Canadians Here On Disability - Any Advice?

[little_blue_jay]

Well so I had a good few months since my last flare-up. I am having a bad flare-up the last few weeks. The last few days I tried to work a couple of weeks ago, I was so tachy I kept going home early, each shift I was leaving earlier & earlier. The last day I tried to work, I did not even last 20 minutes before I had to go sit down, and I didn't actually take my HR but I believe it felt like it had hit 200 or pretty close. The supervisor kept telling me I had to go clock out ("we can't pay you to sit here") meanwhile I was doubled over trying to catch my breath, fearing that I'd either faint or my heart would stop, no joke. So considerate, some of my co-workers, eh. She finally said "what's your code, I'll clock you out". I asked a cab to be phoned as even though I only live 10 minutes away I could not walk home. She said that before I leave I had to sign something saying they can take me off the schedule as I am "unreliable and can't keep going home right after your shift starts". Really I can't blame them for that.

So she wrote up a note saying I give permission to be taken off the schedule. I'm not fired, they legally have to hold my job for me, but I cannot work. I didn't have the mental wherewithals to ask for a photocopy but I can acquire one - the manager there is very nice. (He wasn't there at the time this happened.)

Sorry this is rambling already! Anyway years ago when I was first diagnosed with "fibromyalgia/CFS" I applied for Disability and was denied, as at the time I could work parttime on reduced hours. Now I have been "taken off the schedule" as I cannot work when I am having a bad flare-up, and I don't blame them for doing that, I am unreliable but I can't help it. My POTS waxes & wanes. That last day at work, I said to them, "nobody can say I didn't try".

I have requested my family doctor refer me to one of two specialists in Hamilton Ontario who diagnose POTS. He has done this, however he warned me that the wait list is "one to two years"! (I keep reading that POTS is 'rare' - if it's that 'rare' why is the wait time this flippin' long??) He mentioned some heart drugs that potentially slow down the heart rate but to give him credit he does not seem like a 'drug pusher' type doctor - he did warn me that those drugs have bad side effects and sometimes slow the HR too much, and didn't seem keen on having me try any, and I told him I am very sensitive to basically everything (I've had reactions to vitamins and CoQ10!) I don't really want to go the drug route either. I have knee-high compression socks I wear to work but they sure haven't been helping much.

Even if this flare-up goes away in a few days or weeks, I know that it will happen again, and when it does it is so bad I could not even take a bath. My heart rate was so fast for a few days I could barely look after myself, I had next to no appetite, and I ran a bath one night as it's summer here & I was sweaty, all I wanted was a cool bath & to go lie down again, and I did not even feel confident I could safely get in as my heart rate was so high, and I told this to my doctor, that I was afraid of fainting in the tub, that when it is bad it interferes with me caring for myself, let alone going to work. And say I go back to work and I have another flare-up - I can't be just disappearing for 2 or 3 weeks every month or two, they're going to get real fed up with me! (I work at Tim Hortons so it's all standing & walking! And you're expected to move at a fast pace too.)

So without a diagnosis what are my chances of getting Disability this time? Today I applied for EI Sick Benefits which is for up to 15 weeks. I also applied for Ontario Works (welfare) so I'll go with whichever pays more. I was also given the ODSP forms for my doctor which he says he has no problem filling out for me again.

Basically I would like to hear from any Canadians here on Disability or ODSP - how did you convince them to approve you since as we all know this syndrome is "invisible" and "you look fine" etc etc. How many times were you denied? Is there anything I can do or add to the application to get it approved this time around?

Especially if anyone here has the 'relapsing/remitting' type? I am already fearing that if I have a Disability hearing that it'll fall on a 'good day' when I'm not tachy & gasping for air! Should I be starting a 'symptom journal'? How much would that help if they only look at the 'good days' and not the bad? If my POTS was always there I think I'd have an easier time to convince them in a way.... but I can't help that it comes & goes! I have tried so hard to work but in the end it was out of my hands that they took me off the schedule. Any advice or helpful hints?

Thanks to anyone who read through all this!

[little_blue_jay]

Bump. Are there really no Canadians here on Disability?

[corina]

Hi little blue jay! I'm not sure if there are any Canadian POTSpeeps on disability here. Other than that the forum seems a bit slow at the moment as it's summer!

[AllAboutPeace]

Little blue jay,

Im sorry to hear you are going through all of this. I'm a Canadian on disability. I want to respond fully to your post, but I'm just going out the door for an unexpected vet visit with my dog. I'll get back to you a little later

[AllAboutPeace]

Hi little blue jay,

Im sorry to hear about your work experience! I guess compassion wasn't their strong suit...

I don't have the relapse/remitting type, so I understand that you may be faced with more of a challenge because of that. I was approved the first time with Pots as my only diagnosis at the time (they may have put vasovagal syncope as well - not sure) and I hadn't tried any meds at the time. I had not had a TTT at the time I was approved, but my symptoms were severe. My internist diagnosed me from poor mans tilt and data they collected while I was hospitalized.

Has your doctor done any poor man tilt's on you? Have you had a Holter monitor? That information may be helpful. Is there someone else (EP/internist/neurologist) locally that you can see that would be able to diagnose you while you wait to get to Hamilton?

In terms of filling out the forms, I think more detail is better. I tend to be one to downplay my symptoms, but this isn't the time for that. I was really descriptive about how my symptoms affect me. Instead of saying something like 'I can't do housework', I would explain exactly how each thing affects me and avoided using medical terms. So, standing to do dishes, would cause my heart to race, cause me to feel dizzy and to have difficulty breathing, etc, etc. Your idea about the symptom journal may help you to keep track of your triggers and their effects. I referred to my journal quite a bit when filling out the forms. It's easy to forget some of them - or maybe you have a better memory than I do .

I also submitted two or three (peer reviewed) articles about Pots that I thought would be helpful and that would medically back up what my symptoms were showing. An article that discusses symptom fluctuation, relapse/remitting or the unpredictability of Pots might be helpful in your case. It's tough to commit to anything when you don't know when a relapse will hit you.

It's probably good thinking to get a document from your employer that indicates your 'unreliability' due to health reasons. Maybe they could even add in something about the fact that you had to leave early from various shifts, so you have proof that you tried to work. You showed up - and that's an important fact!

I hope things go well for you. Feel free to PM me if there is anything I can be helpful with

[little_blue_jay]

Thanks AllAboutPeace, for replying! Sorry I didn't reply sooner, my computer's been acting up! (maybe it has dysautonomia LOL)

Great suggestions on giving lots of details. I think I did that the first time years ago, but I am definitely worse now. And yeah when I have a flare-up I have had to take my dishes in 'stages'! Like wash a few, sit down & let my HR come down, wash a few more, etc. as my legs would feel so weak because of being so tachy, and the shortness of breath would be brutal. And as I wrote in the first post, when I was really bad I could not even take a bath!

Absolutely agree on what you said about not knowing whether to commit to something when you don't know when you'll relapse! I am going through that now - I feel like I could *almost* go back to work now, but I just know I am a few bad days' sleep away from a relapse, and as I said in my first post I cannot just keep disappearing from work for 3 weeks at a time every couple of months, they will get real fed up with me! So I seem to be kind of committed now to going through EI and/or welfare.

I am awaiting a tilt table test, but according to my doc it is a '1- to 2-year wait' to see the specialist! Next flare I will try to get an appointment and get him (my doc) to do a 'poor man's TTT' on me, so he can see me on a really bad day! I actually think the poor man's TTT is more accurate anyway, as the table test doesn't really represent what happens with you actually standing and having your legs support you (or try to!)

I have tried to figure out what my 'triggers' are, and I can't figure it out. I was trying to get good sleep last time; I was only being given 3 shifts a week towards the end because I kept going home early, so I had 4 days off every week to catch up on sleep, and rest, and still I flared bad. So I don't know. Maybe it was the stress of the place? Tim Horton's can be very busy and stressful; you're expected to work fast, sometimes I'd be the only person on counter with a long line-up, etc. Sometimes I don't really like it, but in this economy I thought I should just be grateful to have a job!

I really should start a journal of symptoms, writing down what I eat, etc. I eat nearly nothing 'commercial', i.e. with a brand name on it; I cook from scratch, fanatically avoid MSG, etc. So unless it's the stress of work I don't know what triggers my relapses!

Do you happen to still have the links to the peer-reviewed articles you submitted?