Why White?

A friend on the Bipolar support group was curious about why she seems to only wear white, and what it may mean.

The effect of colours on one's attitude is something I have thought a lot about over the years.

For a couple of years I only wore white. It was not enforced, I just did not want to wear any other colour.
That was also the time I was at my most introspective.
In hindsight I think white represented for me a clean slate, that I drew different colours of different moods on.
In most religions the clerics always wear white so they can react to any situation - physical, mental or spiritual - without a memory shaped by experiences of a life lived before entering the Monastery.
In India, those who want to join some religious orders have to spend ten years in white clothes as a novice.
It is expected that in those ten years they will experience and absorb the nature of a true monk and bounce away all negatives in their consciousness - learn how to give up the life lived in the senses.
Theoretically,only if they appreciate and accept what that life means, can they begin to wear saffron. Many leave because they are not able to live up to the stringent standards of that theory. Many don't leave because they make themselves believe they are. There is no equipment in the world that can measure reality.
It is on the neutrality of white that the enormity of a new life is imbibed.

Unfocused

My brain has been unfocused and oozy for the past few days, - no particular reason.
I did try to skip two days of my pain med, as I worry about its addictive nature. Those were two very painful days. The trouble is that the normal pain killers don't work anymore, even in combinations. I ended up staying mostly in bed both the days.

I read a P.D. James those two days.
I have just started on a Lionel Shriver. It is difficult to read two authors with such uncompromising personal writing styles one after the other.
This particular book of Shriver should be good - I love her writing - but so far seems to use very complicated language to convey a simple thought. Or may be my brain is all muddled.

I have a few ideas that I am trying to work through, but this is not the time. No energy, or at least very low energy.

There are some interesting threads running on the Bipolar Forum that I am a member of. Between them and the two Lupus Forums, I manage to communicate beyond the limits of my room.

Friends are a blessing, but I don't feel comfortable about initiating contact. They do their best to stay in touch. At our age everybody is mostly at the peak of their career and they need to work hard at staying there.

I miss my father. I need to see him, but I'll have to be prepared to face massive resistance before I can travel.

*A couple of hours out of the house, and I am diown with numbing pain, fever and brainfog.

A Thought

I thought today that I have become my own version of an optimist.

If one lamp won’t light, I’ll light another – or I’ll make my own lamp.

Something terrific will come no matter how dark the present.

Our Disappearing Hand Woven Textiles and Traditional Crafts

I need to concentrate on a new collection but I am not able to.

I have always been passionate about woven fabric and here we have such a magnificent tradition.

Our craftsmanship is also top notch.

But to run a business I have to compromise big time.

Mill made material is just not appealing to me, no matter how good the quality.

To me they have no life.

That thought ‘though is so absolutely wrong.

People make a living out of the production of these fabrics.

Even then.

I personally can never wear them.

And I can’t put my heart into using them.

Ideally I would only use hand spun and hand woven textile. Although we do have some production of hand spun yarn, it is too expensive to produce in commercial volumes. I know. I have tried. And lost money.

Hand woven fabric still has a market, but not if the quality is how I wish it to be. I want the traditional beauty where the weaver proudly pushed his limit. Again that kind of work is too expensive for most people who have the taste. Those who can pay for them won't, because there is not enough bling or the body conscious “sexy” silhouette that is the current attitude towards dressing.

How I hate that word! It is just so very demeaning. But that is the word that the moneyed look for in the choice of their clothes.

Not that we do not have garments that have that appeal. But in the trade, New York, London, Milan and Paris speak. That is the customer base, and I can’t blame the designers of this country for catering to them; after all they have to make a living.

The wonderful local crafts are also disappearing.

Now they are either commissioned or are produced for the mass market in compromised quality. Again at their best they are far too expensive to compete with the cheaper access to gaudy taste or imported aesthetics.

I Don't Remember a Time When I was Symptom Free ...

On one of the support groups that I am a part of, a friend - Belle, wanted to know what it feels like to NOT be in a flare i.e. an acute phase of Lupus.

This was my response:

For at least the last twenty-four years I don't remember not having been in a flare. I was correctly diagnosed finally in '99. But from a long time before that I remember symptoms and episodes that indicated Lupus.

From when I was eight, I had to use a topical steroid cream to control the lesions that would appear on my face. None of the doctors consulted connected the problem to the sun at that point.

In the middle seventies I used to be feverish every evening. Three times a week before going to attend Karate classes I'd need to take a Paracetamol. I seemed to have an attack of some ...itis or other all the time.

By the early eighties, I always ached all over and had low-grade fever all the time. While out in the sun I tanned 'beautifully' - never realising that it was all hyper pigmentation and not once connecting that it always appeared with the increase in fever, body ache, giddiness, a throbbing headache and fatigue.

I regret the fact that when I my daughter was an infant I didn't have the energy to play with her, take her to the park. There are many things that I wanted to do for her as a mother, but I never was able to.

Anyway, before the diagnosis I lived in agony for a couple of years. Since then, although the drugs are supposed to have kept the symptoms under control, I have never been symptom free.

Now of course I am in particularly unpleasant flare, and I have no idea when I will come out of it. But, I do not have soft tissue involvement yet (fingers crossed), so I am lucky.

Apart from when the bipolar plays up, my brain also seems to work fine. I do find that my memory is progressively worse, may be that is because I am not making enough effort. I have to deliberately try to register things, and am often muddle headed. It could be the drugs that I am on. I am not going to think that this may be the beginning of some kind of a CNS involvement. I will deal with it if and when it comes to that.

I don't sound optimistic at all, do I? But there ARE many reasons to be positive - friendships that survive in spite, opportunities that a regular life wouldn't have offered - because my body is dysfunctional, my sensory responses are more in focus – my subconscious more receptive than it has ever been.

The fact that I am able to mostly control what I wish do with time is no small blessing.

And because there are physical limitations, I have learnt to accept the limitations of my nature too and so I either deal with them or move on. I no longer think I always have to be on a conquering trip. I approach the rest of the world with the same attitude, so I have much less to complain about than ever.

Am I making any sense?

O Joy!

'spent a happy afternoon with a few favourite friends today. Nothing elaborate. Coffee and sandwiches. Then a film - formulae, but sweet. Oh, it all started with browsing at a bookshop - sooo tempting, but I have friends who have lined up a lot of reading for me, so I left with nothing. OK, regret. I am trying to be sensible.

The weather is pretty decent and the sun felt good, of course I had a few liters of sun-block slathered all over.

I must admit I wasn't looking forward to the outing, but once I was dressed and ready, I felt good. Now the skin on my face is sore and tight, and I have a bit of a headache, but so far all is otherwise well, and it was well worth it.

Experience is in Sharing

To the people who have been reading and responding to my blog on the various forums, instead of posting on each forum individually, I would like to thank you all for your appreciation.
I started my blog to communicate my thoughts to ... myself. It doesn't really matter how much people around me care or how good the relationship is, a very essential part of of me can no longer be shared or understood, and the gap in mental processing of the world's ways has become wide and basic. Those close to me try as hard as I do, but the equation just doesn't add up.
That is why my blog is about every aspect of life as it happens to me or I think about.
I write a blog rather than a diary because I can at least pretend that I am talking to a person. A diary would be a blind alley, but with a blog I can expect to reach out to others and connect in a language that is mutually understood. Even if nobody reads I can see my own thoughts, share them with myself. I find that what is subjective can become objective after only a short time, in fact even while writing.
I read an article by Shazia Mirza in The Guardian where she says that a blog is the ultimate in narcissism. Perhaps one day she will accept that nothing is absolute.
I never realised before how important it is to have someone to talk to even if the conversation never happens: it adds substance to an individual's being.
So to all those who have been reading, thank you.

I Want to Kick and Scream ...

If anybody reads this DO expect editorial errors.

Today I just want to kick and scream.

Before people tell me that I look well, I want them to at least ask me how I am. At six o’clock in the evening I am hanging around my room in my Pajamas not having slept at night, having done nothing all day except perhaps visit a doctor or get some blood tests or some other tests or juggling medications, and am absolutely exhausted and all I get is - you look good! Thanks.

I have been in the house for the last six months and seventeen days and I look good?

What am I suppose to say – Yes I am feeling better, I am great thanks, nothing wrong with me – when every muscle in my body hurts, my body temperature is around 38F all the time, I need to stay in with the conditioner set at 65 F, with one ice bag under my feet and a couple more to keep my hands and face cool, more often than not? I have ulcers in mouth, sore and dry eyes, and viral or fungal infections compete to enter my system. But never mind, everything is just fine, I look good!

Yes I have pink cheeks – it’s fever and the Lupus malar rash. Yes I am nicely rotund – try a mocktail of steroids, Sertraline, Sodium Valproate and beta-blockers – so will you be. The option of being fat and alive or thin and dead gets one's prorities sorted out for sure.

Sure my vocabulary has improved manifolds, I know the names of mental and physical health conditions I never thought existed before... if anybody with half a brain has to remember the names of their medications so as to constantly read up to monitor drug interactions, theirs would too.

I have to keep a count of all the pills I have to take everyday, plus two one day, minus one the next. Drugs overlap. Some mood stabilisers double as painkillers. I am anyway on a different one for the bipolar. Another painkiller that I need to take SOS, which is twice a day, has anti depressant properties, and I am already on an anti depressant. It is also notorious for insomnia yet makes me too drowsy to read or watch TV. or do anything where I need to use my eye. Beta Blocker would work as yet another depressant, so the choice is to put up with palpitations until the twicking of an anti depressant begins it’s work, when it does and IF. So check, check, check.

Please nobody suggest music, because any continuous sound drives me up the wall and hanging upside down from the ceiling. That is Lupus for you. In my past life I sang as a soloist in a choir!

Everyday I need to put all this on my frigging needle and knit it. And then I am told – c'mon, just have a painkiller and come along! Like I am some kind of a freak wanting to ruin the show! I am grateful that they appreciate my company, but it is so not about just the painkiller!

What about the deadly fatigue? What about the sun sensitivity? The fact one and a half hour round trip to the doctor means three days in bed? Do I really want to stay at home and not go to watch a film, or go to meet a friend, or catch a good crafts festival?

The other helpful suggestion is - why don’t I give up my work! Why do I take on the stress? So then what do I do? What? I have had to give up one project after the other, because with each, after a while, I got to realise I couldn’t physically cope any more. I was one of those idealists – the "want to change the world" – kind. I found underdogs everywhere, in every spectrum of society, and I wanted to look after everybody.

Huh!

I am particularly upset about the last issue because the person who said this I have known for years. We have known each other from much before I was diagnosed, through the times when I’d be sick always and nobody could tell what was up, and as bit by bit, sometimes more than a bit, my world began to shrink. Please think!

I cannot commit myself to any plans anymore because I have no idea how I may feel, so it is impossible to schedule anything. Even to visit doctors I often need to hold a pill, or double a pill or change the time, whatever. The work I do can be coordinated from the house, people I work with come to see me to take directions; so do clients when necessary. Right now this is what I want to do and can do, even if I am not making much money.

I need to have a life of my own to wake up to. I DO NOT WANT TO HAVE MY EXISTENCE VALIDATED BY SOMEONE ELSE'S.

If you want to help me then please ask me how. I am confused enough. Don't make me feel I am stupid.

I WANT TO KICK, SCREAM . . .

OR I WANT TO LOOK SICK!

Umm ... NO I DON'T!

I Want to Kick and Scream ...

Today I want to scream at and shake up and do all sorts of violent things to people.

Before they tell me that I look well, I want them to at least

Ask me how I really am. At six o’clock in the evening I am hanging around my room in my Pajamas not having slept at night, having done nothing all day except perhaps visit a doctor or get some blood tests or some other tests or juggling medications, and am absolutely exhausted and all I get is - you look good!

I have been in the house for the last six months and seventeen days and I look good?

What am I suppose to say – Yes I am feeling better, I am great thanks, nothing wrong with me – when every muscle in my body hurts, my body temperature is just below 100c  all the time, I need to stay in air conditioner set at 23c, and need ice bags more often than not? I have ulcers in mouth, sore and dry eyes, and viral or fungal infections compete to enter my system. But never mind, everything is just fine, I look good!

Yes I have pink cheeks – it’s fever and the Lupus malar rash. Yes I am nicely rotund – try a mocktail of steroids, Sertraline, Sodium Valproate and beta-blockers – so will you be. 

The option of being fat and alive than thin and dead is not much of an option.

Sure my vocabulary has improved manifolds, if anybody with half a brain had to remember the names of their medications so as to constantly read up to monitor drug interactions, theirs would too.

I have to keep a count of all the pills I have to take everyday, plus two, minus one. Drugs overlap. One painkiller doubles as a mood stabilizer. I am anyway on a different one for the bipolar. Another painkiller that I need to take SOS, which is twice a day, has anti depressant properties, and I am already on an anti depressant. It is also notorious for insomnia yet makes me too drowsy to read or watch TV. Or do anything where I need to use my eye. Beta Blocker would work as yet another depressant, so the choice is to put up with palpitations until the twicking of an anti depressant begins it’s work, when it does and IF.

Please nobody suggest music, because any continuous sound drives me up the wall and hanging upside down from the ceiling. That is Lupus for you. Once I sang before as a soloist in a choir!

Everyday I need to put all this on my frigging needle and knit it. And then I am told – just have a painkiller and come along! I am grateful that they appreciate my company, but it is so not about just the painkiller!

What about the deadly fatigue? What about the sun sensitivity? The fact that I take a one and a half hour round trip to the doctor and I need to be in bed to recover for the next three days? Do I really want to stay at home and not watch a film, or go to meet a friend, or catch a good crafts festival?

The other helpful suggestion is - why don’t I give up my work! And do what? I have had to give up one project after the other, because with each, after a while I got to realise I couldn’t physically cope any more. I was one of those idealists – the 'want to change the world' – kind. I found under-dogs everywhere, in every spectrum of society, and I wanted to look after everybody.

Huh!

I am particularly upset about the last issue because the person who said this I have known for years. We have known each other from much before I was diagnosed, through the times when I’d be sick always and nobody could tell what was up, and as bit by bit, sometimes more than a bit, my world began to shrink. I cannot commit myself to any plans anymore because I have no idea how I may feel, so it is impossible to schedule anything. Even to visit doctors I often need to hold a pill, or double a pill or change the time, whatever. I design. This can be coordinated from the house, people I work with come here, and clients also do when it is necessary. Right now this is what I want to do and can do, even if I am not making much money.

I need to have a life of my own to wake up to. 

I DO NOT WANT TO HAVE MY EXISTENCE VALIDATED BY SOMEONE ELSES.

I WANT TO KICK, SCREAM!

OR I WANT TO LOOK SICK!

A Lesson Expensively Learnt

Causes of Bipolar Disorder are all ‘may ’s, ‘often’s, ‘seem’s and ‘can’s.

As in:

Bipolar disorder may result from a chemical imbalance within the brain.

And:

Chemicals called neurotransmitters control the brain’s functions. When levels of this chemical are too high, mania may occur. When the levels drop below normal, a person may experience depression.

Also: 

Researchers believe that our behavior can affect our brain chemistry, and that brain chemistry can affect behavior. It may happen both ways.

Duh …

For instance, if a person experiences numerous stressors or traumas this may cause his or her brain chemistry to be affected, leading to clinical depression.

On the other hand, that same person may learn how to change depressed thoughts and behavior and cope with stressful events. Doing this mayalso change brain chemistry and relieve depression.

And then in addition to all the above:

There is a significant genetic component to bipolar disorder. If a family member has bipolar disorder, other family members may be at risk.

However, stress of some kind is often needed to trigger the onset of the disease. The cause of the disease is likely a combination of multiple genetic and environmental factors.

Sometimes a period of emotional stress, drug use, an illness, or another event seems to trigger the onset of the disease. Stresses can also trigger a manic or depressive episode in people who are known to have the condition.

In the light of all the afore mentioned:

I have Lupus, and many with Lupus also have Bipolar – something to do with the production of antibodies against the neurotransmitters. But I would have thought the levels of the neurotransmitters would then drop and so lead to Depression. So I am not very clear about how the Bipolar can be explained. It can of course be an independent diagnosis.

A few of my family members are diagnosed with Depression. They are on prescription drugs. Some others are borderline and given to occasional meltdowns. But as far as I know nobody is Bipolar.

Laying the blame completely on the genes I have inherited from the well-known eccentricities of my family is convenient. There are side splitting incidences of behaviour from my Paternal Grandfather’s and my Father’s generation. Just so it is clear that I don’t come from a gene pool of muddle headed goodness and cuddly teddy bears, there have been some mean people too. And Mean married to Mean is an equation nobody should have to deal with.

I would like to think that I am good at coping with ‘stressors’, 'triggers', in a bit of the old –“ We shall overcome ” – spirit.

Anyway, whatever the reason, I still need to swallow those tablets. And if I were asked to make a list of a ‘ few of my favourite things ‘, these would come at the very top. If I were to make a trip these would be the first to be packed. Everything else would follow after. Because only if my mind works will I have need for anything else.

Disease vs. Condition

This is how I interpret it. 

Please correct me if I am wrong. 

I am a professional patient not a doctor. 

A Disease can often be cured, but is in certain cases terminal.

On the other hand a Condition is chronic, often progressive. 

It is not curable, but can be kept under control or the progression slowed. Sometimes it goes into remission, to perhaps reappear. 

Loss of life generally occurs by complications, or as an effect, of the underlying cause (the Condition).

And suicide. 

For lupus it is the second highest life taker, and this I am guessing, for bipolar the highest.

So as far as I understand both Lupus and Bipolar are Conditions. 

Lupus is Autoimmune.  

Bipolar disorder is a neurotransmitter imbalance in the brain.

I have both.

Three cheers!

I am special.

Happy Birthday Gandhiji

Today is Mahatma Gandhi’s Birthday.

The World is celebrating.

http://www.guardian.co.uk/world/2009/oct/02/gandhi-montblanc-pen-birthday

Thought I Would Write About Bipolar Disorder

Bipolar is the sophisticated term for an ugly condition. Manic-Depression is how it is understood, and I have it.

This one is complex to write about. This one seems to catch people off guard and bring out the worst in them. It tickles them. They become dismissive. They will never again take the person who has it, and lives with it, seriously. There is sympathy for physical illnesses, but not for anything that remotely touches mental health.

I remember a particular day when I was waiting in the lounge for my turn see the Psychiatrist. He is a consultant at a private hospital and many patients waiting to see various specialists use the same lounge. Along with me there were four or five other patients waiting to see the same Psychiatrist.

For some reason he came out of his consulting room with one of his patients.

Just then two ladies - doctors - passed by. They waved at him, and before I could register what was happening, asked him something that amounted to, “so there you are with your lunatics!"

I was left so shocked and bemused that I have no idea how my doctor, the psychiatrist reacted.

I am done with being sad, feeling sorry for myself, but what havoc this attitude causes to the minds of the other psychiatric patients and their relatives, I will never know.

I should have protested then, but I myself was going through the lows, so before my slow brain could internalise their incredibly insensitive stupidity, they were gone.

I remember a young man in a wheelchair in the total depths of depression that day. His face was completely devoid of any expression, and he looked squeaky clean, so clean that one could clearly see the minds and hands of devoted carers. He was simply frozen.

I wonder how the relatives who accompanied him would have felt. He seemed related or a close friend to a lady who worked at the hospital – a young girl who sat at the reception in the same hospital. She was there with him.

And these women were Doctors!

I don’t know if my psychiatrist remembers the incident or who those doctors were. If he does I am sure he’d never tell me. 

*Much later I asked him if he remembers and yes he did. By then however I did not care enough to get their named. They were not ladies. They were not worthy of any space in my consciousness, but unfortunately to date, they occupy some space like a canker sore.

I would like them to know that they are beyond humanity, and that they don’t have any right to be in a caring profession. Or to be a mother, a sister, a wife or a friend, and I hope this brilliant doctor who I have known for close to fifteen years now, does not contaminate himself with their company. 

So many years later, even now when I remember that incident, I feel impure. For as long as I don't forget their inhumanity in the presence of that severely ill young man, I will continue to feel that way.

To transcend their memory is a challenge that I may have to face for a very long time.