We cannot recover from diseases like diabetes or manic depression without help from the people around us.
Without help I was left to the whim of a disease which convinced me day after day, hour after hour, that I was worthless, and the best option I had was to stick a knife in my wrist and hope it went deep enough.
The only way I’ve been able to fight back against the manic depression was the constant help I’ve received from a psychiatrist who specializes in manic depression, and finding the will and clarity to remember to take the medications. The help I received from family was minimal, but they did supply me with rides to my appointments, as well as a $200 per month allowance to supplement my disability payment.
In my recovery from diabetes, on the other hand, I’ve been left on my own. And maybe that’s my fault, sometimes I don’t make it clear to the people I rely on how important their involvement in my recovery is. But, at the same time, most of the people around me don’t push. If they cancel a ride, I’ll shrug it off, but they’ll be more likely to cancel the next one as well.
There’s also the lack of a firm schedule. I see my psychiatrist every two weeks, it can take three to four months to see my family doctor. If I managed to get through to his office tomorrow, for example, my appointment would be scheduled for mid to late September. People forget.
Basically, my family doctor is barely useful to me. I last saw him almost a year ago and we agreed, if my blood sugar results remained high, I would be put on insulin as well as the Metformin and Glyburide. This past January I called his office and made an appointment for May, of 2011. I missed it, and that’s my fault. But there was no courtesy call to remind me.
I did manage to reschedule my appointment for this Wednesday morning, but only because I explained to his assistant I was diabetic, my numbers are extremely high, I had broken my foot, and both the ER doctor and orthopaedic surgeon told me insulin would be a really, really good idea.
The surgeon also told me I was a prime candidate for something called “Charcot foot”, which is basically the last step in the devolution of a diabetic before we lose our feet.
Two months ago I asked my family for the same $200 per month allowance they had given me during my recovery from manic depression but, I told them, I’d only need it for three months. It wouldn’t be a “forever” thing.
At first I was told all about the hardships I’ve caused the family. Then I was told I would be given a cheque, signed to my landlord, for $350 to cover any outstanding bills I might have. When I told them my bills were covered, and I only needed what I asked for, I was told they would cover my rent, of $384, again by cheque to my landlord.
The next offer was to take me shopping, where they would pay for my groceries. In a truly bizarre revelation I realized they absolutely refused to trust me with cash. In the end, after telling them my rent was covered, I received gift certificates for $150 to a grocery store in the next town. It was made fairly clear that would be all I was going to receive.
So I used it to buy the amount and quality of food I thought necessary to move my blood sugar numbers downwards. And it worked. For two entire weeks my blood sugar fell from the mid-20’s to between eight and ten.
Then I ran out of decent food, and money, and getting to the store where the certificates were valid was impossible without a ride. And, surprise, the numbers have gone back up to the mid-teen’s.
There is a pattern in there. For the first ten or eleven years after I was diagnosed with manic depression I was left on my own. I survived on welfare, and living in rooming houses and, after being lectured, could look forward to finding $20 in my bank account sporadically. On my $4 per day income there were also occasional bailouts, for bills and rent.
After relying on the occasional handouts for almost fifteen years, the $200 allowance was my idea — because I was tired of being lectured to about financial hardships. The real problem was my waiting until I was desperate before asking, so a set amount every week, I thought, made more sense. And there was peace.
But my family still offers me cake at birthdays. Years after being diagnosed as a diabetic, they still offer me chocolate and pop. Just like, years after I was diagnosed with manic depression, they would scream at me to get out of bed, or tell me their lives would be easier if I just got a job. My youngest brother calls me a “schizophrenic”, in a mean and nasty tone, when he’s talking to the people he works with.
There are intelligent people. Stupid is fairly rare in my family.
It was my decision to move to my home village almost eight years ago now. It’s cheaper to live here than in Toronto, it’s closer to the psychiatrist who originally diagnosed me, and closer to my support system. It wasn’t my family’s idea. There were no offers of “hey, why not come back here where it’s safe and get this recovery thing started”.
When I broke my foot, I emailed my mother and told her I was going to be changing my diet, so I could get my numbers down. And she told me “it’s about time” (close). As if she had been offering me help all along, and I had been doing something wrong, or that she knew my numbers were horrible all along and was just watching me deteriorate.
It was like she was exasperated with me for not getting started sooner, yet never offered to help. Or something weird like that.
There are times when I just want to yell at these people… “I have almost no feeling left below my knees, you fucking idiots”. And it reminds me of the same urges I’ve had when dealing with their reactions to the manic depression and subsequent poverty issues.
…anyway. My girlfriend is dropping our son off just before the sun rises, and I’m taking him to the park later so I need some sleep, which means I haven’t edited this thing. I think it makes sense.
Its sad that families, not having the first clue about what chronic conditions and poverty are really all about, can be so deliberately obtuse. My thoughts are with you.
You are giving mixed signals , contrary statements.
you wrote “most of the people around me don’t push”
I remember a blog post , I agreed with mostly, where you listed things not to do.
“Please, please, do not ask me what I have been doing over the past week, two weeks, day, three days, hour, whatever.”
How are they going to help you, if you cant honestly review the work you have done?
People cant help you if you are too short tempered.
I and you dont like admitting to making mistakes, not many people do.
Its the only way to learn, learn from what I am- you are, doing wrong. This can only come from constructive criticism.
Your Dr should have called you ahead of time, but you should have fought harder to make it the appointment instead of being passive agressive/self destructive/suicidal by neglect. You are sticking a knife in your wrist, the same way smokers are slowly commiting suicide.
But if your blood sugars are F-ed up, your reasoning brain cant work at 100%.
It is a paradox.
My rent is $502.00. I have no internet or cable TV. You have to cut them off, as they are luxuries you can not afford.
Mixed signals are all there are in life, especially when you’ve got a disease the people around you don’t take seriously:
“You’ve got lung cancer from a twenty-year two-pack per day addiction? Wow. If there’s anything I can do, just let me know. Excuse me, I’m just going to light up… hey, want one of my smokes?”
I’ve written before that it can’t be left to us to plan for our recoveries, especially when we prove everyday that we can’t. Eventually our families and/or friends have to become involved. The consequences of their non-participation are a prolonged illness and/or the involvement of the legal system or hospitalization.
The thing about that post you’re quoting is it’s a letter I sent to my parents after putting up with them ignoring my recovery, or my need for a recovery plan, as well as my continued requests for real help, for sixteen or seventeen years. There’s almost two decades of frustration, resentment, anger and even hatred stuffed into those words.
The problem is, when the people around you ignore the… “problem” that’s right in front of them for so long, when they do try to help, whatever help they offer, is mostly too little and mostly too late.
That letter came from a situation where my parents basically broke into my apartment to find out if I was dead. The problem with that scenario is… what the fuck was their plan three weeks before the break in? Or ten years before the break in? Or in the five years since the break in?
It turned out their only plan, in the seventeen years leading up to the event, was to wait three or four weeks after having last heard from me, then ask the landlord for a key to my apartment expecting to find my corpse. That’s not a good plan.
But so far it’s pretty much the only plan anyone in my family has come up with to help out with my recovery from manic depression.
…I’m pretty sure the diabetic version of breaking into my apartment will be for my parents to go through my sock drawer and throw out all the rights.
The thing is, I’ve made mistakes in my recoveries — obviously, because it took me so long to get them started — and I have no problem admitting to them. I refused to take my Lithium for fourteen or so years because I thought it’d fuck up my writing ability, and because I remained consciously ignorant of what bipolar really meant.
I ignored an 18 blood sugar reading on my friends metre in 2001 because I was an idiot, who then waited another ten years before talking to a doctor about diabetes.
But my mother, for example, still refuses to read any literature about manic depression or understand the side effects of the meds I take to fight it. She made it very clear a long time ago she will not discuss my stay in the psych ward of the Ottawa General.
Whenever I try to talk to her about the depressions, she takes it as an insult, as though I were blaming her for them… which actually seems about right, to be honest. But still.
They could have helped me with my recoveries anytime between 1988, when I was diagnosed with manic depression, and yesterday when my blood sugar reading was in the 20’s. But they haven’t.
And that’s not my fault, because I’ve tried to get them involved in my recoveries. I think I’ve just given up asking for help, but I’m still shocked that they continue to not offer any kind of plan.
My rent is $381 (one bedroom), my income is $1050/month (ODSP). Somewhere in there is a decent budget for decent, diabetic-friendly food. My plan was to have my family kick in $200/month for three months, so I could get rid of all the outstanding bills I have. The three months would also give me the time to prepare a proper budget.
I received $150 in gift certificates to the most expensive grocery store in the region, which is eight miles from my apartment, and I cannot get reliable rides.
…I think my cable and phone are about to be budgeted out for me.
Thanks Mark… it’s great, as always, to have you comment here.
…just one other example, just because my brain won’t shut down:
This was in 2002 (May to August)… I had been kicked off welfare, my brother asked me to move out of his apartment, I was living in a rooming house “rent free”, my parents had made it clear for many years I wasn’t welcome to stay with them, my mother had explained how I was a financial burden on the family, my landscaping job was done and I had no income, I was untreated, in a deep depression and in a full-on PTSD trip.
My plan was to kill myself. So, late one night, I called my mother collect to say goodbye. Four minutes into the conversation she realized something was really wrong, and tells me I’m welcome to move back home.
Apparently that was my family’s plan: isolate me, offer me no support, make sure I’m homeless, destitute and suicidal, then offer me a place to stay… but it only works if I happen upon a payphone just before I kill myself.
…I guess it worked.
We only have this moment in time, this present moment in time. Stay in today. The past is the past. Your family forgetting your diabetes ( offering cake sugar) might be stupidity or to push your “anger” button.
I can give you advice on how to balance a budget , but you don’t follow it.
Number one is don’t take any money with you when you go out . If you don’t have the money on you , you cant fall to temptation and spend it unwisely , like on a $10.00 DVD I just have to have. If I am going to the grocery store to buy food, I bring the expected bill amount of money in cash like $20.00. I keep the cash money in a lock box I keep locked (discipline) so I can only get to the money ( the Government gave to me for my health) when I have thought about it.
Okay my friend, this might not be what you want to hear, but it sounds to me like you want them to prove their love for you by taking care of you. I think you need to stop waiting for them to help more, stop resenting them for not helping enough, and start taking full responsibility for your own health. You could spend the rest of your life waiting for something to happen over which you have absolutely no control. The only thing you can control is YOU. So take charge. If you don’t care enough about yourself to take care of yourself, do it for Victor. He’s going to need his Dad for quite a few years yet.
Yeah-but… except it was me, eight (or whatever) years ago who took control of my recovery from manic depression. They helped move my stereo, books and bag of clothes after they kind of realized I was suicidal. The rest has been me.
It was me who, back in 1989, checked myself into the Ottawa General because I was suicidal. It was my step-father who refused to visit me, and my mother who ignored me sitting there in a hospital gown and debated with my shrink over her role in my depressions.
The diabetes recovery, for all it’s inadequacies and screw ups, has been all me as well.
I have definitely taken cues from my family regarding my health. Both my grandfather, because of a reaction to a medication, and my mother, because she gained 100lbs in a year, have had Type-2 diabetes.
So if I tell them I’ve had a handful of blood sugar readings in a row above 30, which is coma level, and they act nonchalant, I tend not to take it that seriously. It becomes just another cool fact about Gabriel…
“You can twist your tongue? Well I can score a ‘+’ sign on my metre because my blood sugar is so high it won’t even register anymore. Yeah, at that point the booklet says I’m supposed to be dead. Cool, eh?”
I’ve been open about my numbers, I’ve explained to them 40% of the feeling below my knees in both legs is gone, I’ve done the tests and organized the rides.
Then they offer me cake, or ice cream. Yesterday at lunch, my grandfather, after finding out I was going on insulin, asked if I wanted Jell-o for dessert.
Yes, I’ve been resentful and hateful and generally pissed off at my family. But, I think, there have been reasons in the distant and near past to justify the emotions.
But I am pushing forward on my own… really, really, really, honest.
Today, for example, I set up appointments with a foot doctor, an eye doctor, the diabetes clinic, a nurse who will look after my feet, blood work at the clinic, another neuropathy test on my hands and feet, and set up four appointments over the next year with my family doctor.
“…you want them to prove their love for you by taking care of you.”
I think that applies to almost everyone at some point in our lives, though.
I told my psychiatrist a while back that I’ve basically spent most of my life waiting for my life to start. Or at least to happen.
Thing is… I spent the first eighteen-years of my life waiting for my parents to be parental, then the next fourteen-years waiting for help with a disease that makes it nearly impossible just to find help.
Just to sum up the example in the post: back in 2002-ish I was in an insanely dark and deep depression. From January until May, while I was suicidal almost every day, my family offered me $110/month and a free place to live (that had no heat, but that’s quibbling).
But just because I asked, not because they thought they were helping with my recovery or whatever.
Then both stopped. Afterwards, on my own, I found a place to live, a job and tried again to get my recovery started. None of which worked out, because I was still too broken to even walk straight.
So I called my mother to give her the “bipolar bye-bye shout out”, and was given a bedroom, food, heat, lectures on my sleeping hours, weekly reminders of my leech-iness, and demands to know why I wasn’t looking for an apartment or job.
“uhm… because I have PTSD, all the side effects from new medications, plus the bipolar suicidals. You know, like I’ve been telling you in the literature I leave on your bed.”
The lack of involvement from my family in my recoveries has been way more damaging to me than their involvement has been helpful.
I was in desperate need of help for a long time, and no one in my family would read the pamphlets. Yes, that still pisses me off, because it’s a lot of wasted life time.
But I’m better now. Mostly thanks to me.
Thanks for the comment Zoom, it is, as always, very much appreciated.
I’m on your side, Gabriel, and I’m really, really happy to hear you made all those appointments today.
…just a disclaimer meant for my own state of mental health and well being, and in case there’s a chance anyone is taking them personally: any aggression or frustration or anger embedded in my replies to you and Mark was not aimed at either of you. Maybe a tinge of exasperation, but not the other stuff.
I really do need opportunities to write about this stuff, and responding to your comments are generally the only ones I get outside my shrink’s office.
Thanks for being on my side. Seriously.