* What do you do? – I’m a student.
* What program are you taking? Is it a three year program? – [Insert description of program no one's ever heard of] – Yes (but I’m doing it in six).
* What do you want to do afterwards? Can you actually make a living from that? – I’d like to have a little workshop at home and have a tiny production of I don’t know what yet (that way I can work at my own rhythm and respect my limits). – Sure, I can get by on that (and even if I can’t, disability will pay out the difference).
* Do you work? – No.
* Then how to you support yourself? – I get help from the government (I’m on disability).
* What kind of work/studies have you been doing for the past 12 years? – I did a few semesters in university (totally flunked them); I also took a course in floristry (which lead to a burnout), worked a little in the domain but didn’t like it (lasted 6 weeks part-time before being hospitalized); other than that, I’ve done a few odd jobs (very few, never for long) and some volunteer work (most of it not being actual volunteering but therapeutic activities provided by the hospital). (I’ve been very sick for the past 10 years, in and out of the hospitals and therapy, and unable to work). (Realistically, it seems very unlikely that I’ll ever be able to hold a full-time job).

There are so many things left unsaid in all these discussions, and I’m usually left with a guilty feeling about having left them out, as if the whole things was a lie. I’ve tried my best to be honest, I don’t want to lie. I realize that a lot of those untold things will have to come out sooner or later – the first being the school thing. They’ll be asking how much more time do I have left in my program and I can’t say 2 years, as they’d expect, but 5. If they don’t figure it out before, they’ll know for sure in two years’ time, especially since the beau is graduating then.

How does one deal with all these topics whilst respecting your privacy and boundaries?

I’m not ashamed of my illnesses and my past, they’ve made me who I am today and I think I can be proud of who I’ve become, on the contrary, I’d rather they knew about them and this problem will be solved. I just don’t know how to go about it without dropping it like a brick. I’m afraid of what reactions Beau would have to deal with as well, especially with his parents. Any concern from his loved ones would be totally understandable. I just think he’s already being brave enough by staying and giving this relationship a chance in spite of it all, he doesn’t deserve to have to also justify himself to others.

As for me, I’d kind of like it if he did have that discussion with his friends and parents while I am not there. The issue would be out on the table and people would have a chance to come to terms  (somewhat) with it before I had to face them. I believe that’s something I can discuss with him, tell him that if his friends inquire, it’s okay to tell them the truth, I won’t be mad at him for it, quite the contrary. Maybe it would also lessen the burden for him if he was free to discuss the topic. He hasn’t mentioned it, but I imagine if you can’t go your closest friends, your confidants, to talk about your struggles, worries, or just your reality, it must eat you up inside… and, like it or not, he will need to talk it out at some point.

• 

I’ve had my last final visit with my intervention worker, which is bittersweet. I know that if it’s come to this, it’s because I’m doing well enough to be able to function without her. On the other hand, there’s this insecurity in not having someone to fall back on or someone with whom to seek counsel should I need to.

On another note, I was listening to the song If God Was One of Us and the chorus made me think of self-injury and the fact that it remains so taboo, more-sothan resorting to drugs, alcohols, gambling etc. as a coping mechanism. Perhaps because it makes otherwise invisible suffering visible and people just don’t want to see…

If [pain] had a face what would it look like ?
And would you want to see
If seeing meant that you would have to believe [...] ?

• 

I accompanied him to church last weekend and it made me realize how much I missed it… We’re both Christians, we believe in no sex before marriage but, as he’s a massage therapist, I’ve indulged in his services, which helped lift another great weight off my shoulders. He’s seen my scars, all of them and still thinks I’m beautiful. He doesn’t try to avoid looking at them. Instead, he looks at the ones on my arms and hand not with sadness, not with pity, not with fear, but with curiosity. Other than doctors, he’s the only one who has been witness to the extent of my injuries but I was relaxed and felt completely at ease with him, easing the process of revelation of these shameful scars.

Gosh do I ever love this man! Is it too soon to use the L-word? I realize we’ve known each other for less than a month but it seems like it’s been so much longer. He says that he loves me even more since we’ve had “the talk”. We’re already talking about the future, about marriage, houses, kids, expectations. I have all these dreams I’d pretty much given up on that are resurfacing and now seem feasible. We’re not engaged nor planning to be anytime soon (at least on my side) although it’s the first time I’ve ever felt so comfortable so quickly with a guy – or anyone for that matter – illnesses or not. I just hope I’m not setting myself up for deception. Is this what love feels like or is this infatuation that is bound to sizzle down and die? Either way, I think God’s plan will work itself out in His time. For now I’ll enjoy it and let myself be treated with all the love, dignity, respect, tenderness, compassion, etc. that I believe I deserve and, if this is something that He wants to be naught but temporary, then I’ll deal with that when the time comes.

When I think of it, it’s weird to be talking about myself in such a positive way… For so many years, I’ve felt so worthless, empty, ugly, insignificant, hopeless, helpless, doomed, desperate, discouraged, disfigured, unlovable, worthless; I’ve felt like a burden, like a dead weight. Have I really managed to get past all that self-hatred to a place of acceptance and respect? Acceptance of my illnesses, of my reality, of my past, of my limitations. Respect for myself, for who I am, for the wisdom gained from battled fought, for all the qualities that I know I have, and for all that I can bring to those around me.

• 

I’ve been prepping the way for a while now. I was honest in telling him that I don’t go to school full-time and don’t work either. I didn’t hide the fact that I took meds. Finally, I told him that there was a lot of stuff that had happened in the past 10 years and that, eventually, we’d have to talk about them.

So far, I’ve been quite successful in hiding the scars, except for my hand (which he thinks was due to an accident – which is the only “lie” I’ve told him). When we’d get more intimate, I’d always been reluctant in letting him touch or see my stomach, in fear that he’d feel or see the scars. He’s a trained massage therapist and one thing he learnt is that the stomach is the centre for emotions, so very gently, he tried to get me comfortable with his touching me. So I let him. When he saw the scars, he was really upset with himself and felt like he should have left it alone and said he’d drawn conclusions but wanted to wait until I was ready to talk about it. I didn’t want him to leave with that kind of weight on his shoulders. So I asked him to share what he thought it was, and I was right in thinking that he’d gotten the wrong idea… he thought I had had some kind of surgery.

I saw this as the best opportunity to discuss the issue and came clean about everything. So now he knows about my being bipolar, about my being hospitalized often, about the self-injury, about the headaches, and about the fibro. Oddly, his life has been strongly impacted by mental illness because his mother and a couple of close friends are bipolar. In a way, that’s a good thing, but it’s also much scarier for him… I could tell he was hurt and frightened and shocked. He said it didn’t change a thing about the way he felt about me. I realize that it’s a lot to digest… but I think we’re both glad we had the discussion. He told me he wished I’d brought it up sooner because in the past 3 weeks, he’s had a chance to build up an image of me and that now, that image was all fragmented, but I’m not sure it would have been better. I’d rather he made of image of me before the label “bipolar” got slapped on my forehead.

I won’t be seeing him the next two days, I suppose it will give him a little time to think it all through. I’m hoping that things won’t change between us, but realistically, the dynamic will be at least slightly different. As for me, it’s a major weight lifted off my shoulders. The thing that has scared me the most about getting into a relationship is now out of the way. It’s out there in the open, and he’s not running away. I guess the fact that he has people in his life that he loves who are bipolar makes it easier for him to know that someone who is bipolar can be lovable.

I guess the thing that I’m most afraid of right now is tht he’ll look at me differently. I want to keep on seeing the love in his eyes, I want to keep on feeling beautiful and precious and desirable. I don’t want to see pity or sadness or worry.

• 

I was having the worst of days: I was awakened by abdominal pain. I was feeling really anxious and was looking forwards to being able to talk during my appointment in the afternoon so I made the 1-hour transit across the city to the appointment, which turned out to be next week – I almost broke down in tears. I was due back in the area 2 1/2 hours later so I travelled halfway back home, had a bite to eat and had planned to spend the last hour sitting comfortably in the library with a good book. At the coffee shop, one of my feet started to really hurt but I walked over to the library only to run into a locked door. The place was closed due to ‘extraordinary circumstances’ (probably due to the frustrating, omnipresent student strike going on). So I had no choice but to head home. Made the half hour transit back, had 15 minutes before having to leave again, which left 5 minutes to lie down and rest if you count the time it takes to remove and put back on all the winter paraphernalia.

At this point, my other leg was also hurting and I was starting to get abdominal pain again. At this point, I just wanted to hide under the covers and never come out. However, it was the opening day of an exhibit at my school and I’d arranged to meet my beau and use the occasion to show him around. So, I made the 45 min transit back. We went, there was lots of people but it was nice. We then braved the cold and set out on foot, looking for a place to eat. It was a good 20 minutes before we found something but it was a nice, quiet place with comfortable seating. We stayed over two hours. The break, the food, and the good company of course, made my day all worth it. I forgot the pain momentarily, had a nice time, and we made more plans together.

So now I’m back home, pain in a few fingers is making typing this a challenge, my shoulder is making the position I’m sitting in right now uncomfortable, I can feel pain running down my leg to my foot and fatigue is starting to hit. But, had I stayed home and moped, I would have spent the last 6 hours with these or other ache and they would have felt much more present. Also, I would have missed an opportunity to better my new but promising relationship.

• 

Not sure I’ll make it every week though. Realistically, I’m not sure I’ll have the energy – it is 4 hours of socializing. Anyone with a moderate degree of knows how exhausting that can be, even if you’re having fun. Add the fibro, the headaches, and school… you’ve got very little left. I came home last night completely drained of any energy. I was constantly yawning on the public transit and, by the time I stepped in the door, I had a full-blown .

I get my class schedule on Friday, I do hope it leaves Tuesdays open so I can attend! In the meantime, I haven’t gotten as much done as I would have liked to during this break… I did get loads of tidying up and cleaning done today because of a weird dream. I dreamt that I was awakened by the phone this morning, at around 10:30. It was my landlord calling, saying he needed to see me at home. So we arranged for him to come by at 9:30 tonight. So I went back to sleep, not knowing why he so urgently needed to see me. When I woke up again (two hours later) and saw the mess my place was in, I went into clean-up mode because I could not let him enter with the state it was in. After about 4 hours nonstop, I was finally satisfied and took a break. I went to make a phone call and as I was looking through the list of callers, there was no record that I’d received a call this morning. That’s when I started to wonder if it was all a dream… but it just seemed SO real. When he didn’t show up at 9:30, I concluded that it was indeed a dream.

My sleep schedule has been completely reversed: I sleep most of the day and stay up all night. I know that this behaviour is semi-conscious sabotage. I can’t get any housework done at night because of the noise and when school starts, I’ll be exhausted. That’s something I really need to fix, and fast.

On the plus side, just found out that one of my projects for school will be featured at the open house next month.

• 

First, let me introduce you to Daisy…

She will be five years old sometime next month.

Daisy is my little ball of love, my companion, my source of laughter, but also a source of frustration. You see, I’m convinced Daisy also suffers from borderline personality disorder (if that’s at all possible)! She gets very jealous, nobody else but me can interact with her. She hisses, growls, and claws at anyone who passes too close, who tries to talk to her, or sometimes even look at her too long – she doesn’t like it when I have company. However, she’ll never go and hide, she prefers to stay in everyone’s presence. But with me, she’s completely different. She comes when I call her name, follows me everywhere (and I live in a bachelor pad), she holds conversations with me and with her imaginary friends (more on that later), she’s very cuddly, and she’ll do anything – good or bad – to get my attention. She’s got the whole “I hate you! Don’t leave me…” thing going on. When she wants to cuddle, I have to be holding her in both arms, giving her my full, undivided attention, sometimes she’s so clingy, I wonder if she thinks she’s a scarf. That’ll last a few minutes, then she’ll get mad, bite me and run away.

There are times where the roles are reversed and I’m the one who’s short tempered, who’ll yell or get mad at her for next to nothing, who pushes her away, who can’t stand being around anyone or anything. We’ve learnt to read each other quite well and when she sees I’m in one of my moods, she’ll be more cautious – but she’ll still impose her physical presence on me – settling for lying snugly against my leg, always with a paw on my arm or leg, to prove that she’s still in control.

But Daisy’s lonely. I can see it in her behaviour. She’s an indoor cat, so when I’m not home or not approachable, she’s all alone. She spends too much time staring at a wall, at a door, at the fridge, or even just at nothing in particular and she cries – which drives me bonkers. She’ll do all kinds of stuff she knows she’s not supposed to purely to get my attention like claw the furniture and jump on the kitchen counter. The minute I get up for any reason, I don’t even have time to slide off the bed (aka couch, aka office) that she’s sitting in my spot so that when I get back from getting my glass of water or whatever, I’ll have to push her out of the way. She can be quite the rebel.

For a few weeks now, my mother has been going on and on about one of her students. The young girl’s cat had kittens, two, a brown one and one that is all white. The child and her family have been handling them since the day they were born, so they should be very friendly. Over the holidays, my mom, who babysat Daisy, planted the idea in my head that maybe I could adopt one of them to keep Miss Daisy company. I stewed this idea around my head over the days I spent at the cottage and, of course, grew fonder and fonder of the idea – I even found a name for the white one (if it’s a he).

However, Daisy’s already a handful. I don’t know how she’d react to another cat… She’s lived with other cats before (never longer than a few months) and she grew accustomed to them – not to the point of playing together or cuddling, but well enough that they would sleep on the same bed or couch. Both times, she was the one who was introduced into their home. So I wonder if I introduced the cat into her home, if she would accept it more easily and if, since it would be a kitten, some kind of motherly instinct would kick in?

On the practical side, kittens are a lot of work and are energy-consuming, I have to find room in my budget for a second carrier, vaccines, veterinary care, surgery, and extra food. I have to evaluate whether I really have enough energy and patience for that. I’m sure that a kitten would brighten up my day enormously and, in a way, force me to slow down. When Daisy was a baby, I was so happy when she’d lie down on me that I didn’t want to move, in fear that she would leave. This made me realize that I never stopped, I was always multitasking, never just sitting down, doing nothing or just watching tv, resting. I still don’t really take the time to do that, but Daisy’s made me aware of that fact. I’d hope that the kitten would also serve the purpose of keeping Daisy company and that her not being so lonely would make her a little less of a handful.

I am very enthusiastic about the idea though and I know it’s keeping me from objectively assessing the pros and cons. Anyways, all this being said, I don’t even know if they’re putting the kittens up for adoption. I could be setting myself up for major disappointment.

So yay or nay?

• 

If you haven’t noticed, in most hospitals, the psych ward is completely isolated – sometimes even in another building, it’s usually indicated more obviously than any other ward (except the ER) as if to make sure, God forbid, someone accidentally wandered there – sometimes there isn’t even a ward in that hospital, patients (aka clients) are sent to “psychiatric” hospitals/institutions.

On to my personal experiences…

My first hospitalization was in early January 2003. I was 19 at the time, so my only experience is with adult care. At that time, I lived in O Region, which consisted of 4 or 5 relatively big cities, 3 general hospitals, and a psychiatric hospital. The procedure over there was:

1. You go to the ER of your choice, go through triage and; see the Dr on call.
2. An orderly will then accompany you, by taxi, to the psychiatric hospital.
3. You will meet the psychiatrist on call who will decide whether you need to be hospitalized or not.
4. If he does think you need to be admitted, you will return to the general hospital (whichever one serves the city you live in) and be taken to their psych ward.
5. There, your follow-up will be taken over by a GP who chooses to work in psychiatry. This GP will consult with a psychiatrist if necessary.
6. If during your stay, your case is considered too heavy and they think you require more intensive care, you will be transferred to the psychiatric hospital.

So that first time was pretty decent. I stayed about 1 month total at H Hospital, with a whooping 8 days in the ER, waiting for a room to free up. It’s a little fuzzy but it was a locked ward and I wasn’t allowed out. I believe we were only two per room. The activities pretty much consisted of playing sandbags with the evening staff, where the winning team got hot chocolate (though they gave me some every night). One or two times a week, I had individual meetings with the occupational therapist as well as group therapy sessions. The nursing staff was pretty stable and, as much as possible, they tried to keep you assigned to the same one. I also started attending a group at PJ Hospital (psych hospital, in H-town) offering coping strategies to young girls (about 15-19 yrs old) with BPD and/or post-traumatic stress disorder. This was 1 hour a week for 20 weeks. I met with the psychiatrist only once – this was when he gave me the diagnosis of borderline personality disorder. All medication was prescribed by the GP. Went home gradually, 40 pounds heavier, with a couple of follow-up visits with the occupational therapist and the group, as well as a referral to the day hospital program (PJ).

Unfortunately, a couple weeks later I was re-admitted following another suicide attempt. This stay was much shorter, I think it was 3 days in the ER and 6 on the ward. Same scenario. However, since I made sure this “attempt” was clearly linked to the headaches, I got to have tests done I should have had a long time before (EEG and CT Scan).

I think it was late March when I got a callback for the day hospital. This was an 8 week program. Four days a week, you would participate in group activities such as art, relaxation, discussion, sports, cooking, etc. Once a week, you met with their very odd psychologist and had maybe 2 or 3 meetings with a psychiatrist during those 8 weeks. I was not doing very well at that time and had a few overnight ER visits. Since I was in the program, I was discharged.

Towards the end, I spent a week-end in the ER and, when they sent me back to the day hospital on the Monday morning, I was too unwell to get through the day. At that point, the program’s psychiatrist offered me a temporary bed. PJ Hospital is very small (about 100 patients total) and has specialized wards for children, adolescents, geriatrics, as well as four adult units. The only bed available at that time was on the geriatric ward. It was quite an interesting couple of nights as I was the youngest there by at least 46 years! The nurses were so kind. They would warm up a blanket in the dryer and come and tuck you in when you were feeling especially anxious or ill and there was a big room full of rocking chairs and soft music, where patients spent most of their time, there was also a dining area and a tv room with by comfy couches. After a couple days, I met with the day hospital psychiatrist who gave me two options: be hospitalized or finish the program. At this point, I had moved and was living in G Hospital’s territory. I wasn’t really feeling any better, so I asked him whether I would be admitted to PJ Hospital or G Hospital, largely preferring what care I’d had at PJ. I understood from his behaviour and response that it would most likely be at G, so I opted to finish the program – and I did.

THE CONTENTS OF THIS NEXT PARAGRAPH MAY BE TRIGGERING FOR SOME INDIVIDUALS

At this point, things were going downhill quite rapidly. This was when the SI had turned to addiction (see Scars post). I was visiting G Hospital’s ER almost daily for stitches and was undergoing hydrotherapy treatment 3 times a week for third degree burns. In early July, they decided that this behaviour was degenerating way too much, so I was hospitalized again (G Hospital). The only treatment I remember getting there was a few stretching exercises in the morning, lots of PRNs, and the hydro. The psychologist I was seeing at the community clinic also came by once a week. The rooms there were nice and spacey, there were only two beds, separated by a curtain, and there was a bathroom and a window.  There were two tv rooms (smoking/non-smoking) but no dining area, meals were eaten on trays at your bed. This was also a locked ward and aside from being wheeled down to hydrotherapy by an orderly, I didn’t leave the ward. The last couple of days, they would let me go out on the grounds, with another patient, for 10 minutes. After 8 days, I think, the psychiatrist was too worried about me and decided I would need more personalized care. Two days later, I was transferred to PJ Hospital.

• 

Due to its length, I will be publishing this in 5 parts, published – hopefully – every two weeks (I will update links as I go) :

1. Winter/Spring 2003
2. Summer/Fall 2003
3. 2007/2008
4. Outpatient Services
5. Conclusions

• 

There’s just so much still to be done… going away is so much work! I’m leaving Saturday morning, which means that by then, I have to have cleaned up the place so that it looks presentable, have finished and packed up the gifts, packed my bags for the week, packed up the cat, watered the plants, taken out the garbage and recycling, wash the dishes, write and mail a letter to my insurance, go to the Social Security office to hand in my bus pass papers (which I have yet to fill out – think I’m going to do that right now), I have to run to the pharmacy, and do some groceries. Plus, I have an appointment late afternoon and a coffee date in the evening. Whew! I’m exhausted just making this list!

It’ll all go well, I know it will, I guess with my mood being so low, any excuse to wallow in my own self-pity is good. Today, for example, I got my final grades and I got very high scores, except in one class. Well, no, I got an equally high score in that class, except that it was well below the group average – I’m not used to getting “below” average grades, I’m usually at the other end of the spectrum, like in my two other classes. I know why my grade was so “low”, it was that stupid final where nothing was working right and I had to start over at least ten times to get a decent sample, and even then my colours weren’t really appropriate, but I just couldn’t start over again, it was beyond my energies. This exam was worth a whooping 60% of our grade – this one sample that we learnt how to do on week 3 of the class. Our scarf project on which we put in hours and hours of work (and of which I am particularly proud) was only worth 20%, the other 20% being six samples of specific techniques. All that to say that although I’m trying to justify my way out of feeling bad, and that I shouldn’t, because I know that that one exam isn’t representative of my abilities, and that my final grade was pretty exemplary anyways (I got 92 – the class average was 97), I just can’t help beating myself up about it. Like I said, any excuse is a good one…

Oh Christmas… how I wish I could just play hooky on the holidays this year… I’m in no mood to party. Family relations are tense, in part due to a rather violent altercation between my brother and my grandparents a couple weeks ago. My grandparents won’t be there and my brother apologized to us and them, so that shouldn’t even be an issue (any excuse). Relations ARE tense between my mother and I. I was getting really impatient with her last time we were together, which is one of the reasons why I’m cutting short my visit and choosing to spend the evening of New Year’s day by myself. I was meaning to ask my father to drive me up to the cottage because I don’t want my mom to see where it is (just another way for her to pry into my life) but I didn’t muster up the courage to when I last spoke to him. In a perfect world, I would ask and he’d say yes, and be well enough to it.

Anyways, I probably should go, it’s nearing 2am and I should have been in bed a long time ago. I doubt I’ll have a chance to update before I leave and there’s no internet at the cottage so I’ll be back on the first.

Merry Christmas and Happy New Year!

• 

 By Genie Tartell (DC, RN) and Ted Kavanau

I borrowed this book from the library, not too sure what to expect from it, and I must say I was pleasantly surprised!

The exercises are quick, relatively easy, and can be done by anyone. They stretch everything part of your body including the neck, back, legs, hips, arms, shoulders, abs, wrists, ankles, chest, and even the hands and jaw. I have been doing them before sleeping for a few days now and on those nights, I’ve slept 12-14 hours.

The book is separated in four sections: exercises done on your back, exercises done on your right side, exercises done on your left side, and exercises done on your stomach. The exercises are fully described, both in words and large step-by-step photographs; they also include an adapted modification. At the end of each section, all exercises are summarized on one page with their name and a picture. Ironically, the picture on the cover is not one of the exercises featured in the book. 

I do have to reduce the number of repetitions for certain exercises – notably the neck ones – and have to go easy on the ones on your stomach (they make my head spin), but otherwise have no difficulties. Depending on how I’m feeling, I’ll do just the first section (on your back) or all of them.

My only criticism, and I totally understand why it’s not done this way (you can’t do it in bed), is that there is no cardio activation prior to the workout, making it harder and more dangerous to stretch and tone muscles which have not been warmed up. All it would take is 5 minutes of walking. I’m still reflecting on how to do this in my tiny apartment as there’s not much room to walk and pacing would make the floor creak, something I’m sure my downstairs neighbour wouldn’t appreciate late at night. Maybe taking a bath would be enough to warm up those muscles.

It’s surprising how such simple movements with so few repetitions can really leave you feeling refreshed. I highly recommend you check this book out!

• 

Christmastime is approaching so very fast and I’m not at all in the mood. I bought my house a while back. I started this tradition where each year, I buy myself a Christmas house, write the year on the bottom, and add it to my village. I pulled it out today, along with a small tree, hoping to boost my spirits a little. Alas, it’s just had the opposite effect. I haven’t even started gift-making yet although I’ve decided on what I’m making.

I skipped my department’s party (the class I had there that day was cancelled, I didn’t feel like doing the 1h30 round-trip for an hour of standing with everyone, packed in our small kitchenette with no seating. I also skipped the party with the community organisation that’s doing my mental-health follow-up. My case worker will be disappointed but I have a good excuse: I had a final the next morning for which I still needed to do a lot of studying. That, and I was in no mood to party. The only celebration, other than family ones I’ll be going to is the one at the greenhouse where I do my rehabilitation activities. It’s usually a pleasant morning, with lots of people I know, and if I don’t have to put on a happy face for anyone (though I probably will anyways). 

I’m spending Christmas eve with my mom, my brother, and his girlfriend. I still have to contact my dad, see if I’ll be going over for lunch or dinner on the 25th. Afterwards, I’m off to my friend’s cottage for a few days. They’re heading down on (him, his girlfriend, and her daughter) the 24th until the 31st, so I’ll join them hopefully on the evening of the 25th or the next day. Supper at Mom’s the 31st, then heading back home on New Year’s day. I’m praying I can get my dad to drive me up to the cottage… long story, but I’d rather my mom not know where it is or see it. Just another way she can try and pry into my life. I’ve been invited to a party on the 1st. I don’t plan on going, I won’t know anyone but the hostess. I did however, use the invitation as an excuse to leave my mom’s a day earlier.

I’d rather just spend the evening alone.

• 

Yet here I am, first day off paralyzed in bed… just starting a flare up. I’m so exhausted! Tender points were really sensitive and I developed a rash where my glasses rest on my nose yesterday, so I knew it was coming. I tried to take a desperately needed nap, fell asleep, but about 20 minutes in, the phone rang. I tried to sleep again but all I could do was lay there, feeling miserable. I was hoping to get at least some dishes done today, because I have no clean ones left, no pots to even boil an egg in, and no leftovers in the fridge. Hopefully I’ll find some energy to clean off the blade and a container for my Magic Bullet so that I can make myself a very filling smoothie.

In the meantime, the pain and stiffness right now is are at their worst in my hands, radiating down to my wrists and forearms, which means no crocheting or knitting – my distraction of choice. Luckily I’m reading a good novel, so I think, if my head lets me, I’ll sink into a hot bath and stay there for a couple hours. I would really like to drag myself to the grocery store and get some easy foods like cheese, yogourt, juice, canned fruit and veggies. It’s only a five minute walk, but on my way back home this morning, I had to walk to the bus stop (just under 10 minutes) and it felt like my calves were on fire with every step. Now, flaring has gone from bad to worse.

Anyways can’t really type more than this. Though it won’t let me, sleep is what my body needs most right now…

• 

PRNs (prescription medication to take as needed) are available to me in very limited quantity – I get 6 triptans a month. That and since the headache-related pain is constantly present, it’s hard to determine when the headache crosses the line and becomes a migraine. My overlap: the pain is usually one sided, behind the eye, at the nape, and/or throbbing (though it moves around), I do get nauseous quite frequently, I’m always sensitive to light, and physical activity tends to make it worse and triptans do help. The limited amount means that I’m always evaluating whether it’s worth using it at that point, or will there be another moment when I’ll need it more and, if I’ve used them all, won’t have it available. I’m also concerned about rebound headaches.

I’ve never had the reflex to take PRNs, be it Tylenol, the triptans, or meds for anxiety. I tend to try to tough it out, because that’s what I always saw my father do, because I’m stubborn like him, because my ego wants to believe that’s it’s capable to handle it on its own. I remember during one hospital stay (the one where staff actually cared), the nurses were able to tell, either by my actions or in a conversation with me, when anxiety levels were peaking. They’d ask me repeatedly why I didn’t come to ask them for some Ativan during those moments since the Ativan worked wonders for me. I didn’t know how to answer that question… still don’t really. Often, I’d refuse it if it was offered. During those moments, they’d make the isolation room available for me, but they’d keep the door open and unlocked. But I digress… my hospitalisations will be the subject of a whole other post.

I’m learning and getting better at it though. I no longer hesitate before taking Tylenol to appease  menstrual cramps.

I’ve been experiencing a lot more anxiety lately than I have in a long time, so I’d like to ask Dr. Psych next time I see him, or Dr. GP, for a script for Ativan. They don’t like prescribing it because it can be addictive and it’s very prized on the black market, but the alternatives I’ve been offered in the last several year have been Clonazepam (doesn’t work) and, their favourite, a low dose (25mg) of Seroquel. I do take 300 mg of Seroquel XR on a daily basis, but I get more side-effects from the as-needed 25mg than I do from the 300 mg. It helps calm down, but it does so by totally knocking me out, and I feel extremely lethargic the following day… it’s not worth it, so I asked them to stop prescribing it. Given my tendency to not take pills, I’m not concerned about the risk for addiction. I’ve never had issues with substance abuse and I don’t drink, I don’t use drugs, I don’t smoke, I’m not an over-eater, I don’t gamble. The only ‘addiction’ I’ve ever had was the SI.

When I was discharged from aforementioned hospital, they sent me off with a ridiculous prescription for 1mg of Ativan to be taken as needed, up to 3 times a day… in other words, I could have gotten a whooping 90 tablets a month of the stuff (I never even renewed it and I don’t think I went through the whole bottle in a year) - now that would have been a good opportunity to sell it! That being said, it’s something I would NEVER do. It’s that kind of abuse of certain medications that make it so difficult for those who really need it to be prescribed suck things as narcotics, opiates, and antixiolitics.

I’m debating whether to label this as a ‘Thanks’ or ‘Angst’ post. Angst for all of the reasons given above. However I am thankful that there are medications out there that help me with certain issues, they’re not miracle pills, but I’m lucky enough to have find some that do work.

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A while back, I promised I’d share my secret ingredient for my vegetarian Shepard’s pie. Well, here it is: roasted buckwheat groats, or kasha. What is kasha you ask? Kasha (the grain, not the cereal) is made from the hulled grains of buckwheat (aka groats) which have been roasted. They have a nutty, earthy flavour and are plump, springy, and juicy in texture – I like to think of them as being ‘meaty’ (but I may not be the best reference as I haven’t had meat in over 15 years), as well as being easy to make and relatively inexpensive.

NUTRITIONAL VALUE

They are rich in manganese, magnesium, flavonoids, fibre, protein, and amino acids. They are said to help reduce cholesterol, help control blood sugar, they are heart healthy, and are a great ingredient to add to your weight loss diet. They are also gluten-free.

From livestrong.com:

A 100 g serving of roasted buckwheat groats, cooked, or just under 2/3 cup, provides 92 calories, 3.4 g of protein, 0 g of fat, 20 g of carbohydrates, 3 g of dietary fiber, 1 g of sugar, 4 mg of sodium and 0 mg of cholesterol, according to NutritionValue.org. In addition to being a source of complex carbohydrates and dietary fiber, roasted buckwheat groats are a good food source of two essential minerals. A 100 g serving, cooked, provides 51 mg of magnesium, or 13 percent of the recommended daily value, or DV, and 0.40 mg of manganese, or 20 percent of the DV.

COOKING INSTRUCTIONS

My method of preparation is not vegan, though I’m sure there is a way to prepare it without the egg. I simply sub the kasha for ground beef in recipes.

• 1 onion, chopped
• 2 tbsp oil
• 1 cup of roasted buckwheat groats
• 1 egg
• 1 cup of vegetable broth

1. Combine the egg and the kasha.
2. In a frying pan, cook the onion in the oil until soft.
3. Add the kasha, cook until dry, separating the grains from one another.
4. Add the broth, bring to a boil, and cover.
5. Simmer 12-15 minutes, until the liquid has been absorbed and the groats are tender.

FOR MORE INFORMATION

Dietician Leslie Beck wrote a wonderful article on this fab food which highlights many other ways to enjoy it and links to several recipes.

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Is it selfish to cry bitter tears when you hear of meaningful events (good or bad) in other peoples’ lives, because your heart is chronically empty?

My judgement tells me it’s the BPD talking… I’m sure there’s meaning to my life, I just don’t see it or feel it – I just can’t help the tears from falling, the anger from building, the guilt from rising, the regret from surfacing, the helplessness from scourging.

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There’s only one week left, finals week, and I did it. I did it and I excelled! I did it and never missed a class! I did it and I enjoyed it!

Since I’m bordering the subject of Fibromyalgia, I want to hop right in and share something that’s been on my mind for a while… on one of those days where standing still makes my knees feel wobbly it dawned on me whilst I was waiting for the metro, umbrella in hand, that maybe getting a cane could be a good idea. This idea was enforced by realizing that pushing up on the banister made it a whole lot easier to get up the stairs.

Pros: Could help easy some of the stress on my body, Would make it easier to get a seat on the metro / bus.(which would in turn reduce pain and fatigue).

Cons: I would feel extremely self-conscious, shy, and hypocritical*. It’s a hassle to carry around (if I had a folding one in my purse, it would’t get any use).

I would feel like a hypocrite in the sense that, even on bad days, I can get by just fine without one. Yeah, it hurts! But I know my body’s not going to fail me, I know the wobbly knees won’t make me fall, I know that not getting a seat on public transit may tire me out a little more, but I’ll still make it home safely – a can is not something that I NEED, it would purely be a luxury (if you can call it that). Yeah, I would only use it one really bad days, but am I ready to accept the reality that I might need a cane to get around? I don’t even know how to use a cane..

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Semester’s almost over, yay! Only two weeks left and all my assignments are almost done; I’ve gotten permission to go on an outing to the local trade show with my classmates (even though I don’t have the class it’s actually part of); things are sorted out with my teachers should I need extra time for my finals; I’m really psyched about my project for my intro to machine knitting class; and I printed out the last pieces in class today, which means that I can finalize the assignments at home instead of having to go to school to use the programs and equipment.

To celebrate, I stopped on the way home and bought me some potatoes (I’ve been craving Shepard’s pie) and some sugar pie, and cooked myself a nice meal. Talking about food… I’ll be sharing my alternative to meat in a classic Shepard’s pie, because I think it’s is awesome – not vegan but gluten, milk, nut, and soy-free, nearly fat-free, inexpensive, flavourful, and easy.

Health-wise, I’ve been managing the pain rather well. The dissipation of some of the stress from school surely has a part in that… as does the approach of winter. Winter’s always the easiest season on my body, despite the cold and the snow. You can be really comfortable in winter, so long as you’re dresses appropriately. It’s easier to add layers to warm up than to remove them to cool off – there comes a point where there are none to remove.

Oh yeah, I got a really important phone call this morning… I’ve got a GP! There is a real lack of family doctors around here. I’m on the vulnerable clientele list, which means high priority, and I’ve been waiting since April 2010. I meet him/her at the end of January.

One thing I’m really thankful for is the support system around me. There may long waits for some appointments, but should I need them, my doctors  can make themselves available. I’m blessed to have access to all my specialists (psychiatrist, neurologist, dermatologist, cardiologist) and to see them on a regular basis. I’m blessed to have the support system I have at school, to have access to the disabilities services and the remedial specialist, to have access to education at a very low cost, to have my travel expenses paid, and to still be able to receive my solidarity benefits as I do so. I’m blessed I have my social worker who comes to see me at home, I have the greenhouse program which has provided support, distraction, and has made me feel very valued. I’m blessed to have a regular income, food in the fridge, and a roof over my head. I’m blessed to be and intelligent and talented person.

Even though sometimes I feel worthless, totally alone, unloved, desperate, discouraged, sad, frustrated, etc., I am blessed for so many reasons and I think that’s something I need to remind myself of more often. I think it’s something all of us needs to do.

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I’m frustrated, I’m sad, I’m overwhelmed.

School is starting to take its toll on me. I was ahead in all my work, everything was going fine, but because I’m part-time and don’t have certain classes, I have to adapt  my last two assignments in my computer class. The first is fine, doing it will actually mean that I’ll be ahead when comes the time to do that class. The final assignment however, I have to modify entirely. Instead of making a presentation folder for weaving class, I have to make one for my knitting class. This means that I don’t have a template to go by like everyone else. It also means that I have to redo almost all my samples because they’ve imposed a theme on us for the year and, although our samples (for that class) didn’t have to respect the theme colours, the presentation folder does – I will also have to redo the whole thing when I do take my weaving 101 in a couple of years. We have to present it to the class, so it really makes me feel even more apart from everyone else. They all know I’m not in the other classes, it’s a small group, and they’re all really nice. It’s just hard enough to accept that I’m unable to do the program at a normal pace, that I’m limited physically on how much I can do, and that emotionally, everything is so much herder.

On top of that, I’ve lost my usb key – hopefully it’s in my locker at school but if not, I have to start over both assignments. Luckily, I haven’t gotten very far because I’m not able to work in class… I can’t stand it when someone’s watching when I work. The very fact that the teacher comes around to check that we’re not having any problems paralyzes me. I’d rather work in my own little corner and ask if I need help. In phys ed, class has been cancelled for two weeks in a row (teacher was ill then there was a student strike). So, we’re way behind in class. We haven’t even gotten instructions for our last assignment that would normally be almost done by now. This adds to my work load and finals are coming up really fast. I have to speak to my knitting teacher about getting more time for the final. I don’t think think I’ll need it, but I’m allowed to have it and it’s worth 60% of our grade. If that day happens to be a bad day, I just might need it… The very idea of talking to her about this adds more anxiety. Normally the disabilities centre would have communicated with her at the beginning of the semester but my program works differently, so I don’t think the teacher herself got the notice – though the program coordinator did. They’ve never had anyone benefiting from adapted services in the program.

I’m just really stressed out right now and feel all the more lonely that I don’t have anyone close who I can confide in. So, so lonely. Yet, I don’t know how to do anything about it; I don’t think I can right now. I’ve been in middle of a bad flare-up all week. I’m exhausted, I’ve been sleeping 12-15 hour nights. All the catching up in the housework I was able to do last weekend has accumulated right back up.

Sorry there’s not really anything constructive in this post. I just really need to vent and I’m hoping that this will help make those tears, the ones that are welling up but won’t just come out, flow and that when they do, they will ease some of this angst.

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I write this even though the subject is taboo… I write it because I believe it’s an important subject and because those physical scars now cause so much emotional turmoil and hinder me even more in an important sphere of life, one that always has been difficult for me and is even more-so now, an area that leaves me feeling so very lonely: relationships.

I used to self-injure… a lot. I’ve managed to cope otherwise for a couple years now, but I know that someday, I may need to resort to it again. SI has meant very different things and tended to different needs through the years. At first, it was to let out emotions I could not express, to tame angst I did not understand – with the pain of a physical injury, I knew why it was there, I knew why I was feeling it. Also, I always had put on a “high performance” front and this was my private way of admitting how weak I really felt. Afterwards, it turned into an addiction. I needed to feel the adrenaline and the endorphin secreted by the body to protect itself. I overcame that addiction, but I never forgot the analgesic effect these substances had on my physical pain. My last bouts of SI have all been related to this chronic pain. When I’d been months into a flare, when the pain was so unbearable I’d try to sleep on the cold floor or in an empty bathtub, hoping the discomfort would distract me from the pain, even a little bit. Because of my history with medical illness (especially with a diagnosis of BPD), doctors didn’t really take me seriously, so I had nothing to ease the pain. It was then that I would turn to SI. When attacked, the chemicals released by the brain numb the pain – it was that very brief relief that I sought. However, whatever the method or the reason, this behaviour has left very deep scars, literally and figuratively. These scars will fade over time, many have, but they will nonetheless still be very obvious. When I self-injure, my wounds are quite serious and usually require medical attention (I won’t go into details on the care they needed because I don’t want to go into methods or anything too “gory” – that’s not the point of this post, nor do I wish to endorse or encourage in any way this coping mechanism).

My social skills have always been poor, that hasn’t changed. I don’t see many people… I go to school, I go to my activities, then I go home. I don’t talk to anyone on the phone (except my parents, occasionally). I have friends, two, they’re a couple. I see them once in a while, we go for coffee or play . I feel so very lonely… I long for a meaningful relationship. I long even more for a romantic relationship. The kind of relationship I had with my first boyfriend, 11 years ago. The others have been few (2) and far between and I can’t really say they were healthy relationships. You have no idea how lonely I feel each and every day… I know someone’s not going to come knocking, that I have to do something to meet a guy… but I don’t know where to start. I don’t know how to go about it, nor do I really have the conviction that I’m going to find somebody. I’m aware I have a lot to offer, that I have a lot of qualities, yaddi yadda… but, who in their right mind would want to go out with someone who 1) has a history of mental illness, one that includes several lengthy hospitalizations, that requires being on medication for life, one that has been stable for a few years but is still very fragile; 2) lives with chronic pain, pain that makes occupying a full-time job impossible (thus on a very limited budget), one that makes her unable to attend (and/or appreciate) many social functions, one that limits her activities, her abilities to do something as simple as keep house, one that requires the ingestion of more pills; and 3) whose body is riddled with deep scars, ones that are a constant reminder of past turmoil and suffering, ones that are quite repulsive, ones that most will never understand why one’s own hand would trace them, ones that are anything but sexy? Who would want to get involved with someone who has such an intense history, a slow-paced present, and a rather grim future?

Another hurdle (as if all that wasn’t enough) is the lack of people my age in my surroundings. I don’t really get along with people of my age. My life has just been so different than that of most 28 year olds. My friends are all more than 20 years my senior, not that there’s anything wrong with that, it just means that they also don’t frequent people who could be potential boyfriend material. At school, 95% of the students are 17/18. In my program, there’s only one guy. I also don’t feel close to the younger half of the group… the older half either really. I just feel so apart since I’m doing the program in 6 years instead of 3. It’s a small group, 15, and they are all very tight knit (sorry for the pun – I’m studying textiles) whilst I only have a couple classes with them, and besides, come September, I’ll have to get used to a whole other group. There is one person I can say I’m close to and she is also a least 20 years my senior. I don’t mind that, because I believe that as long as you have one friend in a group, you can’t say you don’t belong. My lonely world just feels so much lonelier when I see my friends cuddle and kiss, when those around me talk of their boyfriends,  husbands and/or their kids; when everyone goes home to someone and I go home to my cat and my tiny, messy apartment; when all distractions – books, tv, movies, the net, radio, etc. – all constantly talk about relationships.

I realize I’ve rambled on… so I’ll conclude by going back to scars. Though the wounds they mask have closed, right now, I fear the scars may never heal, “cramping my style” in my lengthy quest for intimacy, an area in which I already lack “style”.

But you should never say never, right? Maybe tomorrow…

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I digress, back to the discussion about fibro: I was very surprised when she told me that she was very curious about the illness and had done some research on it, and how some exercise could make the symptoms worse and some were more helpful, but that exercise in general seems to be beneficial. She agrees that the general public is not sufficiently sensitized to the illness. This conversation made me wish I could spend more time with her to discuss longer and to find out what conclusions and beneficial exercises came out of her research… unfortunately, I’m just one of her 240 students. That being said, I’m incredibly thankful and impressed with how patient, understanding, and accommodating the college and my teachers have been so far.

In case anyone is curious, here are the accommodations that I was granted:

• The possibility of doing the program part-time.
• Adapted schedule – for me this means no more than 1 class/day, mornings if possible, and 2-3 classes/semester max.
• Note taker – another student who takes notes during classes on carbon paper and gives me a copy; they get a small bursary in return.
• Extra time for exams – I get 50% more (so 6 hours for a 4 hour exam) and I can take them in a separate room.
• Access to a remedial teacher.

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I managed to ‘sleep in’ til noon today. As is customary, I woke up nth amount of times during the night because I was so stiff and in pain. Luckily, I usually fall back asleep right away. However, my sleep has still been interrupted, thus isn’t repairing. I think I would have slept in longer, but it was just so cold in my apartment. I got up and hoped in the bath – I’ve been relying a lot on the bathtub lately. I can spend hours in there.

Speaking about hours, I just realized I haven’t had anything to eat or drink since those 5-6 chocolate chip cookies and the glass of milk I had in the tub. Not good. I haven’t taken my supper or bedtime meds yet either. So what have I been doing? Sabotaging my weekend really. The day started off well, I started felting a mitten I’ve been wanting to do for months. Then I let it soak, it’s still soaking… I forgot about it. I also made the terrarium I’ve been wanting to put together all week. When I was rinsing the rocks, the bag spilled all over the bathroom floor… they’re still there, haven’t picked them up. I should really have been rinsing them in the kitchen, but my sink is full. I haven’t done dishes in two weeks. Yeah,  I disgust myself.

So why did I not take advantage of this day where I had nothing plan to do those dishes?

Why  is it that it will probably take me days to pick up the rocks?

What have I done with the rest of those hours that went by? Well, I guess in a way I was kind of productive. I was doing homework, so that’s good. The not so good part is I started obsessing, doing to much, not being able to stop. I think that’s the BPD. I finally finished fiddling around making little diagrams. I only got 1 page done out of 4 though. It took me 12 HOURS, to draw a few diagrams and a couple of tables… something that should have been done in 1 or 2. I hate myself when I do that. But I just can’t stop myself. Every time I do something like this, I’m constantly telling myself I need to stop. That it’s not necessary. That the work or whatever I’m doing is already above average. It’s not like time flies and I don’t see it go by, I just can’t stop. Don’t know why. I’m mad and I’m crying and it hurts. It hurt emotionally, but physically too. Crying make my headache so much worse. I haven’t taken my meds either, so that means I haven’t put in my eye drops (I have really dry eyes), so crying makes my eyes burn.

So why? Why am I still sitting here, in front of the computer? Why don’t I set it aside, get up, take the medication, eat a bowl of cereal, and go to bed? Tomorrow’s another day. I can set as a goal to do the dishes and pick up the rocks. It will make my week so much more enjoyable: the kitchen will smell better, I’ll feel like making myself something to eat; I won’t be stepping on pebbles with my bare feet every time I come out of the bath nice and relaxed. My phys ed assignment is not due for another 2-1/2 weeks, so I don’t have to obsess some more over it for a while.

I guess I just needed to vent.

It just makes me so upset when I sabotage good, low pain, low stress days like I did today. I get so few of these days…

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This is your first post, produced automatically by Blog.com. You should edit or delete it, and then start blogging!

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