Chronicles of Life with Multiple Sclerosis
There are some part of my MS that are hard to talk about, even with my husband. Last night I had to brace myself and have one of those conversations. When you are close to someone it can be harder to speak than it would be with anyone else. You don’t want them to see you as anything other than the person they married, especially when you have already had to chip off small piece, by small piece of their image of you, it becomes harder to chip any more pieces away.
Adam and I have been married for nearly 13 years, we married on his 21st birthday and we were weeks past our second anniversary when our world crashed around us both. I do mean both, MS has changed both our lives. He has shared each and every step downwards and tried to support me. I have felt so guilty at times as it just didn’t seem fare that he should go through any of it. I had married him as I love him, not to condemn him to being my carer and no matter how many times he tells me that that isn’t how he see it, I feel guilty. So having to tell him that yet another part of me is now failing and I may need his help with it, isn’t easy.
For several years I have had problems with my bladder, it like the rest of me is erratic and uncontrollable. I was taught how to use catheters, to ensure that it is empty, which helps in two ways. First it dramatically reduced the number of times I had infections from a couple a month to a couple a year. Second along with going regularly, as I don’t get the normal messages, reduced the accidents. Despite this there have been times when I have been beyond embarrassed, as once it starts flowing there is no stopping it. To my total embarrassment Adam has had to clean up after me on occasions. So last night was difficult, I had to give him the news that the same is now happening to my bowels.
Over the past few weeks I had worked out what was happening and that was one of the reasons I had called the rehab team. With all the details the team have decided that me fears are right. The nurse came to see me again on Tuesday and we went over the initial diagnoses and options. When I eat the process just pushes it through at the other end, clearly the reason for my weight gain in the past couple of months, the reason that I look 6 months pregnant and the pain through out my torso. Yet again at the minute there is little they can do but try to control it with laxatives, sounds back to front but we will see.
Although I know my MS is progressive and there are no really remissions, sometimes it feels as though I everything is stable and I am in a period of calm, when in the fact it is nibbling away at something inside. I then become like everyone else, unable to see what is wrong and not understanding that anything is. I can and am, frequently as naive as anyone else, when I see my hands not working properly, I know what is happening, when I choke on my food or drink, I know what is happening, but when it’s inside, unseen, it sneaks up on me, tricking me into thinking I’m OK.
I can’t seem to settle today, I have been flitting from one thing to another and I really don’t know exactly what I have been doing to get me from 7:30 to 11:00. I can see little to show for my time and little memory of what I have been doing. This isn’t unusual, just annoying. I sleep for around 12 hrs out of every 24, my time is limited and I like to be able to say I have achieved something each day. I really think my concentration has deteriorated since I am no longer working, I miss the structure, the process of moving through the normal daily list of things that had to be done followed by a mix of adhoc and personal projects. Job hunting just doesn’t replace it. Yes I can set a side a few hours each day to search the web, read the completely wrong suggestions sent by all the web job sites I have signed up to, yet no matter how hard I try to hold to those tasks, I find myself skipping of to something totally unconnected.
Sometimes flitting about is interesting I have found myself Googling something, then heading of into some site that actually isn’t about the search I did, it’s amazing what you can find out about things you had not interest in. I have always said my brain was full of useless information, it now appears that life is full of it as well.
On the serious side I have burnt so many meals I that I have lost count. I now have a rule that if I start cooking, I am not allowed to sit down, perch yes, sit no. Should I allow comfort to interrupt it wipes out my previous actions, pulling me into a TV show or whatever is on my PC screen. MS leaves your brain in a sort of fuzz at time where logic and memory slowly fade into the fog. On really bad days I have found myself stopping all physical action, then waiting, hoping that what ever I was doing will makes itself know again. If I try to remember it just gets worse, the medical term is cognitive dysfunction, call it what you want, it drives me mad. It’s no wonder there seems to be a path wearing itself into my carpet from my PC to the kitchen, it seems to be the room I land up in when I have no idea what I am doing, there is always something to do in there that I can use as my excuse for wondering around, unfortunately that does include food, can you buy padlocks for fridges?
They call it an ‘MS Hug’, I understand why but such a nice name to belong to something that is so annoying and uncomfortable is just wrong. It sound so minor not to bother about, I mean what’s the worst a hug can be. At it’s worse, on a couple of times I thought that I was having a heat attack, I realised I wasn’t when, well when I didn’t die and it let go as suddenly as it had appeared. The medical books say it is caused by legions on the spine, it’s mildest form is livable but annoying as it is like having a band round my torso, constricting my lower rib cage. Why am I mentioning this now, simple I am totally pissed of by being hugged for over a week.
It is something I either learned or it’s in my nature but I don’t complain out loud, I silently scream and expect those round me to hear. The British thing of a stiff upper lip, possibly, but I think I got it from my mother. I never saw her ill, she never had a headache or a cold that stopped her from doing anything. Her home was always pin tidy and clean to the point of being able to see your reflection in anything which was intended to have a shine to it, everything gleamed. I did the same for many years and strangely the things that I miss the most aren’t being able to go dancing, swimming or out amongst other humans. I miss being able to clean my home the way I did, I miss not washing walls and shampooing carpets, I miss cleaning the silver and shining the glass, I miss just having those simple things from my old life that made me happy and proud of my own achievements. I miss not being able to sit and knit, embroider, I miss being creative from the simplest act of cooking a meal to designing and making thing for our home and for my family. May-be that is why I am writing this, may-be I just need to scream in a new way, create in a new way, find pleasure in new things.
When I was first housebound I didn’t find it that hard as I had already moved my focus from my pastimes of old and taken up the role of perfectionist in my work instead. My MS has stolen so much from me and I have had to adjust and adjust and adjust, but were to this time? I am not the sort of person to be happy sat on a settee watching TV, computer games get boring after a while, and nothing seems to replace making my brain work for a purpose. Without my MS I am sure that I would by now have a new job, I wouldn’t have needed to send out over 1000 emails to agency’s and apply for over 500 jobs. I wouldn’t have to keep hearing how good my CV is and impressive my attitude to my illness is. I am fed up being told that I am courageous and a role model, I just want a job and some normality and as the second to stop being hugged.