World MS Day

I just dropped in on Facebook and saw World MS Day and the post asked me how I was spreading awareness. I stopped and thought for a moment; what would be the best way of making someone understand what it's like to have multiple sclerosis? Today this is especially pertinent because I have just picked up my brand new Motability car. To the outside observer I guess I look like a lucky woman; I have a lovely house (half packed up for moving, but still), I don't have to get up every morning for work, I seem to have disposable income and now I have a brand new car!! Couldn't be better?
When you 'get' a disability, everyone assumes you get everything for free. People assume you are given items like wheelchairs, or houses even. I have had people refer to me as lucky because I can have a new car when they can't afford one. I have often replied 'you have the disability and you can have the car', that soon stops them in their tracks. Let me tell you how I got my disability.
One day I was driving to my job at the Scunthorpe Evening Telegraph where I worked full time as an advertising representative. I was 22, fit and active and had only had the odd period of illness over the years. I was just coming over the brow of a hill when I had to pull up in an emergency stop. A car had run into the back of the car turning right just ahead and I had just avoided joining the shunt. I felt my neck snap back and forth. I drove round the crash, making sure the police were called, and carried on to work. Yet, as the day went on my neck started to stiffen and ache, it was swelling at the base of my neck and I started to struggle to move my head. I drove home and took some painkillers and assumed I had whiplash.
The weekend progressed and I started to feel 'odd'. I couldn't feel the outside of my left arm or my little finger on my left hand. I had a strange buzzing sensation down my leg. As Monday came I thought I'd better get checked out by my GP and I rang for an emergency appointment. By this time I couldn't feel the left side of my face properly and I seemed to be dragging my left leg. I was taken from the surgery immediately to hospital. I think he suspected a stroke, but also had experience in neurology and I now appreciate his urgency in getting me there. They immediately started MRI scans, CT scans and nerve conduction tests. Then followed a horrific lumbar puncture, which went wrong and left me unable to even lift my head without being sick. This lasted two weeks and I was given steroids several times over those months, drifting into work when I could and staying at home when I couldn't.
It was later, at a routine GP appointment, that the truth finally dawned. He looked at me and said 'you do know what they think you have?' I shook my head, because no one had said. It hadn't been pointed out to me and at one point I think a doctor thought about telling me, even taking me and my family into his office for a serious chat and then not revealing anything. The GP told me they suspected MS. I was so shocked it didn't sink in. I imagined the MS society posters of a spine ripped out of the page and I wondered if that would happen to me? I had no idea how the disease even worked. I was relieved it wasn't a brain tumour because at least that meant I would live, but how would life be with this new disease. A couple of weeks later the specialist conformed relapsing - remitting MS. I would probably not deteriorate, but would be ill from time to time. I remember some of the cliché's used like 'live a relatively normal life' and 'live an ordinary lifespan', but it was almost as if nothing was sinking into my brain. I was numb.
I remember sitting in the corridor afterwards, watching people pass back and forth and wondering if this was real? It was almost as surreal as Alice in Wonderland falling down the rabbit hole and finding a whole other world where she is sometimes too big and sometimes too small, never quite fits and is always under threat from something just out of sight. I was now in the new world of the 'disabled' and I didn't know how to fit in my world or with my friends any more. People treat you differently when you're ill. They might stop seeing you altogether because they don't know what to say, or treat you with kid gloves because they think you might break, or not mix you with their other friends because now you are 'other' and you don't belong with them. Maybe this was something I felt rather than something deliberate, but it was there all the same.
It took an MS Therapy Centre to educate me about my results and what MS was. I had a lesion on my brain causing inflammation. The myelin sheath protecting my nerves had become damaged and my nerve messages were scrambled. I found this in all sorts of different ways - some days I couldn't walk at all and crawled around the house, sometimes I could walk but stumbled or fell into furniture because my legs wouldn't do what my brain was saying, I would go to pick up a teapot and sometimes my hand simply wouldn't lift it whereas other times my hand would shudder with an intention tremor where I would go to pick it up several times and knock it all over the place.
I started to feel better with steroids and get the help I needed with occupational therapy, physiotherapy, and rehabilitation services.
I manage my MS well now and I have maybe two relapses a year. That may seem mild, but if I tell you that my most recent relapse made me unable to open my eyelids and that should give you some idea of the severity of symptoms. I always have steroids and improve, but in between I still have left sided weakness, right sided wear and tear in my joints because they are struggling to compensate for the left, and I have crippling pain and fatigue every day of my life. I take up to 12 tablets a day to manage my MS and my pain syndrome and there are some days where I am on top of the world and others when I can't move from my bed. Yes, it is mild when compared to my husband Jez who died from breathing difficulties and pneumonia because of his MS 6 years ago, but it is severe compared to the active and fit 21 year old I was. On an emotional level there is a huge toll - I have lost relationships, work and study opportunities, any idea of having children (I have Hughes Syndrome too) and my security. I literally have no idea what tomorrow might bring.
When I picked up my beautiful new car this afternoon I started to drive it away and immediately tears welled up and I became emotional. The voice in my head was saying 'you don't deserve this' and I realised how bad the last few years have been. The Motability scheme I have decided to use means I pay my benefits to the scheme so I can lease a new car, with insurance, tax and RAC cover. It means I have security, but I pay for it, and have just signed over £1800 as a deposit, of my own money. This was not freely given. I have just been in a relationship though where my disability was used against me. Where the person who loved me most told me that it wasn't real, that my difficulties were my own fault, and why did I deserve a brand new car? What made me so special?
What I want to say on this day of awareness is that it is hard to live with MS. Anything we seem to be given is hard won, worked for, and often given begrudgingly. We are disbelieved, disliked because we are seen as a drain on resources and often ignored by the medical community because we can't be cured. Living with MS is hard because it takes away the life you thought you would have and replaces it with something uncertain, shaky and frightening. The best way to understand what it is like to have MS is to listen, yes there is a 'test book' case and medical books you can read, but the best way is to simply try to understand the person in front of you and believing what they tell you. Meanwhile, I am going to try and enjoy my new car!

Letting Go

My last post was about haunting and how difficult it can be to let go of those we love. Although I am still experiencing the anniversary of Jez's death my more immediate problems just do not go away and I find myself having to let go of more stuff.
Despite still haggling over this and that and worrying over the usual hitches of any house buying and selling, this was the weekend I chose to clear out my stuff. I am downsizing quite spectacularly from a four bedroom/four bathroom house to a small two bedroom barn conversion. I am using the excitement of my beautiful new bijoux residence to get over leaving behind this house. It isn't that I love the house really, in fact I never really wanted it. My ex-husband fell in love with the place and I could see a future where we could really build a life together. We moved in at this time of year 4 years ago. It was at it's best, with a garden lush and green, trees full of apple blossom, and bluebells everywhere. This morning I stepped onto the verandah and smelled the warm lilac as soon as I opened the patio door. It is a sickly, sweet perfume that forever reminds me of the opening of Oscar Wilde's Dorian Gray. As beautiful as it was to move in at this time of year; it has made it even harder to leave.
I had hoped to leave in winter with the grey dark nights, the isolation where after 5pm dark falls and it feels like no one else exists. I have struggled to carry in logs and sticks and clean out fires. I also struggled to afford to keep the oil central heating running by myself. It is dirty up here in the winter, cold and muddy and unwelcoming. Yet, as soon as spring arrives you forget all that and enjoy having the doors open in the evenings, the smells of the outdoors, watching bats as twilight approaches and the woodpeckers on the lawn teaching their offspring to find ants.

A skip came on Friday morning and I started to fill it slowly with help from family, we cleared the attic cupboards, the potting shed and Dad cleared the garage as only Dad could. It felt good and cathartic. I was setting up a yard sale, but rain forced us inside. I couldn't believe the amount of stuff I had and good stuff too. We filled the dining room and living room, then branched into the garage with larger furniture and people started to arrive. There was excitement at making some money - I had set the aim of making enough for a rug for the living room and paying to have some posters framed for the new house. So I went into the day thinking about those things and seemed to be okay with it. As friends wrapped people's purchases and I kept taking the money it felt good.
As the day moved on though it felt strange. I didn't mind letting go of stuff, because after all they're only things. Others who came in and seemed more upset at what I was letting go of than I did.
Stuff is just that though; stuff. Books are just books, although sometimes it might seem like they contain your friends, they don't. My real friends were living, breathing people in the here and now cooking sausages and making a jug of Pimms. Ornaments and china are not testament to a life. The life you have is measured by your friends and the people you have influenced and left an impression on. For me this is an even more difficult lesson because I can't have children so I don't have actual mini-me's running around continuing my DNA. Those that remember me, will have to remember me for other reasons; maybe I taught them something, or made them laugh or helped them understand their life in some way.
I have gone through a lot of loss in life, so am constantly learning to let go of stuff. The last six months has been worse than most. My marriage broke down in September, the same weekend my friend Kathryn died, then the divorce and house sale process started and at Christmas my cat died. Its such a huge list its almost comical. Now, as I hopefully near the end of the house sale and get my decree nisi, I am facing a different loss. I walked round my orchard last night in the early evening and was sad at the loss of hopes. We had walked round this orchard just before we got married and talked about what we wanted to do here. Probably a rather naïve view of making jam, growing vegetables, having chickens and doing up the house. The jam making happened and I grew a few vegetables but that dream of working together here as a team never happened. This was my responsibility, the place where I fell in love with an idea of what I thought my marriage would be like. Perhaps, if I'm really honest, I didn't fall in love with the real person there with me, but the person we discussed as we bought this house. I expected too much, that just by loving and marrying someone, they would want to change - to enjoy things they'd never really enjoyed before or that they would learn to love the things about me they didn't understand such as my experience of loss or my illness. I experienced sadness for both of us and that shared future that never happened and became something so entirely different we couldn't bear to live in it anymore.
Letting go off the stuff is easy. It is letting go of the dream that is hard. Also now, I have to face new starts. A new home and new neighbours. New traditions and making new friends. So I am letting go, even though I'm scared. I have to learn to love people as they are, not how they might be some day. Some days I feel there are so many things I have done wrong in life I find it hard to trust myself. So I inch forward slowly, letting go of what I don't need, hanging on for dear life to those who make me happy and embracing all the new things life throws at me. Wish me luck.

Haunting

Haunting

When people write about or depict a haunting in any way it is always visual. A creepy build-up of sounds and events that eventually reveal a malevolent spirit wreaking havoc on all those it haunts. Others depict sad, faint ghosts or apparitions like a sepia photograph that has somehow been left behind in the air. I don’t believe in ghosts, but I do believe in haunting. I always thought that maybe ghosts were a feeling left behind where something tragic had happened or a faint outline of someone who still longs to be here. Yet the haunting is nothing to do with a ghost wanting to stay with us; it’s us who want the person to remain.

In May every year I experience a haunting of sorts. Just as spring is really starting to burst into bloom and there are lilacs and bluebells a grey mood slowly envelops me and leaves me feeling a faint sadness all the time. It lingers behind me like an unwanted tail. Following me from room to room and place to place until it becomes part of me. There are days when I am happy and time with friends is fun and I can enjoy life, but behind it all there is a sense that a part of me is missing and no matter how hard I look I can’t find it.

Jez was my second husband and once we get beyond that Henry VIII statement, I can tell you that he died on 24^th May 2007, which seems like a decade ago but also feels like yesterday. They tell you grief comes in stages but all the books are wrong. Grief comes in waves; small waves that just lap over your toes when you didn’t expect it or great big crashing waves that overwhelm you and knock you off your feet. It doesn’t matter how long ago Jez died, there are times, especially in May, when it still feels like yesterday. The day at 5am when his breathing stopped and an outwardly silent scream ricocheted round my brain obliterating every other thought. I sat on a grass bank outside the hospital and I rang New Zealand to tell his family they had lost an uncle, a son and a brother.

What did I lose? I lost the only thing that had ever kept me upright in this world. My solace, my own stand-up comedian, my cheeky sod with the most charming smile I had ever seen that let him get away with murder. Jez was my dream and my nightmare all rolled into one. As soon as I met him it was a done deal. I probably fell in love with his photograph. He was intrepid, daring, and had some of the most ridiculous impossible ideas I have ever heard – such as skiing on some sort of snowboard/wheelchair hybrid that was never happening on my watch! He was the most romantic man I had ever met in life. Before me he had been ‘a bit of a bugger’ but once he met me he was loyal and the romance never died even after we married (8 weeks after we met).He bought me jewellery, flowers (just because), chocolates, and on one trip to Washington even made his dad take him on a mortifying trip to Victoria’s Secret. The last year we celebrated our wedding anniversary he bought me an engagement ring because I’d never had one and put flowers in every room of the house. I did not know men like this existed.

Jez doing something typically swashbuckling

Yet, even as I had him he was slipping away from me. As the MS worsened its grip and he burned himself trying to make a cup of tea, and lost the use of one of his arms, then needed homecare and then the MS reached his brain stem and he struggled to breathe and couldn’t eat and couldn’t swallow. The last night he spent in our home, my friend and I were eating a take away and his breathing got worse. Even as I rang the ambulance I had no idea that this was it – he was leaving. I walked back into the bedroom and noticed amongst the unravelled wires and equipment a human shaped void where my husband had been. It took more than 3 months for him to die as he stopped being able to eat and infection after infection sapped his strength and he made the decision that enough was enough. I sat and I waited through the night, with my brother sleeping beside me in two chairs and me on the bed trying not to lie on whichever pipe was running in or running out. I wasn’t scared of death. I was scared of who I would be afterwards. With him I made sense. I understood who I was. He had become my purpose and my only reason for breathing and what would be left when he was gone. Nothing it turned out. Nothing but admin and planning and the never-ending silent scream that made me kick things and hurl a phone at the wall and the only thing I could hear in my head over and over again was ‘I want him back, I want him back, I want him back.

In May every year, the scream comes back. It starts with the slow creeping mood and becomes that deep sorrow that accompanies the knowledge that they are gone and you will never see them again. Haunting is not seeing something scary and unexpected. Haunting is hearing something on the radio and knowing Jez would have laughed at that, then turning and remembering he’s not there. Haunting is having a problem that no matter who you talk to you can’t solve because the only person who knows how to solve it and soothe you is not here. Haunting is waking up in the morning alone without that big arm pulling you in for a giant cuddle.  Haunting is not someone you don’t want hanging around you; it is the absence of the one person who could make everything ok with a grin and a little raise of the eyebrow. There is nobody to roll their eyes at me. Nobody to call me the bear of little brain. Nobody to look at me like I was the only woman in the world. Nobody to be my home and the place I return when it’s all gone wrong and I want a good cry or when the most exciting thing ever has happened and you know exactly who to tell first. He is not even in the next room. He is simply not there.

In a book Jez leant to me there was a love letter and it says everything I need to say about living without him and being haunted by him better and more poetically than I ever can:

‘you ask me what I fear most. You know already or you would not ask. It is the loss of the reader, the man for whom I write. My greatest fear is that someday, suddenly, I will lose you. We never see one another and we never speak directly, yet through the writing our intimacy is complete. My relationship with you is intense, because it is addressed every day, through all my working hours. I sit down, wrapped in my blanket, my papers incoherent on the table before me. I clear a space to write, for you, to you, against you. You are the measure of my abilities. I reach for your exactitude and your ambition, your folly. You are the tide mark on the bridge, the level to reach. You are the face who always avoids my glance, the man who is just leaving the bar. I search for you through the spirals of all my sentences. I throw out whole pages of writing because I cannot find you in them. I search for you in all the small details, in the shape of my verbs, in the quality of my phrases[..]I repent nothing but the frustration of being unable to reach you. You are the glove that I find on the floor, the daily challenge I take up. You are the reader for whom I write. You have never asked me who I have loved most. You know already and that is why you have never asked. I have always loved you’.

Hallucinating Foucault by Patricia Duncker

 

Lilacs and Peonies

Its been a long time since I've had chance to write a blog. With a divorce and a house move underway, I've also had to change my name and change my will and at times I've forgotten which solicitor is dealing with which problem! So far we're in the final stages - the divorce is signed and sitting and waiting for the court to complete it. My name has changed back to my maiden name and I am currently trying to make all the different agencies aware of this - with varying degrees of success. My will is changed and I now know that should anything happen to me my brother will be looked after. The house sale is in its final stages and I am half packed, half not and waiting for that ever elusive completion date. I am also coming towards the end of my academic year - last pieces of work due, last presentations and all of a sudden everything seemed to be rushing towards a conclusion and I couldn't see how I was going to get from here to there. The amount of work and the amount of time to do it in just doesn't seem to compute!

Then a couple of Fridays ago I decided to add MS to the mix. I had been bumbling along in my own inimitable fashion and had even managed to add in the odd week away with friends in an avoidance of the hard work to come. As friends will tell you, I am not very good at learning the obvious - the only way to the other side is through.
I had been into hospital on the Wednesday for a phenytoin infusion. I have one every 12 weeks to make a difference to my pain levels. The normal routine is to go in and have an afternoon hooked up to a drip with saline and phenytoin where I read and then fall asleep as the drug makes itself felt. It can vary from treatment to treatment. Sometimes I barely notice it going in, can talk to others, read a book and be fully coherent till I get home. I go to bed a bit earlier and then wake up the next day as good as new. Other times it can be painful going in. The drug can feel cold as it goes into the vein and then create a huge ache that runs up the vein and into the shoulder and then up the side of the face. Mostly its bearable and only lasts about an hour, other times its extremely painful and I have to ask for breaks and for it to slow down. This particular Wednesday the doctor remarked on how small the vein was and decided to run it slower than normal. It was still painful and we had the slow the drip down several times until I was comfortable. I felt very sleepy and came home, had the munchies and waited for my friend M to arrive and watch me for 24 hours. I got through Thursday quite well but still felt stoned. I was telling people very indiscreet stories and had to be driven to go out for a family meal because my pupils were so big they were take over my whole eyes!
Then on Friday things very suddenly got worse. I had been bright and breezy in the morning, even managing a little packing. Then in the afternoon I seemed to hit a wall of fatigue. I remember sitting in the couch with a cuppa and seemed sleepy. Then I realised someone was shouting my name but I couldn't seem to respond. It was like I'd forgotten how to speak and I kept trying to open my eyes but my eyelids felt like lead. Ie simply could not respond. I remember a strange doctor coming in and shining a light in my eyes but again seemed stuck somewhere inside myself. Then an ambulance came and nothing they did seemed to make me respond. I don't know where I was, but I wasn't in the room!
This lasted for 3 days. I could not stop sleeping. Even sitting up to eat seemed an effort and all I could imagine every time I tried to sit up was lying down and shutting my eyes. My doctors decided the only way to bring me back was with steroids. It wasn't until 5 days later that I could fully open my eyes and see one person instead of 3. It was scary. I still slept between every meal and started to walk but on two crutches. The stiffness and pain in my neck started again and diazepam was the only drug that seemed to leave me comfortable. It took a full week in hospital before I could come home. Today is my first day I have been alone overnight and into the morning. I am unsteady on my feet and between a half hour of activity I can only lay down and sleep again. It is such an improvement in such a short space of time, but one hell of a wake up call for me on what my body needs.
How do learn to live a life like this? This morning I realised that there is an analogy, as usual in nature. My favourite flowers are lilacs and peonies. I have a lilac bush in the garden and this morning I could not resist using the time I was upright to snip a few stems and put them in a jug where I can enjoy them in the house. I have always liked to have lilac and peonies in any garden I have had and people have said to me 'what's the point; all that work and they only flower for two weeks of the year'. Yet, surely that's the point. I look forward to lilac and peony season every year. I don't grow peonies here but make sure that while they're in season I buy myself at least one bunch to enjoy. They feed my soul.
My life is like this. It may seem stuffed full of the awful paperwork and emotional heartache of the breakdown of my marriage and the bittersweet decision that I can no longer afford or look after this beautiful house. At the moment I am really going through it, but sometimes in life it is peony and lilac season and those few weeks of bliss are worth waiting for.