How do i do it on my own

[sunkacola]

the original spoon theory article. I have found for people who havent lived it they need something tangible to grasp in order to understand.

I personally hate the "spoon theory" because 1) it is not a theory at all but an analogy, and 2) it is a silly analogy.

I use a battery analogy. Any kind of battery. If you have a good battery it will fully charge and hold that charge for a while. If the battery doesn't hold a full charge and it runs down sooner than you want it to then it is a defective battery. People with fibro have defective batteries, so our power or energy runs out sooner than it used to, even if we have had a good night's sleep and our battery won't last as long as someone who has a good battery.

 

[hope23]

Hi Lou, i have had an allergy test done, i cut out food that had shown up on the results but none actually showed up as a definite allergy just a very mild allergy. But cut them out and then re introduced to see what happened and none of the foods that i did this with actually made a noticeable difference. I did however also do a plant based diet and then slowly reintroduced foods to monitor what happened with each. For me cheese and onions are no goes for me.
What is PIP?
As far as financial assistance here in new zealand i am not eligible for anything as it is all income tested, and what i would get in assistance if i stopped working or reduced hours i quite literally would not be able to afford a roof over my head and food to eat, and petrol in my car(i live rurally and cannot go without a car and electric is not an option due to the range you can get from a charge).

 

[hope23]

Hi JayCS,
I do a sedentary job and work between 35-45 hours a week. I am not eligible for any financial assistance here in NZ and if i don't work i wont have a roof over my head or food to eat or petrol to go in my car. 6 to 8 is without pain medication, pain medication can bring this down to between a 3-4. 8 i have called the ambulance myself, however in NZ as soom as they here the word chronic pain they dose you with pain meds amd send you on your way so not actually helpful.

In terms of medication helping short term but not long term this does not refer to pain medication, when a medication is no longer doing its job we change it(i.e, swap for something else, if there is an alternative).

My bosses are very good and supportive and if i need to spend 10mins lying on the floor to stretch its algood. Not working, financially, is not an option for me, period.

In terms of medication, i appreciate everyones journey is different but i also did not come here for judgement of the strategies that my doctor and i are using. For myself in non flare up mode, my pain sits between 4-6 and i can cope for the most part thoughout the day with usually two lots of pain meds spread out. We are very aware of opiod induced hyperalgesia and we monitor my medication and opiate use very closely.

In terms of weaning off meds, we did it one medication at a time a slowly reduced the dose, this is not a new strategy, we have tried this with terrible results.

In terms of the amitriptiline clinically successful levels are between 50 amd 75mg. It was increased to this point(125mg) for a reason and the reason being it managed my symptoms pretty well from January threw to june when current flare up started.

Again just really needed to have a bit of a whinge and talk to people who get it. My doctor is very onto so will stick with his advice in terms of medication.

 

[hope23]

As a side note on the amitriptiline, i kinda thought i would be obvious that if a lower dose was doing to the job we never wouldve increased it to the point we have had to.

 

[JayCS]

Hi hope -

if anything I said did sound like judgement to you, rest assured it wasn't, I never judge, esp. not online.
You've come to the right place for moaning and venting, and if you're not looking for ideas I'll be glad to oblige. ;-) I see now that many of my ideas don't apply anyway. It's a brainstorming for me and I do it just as much as I can learn from you and understand your situation rather than just trying to help. So questions, not answers.
I now understand your situation a lot better: the pain meds do help a lot, otherwise you change them, weaning off never helped, it is possible for you to work and would be for me too under your circumstances.
The feeling aside from that I'm now left with is mainly the appalling state of social security in NZ, it seems worse than the US? And PIP that I overlooked that cookiebaker had mentioned is disability. I'm guessing if you don't have any social security to mention that you also don't have any forms of disability at all? Gone is my (Lord of the Rings inspired) dream of New Zealand as a good and fair place to live....

 

[hope23]

Hi JayCS,
The state of social benefit system here in NZ is a f###ing joke to put it bluntly, im not eligible for anything, regardless of how crook you are its all income tested.
However if your unemployed and pop out 5 kids you can get 1388+(before tax, after would be 1100 ish) in govt support Nd even better those 5 kids will most likely get fed in school so dont need to feed them breakfast or lunch the govt will do it. But yet someone like myself who quite literally has to work to survive financially i get nothing. And if i did reduce work down to 10h or less what i would get in govt support would not be enough for rent, food and petrol let alone the other necessities of life.
Basically in non flare up if a medication isnt working or helping we change it. Flare up mode we chuck a lot at it to try and settle it down. So at this point after two weeks of diazepam, which is managing symptoms but has not stopped or helped the flare up, docs on monday we will be looking at what the next step or option is.
I think we can all relate to the rollercoaster that is our health journey!

 

[cookiebaker]

I have applied for Social Security Disability here in the USA (have not worked since March 2020) but it takes for ever to get processed, and most get turned down the first time thru. There is an appeals process, but it gets to be pretty time consuming and frustrating.
Here, SSD is based on how much you have earned over the years & how much you have paid in to the system - for me it would be a little over $1200/mo IF i get approved.

 

[hope23]

Yea so here it is based on your income at the time of application and you must inform them as soon as your income changes. We are lucky in that it is not associated with how long youve been a tax payer and what your contributions have been taxwise.

I personally think it is disgusting the a benefit due to chronic illness or disability or whichever word you choose is reliant on income and how you've contributed taxwise. Like no one asked to get sick, no one has control over whether they get sick, we certainly have aspects we can control and we learn things that help and those that dont. But if your sick you sick, regardless of how much you can force yourself to work, or have the choice of being homeless or eating.
One thing i am eligible for through my doctor(not govt assistance) is care plus which is four doctors visits per year at a reduced rate which doesnt sound like a lot cus im there monthly sometimes fortnightly but every little bit helps. And also after you get 20 scripts all scripts for the remainder of the year are free, so the calendar/count syarts end of January and.i reach mine by usually mid may, so for the rest of the year i dont pay for scripts which is also quite a bit help cus it all adds up.

We are very lucky to have a social benefit system at all as there are countries that have nothing. I think my biggest regret is not getting health insurance before i got crook, however i had tried and got declined due to the job i was doing at the time which was and early childhood teacher working with 2 to 3 year olds, this was deamed high risk injury wise by a number of companies.
I no longer do this job as physically, there is no way i would manage, i think the best description would be rocking in the fetal position under the office desk trying to do a physically demanding job like that.

 

[sweetkamie20]

I have applied for Social Security Disability here in the USA (have not worked since March 2020) but it takes for ever to get processed, and most get turned down the first time thru.

Hey, cookie, I worked alongside the ss system and just want to make sure someone told you that you need to appeal your denials two times. The stage of the process where most people get approved is when they have a live hearing with an actual administrative judge/magistrate. To reach that point you will need to appeal each denial you receive.

 

[sweetkamie20]

Hi, Hope Glad you found us

I hated it when people assumed that what I was doing to help myself was wrong. So frustrating! It's easy for someone that doesn't live with fibro to overlook the reality that they don't know as much as you do about your situation.

Unlike the people that don't have fibro everyone here is trying to manage fibro and recognizes that what works for them might not work for you and vice versa. When I was new I tried to make everyone here give me the solutions and they kept telling me that they can't tell me what the solutions are because everyone is different. I really, really wanted someone to give me the recipe but the people here are annoyingly unwilling to tell people what is the right or wrong thing to do

I've been hanging with the people in the forum for a bit and am really comfortable saying I don't think you are or will be judged here for how you try to solve these problems. If something ever comes across that way, it's just that it was written in a way that came across wrong. Lots of us have had problems with medications and they made things harder for us so naturally you might have someone recommend trying to alter the medication protocol. It doesn't mean you're being judged. It just means we only have our own frames of reference to help you by.

Everyone here is rooting for you and understands the drama of managing fibro. You're a trooper. I respect your fighting spirit

One of my primary coping methods is humor so we started a thread Memes: A Touch of Humor for Us Fibromites. If a little laughter or sarcasm might help, consider checking it out

 

[cookiebaker]

Hey, cookie, I worked alongside the ss system and just want to make sure someone told you that you need to appeal your denials two times. The stage of the process where most people get approved is when they have a live hearing with an actual administrative judge/magistrate. To reach that point you will need to appeal each denial you receive.

thanks for the info, Kamie... not really what i wanted to hear, but grateful anyway. At least now I have a frame of reference.
It just takes soooo long.. applied Nov 30th 2021 - nearly 9 months ago now...

 

[sweetkamie20]

it’s a long process unless you are blind or have some indisputable challenge. Do you have an attorney?

 

[hope23]

Hi SweetKamie20
I am definitely new here, and can fully understand that help and suggestions more than likely come from a good place. It is unfortunate that my experience(health journey, not forum experience) has been that judgement has been a large part of my journey. From people thinking your nuts to people (who mean well) but 'oh if you just tried this one thing im sure youd be good as new' to straight out judgement for the large amount of medication that my day involves(one of which was a pharmacist who in the middleof the pharmacy outright asked if i was drug seaking and does my doctor know all that your taking and as long as your not trying to get more from other avenues. I dont enjoy taking medication and if i was able to manage my FM without medication that would 100% be the choice i would make. This is coming from a place where i have tried every single suggestion given to me either by my doctor or people in similar situations and even just other chronic illness sufferers.
I take my hat off to those that manage there FM without needing to be a walking talking pharmacy, unfortunately that has not been my experience despite many many attempts at alternative therapies, diets, health supplements and each new medication as it becomes available here in new zealand.
I do apologise for being a bit snappy, that was definitely unfair to JayCS.

 

[sweetkamie20]

Hi SweetKamie20
I am definitely new here, and can fully understand that help and suggestions more than likely come from a good place. It is unfortunate that my experience(health journey, not forum experience) has been that judgement has been a large part of my journey. From people thinking your nuts to people (who mean well) but 'oh if you just tried this one thing im sure youd be good as new' to straight out judgement for the large amount of medication that my day involves(one of which was a pharmacist who in the middleof the pharmacy outright asked if i was drug seaking and does my doctor know all that your taking and as long as your not trying to get more from other avenues. I dont enjoy taking medication and if i was able to manage my FM without medication that would 100% be the choice i would make. This is coming from a place where i have tried every single suggestion given to me either by my doctor or people in similar situations and even just other chronic illness sufferers.
I take my hat off to those that manage there FM without needing to be a walking talking pharmacy, unfortunately that has not been my experience despite many many attempts at alternative therapies, diets, health supplements and each new medication as it becomes available here in new zealand.
I do apologise for being a bit snappy, that was definitely unfair to JayCS.

I figured it was all the stuff you had already been through before that caused you to feel defensive

It shouldn’t be shocking because stuff like it happens all of the time but the whole pharmacist situation surprised me! I don’t think I have heard of a pharmacist ever doing something so insulting before! . I’d probably have reacted very angrily boldly and made other customers uncomfortable Just reading about your experience stirs up my anger!

Youre definitely not on medication because you want to be - you’re on it because the benefits outweigh the costs. I wish I didn’t use any medication but I use an anti-seizure drug so I don’t have seizures and can drive without killing anyone. Supplements just haven’t been consistent enough to switch to.

Supplements aren’t exactly straightforward either and have their own drawbacks for that matter. If your house looks like mine it’s a supplement warehouse

You will probably appreciate this meme

 

[hope23]

It shouldn’t be shocking because stuff like it happens all of the time but the whole pharmacist situation surprised me! I don’t think I have heard of a pharmacist ever doing something so insulting before! . I’d probably have reacted very angrily boldly and made other customers uncomfortable Just reading about your experience stirs up my anger!

Whether you call it balls, straight up, blunt or up front, i was very blunt with her in the middle of the store 'my doctor is fully aware of all of the medication i take and the reasons behind it, i think I'll trust my doctors advice on whats right for my health than yours, I'll take me scripts now thanks!!' I also then phoned and spoke to the owner and complained and basically said i refuse to be served by her again, i have been coming to this chemist for over two years, if im ever treated that way again i will be having my scripts sent elsewhere.


Im all for giving supplements a go and if they help great! If they don't im not guna waste my money(my health on its own is a big enough financial struggle without paying for supplements that dont do anything)

Youre definitely not on medication because you want to be - you’re on it because the benefits outweigh the costs.

You are spot on here, no part of it is enjoyable whether it being because today you just cant stomach the pills so your gagging on them or have choked them down and then thrown them back up in to your lap. I think i can safely say that no matter how we manage our FM or other illness if we had the choice to be healthy and not live this way we'd take it.