the last burnt sienna crayon

Dear self,
Just because you are doing fairly well and better than you have been in many years, please remember that this does not make you invincible. Just because you haven’t had a panic attack since July last year, it does not mean that it is no longer possible. A word of advice, if in the future, you happen to notice that a bus is overly crowded, next time it might be an idea to just be patient and wait for another one to come by. Perhaps find a way with dealing with people who think you are unreasonable, I doubt that will change. Well done for stopping to close your eyes and breathe even though you were in the middle of a busy street, and people were probably staring at you.

Don’t worry, it was just a stumble, not a fall. Just wanted to say, I’m looking out for you.
love,
self

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.

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?

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!

It’s almost comedy these days to have a ‘therapist’.

Two friends came to take me strawberry picking, when the phone rang and held us up.

“Who was that on the phone? ”
“Oh, just my therapist.”

I wasn’t sure whether I was supposed to be embarrassed or not. I was honest about it, eventually, but I had the feeling like you weren’t supposed to admit to something like that. It seems that it places you firmly as someone who’s watched one too many Woody Allen films and took them to heart. You look into the mirror of your self assessments and the caricature emerges with half a bottle of red wine, or something vaguely worse, droning on with a long drawn out and overwrought monologue on anxiety and/or religious persecution.

“I don’t go to therapy to find out if I’m a freak
I go and I find the one and only answer every week
And it’s just me and all the memories that follow
Down any course that fits within a fifty minute hour
And we fathom all the mysteries, explicit and inherent
When I hit a rut, she says to try the other parent
And shes so kind, I think she wants to tell me something,
But she knows that its much better if I get it for myself…”

I am very aware how easy it is to become a caricature, and I both shudder at the thought and relish my uniqueness, if indeed unique I am. Maybe all of my friends actually have therapists, but feel that they’re not supposed to admit to it. I felt once that I wasn’t meant to. I don’t know why I actually fessed up in the end, but I did.

Like I said, I’m no good at hiding.

I’ve had them before, ‘therapists’ and I used to feel guilty or wrong or broken. The leaflets in the reception area of x, y, or z venue always say something like “A typical course of treatment is usually 4 to 6 sessions.” So always sometime after my 4th or 6th month or so, I start to think “What’s wrong with me?! Not only am I broken, but I can’t even get fixed in the same length of time as everyone else!”

I had to try all kinds before I actually had a positive experience. I don’t know what kept me somehow convinced that someday it might pay off.

I’ve tried Christian counsellors who would smile and give me a platitude and a Bible verse. I’ve had self important new agey types tell me to close my eyes and breathe deeply and imagine that I control the universe. I’ve been told by institutionally clinical CBTers to write down all of my wrong thoughts and change them into something that I clearly didn’t believe but something that would clearly be more acceptable to everybody else. I’ve been long suffering with volunteers who thought that the answer to an anxiety disorder was the added pressure of an action plan every week (because that’s what their training course taught them to do) and then got clearly frustrated and annoyed with me when I wasn’t making any progress. Why did I keep trying? I guess, a person just gets to a point where they’re willing to try anything. I guess I just had.

And as I’ve said before, I obviously have a brick wall in my front room that needs using for banging my head against, or it will be wasted.

I’ve found two good therapists out of many more I could have done without. My last successful ’stint’ (before my current one) was between September 2001 and May 2002, and was the first time I had found any help from a saint who let me talk and talk and talk and talk and. . .

“And when I talk about therapy, I know what people think,
That it only makes you selfish and in love with your shrink.
But oh how I loved everybody else
when I finally got to talk so much about myself. . .”

This time I’ve been warming the proverbial couch since May 2007 and I don’t really feel bad about it anymore. I stopped worrying about going past my six sessions somewhere back in 2008 when I realised that all of that ‘unconditional positive regard’ stuff was one little thing that helped keep me going for another ‘one day at a time’. I thought I’d ‘come out’ in a bid to try and just accept who I am, where I’ve been and how I got here. I thought that I’d stop trying to squeeze myself in the box of people who pray every night “Dear God, thank you that I’m not Woody Allen,” who probably don’t actually exist, but that we all tell ourselves do.

I don’t feel bad about it anymore. . . but I do still often wonder if I’m supposed to.

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?