[Isis]

Hi, this was something I wrote a few days ago, but today again I had reason to want to repeat the same feeling. Since apart from Waves, nobody has read this, I thought I would post here.

There will be a lot of editing 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 seven months and one day, 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 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. My eyes and face are swollen from the pain and fever. But everything is just fine, I look good!

I am anxious, worried and depressed because I don't know when this pain will go away. If I don't take the painkiller that is halfway effective because it works on the same channels as a narcotic does, and is hell to come off, then the pain kills every initiative and any future (that day's) plans.

I get up in the morning planning how to organise my pain meds according to what I need to to that day. Doctors and or tests? - Drug A+B and then Drug B+C x 3. Visitors? - Drug B+C X 4, still too painful to get out of the room to have a meal with everybody. At home? - Drug B X 4 + Drug C X 3.
Really bad day regardless of whatever I am supposed to do?
Well, I have to cancel everything, stay in bed and try to read or watch TV.

Slightest disharmony anywhere that has nothing to do with me or concern me in anyway has me palpitating, breaking out in a sweat, and being nauseous. But hey, 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 priorities sorted out for sure.
I have put on more than 50% of my initial weight since my DX ten and a half years ago, yet I have to not only continue with those medications in the foreseeable future, but be prepared to be prescribed new ones with further weight gaining possibilities

Yes 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 diagnosis (plural) and 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? What about the complete apathy? 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, mentally or emotionally 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. At least 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. At least there is some sense of purpose.

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!

[Dmom3005]

I am so glad you wrote this. Continue writing this when you feel the need.

I can totally understand this. I have fibromyalgia. And I take lots of medication for different things.

Fibromyalgia, diabetes, asthma, and some other things that I deal with.

Donna

[Pamster]

I'm sorry you're suffering so much Isis, I hope that you're able to get a little better soon. I know it's of little comfort, but I read this and I'm here and listening....

GLad you found the board, it's a great place to come for support.

[Mari]

Dear Isis,

I read the post on the blog about fabrics. I appreciate good fabrics but can't buy them in the stores and I suppose even if I could find them I would not be able to afford them. That's why I liked reading.

I hear you about weight gain. That is disheartening -- to deal with wishing we could feel better about our bodies.

Do you get enough sleep? Restful sleep?



M.
PS
I am having difficulty concentrating mixed with brain fog and depression so my writing might be a bit off.

[bizi]

That is the trouble with blogging....you dont really gtet feedback like you do when you join a forum....but I am glad that you like writing in your blog.
I hear your utter frustrations and sympathise with you.
I wish it was easier fo ryou and that people were more understanding. A lot of people don't get it.
Glad that you posted this here.
You fit right in.
((((((HUGS))))))
bizi

[Hockey]

I hear you Isis.

I have a spinal cord injury and a massive brain boo boo - and people still tell me how great I look or seem. My favourite one is when folks minimize my difficulties by telling me that they forget stuff too. I feel like screaming, "Yeah, but not all the time and you know you did it!" But I don't scream...

For the most part, I don't think there is malice in what people say to me. Firstly, I think they say it because they don't know what else to say. Secondly, I think they say "you look good" because they don't want to speak truths they fear might add to my misery.

Frankly, I don't think I can expect "norms" to do much better. That's why NT is such a sanctuary for me. I can come here and everybody, even if they don't suffer from the same condition, understands what you're talking about. Coming here reassures me and gives me the strength to go out and face a world that can seems ignorant and uncaring.

[Isis]

Hi Mari, thanks for reading the blog. You are right; hand woven fabrics are hard to come by and difficult to maintain. Its a pity that more user friendly fashions in hand loom fabric are not available easily.
I live in India, here it is still easy to find and maintain (help and laundry services are more reasonable).
I fell in love with weaves when I started traveling around the country to study the various weaving techniques. That is when I began to design and produce garments. I do a range of easy to maintain pieces in hand woven silks and cottons that can be hand washed, rinsed, shaken out and then put on the hanger to dry. They are easy to travel with and are popular among those who need to look glamarous on their trips without having to bother about laundering and ironing. I came across the idea once when I was travelling. That range is now the backbone of my personal wardrobe and for me does the best commercially.

Hockey, today I hung my wire hair band on a hanger in my wardrobe. I have stopped analising these 'episodes', because every 'normy' thinks they have a better story to tell. Now I go the otherway round, as in - "Really? You did that? Are you sure you shouldn't get a Neuro to check you out - could be the beginning of Dementia you know. I must get you some crossword puzzles or Sudoku to keep your mind ticking" - I then enjoy the ensuing reaction. Try it.

[Dmom3005]

You know I am of the opinion that more people than admit have TBI's or
PCS. So when people say they forget things too. I'm always tempted to ask when they had there TBI or PCS experience.

Donna

[Isis]

Donna, forgive my ignorance, but what is TBI or PCS?

[Hockey]

Hey Isis,

NT is the land of acronyms. I had to learn what RSD and several other things stood for. Frankly, I'm not even sure what that "lol" people put at the end of sentences means. Anyway...
TBI = Traumatic Brain Injury
PCS = Post Concussion Syndrome