the last burnt sienna crayon

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.

I lied to my doctor yesterday.

It was necessary for the sake of self preservation.

A brief and probably inaccurate summary might go something like this (inaccurate because my perception of what goes on around me and my ability to engage and communicate with other people, both personal and professional, is currently greatly hampered by cognitive problems caused by my MS):

me: I think the chest infection is back, the cough is worse, it keeps me awake at night, I’ve had it for about seven weeks now and when it starts I can’t breathe and I can’t stop coughing because my throat goes into spasm. I feel ill and tired and my throat hurts. Everything is a bit unpleasant and green.

he: When I saw you last week, you were looking a bit anxious, and today you seem a bit low and depressed. We really need to look at things as a whole, and perhaps consider a different kind of treatment.

me: Well, the other day, I was bringing my daughter for her injections, so of course I was a bit anxious. I don’t think I’m any more depressed than usual at the moment, and I absolutely refuse to go back on antidepressants!

he: Well, then we can look at other options.

me: I already have a therapist, since 2007, and am very happy with her. Can we get back to looking at my cough?

Ok, that’s not exactly how it went, except for the bit where I said that I wasn’t depressed and refused to go back on medication.

Well, the second part of that is true, so therefore I needed the first assertion to facilitate my refusal.

I just so often get the feeling that I am no longer seen to have any illness or bug or problem that isn’t directly connected to having MS or depression. And whereas I will be the first advocate of the wholistic “mind and body are intrinsically linked” approach to medicine, and ok, to be fair, his assessment of my mood was fairly accurate, but I would like to shake off the labels and expectations sometimes. Give me a chance. Ok, I might have a history of depression. . . but I’m sure I can have a simple bug too. I wish they would stop trying to shove pills down my throat!

I rely on people. Often.

I always liked the idea, as I have said before, of being a hermit. Of self reliance. Of being a wholly capable woman.

But that’s not how my world works. And I suspect yours doesn’t either. People need people. People need other people, and many times, we don’t even realise how much we may need the people who are already there, in our lives, until they are gone. There is a kind of loss, a gap, an emptiness when other people, even the “unimportant” or distant ones disappear out of their lives. As human beings we are built for homeostasis, and when something happens to change that stability in our lives, to any degree, particularly by subtraction (although addition can often throw us too), we can be left a bit in the lurch.

Often even when a minor cast member of our lives leaves by stage left just when we didn’t expect them to, right at a point that we hadn’t rehearsed, we become a bit flustered, like a director who can’t control his players and doesn’t know what to do.

When I was very little, my mother took me for my first haircut. About 12 or 13 years later, the same woman was still cutting both of our hair. Then, one day, we came to an appointment and were told that she was leaving her job to go back to college and retrain. She gave us a book entitled All I Really Need to Know I Learned in Kindergarten by Robert Fulghum. The Inscription she wrote inside the front cover was: “To ____ and ____. With special attention to pages 76 -78. Fondly, Donna. (the following quotes are taken from this)

Hair grows at the rate of about half an inch a month. . . That means that about eight feet of hair had been cut off my head and face in the last sixteen years by my barber. I hadn’t thought much about it until I called to make my usual appointment and found that my barber had left to go into building maintenance. What? How could he do this? It felt like a death in the family. There was so much more to our relationship than sartorial statistics. We started out as categories to each other: “barber” and “customer.” Then we became “redneck ignorant barber” and “pinko egghead minister.” Once a month we reviewed the world and our lives and explored our positions. We sparred over civil rights and Vietnam and a lot of elections. We became mirrors, confidants, confessors, therapists and companions in an odd sort of way.

February 2002, I was in a bit of a state. I was back in hospital again. I was back in physio and psycho therapies again. I was back on crutches and sometimes in a wheelchair again. Someone, probably against his better professional judgement but in an “I haven’t got anything else to offer you, so I’m going to make a personal suggestion” moment, suggested that I see this acupuncturist that he knew, and he handed me her card. I was in an “I’ll try anything once” kind of place and booked an appointment.

7 years and 8 months later I am still continuing to see her on a frequent and regular basis. In that time I can count the number of MS relapses that I have had on one hand (as opposed to nearly the same number per year before) and have not sat in a wheelchair since. And whereas any medical relationship really needs to stay that much more distant than that of hairdresser/customer, she has become a “mirror[], confidant[], confessor[], therapist[] and companion[] in an odd sort of way.” She has been there through ups and downs, griefs and joys of the last 7 years of my often soap operaish life. She has supported me through things that no one else knew about. She has always listened and never judged.

Last Monday she told me she was leaving to set up a practice in another town. Not an impossible distance away, and if I could travel, then I could continue to see her, but I wonder in all practicality if I will be able to do that. I haven’t completely decided what I will do yet, but I always knew that professional relationships can’t last forever. I have enough of them to know. But it always leaves me feeling just a little sad when I lose one. Then not knowing how to feel, because I’m self aware enough to acknowledge the feeling of loss, but mature enough to be sensible about keeping a healthy personal distance from my professionals.

My neurologist left in July and didn’t even tell me. (I’m talking about the good one who supported me in everything from my illness to bureaucratic nightmares to managing my daily ups and downs to being able to become a mum. Not the earlier bad neurologist who should have been struck off and lost his licence to practice if he hadn’t already been retired, for those who know the story.) When I found out, I was left sitting in his nurse’s office feeling crushed and open mouthed and wanting to say “B…b… but he didn’t even say good-bye!”

I was even a bit thrown when the nice lady with the spiky hair at the local pharmacy I always used to chat to seemed to have left that job. We get used to people, and at least I like a kind of homeostasis about my life. The reality is that nothing really ever stays the same.

Without realizing it we fill important places in each other’s lives. It’s that way with a minister and congregation. Or with the guy at the corner grocery, the mechanic at the local garage, the family doctor, teachers, neighbors, co-workers. Good people, who are always “there,” who can be relied upon in small, important ways. People who teach us, bless us, encourage us, support us uplift us in the dailiness of life. We never tell them. I don’t know why, but we don’t.

And of course we fill that role ourselves. There are those who depend of us, watch us, learn from us, take from us. And we never know. Don’t sell yourself short. You are more important than you think.

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.

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.

in the field of medical ethics, can i really be in such a complete minority? and does that actually indicate that i’m as wrong as everyone else here seems to think i am? for, when everyone else is actually more qualified than me, do i have a right to differ so strongly in opinion, when it affects more people than just me? but if i do what everyone else is wanting me to do and i don’t feel that it is really the right thing to do, then am i wrong to do it because i’ve not followed my strong gut feelings, or am i right to do it because i’ve followed the opinion of the more qualified majority?

when in the end, it’s not really my decision anyway, i just have to come to a decision to put to the person making the decision which may or may not affect his decision.

i choose ice cream.

today i made an upopular decision. a decision which i felt imediately ailienated me from and lost the respect of one of the most powerful people in my life. . . my neurologist.

he told me i was wrong, but he had to support me in my decision. there was no argument or forcing of hands. he simply told me that my decision was dangerous, may as well have called me reckless. he blinded me with science and looked disappointed. he was obviously not expecting me to have a case so prepared and to be so unshakeable, so set, so decided in oposition to his recommendation and his statistics. i don’t really blame him, as statistically my decision was dangerous, but i just felt it was right. he possibly felt threatened and ceased to make eye contact with me, choosing to address husband instead.

that felt bad. and now i’m doubting myself and my insistance to flout an immensely more experienced professional than my little self. i feel small and arrogant and vulnerable. for so long now i have been so convinced in so many situations that i have known what is best for me, that the object of the game has been to stand ground rather than be led. but where has that got me, but most often a lot of pain and difficulty, and why should i know so much better now? the experience has left me feeling unsure, vulnerable and more than a little disempowered, when yesterday things seemed so clear.

disempowered, not because i didn’t stand my ground to make my decision and get what i wanted in the end, because i did, but disempowered becuase now i’ve been made to doubt myself and my decision so much that i have lost the confidence i had in my decision and reasoning to begin with and now feel a bit stupid, indeed a bit reckless, and honestly a bit scared. i have lost that confidence which occasionally something somewhere indicates must still be there in me, somewhere deep in the labyrinth of hidden perspective, but that currently eludes me.

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.