PDA

View Full Version : What to do...



giggle
04-04-2011, 03:33 PM
Its been a while since I logged in... life got busy.

I am so over having lupus. Life is literally too hard, with zero understanding. No one gets how hard it is for me to get out of bed in the morning, let alone live a 'normal' life. I act normal and I do everything normal people do. No one can see what life is like from the outside. I am so, so tired. I feel like I am 80 and exhausted from a lifetime. But Im 29 and I want to die. I just want it all to be over and I am not bothered if only death will end it.

People take everything for granted. Like the ability to swallow. Like feeling conscious. Like being able to grasp an object. Or being able to walk without running into objects you felt asthough you were trying hard to avoid. Or not having pain in every joint in their body... they take that all for granted.

I stopped going to my rhuematologist, he kept telling me I am lucky my lupus isnt worse. Lucky? If he had lupus, if he knew how hard it is for me to get up in the morning... then get myself ready for work, get my daughter ready for school, take her to school then rush off to work, work all day, pick the daughter up, come home and get her ready for bed and make dinner and clean up.... god... I dont even know how I keep going, I just do. I have burn scars all over me from muscle weakness or dizziness and just putting my hand in the cooking food (misjudge distance while putting in some ingredient) or brushing past a hot baking tray etc. Bruises all over my legs and arms from walking into tables, walls, doors.

Anyway... my point is... I went off my plaquenil. It doesnt do enough... granted I feel worse without it... but it doesnt make my life even anywhere near normal.
And in a sick way, Im hoping that there is a possibility I have fatal symptoms. I feel bad for saying this... because I have a 6yo daughter. And I dont want to leave her. But I cant imagine getting through today, let alone making it to her 16th birthday. My life has been stolen by lupus and I have no fight left in me.

If there was a medication that could make me feel near normal, i would be over the moon. Im not getting my hopes up though.

ritzbit
04-04-2011, 03:40 PM
I'm so sorry that you are feeling so down and sick. I'm only 18 so I can't imagine what its like to juggle a job and being a mother along with this disease. I too have felt like my medicine was not doing enough and I went off of them and I only got sicker. Its not the answer. Talk to your doctor, or get a new one, and find a new medicine that works. There is a new medicine out right now maybe you could try that. Don't give up though, your little girl needs you, even if its not you at your best. I hope you can pull out of this hard time. Hugs

magistramarla
04-04-2011, 04:13 PM
Giggle,
I'm sorry that you are feeling so bad, but you really, really need to keep trying. If your doc isn't helpful, find another one - preferably associated with a teaching hospital, since they seem to be a bit more "with it". Don't stop taking Plaquenil. It can take months to "take effect", but it has helped so many of us. It is that important "first-line drug" for many AI diseases.
You need to talk with the doc about adding in another drug that might work for you. For me, it's Methotrexate. For others, it's prednisone, or some other drug that helps with the inflammation. Many folks here use anti-depressants, and that is something else that you should discuss with your doc.
Don't give up! I'm sure that others, such as Mari, who still have kids at home, will be along to tell you more about how they cope. That little girl needs you - now, when she's 16, the day she gets married, and (especially) the day she has her own child. I know - I have four adult daughters (and a son who never calls!).
Hang in there, and keep coming here to vent and update us.
Hugs,
Marla

rob
04-04-2011, 06:05 PM
Hi Giggle,

I too am sorry to hear that things have been so bad for you. Have you looked into the new Lupus drug Benlysta? The FDA recently approved it for treating Lupus, and it's the first new Lupus specific drug to come along in 56 years. Ask your Dr./Rheumo if they think you could benefit from it. If they won't help you, get a second opinion and try to find a new Rheumo that's more willing to do whatever it takes to help you.

I understand much of your pain, both physical and mental, and there was a time when I just wanted to give up and die too. I almost did when I decided to OD on booze and sedatives, and when that wasn't working fast enough, I got in my car and turned into the path of the first big truck that came along. I woke up in the hospital a couple of days later. I survived, but just barely. It took me the better part of a year to recover from all I had done.

But then, things turned around for me, and my life became enjoyable again depite the fact the I have both SLE and MS. My Plaq and Prednisone kicked in and I got most of my symptoms reduced to a manageable level. I still have bad days, and bad flares, but I also have some really good days too. I would have missed out on so much had I died that day.

Please don't give up. I know it seems impossible right now, but things can get better.

Rob

Saysusie
04-04-2011, 06:42 PM
Hi Giggle;
First, let me say to you that YOU ARE NOT ALONE & WE DO UNDERSTAND! There are so many of us here who, at some point or another, wanted to just give up. Somehow, we convinced ourselves that our lives would never be any better than it was at that moment and that nothing was helping us and no one understood. But, as some of our members have mentioned, giving up is never the answer. Since we do not know what our purpose here is, we have to live by faith and believe that we do have a purpose.
You are a very important, valuable, and much loved person. Your children love you and you were given the gift of their lives for you to care for and nurture. They were given the gift of YOU to be their guiding light, their hope for their future and to give you their unconditional love. There is so much more to you than the limitations of your physical body. There is the goodness in your heart and the greatness of your spirit that is so needed by your children and others who love you. What you have lost physically can never diminish what you are spiritually. And it is who we are, in our hearts and our minds, that matters so much to the world.
Now, let's talk about your medications. As others here have suggested, there are many types of medications that you can suggest to your doctors. Most of us are on a combination of several medications which have helped us to manage our disease and live a reasonably healthy life. You must NEVER give up on your medications. It is true that some medications need weeks to months before you see any real improvement. Plaquenil is one such medication. You must be patient with this drug and allow it time to work. Once it begins to work, most find that it is extremely helpful.
Often, if the Plaquenil is not having enough effect on your symptoms, other drugs are prescribed to be taken with it (as Tgal mentioned). Some of these drugs are Prednisone, Methotrexate, Cytoxin, Imuran, etc. What I am saying is that there are many, many treatments available and, once you and your doctor find the right combination for you, they can improve your quality of life to a great extent!
You are quite young and have so many burdens to bear. However, there is always hope and always help. We are all here to help you. We all want to help you. We all know that things can be better for you and we want to help your find your way to a place where you do not feel so alone, where you are able to find some joy, and you are able to manage your disease! Please let us do that because there is so much that you can do!
Please make your doctor's aware of how you are feeling, talk to them about the other medications that we've mentioned, and please, please start taking your medications. They truly can help, you just have to give some of them more time than others.
Remember, we are here for you, day or night, whenever you need us! I am keeping you in my prayers!

Peace and Blessings
Namaste
Saysusie

tgal
04-04-2011, 07:06 PM
Its been a while since I logged in... life got busy.

I am so over having lupus. Life is literally too hard, with zero understanding. No one gets how hard it is for me to get out of bed in the morning, let alone live a 'normal' life. I act normal and I do everything normal people do. No one can see what life is like from the outside. I am so, so tired. I feel like I am 80 and exhausted from a lifetime. But Im 29 and I want to die. I just want it all to be over and I am not bothered if only death will end it.

People take everything for granted. Like the ability to swallow. Like feeling conscious. Like being able to grasp an object. Or being able to walk without running into objects you felt asthough you were trying hard to avoid. Or not having pain in every joint in their body... they take that all for granted.

I stopped going to my rhuematologist, he kept telling me I am lucky my lupus isnt worse. Lucky? If he had lupus, if he knew how hard it is for me to get up in the morning... then get myself ready for work, get my daughter ready for school, take her to school then rush off to work, work all day, pick the daughter up, come home and get her ready for bed and make dinner and clean up.... god... I dont even know how I keep going, I just do. I have burn scars all over me from muscle weakness or dizziness and just putting my hand in the cooking food (misjudge distance while putting in some ingredient) or brushing past a hot baking tray etc. Bruises all over my legs and arms from walking into tables, walls, doors.

Anyway... my point is... I went off my plaquenil. It doesnt do enough... granted I feel worse without it... but it doesnt make my life even anywhere near normal.
And in a sick way, Im hoping that there is a possibility I have fatal symptoms. I feel bad for saying this... because I have a 6yo daughter. And I dont want to leave her. But I cant imagine getting through today, let alone making it to her 16th birthday. My life has been stolen by lupus and I have no fight left in me.

If there was a medication that could make me feel near normal, i would be over the moon. Im not getting my hopes up though.

Hi Giggle. I am Mari. Like you I have a child and I am single parent so everything falls on me. Correct me of I am wrong but I don't think you would want to die if you didn't feel bad. You just can't do it all anymore, is that correct? If that is correct then I have a couple of things to say to you. You are right, living with Lupus and trying to do everything like people that are not ill is too much. It will wear you out physically and emotionally. It sounds like you are there now. I know you are not going to like this but I think you need to get to a doctor so you can figure out how to get out of this depression. It isn't your fault, Lupus messes with our brain and causes depression in many of us. Once you get that under control you need to figure out how to make a new "normal" in your life.

I can't do all the things I did before. I wouldn't quit work because I was the only income so I let things go too far and my heath made the decision for me. At that time I think part of me thought about not being here. I thought about my daughter and sometimes that was the ONLY thing that kept me going. Thankfully that was enough because now things have turned around. Yes, I am still sick but I have figured out what is important and what isn't. I have learned to say "no". No, I can't do that today. No,I can't go there tonight. No, I am not getting off the couch this weekend. You will be amazed at how much "no" helps you feel better.

I became so frustrated at one point that I too came off the plaquenil. It helped a little but no one was understanding how sick I was because I looked so "normal". Somewhere inside I wanted to make people see what I felt. That didn't work. I just became sicker and still they didn't understand. It was at this moment I believe that I finally accepted that many people won't understand and I don't need them to. This is when my "no" came in. I promise if you can learn to say "no" a bit more and get back on the meds, life does get better. It gets to a place where you not only don't want to die but where you enjoy living again.. All of this only happens if you don't give up now.

For your daughter and for yourself don't give up. You are here and you have found a place where people understand what you are going through. We have been where you are and we made it to the other side. There is nothing that you can say here that someone hasn't gone through. We can/will be your support system if you let us.

I am going to add you to my friends list and please feel free to send me an email at any time. I can't promise that you will get well but I can promise it gets better...but only if you hang on

giggle
04-05-2011, 02:01 AM
Thank you for such fast replies. :)

the biggest problem is that I have to work to bring in money to live... but working long term is near impossible. Even if I personally can accept my limitations, others can not and will not... my boss for example. I cant not work... I need money to live. But I fear my boss will fire me soon... and why shouldnt he, he has a business to run. I live in Mackay, Australia... there is very little here and certainly no rheumatologists... I had to travel to Brisbane but it was too expensive, not that he listened to me anyway. I cant switch GPs... very few actually listen to your concerns anyway. I have been worried about some seemingly neurological issues for a while now and they have started getting worse... I fear they wont be looked into until I am flip flopping about on the carpet.

I have had an SLE diagnosis for 6 years now... after having a hard life as a child and missing out on my 20's... i feel like I have had no life at all.

I mean as I type this I am struggling to keep my eyes open... today I forgot my name when trying to make a doctors appointment. Sometimes I forget where I am and what I am doing. It feels like something clicks in my brain then I have to try really hard to walk myself what I could possibly have been doing.
I have had restless legs for as long as I can remember... but I now have the sensation through ALL of my body. My fingers have starting moving of their own accord... I mean, what is that!! I get this thing where my whole body feels like it is shaking. It almost hurts. I regularly feel like I am going to lose consciousness completely, I have like mini episodes where I switch off. I dont know what any of this is and there is no one to tell me or reassure me.

Im going to look into different meds, thank you for the suggestions :) Maybe you guys can help me understand what these things are that are happening to me. I feel like when I voice my concerns the doctor just smirks and ignores them, like my condition is all just a joke anyway.

I have a wonderful supportive partner who really doesnt want to know about it and gets upset when he has to do things. I dont know how long i will keep him if i cant get my lupus under control. :(

steve.b
04-05-2011, 04:38 AM
i also live in australia.
if work is impossible, go on the disability pension.
i had to.

there is many benifits, available.

i have spent 30 years with my illness, only been diagnosed for the past 2, and they were spent on the pension.
i worked in many jobs, my last few were as a fitter in the outback mines, and as a truck driver.
it got too hard to work, and i got sicker, so i had to stop.

once the pace slowed down, and the stress slowed, my medication worked better.
i now enjoy life, at this new pace.
i love my wife and children, and things are slowly improving.

you need your meds, and go to another gp.
if you need to go to another, and another, untill you are understood.
as a few people here have pointed out.............
YOU PAY THEM... THEY WORK FOR YOU.

dont feel angry, or sorry for yourself.
feel determined...................
determined to get the right kind of help.

if it means taking anti-depressants, then do it
if it means taking plaquinel, then do it
if it means going on th epension, then do it

your daughter needs a mother.
be her mother.

tgal
04-05-2011, 08:34 AM
Thank you for such fast replies. :)

the biggest problem is that I have to work to bring in money to live... but working long term is near impossible. Even if I personally can accept my limitations, others can not and will not... my boss for example. I cant not work... I need money to live. But I fear my boss will fire me soon... and why shouldnt he, he has a business to run. I live in Mackay, Australia... there is very little here and certainly no rheumatologists... I had to travel to Brisbane but it was too expensive, not that he listened to me anyway. I cant switch GPs... very few actually listen to your concerns anyway. I have been worried about some seemingly neurological issues for a while now and they have started getting worse... I fear they wont be looked into until I am flip flopping about on the carpet.

I have had an SLE diagnosis for 6 years now... after having a hard life as a child and missing out on my 20's... i feel like I have had no life at all.

I mean as I type this I am struggling to keep my eyes open... today I forgot my name when trying to make a doctors appointment. Sometimes I forget where I am and what I am doing. It feels like something clicks in my brain then I have to try really hard to walk myself what I could possibly have been doing.
I have had restless legs for as long as I can remember... but I now have the sensation through ALL of my body. My fingers have starting moving of their own accord... I mean, what is that!! I get this thing where my whole body feels like it is shaking. It almost hurts. I regularly feel like I am going to lose consciousness completely, I have like mini episodes where I switch off. I dont know what any of this is and there is no one to tell me or reassure me.

Im going to look into different meds, thank you for the suggestions :) Maybe you guys can help me understand what these things are that are happening to me. I feel like when I voice my concerns the doctor just smirks and ignores them, like my condition is all just a joke anyway.

I have a wonderful supportive partner who really doesnt want to know about it and gets upset when he has to do things. I dont know how long i will keep him if i cant get my lupus under control. :(

So many of us understand how you are feeling about the doctor! Thread after thread in here talks about how they don't listen and ignore us. Steve said the exact thing that most of us will tell you. The doctor works for YOU and you can fire them just like you hired them! If one isn't listening then go find another. If that one doesn't listen get rid of that one as well! It isn't doctor shopping when they are not giving you the care you deserve!

When you are not getting the care you need things get worse. This can be a horrible disease when it is not being managed. Is plaquenil the only medicine you are on? Do you see a neurologist as well as a GP? What about a rhuemy? Because your story is so much like mine I will send you my story in an email because I promise the people here don't want to hear it again LOL

Take a few deep breaths. You aren't alone now because you are a part of our family now. We can't fix it but I promise it helps having so many people understand. It saved me more times then I can count!

Nat
04-06-2011, 06:15 AM
Hi Giggle,

Sorry to hear you're feeling so terrible. A lot of us have been through the pain that you're going through but sometimes even if people around you dont understand, just having someone to talk to who has been through what you're going through can be so helpful. I was diagnosed last year and being younger I found it a massive struggle to make the changes that I've needed to so I can continue working and living my life but finding people who've been through the same, and similar things as me makes it that much easier to deal with.
I live in Perth, so I'm not sure what agencies/supports are available in Mackay but have you looked into any agencies that can provide support with some of the smaller things in your life just to take away some of the burden? I know from my work (im a social worker) there's usually a lot of non-government organisations that provide community support...sorry I cant provide more specific info, if you were in perth i'd be able to :)
Also, I dont know whether this will help at all but check within your superannuation whether you have salary continuance insurance...I know not all people have it but some also do and dont know they do. Basically if you cant work for a period of 2 years they will pay you each month. but most of the policies only pay for a 2 year period so you would need to go back to work after that period.
I hope you start to feel better soon and you can find a medication that works for you. I'm on plaquenil too and haven't found that to be in control of my lupus on its own so have to take methotrexate and prednisolone along with it and my lupus is now relatively well managed.
Given i work as a social worker, i work with a lot of people who present with symptoms of depression etc so if you feel like you need to talk flick me a message on here or email me, happy to provide any support i can!
Best of luck

Maggi
04-06-2011, 03:14 PM
Hi Giggle,

I know you've already heard this many times, but DONT GIVE UP!! I know the pain you are going through, besides being a parent. I dont know what its like to have lupus and be a parent, but im sure some day i will. But i know what kind of pain you are going through as far as Lupus. We all feel the same kind of pain, some worse then others, but we all know how it feels. We are all here for you and to support you. You have this website and you can make friends and people that can support you and understand what you're going through. Dont give up. Im sure your daughter adores you and couldnt imagine living with out you. I know those days where you hurt so bad you want to give up. The pain is ridiculous and no one can begin to imagine what its like unless you have this disease...Even the people closest to you dont get it.

I definitely suggest that you should find another doctor and ask about other meds. I know sometimes when I ask my doctor, he will say "oh yes!! u are a great candidate for that drug." So sometimes just asking about it, brings up more options for you. There are TONS of meds righ tnow being tested and im one of the people who is part of a study. The drug has been helping me so far!! But we all hope they find a cure some day.

Any ways, hang in there..Even though we all dont know each other on this website, we all know what were all going through and we are here for your support.

If you ever are feeling down and ever would like to chat, feel free to message me. I am always available.

Lots of hugs and good thoughts!

Maggi

giggle
04-06-2011, 06:45 PM
sorry to take so long with my replies, but do know you have all been such a massive help. I love to hear about others stories because it makes me feel less alone in a strange way :)
The biggest frustration is always trying to describe your symptoms "I have trouble understanding things, I have no focus and sometimes I just forget what I am doing"
Doctors response: "Sounds like a concentration problem, try making sure you only have one thing to focus on at a time blah blah blah"
NOOO! I know what its like to just have a lapse in concentration... this is different... trying all those things doesn't work! I am unable to as hard as I try!
But you guys would get it... anyone who hasn't had lupus fog just does not get it, especially doctors.

Anyway the other day I had a doctors appointment, I told him I am scared of my recent change in symptoms. He gave me a blood test and we are now just waiting on results. My neurological symptoms have gotten disturbingly worse.
My head sways, or more bounces from side to side. My eyes have been closing against my will, normally they will try to shut due to fatigue but at the moment they just close without any feeling. I have that restless leg feeling all over my body. My fingers have been moving, not just twitching but closing and I have no control. My dizziness and unsteadiness has turned into stumbling all over the place like Im on a boat. Worst of all for an active person like me... I cant remain active for any longer than 30mins without needing to lay down... but when I do the restless leg feeling gets worse. Its driving me nuts.
Other than that, my digestive system has slowed down to a near stop. MRI shows inflammation in my digestive tract. No medications or supplements have improved it. The previous doctor did nothing about it.

I think the doc I saw this week is looking at a b12 deficiency. It would be a relief if it is because its easy to treat.

To answer some questions... nope, plaquenil is the only meds I have been on for lupus :( I dont see any specialists, there are none in mackay. I started my lupus life with a haematologist and eventually was referred to a rheumatologist with the public system... but he was truly terrible. We will be moving back to Brisbane eventually, but for now I feel really alone with no options. And to be honest my current symptoms are really scary.

Another complications... I dont have a health care card yet I barely make any money. We cant afford doctor visits :(

rob
04-06-2011, 07:37 PM
sorry to take so long with my replies, but do know you have all been such a massive help. I love to hear about others stories because it makes me feel less alone in a strange way :)
The biggest frustration is always trying to describe your symptoms "I have trouble understanding things, I have no focus and sometimes I just forget what I am doing"
Doctors response: "Sounds like a concentration problem, try making sure you only have one thing to focus on at a time blah blah blah"
NOOO! I know what its like to just have a lapse in concentration... this is different... trying all those things doesn't work! I am unable to as hard as I try!
But you guys would get it... anyone who hasn't had lupus fog just does not get it, especially doctors.


Cognitive Dysfunction aka Brainfog is the hardest thing to try to explain to people. For me, it's like I know what I want to say, but I can't say the word. Like there's a bad connection between brain and voice. Let's say we're in a car and you are driving, and I'm giving you directions on how to get where we want to go. I can look ahead and say OK, take a right at the next stopsign, only I can't say the word stopsign. I know what it is, but all I can do is say take a right at that thing up ahead-that red thing with white letters. It's just bizzare, and frustating as hell.

Rob

giggle
04-06-2011, 08:40 PM
exactly rob! I feel like I am stuck in my own head, my brain fog surprises me sometimes. I feel dumber on the outside than I feel on the inside lol I used to be so damn smart as well.

I had to tell my daughter and my partner last night that i couldnt close the blinds... I kinda laughed it off but they were very disturbed by it. I simply couldnt close my hand around the cord with any kind of pressure. But they wouldnt let it go and I just wanted to ignore it.

tgal
04-06-2011, 09:10 PM
If you only knew how many times Rob had to hear me whine about not being as smart as I used to be! My daughter laughingly says that talking to me is much like playing charades! I was talking to my niece one day and I was trying to say something about the clothes hamper but my brain could NOT find the word. I began saying "it's in the bathroom." and began making a square with my hands. She would say 'The shower". NoNoNo! I just couldn't find it at all! Looking back at that now it was actually a better day then some of my brain fog moments now!

I have had 2 neuropsych exams and the second was even worse than the first. It is one thing to know that my mind is going but it is another to see the proof of that on paper.

giggle
04-06-2011, 10:18 PM
Tgal...I have spent 6 years trying to put off learning the full extent of my condition. In that whole time I have had few tests... well look at me now... where I let myself go :/ My head is wobbling like an old man :(
I expect soon I will be having some similar tests to yours... I should have had them a long time ago. The problem is no one is monitoring my condition... its their job to know what I should be getting tested for. I shouldnt have come to this point... but even as far as my diagnosis went.. the haemotologist got the blood work done, told me it looks like I have a strange rare condition that only women over 40 get (!) and then referred me to a rheumatologist to get a final proper diagnosis. I went in, he talked to me briefly about my symptoms but it was clear he had already made his mind up... he says "Well, I am certain you have a condition known as SLE, lupus for short. Im going to put you on an anti-malarial drug called plaquenil. Take one of these twice a day preferably with food. Do you have any questions?" Nothing to ask or say... I was completely alone... just brushed it off and walked out. Just been taking plaquenil since. My GP of the time was fantastic and took over where everyone else failed, infact she initially save my life and that of my daughters. But she was a 'trainee' and was sent off to another surgery and they were unable to tell me where.

Look at me rambling :/

I know how you feel though Mari... most of the time my daughter finds my difficulties entertaining lol

pisces_music_girl
04-06-2011, 11:24 PM
Hey giggle,

I am twenty years old, and I cannot imagine being a single parent, let alone a parent. As of now, I'm living without a diagnosis but a lot of maybes hanging over my head. While I can't give you advice here, I can definately relate.

I have Panic Disoder and Depressive Disorder. I've been fighting depression since I was twelve, and when I was sixteen my life fell into complete and utter psychological destruction. I know what it's like to wake up everyday and just wish you were dead. I know what it's like to feel completely and utterly lost and desolate. I will paraphrase Elizabeth Gilbert in Eat, Pray, Love here and say that you just sit down in the middle of the road of life and you find that you can't take a single step by yourself anymore.

It's okay to get help. Depression is not shameful. You're not crazy, you're not weak, you're not hopeless. Therapy is one of the best things that happened to me- in fact, you don't need to go on psychiatric meds if you don't want to. It's not required, just reccomended, as a "boost". If you can't do that yet, go here (http://www.suicideforum.com). Those people are wonderful, though not professionals. They know what it's like to feel lost.

In any case, hang in there, giggle. It does get better- I am living proof of that!

giggle
04-07-2011, 06:04 PM
Thank you pisces :)

I think really it comes from a life of struggle. This is seriously how my life went...

Difficult childhood->left home early and was homeless->finally got my own place after struggling to learn how to live on my own->got a decent job but found corrupt people complained and lost that job just as I am evicted because the landlord wanted to sell the house->found out as I lost my job and got evicted that I was pregnant->found I had a tumour->tumour grew too large and went into premie labour and had caesar->had pulmonary embolism day after caesar->tumour ruptured, haemhorraged, had it surgically removed->removal of tumour cause metabolism shut down, I gained 50kgs which I could not shed for years->was diagnosed with lupus-> finally lost the weight naturally only to have issues resulting from sudden weight loss->neuro signs began to develop ... then there is how all these things affected my life in general with relationships and finding work. So far in my life, there has been no rest. Its one long drama after another and I am so tired :( There will be no rest either, I am going to have to work and try to deal with the consequences of my condition for forever. If I dont work I cant support my daughter and according to centrelink I do not qualify for payments, my partner earns too much. The only rest I will get is when I die and its all over :/ I want to try sell my art but my tremors and weakness have made it impossible to complete a piece :(

Just to clarify though, I dont have suicidal thoughts or anything... I just dont mind the idea of passing on... I used to say that even the most difficult of events in your life make life worth living... I have always been an optimist :) But now all there is ... is working myself into the grave to support my daughter... there is no other option.

Saysusie
04-07-2011, 07:46 PM
Hi Giggle;
I am sorry that you are having to deal with so much. As you can see, many of us have been where you are and are experiencing many of the same things as you do. The "Brain Fog" (as we affectionately call it) is a very real hindrance to many of us and the most commonest words/objects/places seem to be lost to us for no apparent reason.
I don't know if anyone has mentioned this to you, but many of us have begun keeping journals (of our symptoms, of our daily routine, of tasks that we want to complete, etc.). I find that writing things down is the only way that I can get through my day without seeming a complete idiot. And it is absolutely necessary for me to jot down any and everything that I want to discuss with my doctor, else I will become completely tongue tied once I am in the doctor's office. It is so bad, that I have now forced myself to write down everything, the moment that I think of it, or I will forget in the very next moment. I jot down simple things like, "Put the laundry in the dryer" If I do not, then 3 days will go by with the laundry sitting, still wet, in the washer until it has soured and needs to be washed again. . I have chalk boards in various locations throughout the house, so that I can write down what I am doing, what I need to do, what I want to do (it's sad, huh?). I make sure that, each time I pass by a chalk board, I stop to read it to see if there is something I should be doing LOL.
I say all of this to say that it is important that you keep track of your symptoms, what tests you want your doctors to run, what medications you are taking, how you are responding to those medications, what medications you'd like to discuss with your doctor, and what treatments you'd like to discuss. Many of us have found that we must take control of our health care and we must insist that our doctors take certain actions. Our failure to do so, too often, results in us not being treated properly and our symptoms worsening or never getting better. It is important that we become pro-active in our care. In this way, we can ensure that our health becomes as important to our doctors as it is to us!
We are here to help you and to assist you in becoming pro-active. Keep fighting, never give up, and demand proper treatment and respectful care!

Peace and Blessings
Namaste
Saysusie

giggle
04-07-2011, 08:47 PM
Thank you saysusie,

I can so relate to the clothes washing! lol Its soooo easy to forget... I was given an enormous dryer by the inlaws as well which is big enough to put the entire washing machine full of clothes in. The problem is my new head tremor and unsteadiness with relation to work. :( I love your idea for a diary though... I was keeping a diary at work... I think I will start keeping a diary at home though now :) When the doc asks me if I have certain symptoms I only ever tell him how I feel on the spot because I cant remember. With this head tremor and odd sensations in my limbs, he asked me if I had lower back pain and at the time I didnt so I said no... but in truth most of the time I do have lower back pain lol. I should definitely write everything down from now on :)

This forum is so useful! Keep it coming and feel free to PM your stories for those thinking about it. I have felt alone for so long its great to hear others stories.

Thanks guys :)

tgal
04-07-2011, 08:53 PM
Susie makes a great point! We finally put a white board in the area between the kitchen and dining/living area (because we can see it from almost anywhere). When there are things that I need to do either Ash or I will write it on the board so I can see it when I go by. It helps a lot. Great points Susie