Memory

[lizw]

The last few days my arms have been sore in the morning and at night. During the day they are not too bad. I assume they are getting like this because it is cold - it's winter here. I have MS and fibro.

I wonder if anyone else 'forgets' how bad it is?

It's like my memory can't retian the idea that when I get sore, or having a flare, it hurts like hell!

Since I have been diagnosed with both these illnesses my lack of memory regarding how it feels, continues to surprise me!

It sort of reminds me of drinking, in the sense that I'd get up in the morning and think, 'I'm never doing that again! That was awful.' And then, come evening, the memory of what happened the night before has vanished, so I'd start drinking again.

Not that I am making myself ill, but it is just weird.

[Alera]

I also "forget" how bad it hurts. For me, its more wishful thinking than forgetting. If I don't remember how bad it hurts, I think I can live a normal life again.

[lizw]

It's a bit like child birth too. I can remember how much that friggin hurt ONLY because I remember saying to myself, NEVER FORGET HOW MUCH IT HURTS!

I did send you an email to your email address a few weeks back Alera, did you get?

[Sugah]

I can relate to that, liz. Can you relate to forgetting that "this too shall pass" -- ? A few days or a week into a flare, I forget that it will get better. It's very easy to fall into a state of fear and 'awfulize' that it's always going to feel this badly.

I don't know what it's like to have MS. If you're comfortable talking about it, would you mind describing the pain? I have RSD in both my legs that comes from the nerves misfiring in my lower spinal cord. Is it like nerve pain?

Peace & Love,
Sugah

[lizw]

Nah, I don't mind describing it.

I think the pain I am experincing at the moment is from fibro and that maybe because the weather (being so cold) has brought it on. It feels like I have over-used the muscles in my arms (biceps) so they ache. It like a deep aching sensation.

The pain I expereince with MS is more like a burning sensation where it feels like my arm/s is on fire from the inside out. The other thing I get from MS is muslce rigidty (I think that's how you spell it). Sometimes the muscle in my right arm just goes seriously stiff and/or contracts on it's own, making it uncomfortable to bend my arm and there is nothing I can do about it, except to wait till it passes.

I also get this other pain in my forearms that the doctors can't pinpoint to anything, except that it also seems to be accompanied by bouts of 'writers cramp'. I think it is from the MS only because MS syptoms can be so weird.

I could go on forever about all my MS symptoms, and all the meds I take are to combat this, but there is no cure for MS, yet. Or fibro, as far as I know. I am hoping they will give me another MRI one day soon to see if it has changed etc... I was diagnosed with relapsing/remitting, which means I am suppose to have lapses then get better, but this year it feels like I have continued to get worse and worse - think gentle down hill slope, rather than straight down though.

I have an appointment to see the shrink they orginally sent me to see, when I was first diagnosed. I haven't seen him for 6 months so I think I will ask him to request it. All hospital care here is free, unlike in the US. Our biggest complaint is we just have to wait forever to receive it! So if I ask to get rescanned now, I may get it within a year.

[Sugah]

I can relate to the burning. That's constant, whether I'm in a flare or not - and amazingly, I can block out a good deal of it, although if I attempt to "connect" with my body, it comes back roaring back like wildfire (pardon the pun!). I have a friend at school who has MS, and now that you speak of the muscle rigidity, I can see when she's suffering from it. She would talk about school, kids, politics, even, but she was very closed when it came to discussing her health, so I never pressed.

What happens with emergency health care?

Peace & Love,
Sugah
(diverting yet another thread)

[lizw]

Our emergency hospital rooms go through phases of being under staffed etc... Here we also have what are called 'Community Service Cards', mostly families on a low income/welfare have them and each card has a diff number so they can look you up on the computer. It's all a bit big brotherish.

In recent years (maybe over the last 2) they have put up large signs in the emergency departments which say if you are not a NZer you are NOT entitled to free health care, so maybe they had a lot of people trying to get free health care while traveling or something.

Sometimes you can wait hours in the emergency departments and in the city/town I live in they merged the afterhours doctors with the emergency department at the hospital because of lack of doctors. NZ has a real problem keeping doctors too. Usually our doctors go off overseas to work rather than stay here.

At my appointment yesterday, the shrink said he is going to refer me back to nurology so I can see a shrink/nuro doctor who can do test on me for memory and cognitive (pick the bad speller) abilities. Part of me hates to think about it as it is weird to think I am losing those kind of things. But today I got money out of an ATM, then went to buy something (5 mins later) and could not find it!! Trying to remember what I did with it just wasn't working as it feels like parts of my mind don't work properly anymore. It's only been in the past 3 or so weeks that it's been like this, so it may just pass. Fingers crossed.

[Alera]

Crossing my fingers for you Liz. I do know that MS can cause cognitive issues. When I was at my worst, I would put my driving license, grocery store cards and college ID card around my neck so I wouldn't lose them! You aren't alone.

[jazpoppy]

Liz;

Hope you are doing better. Sorry I've not been around to PM or email you much, my son has been taking over the computer again this week (he's visiting this week, then going back to his dad's for another week, so I'll have more time next week to chit-chat). But I did want to reply to this message for you. I have Fibro, and I found out recently that once my Medicaid (insurance in the United States for people that cannot afford to purchase insurance or don't have a job that offers insurance, there are other qualifications you need to pass to get it as well), anyways, once I get medicaid I will be tested for MS. I have severe muscle cramps and my leg and arm muscles go rigid, I drop things a lot, I can't walk very well anymore, and I have muscle spasms in the night that wake me up. Plus, speaking of memory loss, I am having a VERY hard time remebering things, including how much pain I will be in if I do certain things. I may wake up in pain, then it gets better, so I "forget about it" and start doing way too much, then at night the pain comes back and I get so angry! I get mad at myself for forgetting how bad I will feel if I do too much!!! I also forget where I put things like my car keys, my hair elastics, my pocketbook (purse), my wallet (which really panics me!!!), and other things besides just forgetting how much pain I'm going to have if I go for a 30 min walk, then do all the dishes, clean the floors, etc... I usually start hurting around the end of my chores, if I'm lucky (doesn't feel like luck really, but for my body to rest it is) I'll get too much pain in my legs and back to even finish my walk. I really hope you feel better soon. I know that cold and damp weather really does effect most types of pain. I at least know that it does affect Fibro pain, and arthritis pain! Please write me and let me know how things are going! I wish you good luck and good health!

Love

Jaz

[Sugah]

"Fibro Fog" - google it.

Peace & Love,
Sugah

[DesertEyes]

Hey there Liz, keeping fingers crossed for ya

Just had a talk with my g/f the other day about that exact subject. One of my symptoms is progressive short term memory loss. Mine are like micro-blackouts. My g/f says I'm totally coherent and sensible, but I just have these little gaps of a minute or so that I totally don't remember. Even if she reminds me I still don't remember.

The way I see it, that's a _good_ thing. The sicker I get the less I'm going to remember, until eventually I won't remember that I'm sick and I'll be right back at feeling totally healthy

* lol *

Mike

[lizw]

Originally Posted by DesertEyes

The way I see it, that's a _good_ thing. The sicker I get the less I'm going to remember, until eventually I won't remember that I'm sick and I'll be right back at feeling totally healthy

Great minds think a like. I was thinking today how I could turn into this person who just smiles all the time and talks about how great life is, because I will be encapable of doing anything else besides living in the moment. I could be like a fish with a 5 second memory.

I googled Fibro Fog too, thanks Jody. Since I was diagnosed the docs and myself have always struggled to pin piont what causes what, because MS and Fibro can present with similar symptoms, then depending on what it is, depends on how they treat it or if they can treat it.

I completed my 5th step with my sponsor today and one of my 'fears' since I was diagnosed is that I have progressive MS, which means I will just get worse and worse, untill I am pretty much fully disabled. The docs have told me I probably have relapsing, remitting but being a pessimist, and because I have never returned to 'normal' and I keep getting new symptoms, the idea that I do have progressive MS lurks in the corners of my mind....

However if I do have or my MS does develop into progressive MS, there is nothing I can do about it. I can't stop it, slow it down or change it in anyway, all I can do is try and have control over my attitude about it all. It sounds silly to have to say, God if it is your will I have progressive MS then, so be it. It doesn't seem right. Part of my mind is still, so what happen to the plan Liz? Obviously my plan in soberity didn't include getting/being sick. I have just been reminded though that gods work puts mans dreams to shame, so (as my sponsor reminded me today) it's faith. God didn't drag me out of the ocean, to beat me up on the beach....

I meant to ring my GP today so my referal gets 'doubled/made quicker' but (and I'm serious) I forgot....as long as I can laugh, I'm doing okay.

[Alera]

I completed my 5th step with my sponsor today and one of my 'fears' since I was diagnosed is that I have progressive MS, which means I will just get worse and worse, untill I am pretty much fully disabled. The docs have told me I probably have relapsing, remitting but being a pessimist, and because I have never returned to 'normal' and I keep getting new symptoms, the idea that I do have progressive MS lurks in the corners of my mind....

However if I do have or my MS does develop into progressive MS, there is nothing I can do about it. I can't stop it, slow it down or change it in anyway, all I can do is try and have control over my attitude about it all. It sounds silly to have to say, God if it is your will I have progressive MS then, so be it. It doesn't seem right. Part of my mind is still, so what happen to the plan Liz? Obviously my plan in soberity didn't include getting/being sick. I have just been reminded though that gods work puts mans dreams to shame, so (as my sponsor reminded me today) it's faith. God didn't drag me out of the ocean, to beat me up on the beach....

With MS it is so easy to get caught up in the "what-ifs". What if I end up with progressive? What if I end up in wheelchair? I've been there.

I also have been in a wheelchair. I learned what made my MS so bad (heat, overdoing things, even sitting a certain way) and I now walk again. I just have to spend a lot of time avoiding what set me off. I had a total adjustment in my life (even changed my major at college because my old major was working me to the bone in the lab). After all this, I waited the flare out.

Outside of learning how to control some symptoms, I have never "gone back to normal" but was told that isn't a sign for me of having progressive MS. I was told many people with RR don't go back to "normal" after a flare. They simply go to a place symptomatology wise between where they were before they had the flare and after the flare...a middle ground.

That is my ESH.

[lizw]

Thanks Alera,

You've reminded me of why I came on here, it's nice to read another persons ESH, rather than listening to my head.

I wonder if it is possible to ever accept one has MS. I go through phases, usually when I am doing okay, when I think, despite my MS the last 18 months have contained some of the happiest moments of my soberity. Then at other times I think FFF.

Usually when I am thinking FFF, it's cause I think my life should be different to how it is.

I'm reading this book at the moment that had a bit about how (in the old days and according to the bible) God, at times, gave people illness or disablities so they had no choice but to lean on him.

As an alcoholic, I am quite use to running my own life (i.e. arranging the show) which for me also means, controling situations. I have a raft of tools that I tend to employ, none of which I can use anymore so instead I tend to have a little bit of a spaz rather than use my magical controling powers, when I feel down, and then I get reminded god's got me in hand.

Thanks for your ESH about this stuff, it really helps me.

[DesertEyes]

Originally Posted by lizw

....I completed my 5th step with my sponsor today and one of my 'fears' ...

Congratulations on finishing the fifth, that is _awesome_.

I don't know anything about MS, but I have done plenty of the "what ifs". For me it's the fastest way to get bummed out and feeling way worse. There's all kinds of "what ifs" with my disease, all of them bad. I can't change my sick body, but I can change the "what ifs".

According to the docs, I have 100% chance of not being alive. They have no clue why I survived seven stays in the ICU over the last three years. So my head starts "what if-ing" if I die tomorow, or heck, what if I die today. Well.... I have _not_ died today for a little over 3 years now, so I decided I'm going to "what if I do _not_ die today?"

I got me a little condo with a 30 year mortgage. 30 years I _know_ i'm not going to make, so that joke is on the bank who's gonna get stuck with the loan. The point is I am assuming i'm going to live, so I might as well enjoy it. I got me a job. Ok, a real simple desk job cuz that's all I can handle. I'm dating a wonderful young lady. Traveling around when I can save up a little.

Someday I will die. With my track record some day I will be back in the ICU. But that "some day" is _not_ this day. Today I am assuming that my life is wonderful, that I have tons of friends in recovery, and that I'm going to live a long and happy life with this awesome girl friend.

Not to say I don't have my down days. Thanx to this wonderful program of recovery I have down days in an otherwise wonderful life, and not the other way around.

Mike

[lizw]

Thanks Mike for your ESH.

When I was first diagnosed, I had a raft of other things happen in succession which also included my relationship ending, having to sell my house, closing down my business I had started, moving house..etc...

I have never been able to get my business up and running again, as I don't have the energy but I do get work in that feild from time to time, however I think over the last few months I've noticed I spend far too much time on my own, with my head. Right now I've a sponsee who is in the midst of leaving her AH, so that is a called distraction and gets me out of myself.

And I have also sort of gotten into a habit of 'waiting'. I assume this is because I had to wait for an accurate diagnoses, wait to sell my house, wait till I found permanent home etc... Where we are living now (we've been here since April) we can stay here forever.

So you could probably say I am still reconstructing my life, with gods help, since it all went BOOM in Dec 2006.

I've been applying for part time work over the last few weeks too, even though I already have a part job where I can work from home which is in sales, but I am a bit over the up and down of the income - when it's good it's great money, when it's bad it's terrible money - but as I said I think I spend far too much time on my own.

So going to work in an 'work place' will be an interesting expereince for me too, because apart from working in our GSO, I have never really worked in a job with other people. And at GSO, the guy was another alcoholic who'd been sober, maybe 5 years longer than me, so we spent a bit of time talking about recovery.

I was a nanny for a long time (in recovery, drinking I did nothing I would use to showcase myself to potential employers) and with nanying it was just me and the kids. I have a tendency to want to do things on my own and under my own steam. I've had 2 businesses that I have managed/run/worked in since I got sober. I also stopped going to school regulary when I was 14.

Yesterday when I came home after doing my 5th with my sponsor I was thinking about that story in the BB (freedom from bondage, I think it is called) when the lady talks about how she used her resentment towards her mother, as an excuse not to do things. I.e. It was her mothers fault she never got educated etc... I was probably thinking about it because my sponsor talked to me a lot about how for alcoholics failure feels normal, it's success we have the problems with.

So, dunno where all that came from (lol) but thanks again for your ESH Mike, it's great on here.

Liz

[DesertEyes]

Heya Liz

Originally Posted by lizw

.... When I was first diagnosed, I had a raft of other things happen in succession which also included my relationship ending, having to sell my house, closing down my business I had started, moving house..etc.......

Wow, I had much the same, but in the reverse order. My business went bust, my wife started seeing other married guys, had my first heart attack, had to sell the house for the divorce, and moved outta town for work.

So I totally understand when you say you are reconstructing your life. You've got amazing strength there, to have overcome all of that happening at once.

Originally Posted by lizw

.... I was probably thinking about it because my sponsor talked to me a lot about how for alcoholics failure feels normal, it's success we have the problems with.....

Sounds to me like your piling up a lot of successes in your recovery. Congratulations again.

And as for working, I love it. Gets me out of my head, which is not a healthy place for me to be in

Mike