Being bipolar with MS

I'm not really bipolar, at least I don't think so, but there's this thing that happens to me sometimes, where I am busy and suddenly my fingers type very fast and I kind of go into a fugue state where I flow through my day without actually being part of it. 

The next day, I am overwhelmed with the blues and a feeling of insignificance and the urge to abandon hope and flee to somewhere, anywhere, where I can be alone with my thoughts.

It's not a good time to read books talking about suicide at those times.

Now that I know that this happens, fairly regularly, I try to ignore it and carry on, knowing that I will be better soon, after a bit of rest and accomplishing some things and yadda yadda.

Yesterday was one of my spin days. I wrote in the morning, volunteered in the afternoon, went to a talk in the evening. I don't believe I was truly present for much of the day, covered over with wax paper mentally, feeling separate from my environment. And then the evening session I went to I couldn't shut up at, despite my telling myself to.

Sounds pretty manic to me. Home and tossing and turning all night (to be fair, my sick cat was to blame for much of that), and now today I am on the edge of tears and just wah wahing to myself.

It happens fairly often, this rapid change. When you feel physically good with MS, you feel as if you are on speed. You can DO things, the fatigue is eased for a moment, you don't feel as if you are going to collapse into a narcoleptic pile at any moment. You can physically sit for a bit and NOT fall asleep. It's a rush.

So off you spring like a bunny rabbit and you do many more things than you are used to in a day and then huzzah, you pay for it with tired neurons and a post accomplishment hangover.
People tell me to pace myself, etc etc, but if I lived my whole life according to my bad days I truly would give up. I have to have hope that something will turn out right, sometime, that the me that is inside can still struggle through the wax paper and interact.

The more I find myself being inappropriate during my up days, though, the more I think I should stay away from people. Which isn't a good thing.

Time, I foresee, to get some help...again...or maybe I am overmedicated....

So, if you're crazy, how do you know?

Just came from a very non-rewarding visit to my MD. I battle depression as a part of my MS and it is really screwing with my good time lately. Could it be the fresh lesions on my brain despite my DMT? Or various family issues? Or my being financially tight and chubby and getting older? Or maybe the visit with my neurologist where he told me that yes, I was actually having new symptoms that affect my hands (AAUGH!) and eyes (DOUBLE AAUGH!)? Serious enough that he ordered a repeat MRI for me and I only had one six months ago. (unusual here in the hinterland). Who knows?

Or maybe my MS is just attacking my emotional centre as well. It'll do that.

Anyway, my doc is of course asking me what my problem is. "Don't you feel you have value?"

Um, not if I'm not contributing, no.

"So are you saying people in wheelchairs don't have value?"

Of course not. They all have their own value. It is MINE that isn't there....

It's nonsensical, but then those are the blinders depression puts on a gal. I can't even argue it anymore. My therapist is trying to convince me I have value in just existing, but hell, I'm not buying it. Funny thing is, I know others who just exist and I love them dearly and never ever think they should go tumble off this field of tears, but me, yep, the thought of not being here to deal with it all again and again and again is tempting.

See, it's all cyclical, and I don't even have periods anymore. I sink down into depression, I wallow, something jolts my battery (usually something/someone new) and I rumble to life again, but the battery light is still flashing on and off in a warning sort of way. I don't think I've ever had it go out completely since I was diagnosed, and I am getting SO TIRED OF MYSELF.

Fortunately, I only live with a cat, so the damage I inflict with my depression on others is necessarily limited to a few guilt-inducing emails now and then. My cat is an older fellow, declawed and neutered, so he can identify with my anomie. For a while he lived with my birds and was told not to pounce them. He's happier now that he has my permission to eat any moving small creature we come across, especially spiders.

I know exercise, music, sex, good food, cheese, and girly drinks all help. But when I'm depressed, I can't make myself reach for those things. I simply wallow. Surprisingly, the other day, I actually cried. Haven't done that in years.

Hate crying as I go all blotchy and red when I do and I develop a terrible headache. So then I feel awful about crying, which isn't helpful on the whole depression thing.

In any case, a lot of this is probably due to a MS flare-up so I know if I wait it out or do something, it will eventually pass. It's good to know that.

For any of you in my same mess, there's a pretty good book online about ms and depression 
symptoms, written by the same author who wrote "MS and your Feelings". Check them out, and get yourself some support. The one thing I've learned through all this is that it's your friends (and pets)who will see you through. Don't bother counting on family.

How does one say goodbye?

I'm feeling pretty damn blue this morning. And angry. And frustrated. And just plain fed up.
Part of it is, I'm sure, the overlay of fatigue I've been dealing with for weeks now, so heavy it is like a Nova Scotia weather forecast - alternating between foggy with sunny periods and sunny with foggy periods.
But the deepest indigo is about my dog.
Chutney. Sweetest poodle ever, but still a puppy, given to scrambling off after interesting smells, wanting to play, demanding attention and love. As my walking capability has rapidly decreased to where it is a rare day when walking seems like a good idea, Chutney becomes more of a problem. He knows I'm in pain. He follows me around, holding a toy, looking at me sadly with his brown eyes. He foolishly has to pee and poo, and today, when ice covers everything, the near miss of falling is scary. I can't see managing a puppy and a walker together. He's strong enough to pull me over.
Initially I thought I could handle having a dog. I got Chutney as a statement of hope. I was moving to Nova Scotia, my life was moving forward, I just knew I'd be better in a more temperate climate, instead of suffering through the heat of Ottawa summers. I knew there'd be beaches for Chutney to romp on.
What I didn't know was that I wouldn't be able to easily walk those beaches, that pain would accompany me everywhere, that my leg spasms would become so significantly worse.
Chutney isn't without his faults. He knows when I'm too tired to play and he uses it to be bad. He whines if I don't pay attention to him and he costs a fortune in doggy daycare costs I can ill afford, but feel I must so that he gets some sort of quality life. The cost in treats alone is harsh, but he needs things to chew, probably because he is so frustrated with having to watch me sit about all day.
So, it's time for us to part. I have a friend who has a friend who has found him a home with a yard to run in, another dog to keep him company, a healthy family that can play with him and take him places and afford the food and toys and such. I'm hoping they like each other and that I like them, cos I won't send him away with anyone I don't like.
But...I am broken-hearted. To go with my broken, broken body.

does being numb make my soul numb?

Being numb now for over a year, I often wonder what other effects it has on me. I'm not totally numb - as I've noted, sometimes I have pieces of sensation. The numbness is becoming more profound, though - affecting my balance, my ability to write and type and chop bagels without injury, blocking inner sensations from bladder and bowel and other more interesting places. (Dang it!)
Neurologists invariably say they are less concerned with numbness as a symptom than the other things like muscle weakness and such. It's not supposed to be so serious. And yet, it changes our lives.
 For those of us so enclosed, it's pretty disabling. It disconnects me from the world, makes it seem like I'm watching outside me through a pane of glass - and with my blurring vision, that isn't so great. And it has this other effect, too, of making me feel distant from people, from the world, like I'm shut in a padded room where even the room temperature doesn't make me feel.
Philosophically, it makes it difficult to care. Because I feel distant, I have to constantly make an effort to reach out through the fluff to touch others. It's easier to remain inside, where I don't have to make the effort.
  Maybe the exterior numbness is contributing to depression. I know I've battled depression for years now, and wading around there in the darkness does make things seem muted, edges less sharp, needs less urgent. I find as I get more depressed or more numb, I go for exotic tastes, different experiences, more carbs.
I probably just need to exercise more, to thrash my wooly body through space so that I can get a feeling for where my limbs are. Usually that helps The deep breathing helps, too. The exercise makes me more numb, but somehow makes that all right after all.
But oh, it would be nice to feel certain things again: the fur of my puppy, the touch of my friend's hand, the roughness of sand, the smoothness of rocks, the barrel of a pen when I pick it up to write.
And let's not spend too much time on this, but it would be smashingly lovely to feel making love again. Or a bit more, anyway. 
Maybe I need those steroids. Might help my sex drive, too. Of course, would grow more hair to be fried off by my friendly local electrologist, but it could be worth it...I hear ZZTop are still doing pretty well at their advanced ages...


Here are a couple of things from the National MS Society (which as usual, is the name of the US branch - why they think the rest of the world isn't a nation, I dunno) on numbness. Reality is, if you've got it, you're screwed. Not that you'll notice...


There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation. National MS Society


http://youtu.be/jjcD7a3SB9o

Swing low, sweet chariot...

Whew. These mood swings do lay a girl low. I'm already hepped up on antidepressants and yet I sink, lower than a frog's belly. Nothing tastes of anything to me. Music bores me. Sex is uninteresting (well, I'm numb, so, what do I expect?). Even the thought of a hot bath is too much.
I find myself oversensitive, tired of speaking to people, yet hungry for company and distraction. My body aches. I want chocolate but can't taste it.  I want wine, but it has no flavour.
It would all make me quite desperate except that I know it's just another sneak attack from the MS - I've been having more difficulty with my balance and my walking, so I know something sinister is afoot, and I expect the darkness in my soul is just a part of that.
I'm hoping to avoid the incontinence thing - it's a rare problem but when it occurs I am desperate beyond measure. I live in dread of wandering about, smelling vaguely of pee, yet I know when and if it does happen, I'll just have to dig deep and keep going on. Like those books that are proliferating everywhere that say "Keep calm and carry on". Or "Eat cupcakes and carry on", which I prefer. I might be able to taste a cupcake.
I know a woman who has terminal cancer. She's not in pain yet, she knows she is going to die soon. She is the most cheerful person I know - handles it all with aplomb, is kind and sweet to all, is the sort of woman who says I love you to her spouse 10 times in one phone conversation. I'm trying to learn from her, as I pray for her. I wish I had her jollies.
Ah, I'm probably just pooped from entertaining folks. And other, grimmer events. I'm sure it will pass, because I just heard a seagull scree outside my window and I had to step out into the cool night and feel the breeze on my skin. I can feel little cheery sunshine lines springing up from my heart. they're faint, as yet, and if I let myself think over the events of today, I'll squash them out. So instead, a cup of tea, some mindless entertainment, and early to bed - and the hope for a sunshinier tomorrow. It's about time for this roller coaster to head up again.

Grieving

Before I was diagnosed with MS, I was diagnosed with the depression associated with MS. Of course, they didn't know that that was the cause then - they thought it was garden variety depression and I was quite willing to accept that. Trapped in a marriage I was desperate to leave, numbed down to anger, frustration, sorrow, in pain and with weird body symptoms, I thought this was maybe the solution, and I went on and took the suggested antidepressants with hope.

They worked. They kept me from going mad, they gave me the strength to leave my marriage, to change my job, to continue confident although by then my brain was operating at 20-80 capacity, uncorrected.

MS gave more reasons for grief - losing my capacity to work, making poor judgements, financial losses, physical changes I was unable to ignore, and my change from healthy to patient. I handled it all with aplomb, rarely crying, rarely allowing myself to wallow completely until the emotions would be so strong they sent me into suicidal despair. Even then I shook myself off, wiped my slightly weepy eyes, and went on. Movement equaled coping, and as long as I didn't pause, I could think I was coping okay.

Lately, this hasn't been working for me. The numbness of my body, now total, is also matching the numbness in my heart, in my brain. I've developed such high walls around my garden of grieving that I've needed to throw all other emotions in there - joy, love, hate, adoration, belief, everything.

A couple of things have started knocking at the walls. First, my ex has decided to remarry someone who I know deep in my heart is bad for him. I am amazed that I care, and that I am so so angry at him for the way he treated me, still, and for the fact that he has found what he feels is love and I have been unable to. I don't want him back, no no no, but it is galling he has fallen in love with someone so different from myself. And that he grants her things that he denied me, without question.

Second, I lost some people very dear to me lately - a favourite aunt, a sweet uncle. Their deaths made me revisit the deaths of my parents, so long ago, and also ungrieved (see ex, above). They also made me revisit other relationships that haven't gone well, or that I have lost.

Also, a very clever woman asked me yesterday about my "well-guarded" status - and asked about grieving about the MS. Of course I started draining like a leaky faucet right there and then. Yes, I am totally guarded, that's my problem, and the thing about MS is that you have new reasons to grieve every day. Little losses, little gains that are illusory, little hopes that get crushed, and now little fears that grow up in their place. I've spent so much time pretending I am okay, with everything, that I almost believe it, but not really. I joke about losing my sensation, my continence, my balance, my ability to stand. But it isn't really funny and perhaps I just need to do some private grieving and let it go.

Maybe I'm like Yellowstone, that huge volcano in the middle of the US. If it were capped, it would build up pressure and explode, rupturing most of the US and destroying all about it. But it lets off steam, all the time, through Ol' Faithful and various other geysers and little leakages, so it will likely not explode. Maybe I should let go slowly, rather than slapping on a lid and a smile, joking my way as I fall apart.

Tightening circles

I am afraid, yes, as my friend Paula and I used to say to one another.

MS is sneaky. It makes you feel "almost normal from behind", another favourite family expression. I think I am the same as I ever was. But I'm not, and I find that inescapably hard.

No, it's not the physical symptoms. Of all the things I miss, it's the mind I miss the most...

Just had a lengthy talk with my ex, a man who knew me (as much as he was capable of) for the last 26 years. He tells me I've changed, that I am emotionally swinging back and forth on a rollercoaster, up and down, unpredictably so. He tells me I am not the same, should not trust myself in public, should warn those who deal with me that unexpected things may happen.

Normally, I'd tell him to get stuffed (I mean, my reactions to an ex are often different than they would be to another person), but he makes a good point. Before I left my job, I knew I had to leave - I was weeping uncontrollably, high as a kite one minute, low as a turtle's underbelly the next. I felt bipolar. It was the fatigue and the lesions seem to be in my mood area, perhaps.

I'm still the same - even his slight criticism of me has made me weepy. Why? Because I was offered the chance to do something interesting, and although I realized it was probably too much to take on, I was talked into a smaller role. Thinking about it now, I know I won't be able to handle it if I am challenged, which I probably will be. My memory losses are legion. Presenting is a terrifying thought, keeping track of conversations is impossible. I can focus for one to 15 minutes - but an entire half day? And remember things? In a crowd of 40 people with opinions of their own? And all the noise?

And imagine if I should break down and cry? I would DIE of embarrassment.

So I'm sad, because I realize I can't do this interesting thing. My circles of operation tighten around me. I feel my MS pants tightening around my body, making it harder to breathe.

It's a grief process every time, because I play with the idea that I can be somebody and then realize that that's all in the past. Now I will be a somebody, but a smaller one, more peripheral, girded about by my MS cerebral hug. Or is that a smothering?

Feeling the need to get drunk....;-) thus killing even more brain cells!

Fortunately I've lined up a helper who may be able to help me redefine myself. I just hope like hell she doesn't tell me to just think positive and do these things. I am too self-aware to do this, amongst my former colleagues. I still have a bit of my pride....

A wee chat about suicide, for World Suicide Prevention Day

Suicide.

Such an ugly ugly word.
Such a sad thing, for the person, the family, the friends, the world.

MS and suicide are rather closely tied. It all starts with the underdiagnosed depression in MS patients - often no one even enquires, or figures people with MS are just adjusting to a chronic disease and thus a bit blue.

Why does depression occur in MS? The official answer is that no one knows, since we aren't really sure why depression occurs in anyone. Some hypothesize that it is due to brain changes caused by the disease, changes in neurotransmitters or conduction of impulses, damage done by lesions in the brain. Some think it is adjustment. Others, including me, think it is a combination of the above plus the loss of control MS presents to you. MS is unpredictable, unreliable, teases you on by making you feel well, then knocks you flat. It steals little bits from you at unexpected moments - sensation during an embrace, strength during a walk, ability to talk during a presentation, ability to taste during a luscious dinner.

Some hypothesize that MS patients commit suicide more frequently because it represents a taking control over a disease process over which they have no control. I know when I was first diagnosed, I researched ways to commit suicide. I made my plan, a "just in case" plan, in case I ever needed it. I had to do this to give me that feeling of control. I make sure I always have the means available, although I will likely never do it. I just need to know that I can.

According to Feinstein's research (2002), almost 30% of MS patients harbor suicidal intent over the course of their illness. Sadovnik et al (click on title for source) found that 15% of all deaths in a MS clinic population were due to suicide - a two-fold rate of suicide compared to the general population .

Risk factors include alcohol abuse, social isolation, and unemployment. Many people with MS start to isolate themselves, because of their inability to get around, their fear of incontinent episodes, their fear of mental lapses. A goodly proportion give up work because of the overwhelming fatigue associated with the illness. This both leads to financial problems and more isolation.

It's no wonder alcohol abuse seems like a good idea...

People with most chronic diseases benefit from continuing involvement with life and with a continuing purpose. I think it is something for the health care system to think about - how to keep people involved, how to allow the patient control over their health and conditions, how to point them towards the right place for support and involvement. Often the "system" is all about taking control, wresting it from the patient, putting it in the hands of the expert. Maybe it is time to reevaluate this...

The rate of suicide in MS is highest in the first year of diagnosis, often before true disability sets in. Perhaps this is where it is most important to offer help. I know I was diagnosed and left hanging for six months with no one but my wonderful drug company nurse to keep my soul together. I don't think this is right. I think we should focus intense intervention for people newly diagnosed to get them settled on a good path to managing the disease, and with this perhaps prevent the carnage of suicide. What do you think?

In the meantime, perhaps everyone should look about you and see who might be in the most need of support, ill or not, and reach out. Suicide can be prevented. But we have to talk about it first.

The black dogs

Churchill referred to his depression as his black dogs. It's a wonderful expression. Dogs follow you. They want to be with you even when you are tired of their company. They are familiar, and comforting, and warm. They come when no one else will.
And they pass wind at the most annoying times.
I've been battling my own black dogs of late. Although they are familiar and friendly, they do shed all over my life and I find myself with mouthsful of hair and the inability to swallow or speak. They seem to grow or shrink as my life goes, right or wrong.
About a month ago, they were very large. They curled up with me at bedtime, crowding me out of slumber, breathing doggie breath over my dreams, making it almost impossible to breathe. I spoke to my dog handlers then, asking for help. Some gave useful advice. Some ignored the huge behemoths sitting beside me. Eventually, life unstopped and the forward motion kept them running to catch up with me. They'd been lying about a long time.
But eventually they caught up, and it seems no amount of persuasion will shoo them away.
Perhaps they grow on the weight of my bad decisions, or the fatigue associated with MS, or the endless, creeping, subclinical pain that makes movement hard and joy harder.
Right now they are curled in the corner of the room, watching me. I throw them a treat now and then and they catch it in their jaws, swallowing rapidly so they can watch me with that curious doglike vigor. I don't want them any closer, so today I am running again, sorting, packing, cleaning, preparing. Perhaps the activity will wear them out and they'll sleep.