The Buddhists believe we should accept suffering as being an inevitable part of life but although I did my fair share of emotional suffering I had had no experience of the way a crumbling body can literally – to use that now over used word – make daily life so agonising that you long to be free of it.
My head rolls around on non-existent neck muscles making my chin constantly sore from pressing down on the chin support, the two spokes pressing against by chest. And I am virtually unable to do anything for myself.
My dear friends try their best to comfort me and I’m frankly amazed that they still want to when inevitably I break down in tears. I wish I could tell you how, despite everything, I still enjoy life; but I don’t.
Finding the exotic in the everyday is how my doctor describes the pleasure that can be found in the most ordinary things, like having a cup of tea or sitting out in the garden with a good book.
Each day I sit in my chair reliving such simple pleasures that I took for granted,
never imagining I’d end up living in a crumbling body
April has brought sleepless nights and total terror and desperation. Each night I have been waking with my heart racing and a dreadful feeling of breathlessness despite the Bipap and being propped up in my hospital bed and with an overwhelming need to get out of bed and sit up which of course I am unable to do by myself so I have to make moaning noises and hope gateth can hear me which he generally does.
Then the performance of getting me positioned correctly in bed starts again and you can imagine the strain of doing this 3 x a night has made us both ragged with tiredness and so I spent several nights sleeping on my chair. however wearing my collar all night is hard and I never realised how heavy a head is- a stone apparently- until I had no neck muscles left. I am unable to lift my head myself and the pressure on my chin is unbearable at times. But my nurse who visits weekly has taken things in hand adjusting settings on Bipap suggesting stronger sleeping stuff and of course my family friends and carers have tried their best with my constant crying about living.
In this nightmare world, Today I remembered how on a Satueday we d go to the cinema about 4 walk down to the Tollgate in Turnpike Lane have a few drinks And then eat I liked lasagne or sausage and mash
Oh what I would give for one of those days again so ordinary at the time but so amazing and wonderful when I look back from where I am now. What was the last meal I ate? I wish I had known as then I would have savoured every Delicious mouthful and not worries about getting fat. This week I dreamt about eating toast Nd marmite oh how I crave food. So all of you out there remember to enjoy every sandwich as Warren Zevron once said.
I wish I could tell you that managing to get my wheelchair out of the house and into the spring u sunshine filled me with joy it it didn’t . My sister my carer and gareth all dragged and manoeuvred me down the ramp and across the road so that I could feel warm sun on my face and see the lovely blossom on the tree. And yes it was good to feel the warmth of the sun but it also painfully reminded me lof past springs when I strolled in the park with Scrappy or went shopping for new clothes , things I will never do again. No, I will never again paddle in the sea, or eat a huge ham and pineapple Pitza which was my Saturday night treat , jump into my car and switch on the CD player as I drove off down the road. So when I got I inside I just couldn’t stop crying despite my sisters best effortss to console me .
Sometimes the pain of living in this disabled state really does feel too much to bear.
however a visit from an olld friend from Cheshunt school gave me a few good laughs at some of the madness there and the fun we also had. and for a short while I was transported back to my healthy life. I d also received an e mail from an ex pupil from Cheshunt and three more messages from ex pupils following my blog.
but I wish with all my heart I didn’t have to die.
A lot of people have called me brave but I do not accept this word about myself. Certainly when I was he’s,thy I considered myself to be a terribly over anxious worrier who wfrightened of lots of things: waspz heights driving on motor ways authority figures who shouted swimming in the sea……the list could go on and on! Having this horrible illness has brought out all my morbid fears of suffocating or choking and of course dying itself something I also thought a lot about when I was well. What a ridiculous waste of energy! I should have beeb savouring each day eating peanut n butter and banana sandwiches every day and thinking about all the things I wasn’t afraid of-
i cry everaa day about being ip ill I am consumed with jealousy by a all healthy friends. And I don’t want to tell the world how much I am. Still loving life because I don’t.
I m not brave I m just trying. To stay alive though some times I honestly wonder what for.
My life is now spent in my special riser recliner chair specially designed for disabled people because she switch lifts the chair up so that your carer caa. Help you to stand . Yes and I am fee loo feeble I need someone with me all day and she is with me 10 hours a day -12 hours in the chair a apart from exciting excursions to the kitchen to. Have the mucus suctioned out of my mouth a d medication and liquid flood put into my peg. This tiny world is the one I exist in and will be until at some point in the next few months i pop off. And I hate it. Mum talked ba out patients turning their backs to the wall but in my case I can’t even turn over Without help.
i spend a lot of time n my head remembering the person I once was who could drive, swim run talk and look after hersel. When I sit in the kitchen bbeeing washed a d dressed I think of all the tiimes I dashed about in the mornings before heading off for school and I would give anything to go back in time just for one day and be a normal healthy person again.
4 days after my last entry the kitchen ceiling fell in due to a leaking toilet and I had ad several wakeful nights with a blocked nose and constant sneezing fits. A visit from the hospice physio and my outburst of sobbing led to my admission to my local hospice where I ended up spending 10 days. The first night was a disaster with nurses unfamiliar with my weak respiratory muscles not realising that lying on my back makes me breathless. Hysterical thrashing from me resulted in me passing out with a full blown panic attack. They ended up ringing gareth as I refused to get back into bed and they didn’t understand that I need to sit forward in order to type and obviously thought I w was trying to throw myself off a chair. The next day full apologies were given and each night after that they were very careful with positioning me in bed. However, for 10 days I barely walked and by the time I got home my legs had turned to jelly and instead of feeling glad to get back I felt very insecure and vulnerable. Never in all my previous catastrophic imaginings had I listed the walk to the toilet as one of my fears but now the effortt now needed h ad suddenly become immense. In ten days my legs had become almost as feeble as my arms. Depression descended As I realised everything had changed again and I had gone down a few more steps on the motor neurone staircase. A hospital bed arrived filling our tiny bedroom and leaving g and scrappy sharing a tiny z bed. Two falls resulted in a very sore arm and after Xmas we waited for my new carer to arrive: someone who would be spending all day with me.
17 years ago today my mum, Sheila Lucas, died aged 69 in Colchester Hospital aged 69. Non Hodgkins Lymphoma claimed her life, coming without warning the previous year. Our dad hu NGO onto the ashes until he went into a home this year and me, my sister Karey and brother Viv decided it was time to scatter them, She and Dad had enjoyed many happy times with their grandchildren in Frinton and Walton so we thought we could split the ashes Between the two resorts.
Yesterday morning we set off in Robbie’s new car to Frinton , Bruce Sprringstein blaring out from the amazing sound system. Being as we all went I d asked Viv to borrow a wheelchair from his hospice as my legs are so weak now. In actual fact he borrowed 2 as our 87 year old dad is not great on his pins either. So assembled in Frintowe I was put into a wheelchair and we set off along the sea front. It was bitterly cold but Sunni and it was wonderful to breathe in the sea air. Mid way between Frinton and Walton we stopped and waited for people to move away then Viv took the jar of ashes out. Viv, Karey and I all said a few things and it was heartbreaking hearing our dad tell us he didn’t know what to say. We all threw a handful and whilst Robbie, Owen Viv and Karey scattered ashes on the beach I sat weeping as dad reached out to hold my hand.. I couldn’t help thinking of course about my own death and how one day it ll be me in an urn my family scattering bits of my charred remains in our local park as I ve requested. However, the sun beamed down through the darkening sky and i also felt peculiarly happy.
We e headed to a warm pub and had a few drinks before going our separate ways.A sad brut very uplifting day which I think mum would have approved of.
I live now in a constant state of terror. Two weeks ago I fell over trying to use the remote control and spent two agonising hours propped up against the bookcase waiting for g to come home and even then with my weak legs it was a terrible struggle to stand upright. Getting up from the chair that I spend most of my life in now gets harder every week and as I sit here alone in the house I find myself imaging falling face down on the floor when I try and get up and answer the door to my carer. Scrappy was certainly no use when I fell he did not display Lassie like skills like trying to pulll me upright or summoning help he merely lay on the sofa looking scared! Fear of falling is mixed in with fear of my legs giving way ccompletely and having to be permanently in a wheelchair with all the problems that will cause in our small house. And then of course there is my beloved one remaining finger that I type with that I know will inevitably go the way of the others and them eyegaze will be my only means of communication.
LAst week whilst attempting a family bonding trip to see some physical theatre the trauma of getting me in and of a black cab was almost too mucha to bare and we all ended up very distressed as I squirmed and squawked in the back trying to get into an upright position so. I could breathe .
Soon, I know I’ll need a full time carer and yet still sometimes I wake up and imagine that this nightmare has ended and I ll have metamorphosed back into my energetic healthy fomer self.
Sincere apologies for my silence typing has become very very hard and I now only have 2. Fingers on my right hand that work. Each night I hope that they are still functioning in the morning they are my link to a world I am increasingly cut off from . I have my stairlift and recently my eyegaze computer but god is it hard to use. You have to use your eyes to focus on a letter, hole it down then move onto the next one and a apart from being slow my eyes seem to flicker randomly across the keyboard refusing to go where I want them to. I can’t imagine ever getting to rely on this for all my social interaction.
i ve also turned into a box set junkie spending hours in front of the tv something I never did in my previous healthy life.i I watched 6 seasons of The Sopranos in a matter of weeks and felt bereft when it ended particularly since the actor died in real life in June. Mind you he went suddenly after a good night out which seems a much better way to go than slowly being paralysed the way I am. Now I m motoring through Lost which I m not sure i understand at all but it takes my mind off things as we head into the cold, dark evenings. I never imagined I d see another Christmas, and maybe I won’t, but I m not quite ready to go yet and anyway, my book is soon to be Re released by a real publishing company. Watch this space.