to make a mistake and correct it. The words you choose, and the way things will be read by a stranger, are so hard to predict. One word can change the whole meaning of an answer, one word, you can’t even change, if you spot it on reading it back. If, it could be done online, I could spend time, just as I’m doing right now, writing, thinking, writing and re-writing again. No, there’s no pressure, no reason to be wound up as tight as a drum, but they know that’s just what it does, and we haven’t even got to the point when they might want to carry out a medical.

Together, we have filled in their form to the best of our abilities. This doesn’t mean that it will be what they are looking for, all we can do is hope. Did I do well last night, I think we both did.

 

Please read my blog from 2 years ago today – 03/03/2014 – Keep giving

Despite Adam being on holiday again today there is a strange silence, he is actually in bed snoring rather than on the settee. I have to admit his being here at all had me lost as to what day it was when I got up, mind you it doesn’t take much for me to lost so that wasn’t really a surprise. I have noticed this weekend something strange that I am still trying to work out why when he is asleep I select my TV viewing by what I know will least annoy him? It’s mad the things we do because of……

 

 

 

 

 

Getting ready

Trying to get through the first day of this silly diet that I have to be on for the endoscopy on Friday. When you live on a totally different diet and open the fridge to see melons, satsumas, seeded breads and salad, all that can’t be eaten, is horrid! For my breakfast I had a wrap with nothing on it, that was all I fancied eating out of what was a possible choice. There is nothing like temptation to make you feel hard done by, lol. I will really be happy when Friday is over regardless of what they find, I will hopefully be able to open the fridge and eat, rather than see it as some kind of torture.

Over the last couple of weeks I have had something new going on, I didn’t mention it to the Doctor when we saw them at the hospital the last time I was there as it had only happened once, but I now keep getting these terrible spasms, as though someone has stuck their hand into me just below my breast bone and grabbed everything there in a vise like grip. I doesn’t cause any pain anywhere else, but it increases that sensation of pressure that I have under my ribs. It doesn’t burn like indigestion, so I don’t think it is my stomach, once again it is more a crushing of my upper intestine. On Monday it was there most of the day in a much gentler way, it never cleared, the sensation was almost as though I had a tennis ball sitting in that position, doing nothing but getting in the way. When I eat it increased and on two occasions it was intense for about half an hour. Yesterday there was no pain or discomfort at all that I remember but today it is just as it was on Monday, a constant gripping pressure. I guess that I will have to mention it on Friday before the Endoscopy. I think I said it before but I really feel as though I am slowly decaying and falling apart, some days I wish they would just get on and fix it and on others I wish they would just leave me alone to decay quietly.

My tiredness isn’t lifting at all either. I think in the past 3 weeks I have only managed on a couple of occasions to stay up to 10 o’clock, I’m so tiered that even 9pm is pushing it. I hate it when I need to sleep this much as I hardly get a chance to spend any time with Adam. He seems to be home for just a few minutes before I have to sleep, it isn’t much better at the weekend as he has always slept away the mornings so I am going for my mid day sleep at about the time he is getting up, so we really only get from 4:30 to 9:00pm together, then once again I am asleep. When I am like this I feel as though we are just passing each other occasionally in the same space.

I realised the other day I am heading rapidly into my first anniversary as a blogger, it was just before Christmas last year when I wrote my first post and looking back at it I can’t believe how bad it was. I am not kicking myself for it as well we all have to learn and writing may be something we do daily in notes, emails and so on, but it is no comparison to writing what may be read by total strangers and you have decided has to come from your heart. I so often hear from people that I have been incredibly brave to share all of this but I can’t see it that way at all. I suppose we all judge and apply different standards to different things, but I have never made a secret out of any part of my life with those I know, so expanding that wasn’t hard. The hard bit is finding the words that explain everything in a way hopefully everyone understands. When you are talking about something personal, which illness is, you use the word that make sense to you, that doesn’t mean anyone else will know what you are talking about. Strangely I although hard, I have enjoyed doing that, it has been my daily mind work out if you like. I’m going to have to check the actual date, well it is a writing milestone if you like. I actually thought when I started that it might be a bit of fun for a few weeks, I didn’t realise what I was starting.

Dreams to the future

It is strange how your life can be taken over by something without you giving permission or actually realising it is happening. A year ago I never thought that I would be writing a daily blog and being very active on both twitter and Facebook, somehow it all happened. Life for me has followed that pattern all to often, drifting into one thing after another and still no real direction in anything. I think it is true of most people, we just are, and we just do. Clearly when I started to blog my goal was for me to have a record, and I had no feeling or desire at that point to take what I was doing beyond that point. I found myself though with a purpose and a direction, which is kind of funny when you think about it. My life and my writing are all about actually not being in control any longer, but it has delivered the first strong goals I have ever had. I don’t think that I have actually written them down before as they are so long term that I have no idea if I will ever succeed in completing them.

When I started writing that clearly was about my MS and little else, how it affected me and how things felt when they were happening. It grew from there into my second blog which was my feeling about all kind of different subject, post that were designed to make people think about all kinds of topics that they may never have really thought about or even heard of in some cases, to me that was the fun side. Between the two I opened myself up totally to the world, there is little now that is still unsaid, not hidden on purpose just not said yet. Just before I started my second blog I branched into Twitter and it was my rapid growth in followers that started to lay down the ideas of the goals I now have. MS is not the focus any longer so much as all chronic illness and most of all those who are housebound. No matter where I have looked or searched that is no real information or network for those who are housebound, nothing that gives them a voice and it really feels and looks as though we are the forgotten ones. It was this that pushed the current goal of writing a book, I was asked by several to do so and it is turning into a slow process as I have already scrapped it twice as I wasn’t happy with it, version three is about to be started, hopefully this time it will work for me.

Once I have my book complete and published in what ever format I eventually settle on, then I can move on to the next step one that I think will start to make the most difference. I have this idea of setting up a support network for those who are housebound and their carers, a place where information can be pulled together, not medical definitions but as I have done here, where an person with any chronic condition can add their description of the way it affects them. Hopefully there will be enough people involved over time that it will supply description that people can actually understand in layman’s terms that it will be a resource for all. As I said a big plan that I might not ever be able to complete or even get of the ground.

I have come across so many people who are living lives that the ordinary person in the street working 9 to 5 have no idea even exist, people who repeatably say to me that I put there feelings into words, but I can only do that for the things I know about, there have to be others who can also do this and add to the site supplying help in away that is just as important as any medicine, the knowledge that you are not alone, others are going through the same thing. Once housebound you don’t meet others, you can’t talk to other patients you might have once met at a clinic or a support group. Being isolated from the world is one thing, being isolate, trapped by an illness is another. I want to raise the profile of all those in my position, including their carers and families, just having others in the same position words, to reassure you, means an amazing change in how you feel and how you cope.

Well that is it written, that is my goal, a long way off and may be just a dream for ever, who knows, but I do know that there has to be a better way of keeping the world open to all, surly the internet can supply it and provide that missing link in our lives.

Arrangments

I am a lot brighter today, as I thought it was just one of those days and there was no escaping it, I just had to get through it. Days like that happen to all of us, and I am lucky that they really don’t happen that often. I am not sure how or why but I really do get less of them now than I used to, some might want to put that down to the constant flow of antidepressants but I am not so sure. I think yesterday was really about trying to get my head round the new addition, especially as until I talk to the specialist I won’t have a clear explanation of what is really happening. It is always easy to say don’t think about it, but as we all know the more you try not to think about something the more you actually do think about it.

I have a therapist coming tomorrow, Adams mother goes to yoga and through talking to the class teacher they arranged for me to see a woman who works with other people with multiple chronic conditions. Although she will be here in the morning I still can’t make up my mind as to what help she will be, it is hard for me to see how she will help me as massage is her specialist area and I already know without trying that pressing areas that hurt makes them hurt more, I can’t find anything in me that sees how that will improve anything. I went to some alternative therapies before I know it was MS in a hope to find relief from all the different symptoms I had and all they ever managed to do was make things worse. I am trying to keep an open mind but it isn’t that easy. She is due here at 10 am tomorrow so I will be a little behind with everything I normally do each day as I expect she will be here for at least an hour.

I am hoping that she will be able to help with my legs they are still the worst part of everything. Adam did some housework in the living room yesterday with the results that I had to walk round the room today repositioning all the ornaments. Just the act of doing this with the small amount of bending and remaining bent for a few seconds, has left them aching and fatigued muscles. Activity levels is now zero for awhile while they are recovering, in other words once again having to put sitting pressure on my pelvis so my legs can rest. Oh the fun of doing nothing. lol.

Once again I have spent all morning stopping to dial the number for the OT service but at always all I ever get is the engaged tone. I really don’t know how you are meant to get hold of these people as not once have I heard anything else but engaged. The letter I have doesn’t even have an email address so that you can contact them that way and writing a letter seems ridicules these days, you know I can’t actually remember the last time I wrote to anyone, yes sign things and post it back but actually sit and write something then put it in an envelope with a stamp on it, I have no idea at all. Strange but I use to write letters all the time and it is now something that nearly no one even thinks of doing, I suppose that it is yet another of one of those thing that has disappeared into the past to be lost for ever.

The learning process

Thank you for all the tweet answers and comments left yesterday. The result is very much what I thought it would be, that I should gently stretch but not try to over stretch the tendons. Even those with MS or similar conditions agree despite the balance of causing pain in the muscles, it seems that it is the price for maintaining as much mobility as possible. One of the problems of MS is that the muscles slowly wither away, exercise of the muscles doesn’t and can’t change that, they waste slowly, some of which is now visible but also as they waste they seem to go stiff almost a permanent spasm that can’t be or ever releases. I am like everyone else though, if I don’t need to have extra pain I avoid it, stretching the tendons is extra pain. I often think the should put in brackets next to the name Multiple Sclerosis (pain), there doesn’t seem to be much that it causes that doesn’t include either or both physical on psychological pain. I have set up under my desk already a rolled up sleeping bag with a book on top of it and to release mild spams I find putting my feet on to the book and gently rocking then like an old fashion treadle does slowly help, so I am going to try and use it even when not in spasm as a gentle stretch on my tendons, then in the evening when I have my feet up a more extreme full stretch to the tendon running all the way down my leg and see in a month if it is helping at all.

I always find myself in these dilemmas as I know exercise is good for Fibro but it isn’t really for MS, with MS all you actually achieve is faster fatigue and more pain, if it were possible to know exactly what is causing the problem actions would be easier to decide on, as I also said I have an added problem of osteoarthritis so I have to consider the impact on that as well, which is why I prefer the option of doing stretches while sat rather than standing, of course standing has other dangers, so seated really is the safest option. There are days when I sit and write this and I know I am painting a really pathetic image of myself, I don’t feel pathetic until I read it back. In many ways that is also useful though as I spot when I am slumping into a slight self pity mode. Self pity has never achieved anything for me or anyone else on this planet, so I kick myself and move on.

I would highly recommend to anyone out there who is housebound that you set aside even just half an hour each day to write out your feelings and progress it is great therapy even if you don’t post it to the world. For me the posting bit is probably why I keep doing it, I know daily, people out there read and they learn or empathize from their own experiences, it has turning into an unpaid replacement job in some ways, a purpose to my day. It is strange though how words run out of me onto the page and I don’t realise until I read it back what I have really said, hidden often within straight forward words a lot more feeling and far more depth than I thought I was actually writing. On occasion I don’t realise just what is there until someone mentions it to me, it amuses me at times when I am told I am positive when I think I have written the opposite, I read it back with new eyes and I see what they are reading. Too much of me at times is poured out here and I take a risk daily that someone will take exception to what I say, or read into it that something that isn’t there behind my words. I think the bravest thing I do is not live with my illness but letting the entire world, should they choose to, into my deepest thoughts and my deepest feelings. I write everything as you may have noticed, there are no walls here in print, but they often still exist when talking. That is why I recommend you all try it, without those boundaries you learn so much about yourself it is amazing. Yes, just like you, I too am learning about myself.

When things change rapidly in your life it takes time for you to understand exactly what the impact is or will be, so I can in a matter of a fact way that something has happened, let say the pain in my leg. I am not going to sit and tell Adam in detail how the pain is, I don’t do that in my head either, as I think I know. When I write it here I have to allow for the fact that you don’t know, I have to find a way of telling you the detail, by doing that I am analyzing it and looking into myself for all the different reactions that that then causes, then I write them. All these processes have led me to understand my illness to a far greater extent than I did before I wrote, that is why I recommend everyone does this, even if you don’t want to share it as I do, it will help you I am sure. I know I still have a lot to learn, there are still many things I am not ready to write yet, but I know that I will, because, I now know I have to.