the last burnt sienna crayon

Obviously not the whole post, but honestly, the first two paragraphs of this post could have been written about me. Well said.

Just counted 11 empty syringes in my big yellow sharps bin.

It should have been more, but I have decided a few things:

1. I am not going to beat myself up for not doing it perfectly.
2. I am not going to inject anywhere near the left sciatic nerve.
3. I am (at least for now) going to give myself 2 nights off a week.
4. I will drink red wine and eat chocolate.

Just saying.

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.

Don’t reject me today, dear reader. Please. At least wait ’til tomorrow.

You see, I put myself out on a limb last night, and today I’m feeling just a little bit vulnerable. I don’t know why I did it, I’m not 23 anymore. I haven’t been for quite a long time. And of course I felt it.

So tomorrow I’ll go back to being your storyteller. But today, I plan to lie low and lick my wounds.

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. . . )

A lot of people believe there is “a way” to do things.

A lot of people are afraid that they haven’t found that “way” and are afraid that something bad will happen if they have done something “wrong”.

A lot of people are afraid to follow their own instincts and so look to others to “show them the way”, and eventually feel trapped between choices that they are not happy making and a feeling of helplessness in the face of some fatalistic dictum. It causes an awful lot of people an awful lot of anxiety.

Of course, I’m talking about me here and assuming it applies more widely. I write that from my own experience, not really from observation. For, I have most frequently been one of those people. In fact, I believe that I have probably most often been [allowed myself to be] subject to the feeling that my role on this planet was was simply to carry out someone else’s orders, not to make my own. So far I have always been the vassal, not the master. I think I was always waiting for that mythical time when having paid my dues, that I would get my reward and gain some kind of power, and suddenly be respected and listened to.

But to be quite honest with you, I’m not really feeling like waiting patiently for something that probably isn’t going to happen naturally in response to any kind of dutifulness on my part. I’m not in that kind of mood at the moment. I feel more like throwing out the rule book because I’m starting to realise that there was never an agreed contractual end to my serfdom. So I’m going to institute my own little personal peasant’s revolt, and see how it goes in maybe doing things my own way for a little bit.

One of the most helpful things someone said to me recently (besides all of your lovely and supportive comments here, that is. thank you!) was to remember that this is all just “trial and error”. The topic of discussion was MS, living with MS, treatments for MS, and “the way” that you are maybe “supposed” to do things. He just said “remember, no one actually knows anything for definite about this bloody illness anyway, or about most of the drugs used to treat it for that matter. You just have to try things, come up with your own thoughts and adjust accordingly.”

There was a lot of freedom in that idea. If I “do it wrong”, what does it actually matter anyway?

Realise that I am aware of how medicalised I have become in a such a short time frame, and also that I am aware of how boring that actually is. But being aware of my past history of bouncing between espousing and rejecting the medical as a part of me, makes me inclined to allow it, for now, for a time.

But only because I know I won’t be here for good. So if you’re willing to put up with and indulge me for a little bit while I find my bearings, then I may just be able to relax about the whole circus. And then will try to get back to not needing to talk about it so much, and perhaps even try to be interesting.

Day 3, injection 3

oops.

Much less painful than last night (I’m certain I must have jabbed through a nerve to get that much pain. Everyone I speak to on the stuff says it hurts, but not to that extent!). But then the reduced pain tonight probably has something to do with me reading the auto injector wrong and thinking that the syringe was empty and removing the needle before it was done discharging its contents.

There’s enough pain and redness there presently, however, to reassure me that a fair amount has reached my system even though a fair amount was wasted.

I didn’t do it quite properly, but I did it. And after last night, that’s kind of a big deal.

Day 2, injection 2.

I cried.

I am a wimp.

Feeling blue.

I don’t want to do this anymore.

But I just can’t let myself relapse again. It’s just too important. I lost too much last time.

Very sad. And sore. It hurts. It really hurts.

I’m really not feeling as strong as you’re telling me that I am. But thank you anyway. It helps.

I wrote last night in anticipation and nerves of what was about to come. This morning I have a known quantity, and am feeling very disheartened about it.

I can deal with many things. But when it comes to pain, honest to goodness pain, I’m a wimp. And the disheartening comes from the feeling of having to live out a kind of prison sentence, a set punishment (for what? what have I done?) of an indefinite length. I am going to have to do this every day, perhaps for many, many years to come.

I feel sad and immature like a child yelling at their teacher who has put them in the corner for something they didn’t do, “It’s not FAIR!”

After 14 years I would have hoped that I’d have come further along the road to accepting my lot than I have done, and am ashamed at my childishness.

Tomorrow I must face the inevitable.

There are no more questions to ask or decisions to make about it, it’s no longer a question of ‘do I or don’t I’, or of making the right or wrong choice, no more worry, no more denial. It’s a done deal. Despite all fear, regardless of positive or negative results, it is going to happen. It is meant to become as much a part of my everyday life as eating, and to be done with just as little thought. Just something to do and get on with.

It feels a bit like a turning point to be back here. I’ve demonised and avoided the drugs as long as possible. And now I just need to find a way to accept it.

Everything’s changed now, anyway.

So I slowly, gently, gradually peak my head out from behind the the wide, old oak tree that I’ve been trying to hide behind (it is all there, if you look for it) and glance across the way to the little pool of water in the distance where the others are splashing and playing.

Maybe if I just creep over and dip my little toe in and see if it’s too cold and whether or not jumping right in would hurt too much or shock my system into a regression?

brr

Have been visiting a well known MS forum over the past few years, but not posting much. Occasionally, particularly upbeat and well meaning members post encouraging comments to the others. Tonight I read somebody’s post that said, basically:

Don’t let it get you, keep going! Don’t let it stop you from functioning everyday. Remember, it doesn’t control you, you control it!

Which is all well and good. . . except when it does and you don’t.

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.

It’s perhaps ironic that the subject that I have been chewing over in my head for awhile now (to speak or not to speak/the nature of talking and vulnerability) is beginning to “take voice” at the same time as my decision to give in and make an appointment with the speech therapist.

I lost my ability to speak once in an MS relapse. I mean that I lost the ability to control and use the muscles around my mouth and throat, not my will to. The only person who could understand what I was trying to say was my husband, and that took a little while. The sudden removal of my ability to communicate verbally with others left me a bit shell shocked and terribly frustrated and it left the others i tried to speak to simply stunned, sad and not knowing how to respond to me. I will always now have the possibility of problems with the muscles in this area as there is now scar tissue/inflammation in that area of my brain. (My current decision to refer myself back to the speech therapist is because of the number of times I find myself choking on my food and drink recently. Had a particularly frightening episode last night.)

But that’s not exactly what I’ve been thinking about on the subject of ‘talking’. I’m a pretty chatty girl, and in many ways, I wish I weren’t. I really wish I didn’t feel such a need to express what goes on in my head to people, mostly as I’m convinced that people don’t really want to know (which is perhaps why I blog it instead, if you didn’t want to know, you wouldn’t click! And besides, it keeps me quieter in ‘the real world’, therefore avoiding that whole “did I just offend you? What did I say wrong?” feeling that I’m so good at creating).

I wonder how I would adapt if I lost my ability to speak again, I rely on my words so.

I remember deciding to go to my weekly Bible study one week during that relapse, even though I knew I would not be able to contribute in any useful way. Unfortunately, that evening the study dissolved into argument and bad feeling around a particularly heated discussion on the Pauline teaching on women and I felt completely helpless. I watched my friends saying things that upset each other and upset me terribly and I felt completely helpless, both in my ability to express my thoughts/feelings and to wade my way through the murky waters. I felt out of control of my relationships in the midst of bad feelings, and I didn’t like it one bit!

I rely on my voice to ask questions, to discuss and to understand the people and the world around me. I rely on my voice to try and make other people understand me. Without my voice there would be a barrier between you and me.

Silence generally makes me uncomfortable, visible and vulnerable (although talking makes me feel pretty vulnerable too, so I guess I can’t win). I feel a perpetual need to fill the gaps when the conversation stops. I often feel a great responsibility to carry the conversation, to be interesting or funny or witty (which has been more difficult lately with my aforementioned cognitive issues). And I have an inordinate fear of being misunderstood, so I say as much as I can to explain myself, as I have learned over the years that words and actions that seem completely natural and normal to me, aren’t natural or normal to most everyone else in this New World. So I talk, perhaps more than most, to attempt to explain, excuse and exonerate myself, to prevent such possible misunderstandings (I am still floundering in my “two countries separated by a common language” cultural divide).

And besides all of that, I love conversation. I love connecting with other people and finding out about them and sharing something of myself, and I can just never figure out when that happens to be a welcome thing to others and when it happens to be annoying. I just don’t love being dissolute, obtuse and irksome.

I guess I feel if I’m uncomfortable in the silence, then whoever I am with must be uncomfortable too.

Apparently, that is not true. Apparently, there are people, who find silence a normal and ok thing. I guess I didn’t grow up that way. So I am trying to curb this need to speak. Apparently it’s not always polite, where I live now. I don’t like to annoy people and like Eliza Doolittle taking lessons in how to be “a lady”, perhaps I should try a bit harder not to say so much. Perhaps only speak when I am spoken to??

But on the flip side, and perhaps from a more positive perspective on the subject, isn’t silence between friends an indication of security and to be valued? Yes, I am certain that and a balance between the speaking and the silence is the ideal and to be sought after. This will come, perhaps slowly but surely as I learn to relax into my life more.

However, for now, the thought continues to occur to me that I have not been able to find that balance yet. The thought continues to occur to me that I had better work harder at not saying so much, for I would rather be heard through my silence than ignored through my words; I would rather be conspicuous by my absence than invisible by my ubiquity.

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!

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.

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.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

1. The illness I live with is:

Multiple Sclerosis

2. I was diagnosed with it in the year:

1996

3. But I had symptoms since:

1995

4. The biggest adjustments I’ve had to make is:

the fatigue, the loss of complete independence. the necessity of energy conservation.

5. Most people assume:

that I am “well” in between relapses

6. The hardest part about mornings are:

the opening my eyes bit, never feeling like i woke up.

7. My favorite medical TV show is:

i hate them all

8. A gadget I couldn’t live without is:

the car

9. The hardest part about nights are:

insomnia

10. Each day I take __ pills; vitamins:

a largely varriable amount of

11. Regarding alternative treatments I:

judge my practitioner very carefully, currently i have an acupuncturist (since 02) and a psychotherapist (since 07) but have recently ‘dumped’ several others.

12. If I had to choose between an invisible illness or visible I would choose:

visible, hands down!

13. Regarding working and career:

have had to give up the prospect, but have enough denial left to occasionally entertain the thought of what to try next, usually end up discouraged, then give up.

14. People would be surprised to know:

well if i haven’t tried to tell you yet, then i’m probably not going to. but you’d probably be surprised how fatigue is really nothing like being tired.

15. The hardest thing to accept about my new reality has been:

that once something is gone it’s gone. it’s not coming back. and you don’t realise that it’s going until after it has happened.

16. Something I never thought I could do with my illness that I did was:

on the contrary, i always thought I would do a lot more than I have.

17. The commercials about my illness:

make me feel angry, objectified, pitied and patronised.

18. Something I really miss doing since I was diagnosed is:

hiking, dancing

19. It was really hard to have to give up:

hiking, working, travelling, dancing, stage things… didn’t we already have this question?

20. A new hobby I have taken up since my diagnosis is:

well, i took up cross stitch once, but then i lost too much eyesight to do it anymore (besides getting bored). does hammered dulcimer count as a hobby?

21. If I could have one day of feeling normal again I would:

hike into the Grand Canyon

22. My illness has taught me:

things I’d rather not know.

23. One thing people say that gets under my skin is:

“But you’re so young!” oh wait, no they don’t say that one anymore, cause I’m not. So how bout, “But you look so normal, I would have never known!”

24. But I love it when people:

empathise rather than pity.

25. My favorite motto, scripture, quote that gets me through tough times is:

The Letter to the Church in Philadelphia Rev 3: 7-13 (personal reasons)

26. When someone is diagnosed I’d like to tell them:

don’t waste your life waiting/looking for ‘the cure’. don’t fight your body/illness, you’ll only be fighting yourself. try to work with and accept it.

27. Something that has surprised me about living with an illness is:

how many people have huge misconceptions.

28. The nicest thing someone did for me when I wasn’t feeling well was:

bring me banoffee pie in hospital and then washed my very long hair in the sink for me when I couldn’t move and the hospital nurses hadn’t done it for me for two weeks. and also bossing the ward sister around when I had been left alone in my own sick because they were too busy to bother with me. (thanks E, I’ll never forget it.)

29. I’m involved with Invisible Illness Week because:

I have an Invisible illness

30. The fact that you read this list makes me feel:

I’ll come back to that question if I ever find out that somebody has actually read it.

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.

so why after 8 weeks of self injecting 3 times a week with very little problem at all (big step for this needle phobe!), am i starting to freak out about it and go through the whole old panic routine? maybe the mass of black and blue flesh that i’m accumulating might have something to do with it? maybe the increase in dose and flu symptoms might have something to do with it? maybe having done it for three weeks without the auto-injector pen might have something to do with it (which means it doesn’t hurt so much for the few hours after, but hurts more when the needle goes in)? maybe it has something to do with getting tired of having to plan my life around always being a bit sore and achey?

maybe i’m just tired of it?

maybe i’m just getting too used to the chocolate and it’s losing it motivational effect? perhaps i shouldn’t keep the entire box of lindor on my bedside table?

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.