the last burnt sienna crayon

Leonard’s story is a true one. In the years between 1917 and 1928 there was a worldwide epidemic of Encephalitis Lethargica (EL) which left patients in a seemingly catatonic state. (Warning: If there is anyone who has not seen or does not know the story of Oliver Sacks and the EL patients as told in the movie and book Awakenings, this post will contain plot spoilers.) In the summer of 1969 neurologist and author Oliver Sacks (renamed Dr. Sayer in the movie, as suggested by Sacks himself) was the wizard who experimented with the brand new, in ‘69, Parkinson’s drug Levadopa (L-Dopa).

And they woke up.

People like Leonard who had been asleep for 30 years since childhood or young adulthood — they-woke-up!

Can you begin to grasp the enormity of that? To fall asleep as a child and wake up in your 40s? What the world must have been to you after all that you had lost! What emotions would you have to deal with, and would you be ecstatic to be alive or angry for the life you had lost? What about the family you had left behind in your illness, then regained as a different person? What about the griefs, the loved ones who died, after you had fallen asleep, to wake up and find out they were gone, but you were here? What about the new technologies and culture which you didn’t see evolve slowly, but were introduced to in a flash? What about discovering life in a very post pubescent body having never been old enough perhaps to even fancy someone before? Well, Leonard and the other EL patients treated by Dr. Sayer/Sacks went through all of these confusions.

What does that have to do with my own story? Anything at all? Maybe.

You see, those little red tablets The Wizard prescribed for me, although they weren’t L-Dopa, are used for the same thing, to increase dopamine in the brain. The two drugs are sometimes used in combination with each other for Parkinson’s patients. Dopamine is one of the three neurotransmitters thought to play a role in clinical depression and it is the neurotransmitter responsible for pleasure and motivation. Dopamine has to do with energy and rewards and is implicated in the ability to experience love. I have read that we are all dopamine addicts.

I don’t want to describe the life that I had wanted to replace, that’s another story and not for here, but if you can imagine a life with absolutely no motivation and no pleasure, no reward and therefore no will, though it doesn’t constitute catatonia, it’s not really something that you would prize. The difference within 5 days of taking a dopamine agonist was not only startling, it was a bit scary too. As the EL patients, I was both ecstatic to be alive and angry for the life I had lost. And I was now awake enough to be aware of how much I had lost. I thought I had been before. But there was more. More I hadn’t seen before. And having played with my brain chemicals it has taken me a little while to find my feet again when it comes to relating to other people. I still don’t feel that I’m getting that part right. I can’t seem to read people, situations, emotions quite like I used to. I hope I get used to it.

My general pessimism hasn’t completely gone, either. That’s developmental and too entrenched. So the thought can’t help occurring that if it’s too good to be true it probably is.

Sadly, Leonard’s story does not have a happy ending. He began to develop a tolerance to L-Dopa, as all the EL patients did. His condition began to deteriorate until he reentered a catatonic state. And his mother had to watch. She lost him again. And he lost everything. Again.

I’ve been traveling this road with MS and depression for more years now than I haven’t, and I am aware of the instability of things. I am aware that everything changes, life is gained and life is quickly lost. I don’t know what will happen next in my story. I don’t know if I will continue to find a balance (it hasn’t been very long like I now am, anyway). I don’t know and sometimes I get scared. Will I simply “forget how good it is” “what it is to be alive”? I will probably “need to be reminded about what [I] have and what [I] could lose.”

And I’d like to find a way, with all of my gains and my losses, with all of my joys and my griefs, with my new life and the lives that I have known to make them one life and not many. To make them an integrated me. Not one that bounces back and forth between this and that.

And you, my friends, help. You do. You are able to remind me how good it is. Because if it starts going back to my old life again, like it did for Leonard, I don’t know what I’ll do.

And then. . .

. . . The joy of life.

So I walked away from the pharmacy clutching my little red pills, dubious that something so simple could metamorphose the ruptured life that I had so carefully placed on my shelf for safe keeping, storage and dust collection into a new jumping, singing and dancing life that would get up, hop down and make itself known.

Day 1 — I knew it wouldn’t work. What do I do now?
Day 2 — hmm. . . then again. . .
Day 5 — this isn’t my life! OHMYGOSH I have a new life!!!

Each day, I seemed to gain a new feature. At first I was ecstatic! All my old life ever did since it got dropped was sit on that shelf and get dusty. My old life was a constant disappointment to myself and to others, never living up to the manufacturer’s grand claims of what it would be able to do. But this new thing. . . this new person I seemed to be becoming. . . well, it just worked. It got up and moved almost like it was supposed to. And oh, the freedom of leaving the house! Oh, the places beyond my front step! I was shaky on my new legs, but learning to walk quite quickly.

And I was loving it!

But by Day 10, the post transplant confusion had begun to set in. Waking up one day and finding that you’re in a different body after having spent so long in the old one creates a bit of whiplash. Everything happened so quickly. Everything had changed, in such a short time, but the memory was still in tact. I still had the old memories and the old experiences, but they no longer fit the new person and I didn’t know what to do with them.

I began to suspect that I might have noticed a few unwanted aspects to this new life, but decided to ignore them. I was probably just overreacting, and besides, it was better to have a working and fully functional life with a few unwanted characteristics than it was to simply be broken. . .

. . . wasn’t it?

(to be continued. . . )

About a month ago I decided that I didn’t like my life and I didn’t want it anymore. So I went to my doctor and asked if I could have a new one transplanted in the place of my existing one.

We discussed all the different lives that medical science could make available to me, and having done my research, I knew which one I wanted to try.

But my doctor said, no, they had never transplanted that kind of life before and wasn’t confident enough to try it. But I could have this other one, over here.

So thinking that it was my only option to get rid of the life that I had, I agreed. Doctor wrote me a prescription and said that my new life should start to become evident in about 2 to 4 weeks.

Dubious, but obedient, I took the script to the pharmacy, got the little tablets and took them home. Still dubious, I wanted to look up what the features of my new life would be before I committed to it, and. . .

. . . NO!!! I don’t want that kind of life either!!! So back I went to my doctor, and asked once again for the original type of life that I wanted to transplant mine for. Doctor’s head shook, and I was sent to the transplant consultant,

The Wizard of Oz!

who would give me further recommendations and take responsibility for the proceedure.

So off I travelled down the Yellow brick road, wondering if I was truly going to be seeing a wise and grey bearded, old man who would fix my life for me, or simply a short little coward behind a curtain who was pulling levers and shooting flames up to make himself look bigger.

Again, we talked about the various lives that I could possibly trade my failing one for, decided that whether he was wise or not, I would have to take his advice as the only way I could trade the old for the new, so I said yes.

The wise and/or presumptuous wizard wrote his recommendations to my doctor, who sent me off to get more little pills, and told me that he would send some needles in a few weeks time to make the transplant permanent. Pills would perform the transplant, syringes would prevent rejection. All of these things, I was told, would start to transform my old unwanted life into a shiny new one.

(to be continued. . . )

Today was confusing.

Today I talked.

A lot.

I was nodded at.

A lot.

But I’m not completely certain about the level of actual communication that we were able to achieve.

I had made decisions, presented my cases, then was offered other choices, then stuck to my decisions, then didn’t, then considered other options, was allowed only certain routes, fully allowed others, was looked at like I was insane (how I hate scrunched up faces), until I’ve traveled back and forth so much, that I’m not even sure what happened in the end and what will come of it.

But I’m not very hopeful. Whatever it was that happened.

Yes, it’s time to hibernate. Hibernate, eat, hide and drink mulled red wine. And besides, mulled wine doesn’t count towards your weekly allowed alcohol units. . . does it?

The fact that I have written so little as of late (both on and offline) is evidence to this fact (the hibernation, not the alcohol units). Long nights, evening skies at noon, cold rain and wet, rotting leaves. I find December difficult and Thanksgiving to Christmas a bit teary. And I guess also this year getting flu (probably Swine flu) which turned into chest infection (bronchitis/pneumonia – was actually a bit frightening at times. One gets attached to the act of breathing.), and not getting treated quickly enough hasn’t helped my usual “happy go lucky” general life attitude. (HEY! No heckling in the back there!)

I came down with it was the day after my vaccinations, so therefore I only assumed it was a side effect of the jabs and didn’t get checked until I really was in a bit of bother, which delayed my treatment for the infection.

I love antibiotics. No really, I do. I’ve been on them almost 10 times this year, and I always just feel safer once they’re in my system. I guess having a damaged immune system can be a bit scary at times, especially when you just can’t seem to fight something off. So an “immune system in a pill” is a great idea, I think (even taking into consideration my usual reaction against all things tablet shaped!).

My cat is ill, my mom is too far away, my husband is travelling, and my friends must all want to be hibernating as well.

I’m in a bit of a resentful, self pitying, “i love you, go away” slump just right now and I am sorry. I’m sorry both to you, Reader, and to those who must encounter me in the everyday, that I am a bit of a “little black rain cloud” at the moment. I am trying, I promise. I’ve just got my head down and mostly trying to direct as much of my tunnel vision and non existent energy as I can at the Flower Child, who has been such a star while mummy has been ill.

(aside: toddler tip for ill mums: create a small gentle set of “duvet games” with your little one. Hide and Seek works well. They will love hearing “where’s Flower gone?!” until you flip back the duvet and exclaim “There she is!”, and it allows you to be vaguely horizontal for as many minutes as you can squeeze out of it. Hide and seek with toy animals works well too. Also the game “the one who moves first looses” is a good one. Anyway, it worked for us.)

I can’t see how to shift this fatigue or cough or lassitude or blue mood for the foreseeable future, and Christmas has always been a tough time for me anyway (at least since coming here from there).

So please show some forbearance with me, and I’ll try to at least act vaguely positive. Maybe by next week, at least.

Oo. And I mustn’t forget to get some ice cream.

Well, the orange/yellow leaves have mostly blown off of the trees across the street now and the view out my window gets decidedly darker earlier and earlier in the day now. The view will hold considerably less interest very soon, so i turn to sounds instead. The purring cat beside me, the whir of a motor, the fireworks popping in the distance, my daughter laughing. Now is the time for hibernation, the time to burrow down and pull up the covers and clasp a mug of hot chocolate between my cold hands.

I used to be more hardened in this kind of weather and would simply wrap up and go outside anyway. But now, more things start to go wrong in my body at this time of year, not big things, just more things, and I’ve learned that any energy spent unnecessarily is energy wasted. I’m tired and fatigued, I do less, I enjoy less, I smile less. The seasons of my life are changing and I realise how unappreciative I have been of the time past that I shall have no more.

Of course along with that knowledge comes the knowledge that I am not appreciating my time here at the moment either, and that I will soon look back and wish I had spent it and cared for it better. It all seems such a hopeless cycle from this stage in the year. Unrelenting cold and dark and the endless replay of the same themes again and again. All I can do from this point in the year, is keep warm and wait for spring. I always do, and spring always comes. . . but it looks such a long way to there from the beginning of the winter.

Yes, I realise that winter is not really here until mid December, and now we are only beginning November. But in my chosenland, as I have said so often before, I feel as if I have been robbed of my seasons. They blend together for me now because of where I came from. What was once four, for me, is now only two. And both of them grey and rainy. Only one is colder. And I know you will find my viewpoint a bit unkind and unforgiving, but the truth of it is how I feel and how I see it. And I can’t be any more honest than that.

Because I remember younger days in the homeland over summertime nights, in green country fields with friends, lying on our backs, the fresh fragrance of hay and grasses in my nose, looking up at the stars in a pitch black sky and watching meteor showers, listening to crickets and watching fireflies. I remember winter snow days off from school, building snow forts and tobogganing down the steep hill behind the cemetery by my friend’s house, and trudging back up again, knee deep in crisp white snow that would last for days. I remember mountainsides hemming in the river valley, completely covered with autumn colored trees, a delicious quilted carpet of red and orange and yellow and brown. I remember the spring flowers, the sweet smell of lilacs most of all, and my mother’s crocus that would greet me by the front door in March and tell me that things were moving on and it was time.

Moving on was exciting to me then. And now I resist it, I push back and bolt the door to keep it out, along with the cold of a new season. I don’t look for new seasons now, in the trees and in my life both. And I can see myself sitting here wrapped in this warm fluffy blanket with this hot mug of chocolate for quite some time, and not noticing the crocuses when they reach out of the ground to point me where I am to go next. Maybe I missed them already?

The fireworks sound louder through my curtained window, and I realise that I left my attic window viewpoint too soon. . . It’s too late now to see them. By the time you hear the bang, the pretty sparks are gone.

So this morning I’m booked in for not just one flu jab, but two. The regular one plus the swine flu vaccination. And as of right now, I’m not sure I’m going to go through with the swine flu one today, as I’m on my own with the Flower Child all day today and tomorrow (husband is travelling with work), and from what I hear from all corners, my arm will be rendered pretty useless for awhile afterwords.

Three year olds and any immobility of the parent don’t go well together.

Oh yeah, plus my fear of injections doesn’t really help me make a dispassionate and practical decision.

I’ve been so eager to get vaccinated, particularly against swine flu, as everything I get knocks me for six, and could actually be a bit dangerous for me, with my ‘house of horrors immune system’ and all, and taking care of said three year old will be impossible if I get flu, which would immobilise me even more.

I’m very thankful really that I have the opportunity to get the vaccine, with my reaction to illness and all, but then there’s my reaction to drugs too. The question is weighing up do I risk delaying it (possibly a substantial time, knowing my surgery and their general approach to appointments) and therefore risking getting flu (there’s so much of it going round, as you may have heard) or going ahead and having it today, likely not just getting the sore unusable arm, but probably running my system down and being fatigued for the next three weeks until I can see my acupuncturist again? Remember, my body doesn’t like or react well to drugs, and I’ve been really run down lately anyway.

I’ll let you know what I do and what happens.

Sometimes, just sometimes, mind you, I begin to suspect, only slightly, that it might be ok, just ok, you understand, not desirable or right or rewarding, and certainly not auspicious, but just simply ok. . .

. . . to stop trying so hard.

At least for a few minutes, anyway.

it’s a strange thing.

it’s a strange thing to wake up one morning after twelve years in a practical drug induced coma and find that nothing hurts anymore. Just that quickly.

No, not a coma, because there was still life there, just an altered one. More of a zombie, than a coma. It’s a complex explanation, what I mean by that, but it doesn’t feel that urgent to elucidate right now. Suddenly, I don’t feel that I have to.

My friends haven’t even relised. People are still acting towards me as if I worry, as if I’m anxious or sad. They say “oh don’t worry… blah blah blah” and pass on pieces of advice to help me through the crisis. . . when I’m no longer actually in one. They mean well. But’s it’s clear that my old state of anxiety made others anxious, and I am sorry to have been a burden. I don’t know who I am yet, myself, so I don’t say anything and I smile and nod. . . and wait until either I’m better at explaining or anybody wants to know enough to ask me something about it.

I have very little memory other than things that I have written either on my blogs or in my journals, and I don’t necessarily currently want to review.

Recently, after I woke up, I got curious as to what had happened, so I went to my doctor and asked to be made a print out of every perscription drug that I had been perscribed since 1997 and the date ranges that I was on each. This is a small charge, but my right to ask for under the Data Protection Act.

The print out came to 50 pages.

450 individual perscriptions, some repeated for years, some one offs.

I counted 38 oral medications, 22 topical skin allergy treatments, 20 individual perscriptions for 7 different antibiotics and 6 different anti depressants perscribed over 12 years (one of which, I had been on for several years and at several different times, but is now removed from the market, because patients started dying of liver failure while being on it).

Some of the drugs were as benign as moisturising lotion and ibuprofen, others as strong as pethidine, immunosupressants, an anti-narcoleptic and 3 different antipsychotics (percribed to me not for mental health reasons, but because they were known to have helped in various MS symptom treatment, like pain and virtigo. And no, they didn’t help me.) just to name a few.

Plus the list did not include any medication that I had been given during my 4 or 5 lengthy stays in hospital or scripts written directly by my consultants.

I have researched the side effects of each one and looked at the number of various ‘drug cocktails’ I was on and also tried to align what I was taking when different things happened in my life, and the pattern is shocking. I feel like I can be less hard on myself for having achieved so little over that time. I am aware that several of the things that I was on, and combinations thereof, nearly killed me. Litteraly, not figuratively. It feels a bit traumatising to realise that, and I’m not fully able to think about that yet.

This morning I sneezed and took an anti-histamine and my daily multivitamin. That was all I took. I’m ‘clean’.

I’ve weaned off of everything else, even the self injections.

It’s all out of my system and my brain and body has now got used to making and using it’s own chemicals again. (brains stop doing it for themselves after having it done for them after awhile.)

I feel good.

I haven’t had a panic attack since 18th of July, and I’m not even anxious about possibly having one anymore. I barely remember what it feels like. That doesn’t sound like a long time. But the difference is amazing!

I can pray again for the first time in a very long time. I won’t get into the spiritual side of all of this right now, but there is one. I don’t recognise myself, but I’m happy to wait… because for the first time in 12 years, I’m calm enough to do that. I’m hoping that I actually have another 12 to wait in.

It will be good to meet you all. . . again.

9 am

am now faced with a decision.

go back to bed or do something.

the full intention is of course to do something. but the temptation of couirse is to go back to bed. with the Flower Child back at her playgroup, there is scope for me to do almost anything.

no, it’s a career day. it is. it is. i must find determination. must call the gallery and find out about courses. i’m not ready to give up the last remaining shreds of hope that i may someday become a useful, functional, contributing member of society.

but horizontal is really the only position which doesn’t feel painful these days.

so weary. fatigue continues to constantly envelop me placing lead weights in each extremity and eyelid, a foggy haze covering my face and conciousness and a fist squeezing at my solar plexis. though to everyone else i encounter i simply seem a bit lazy and grumpy, which ensures my certain failure in any given personality or popularity contests.

i can’t say that i don’t remember when i last felt alive enough to do anything, because i do. it was around about 2005. which makes it worse. it may start getting easier to bare once i forget what feeling normal was like.

i planned to start the year right, and with the Flower Child back at her Playgroup after the Christmas break, the plan was to throw myself into work on my portfolio and researching web hosting for it etc today. first shock was pre 9 am when husband comes back home with Flower still in the pushchair and announced that “term hasn’t started yet”.

ah.

so rather than portfolio work i spent this morning folding laundry, changing nappies, playing magnetic fish, crashing toy cars, and avoiding tantrums. yes, playing with my daughter is fun and lovely, but to be perfectly honest, today i really would have rather worked on my portfolio.

it will come, the time to start work on making work for myself. . . but will the energy, the spark, the quality of life come too that will allow me to achieve it?

i sit back and take a sip of my glass of merlot, click onto my favourite live radio stream from back home and look at the scattered mess of papers, books, laundry, phones, plates, camera lenses and blister packs of various tablets. i didn’t use to be this disorganised or this much a mess. the fatigue has hit an all time high (or is it low?) this year.

i relise now that i’m listening to the seemingly endless pleadings of a public radio fundraising drive, though the promise of it giving way to music is ever present yet never delivering. i switch it off

this is my first weekend completely alone since the Flower Child came to me in January. She and her dad have gone to Granny and BawPaw’s for the weekend leaving me to my own devices. my own devices tonight include a tub of ben and jerry’s, a laptop and the aforementioned glass of wine. yes, it sounds both decadant and pathetic at the same time, and to me as well. actually, the weekend also includes a trip to London and a trip to be seen by a private Dr who seems to be the only person in this country who will stick his neck out to perscribe a treatment that has been FDA approved since the mid 80s in America. . . but being British, we like our tick boxes. if a treatment doesn’t cost much, drug companies won’t fund research because there’s nothing in it for them or their stakeholders. if there’s no research, there’s no NICE approval. no NICE approval, no treatment.

the treatment i’m after (low dose naltrexone) has few side effects, has reams of anicdotal evidence (foul words in the NHS) is well known and an an approved treatment for MS in America and an approved treatment at higher doseages for other, unrelated problems in the UK. so the lack of British run drug trials doesn’t really concern me. my GP has even told me that if I can get the first perscription from this Dr. and I do well on it, she’ll perscribe it for me herself. but as it is, she won’t touch it with a 10 foot barge pole.

seeing the Dr. tomorrow may not be wrong, or risky, or even illegal. . . but it does feel nicely rebellious.

i keep telling myself not to get my hopes up. i keep telling myself not to focus on false hopes or the last three years of progression. i keep trying to remind myself that i accepted all of this a long time ago and that i finished that cycle of grieving and what’s the point of going back there now? but this isn’t a static disability. everyday i wake up to the same demands but with a continually fluctuating (and mostly waning) set of resources. you don’t usually notice the progression until one day you wake up to a lightning bolt. usually it starts with a memory, something you once did, places you used to go, things that used to be a part of you but are no longer. now when your friends go hiking, you sit in the pub with a book and wait for them to meet you afterwards. now when you go shopping you take the car into town rather than walk. you haven’t sat on a bike or walked a dog in years. now you hold books and letters closer to your eyes to read, and that’s just occasionally when the words aren’t moving all over the place. you can’t put your finger on it, but you feel different, older than you think you should feel. tired and weary and fatigued.

and you suddenly realise in that lightning bolt of memory. . . . . . it didn’t use to be like this.

i promise i’ll never be one who wastes her life waiting for ‘the cure’ that the majority of the MS community hangs their hat on. i’ll never adopt the old Society slogan of ‘Fight MS’ (i always said it would only mean fighting myself). but every now and then. . . someone breathes the hope of getting something back, just a little bit, and i guess i’m willing to take the risk of being disappointed. . . again.

the cat starts to scratch the wicker basket in the corner. i click the radio stream back on and thankfully hear music. jeff buckley sings cohen hauntingly to bring me back to myself and the mess of my bedroom. i pull myself back together, stop remembering or imagining or hoping, and start to gather together the laundry.

baby i’ve been here before
i’ve seen this room and i’ve walked this floor
i used to live alone before i knew you
i’ve seen your flag on the marble arch
but love is not a victory march
it’s a cold and it’s a broken hallelujah

hallelujah…

so far i have seen:
3 GPs

spoken to:
1 specialist nurse, 1 consultant neurologist and 1 optician

have a referral made to the ENT department (heaven only knows how long i’ll wait for this one to actually come through with an appointment) for difficult to pronounce, long worded therapy to help a difficult to pronounce and long worded visual problem

spent £70 on 2 visits to acupuncturist

spent £60 on 2 visits to chinese herbalist

spent £40 on 1 visit to osteopath (after injuring my neck and shoulder cleaning the oven the other day)

spent £0 on prescriptions for ibuprofen and co-codimol.

most people will read this and think “oh how wonderful the nhs! look how much money she spent/wasted on private treatments, when the nhs gives you things for free.”

problem is, no one in the nhs that i have seen has helped me.

i had to nag and pester the specialist nurse to let me speak to the neurologist who i had to pester to speak to me and didn’t phone me back until i was 300 or so miles away from home and the hospital.

the GP i saw this morning sent me away with probable tonsillitis, telling me that “it will clear up eventually.” also a neck injury which means i can’t move my head to the left, a 2 year old who needs watching from every angle, and a prescription for some low level painkillers that i was taking already anyway. whereas, the osteopath i saw this afternoon actually moved my muscles around and showed me some exercises to do and now i’m gaining movement in my neck.

the nhs specialists i have spoken to about my weakness, fatigue and <a href=”http://en.wikipedia.org/wiki/Oscillopsia”target=”_
blank”>oscillopsia have told me to “wait it out and see what happens”, which predictably was “nothing happened”. whereas my herbalist took my pulse, looked at my tongue and told me what problems i must be having before i even told her, said “yes, i’ve seen this in many people” when i elaborated, gave me some herbs and within a week my field of vision began to increase markedly.

it’s just a constant frustration to me that the nhs has the means to help me, but it just never seems to happen when i need it. perhaps a year or two after the fact, but never when i can’t see, or move my head, or have the strength to walk further than across the road whilst being solely responsible for my bouncing, frequently screaming/crying 2 year old!

oh, and when asking what help i could get in doing that job, i didn’t find the answer very surprising. . .

nothing. just “battle it out”.

sigh.