New, scared and saying hello

[LivingAlone]

Hi. I am 56 and tested positive for Rheumatoid Arthritis approx a year and a half ago. However, last week, my Rheumatologist told me that he believes that I also have Fibromyalgia due to the severity of the pain I've been experiencing. The only part of me that doesn't hurt (every second of every day) is my face.

I'm struggling to maintain balance in my life and failing. I work full-time and I live alone. For the past 6 months, it seems I'm either working or I'm sick. I have no time or energy for much beyond that. The truth is I'm not sure how much longer I can cope.

 

[Sagey]

Hi Livingalone,

I understand when you say that you don't know how much longer u can go on.
I was at that point several years ago and I was scared. I didn't know how I was going to pay for bills without my income.

I would suggest you talk to someone that knows Socisl security. I would get a lawyer right away to help you fill the application out properly. They know how to answer the questions.

Most people are turned down the first time they apply but the lawyer can appeal real fast. That would be my first priority finding an experienced lawyer.

And you can use your family leave time and sick time while your waiting for your approval.

Maybe your not ready to stop working now but u will know when u just can't do another day.

I wish you luck and hopefully you can stop working and take care of yourself now.


Sagey

 

[LivingAlone]

Thank you Sagey. I'm in Canada and from what I've been discovering my options aren't very promising. It seems as though I have to choose between my health and my independence. I have benefits through work and can go on long-term disability. However, that means trying to living on half of what I am living on now. And with other choices, Canada Disability Pension, EI sickness benefits, etc...I can expect even less.

I am only just managing to make ends meet now and I am working. I can't imagine how I'd survive on even less income. Unless I give up my apartment, my car and all my belongings. I can move in with family. I have grown sons and a brother who have offered me a room but, jeez...I don't want to do that. I've worked so hard to be independent and I like living on my own.

And now it really feels like my choices are so limited. It's very depressing.

 

[Lou38]

Hi livingalone. Welcome to the forum. I completely understand where you're coming from, fibro is really scary & it's so hard trying just to manage to work & make a living, keep a house etc. Every day is a constant battle. I'm in the position that I'm not sick enough to give up work yet but I know it's on the cards at some point, My fibro has progressed a lot in the last year. I live with my husband and 2 girls who are 9 & 11 & we're both on a reasonable wage but still struggle every month to get by, I could never afford to give up work. It's good having something else to focus on but working is really hard most days. I hope you can come to a solution soon that lets you keep your independence and doesn't have any more impact on your health, easier said than done though I know!

 

[LivingAlone]

Thanks Lou38. I don't feel that it's so bad that I should give up work completely. Actually, that's part of the dilemma. I am not always so bad that I can't work. And I want to continue to work. The problem arises during those times that I can't. And it varies. Some weeks, I'm fine (or my fine, at least) and other weeks, I miss a day or two. I'm probably averaging 3-6 days a month off sick.

But there is nothing in place to assist people like me (and you, I imagine). Either you are totally disabled or you are not. Either you stop working altogether or you continue to struggle to hold on to your job. Or that's how it seems to me. I wouldn't survive financially working part-time. Well, okay, I'd survive but I wouldn't be able to maintain my independence. I certainly wouldn't be able to continue to live alone.

I've tried searching for information, believing that there has to be help for people in this situation, but I've found nothing for those who want to work but who sometimes need some financial assistance for those times when they can't.

 

[diamond]

Have you thought about renting out a room in your apartment to a lodger or doing something like AirBNB which is holiday rentals on as little as 1 overnight stay to top up your income..this way you could maybe reduce your hours but not give up your own home. AirBNB pays really well.

You will know when the time comes and you know you simply cant do it anymore....maybe there is some welfare officer or in UK we have citizens advice that can help you find any welfare assistance..the trouble is they dont care about having enough money for the standard of living you have only give you enough to scrape by and when you have worked hard to build a home and keep independence its such a blow to think you might loose that too as well as face chronic illness.

I wish you luck on your journey..i know in US they have a system where you can have so many sick days if you get your doctor to say you have a long term chronic condition but we dont have it in UK....so maybe not in Canada either.

How have your employers been..are they understanding?

 

[LivingAlone]

I have thought about getting a roommate. I do have a spare room. At the moment, I use it as a study/guest room/art studio. I used to paint in my spare time. Used to. And once upon a time I was able to supplement my income with that. Not possible now. I've never heard of AirBNB but will look into it. I think my problem is that I'm fighting against having to change my life at all.

I do get sick days where I work. 4 hours of sick time accumulates monthly. But it's impossible to accumulate the time needed. My employers are understanding, yes. They are pharmacists so have some idea what I am dealing with. I work at three drug stores as a store administrator in the city of Ottawa (about a 30 minute drive there and back from where I live) and my hours are pretty flexible. For the most part I can switch days around to accommodate really bad days... which I do a lot. But that generally means I don't actually have any 'real' days off. Unless you count a day being sick as a day off. I know I should consider myself lucky that I have the job I do have. But as much as I wish I could be grateful, I'm not. Because working and being sick...well, that's not really living, is it?

I have been very down about all this but I know that feeling will pass and I'll find ways to cope. I've noticed that these 'blue periods' seem to come with the territory.

 

[Lou38]

I know how you feel livingalone. I'm not ready to admit yet that I'm sick & am still managing to muddle through at work. The pain is definitely worse when I'm working than at the weekend when I'm at home. I completely agree, there's no help available for people who do actually want to work but it's not possible all the time & if I did have to give up work & claim benefits I'd be much worse off. I've been up & down too, it seems that a positive moment is usually quickly followed by a negative when you're faced with yet another battle. Great fun having Fibro!