Big decision

[Chirley]

Hi,

I have to make a decision about work. I have had to cancel my booked transfusion for this week because my work roster has been changed without notice and I couldn't make it to my appointment. I rang my haematologist and he said that this roster change was very concerning and quite insensitive of my employer. I rebooked my transfusion for the weekend which is okay for me but not so good for my doctor. It means that I also have to try and work with a low Hb for longer, I feel very fatigued already and know that by the time I get my transfusion I'm going to feel awful.

I saw my GP about a UTI that I've been unlucky enough to get and while I was there, I mentioned the work issue. He has offered to sign me off work with a total and permanent disability so that I can receive my insurance pay out. I have discussed this with my family and they think I should accept this offer and stop working. I'm very anxious about this, first because I don't know if the pay out will last long enough until I'm eligible for a pension and secondly, it feels so final. It feels as if this disease is starting to beat me and it's a downhill slide. If I accept the pay out, I'll feel like a quitter. (on the other hand, I'm so tired that I almost hate going to work.)


I'm really confused.

Chirley

[Birgitta-A]

Hi Chirley,
I don't know if it is impossible to start working when you have retired in Australia if you get better but in Sweden we have that possibility.

Perhaps you should feel much better if you didn't have to force your poor body to work when it is so tired. You could take care of yourself and do a lot of things lika walk in the nature, get massage and so on. These things can help your body to fight diseases.
Kind regards
Birgitta-A

[squirrellypoo]

From your earlier posts, it's clear your employer doesn't understand your condition or what you're going through or how hard you're working in order to do your job at the level required of you.

This isn't quitting, this is freeing yourself from a bad situation and allowing your body to use the energy you would've used at work to now focus on getting better. This is a positive step, IMHO!

[Neil Cuadra]

Chirley,

You said you had a Union representative with you when you met with Occupational Health and Safety officials. Can the union offer you any further advice, or connect you with others who have gone through anything similar? Can they do more to represent and advocate for you or have you exhausted the appeals process?

I'm sure you'd rather retire on your own terms when you feel ready rather than feel you were forced out. Retiring may be the right choice but it's a tough decision to make on your own. The more local support you can get, the better.

[fibogann]

Originally Posted by cme01

Hi,

....I have discussed this with my family and they think I should accept this offer and stop working. I'm very anxious about this, first because I don't know if the pay out will last long enough until I'm eligible for a pension and secondly, it feels so final. It feels as if this disease is starting to beat me and it's a downhill slide. If I accept the pay out, I'll feel like a quitter. (on the other hand, I'm so tired that I almost hate going to work.)


I'm really confused.

Chirley

Hi Chirley,

If your work adds on more diversions to your treatment in a sudden way such as what has been described by you, it is better for you, in my humble opinion, to stop working and be able to spend time on your treatment because the MDS will impact on the quality of your life, and sudden diversions and changes to your work schedule is not going to improve your treatment prospects and add in your recovery.

Speaking in the Australian context, I believe once your permanent and total disability insurance payout runs out, and you are not working, you may move on to the Centerlink's or government Disability Pension even while you have not yet reached pensionable age.

That determination will involve the earnings and income of your spouse, if any, whether you exceed the claimable threshold on a combined income. A telephone call to your local Centrelink will be able to enlighten you and put your mind at ease, so I do suggest you try calling them up to get some reliable answers.

And no...you do not come across to me as a quitter. In fact, you are very much the epitome of the thinking australian battler with a spirit of hope and courage...and I wish you well. Go on, aussie...go on!

Regards

[Chirley]

Thank you all for your support.

Friday may be my last day at work. I have an appointment with the Occupational Health and Safety officer to receive help with the paper work involved in receiving my Income Protection Insurance.

I have worked out that if I apply for long term sick leave, I will receive 75% of my pay for up to two years while still accruing annual leave, long service leave and superannuation. My doctor can then sign off on total and permanent disability which entitles me to receive my superannuation payment for disability. I will also be able to apply for a top up or part pension to supplement the superannuation payment. This part pension would also entitle me to a health care card which gives me a discount on medication, rates, electricity, telephone, car registration etc. However, this all depends on the insurance company accepting my initial claim for sickness benefits.

Please keep your fingers crossed for me.

Chirley

[Chirley]

I have just worked my last day (I think). This is very scary but at the same time I also feel very relieved. I feel as if a burden has been lifted and I can concentrate on trying to get rid of the continuous minor but irritating infections that I keep getting.

When I don't have to get up at 4.30 in the morning next week and then battle an hour and a quarter in heavy traffic, then it will sink in that I have finished work.

If finances become a problem, I may have to get rid of the internet but I hope it doesn't come to that. My two little dogs might have to go on a diet and stop getting so many treats, their vet will think that's good because they are a little (lot) overweight.

I know I shouldn't but I have bought a very good bottle of cab sav and plan on having a couple tonight. Transfusion day tomorrow, I hope my doctor doesn't notice the alcohol.......another lecture on the way.

It's very hot and humid here and I'm looking forward to winter. Think I'll turn the airconditioning on and relax.

Chirley

[Birgitta-A]

Hi Chirley,
Good that you at last can rest and take care of yourself ! Hope your finances won't become a big problem. I always think that my health is the most important thing when my friends tell me that I have a lower quality of life due to restrictions because I try to avoid infections.
Kind regards
Birgitta-A

[launch]

Dear Chirley,
Let me just say, if my husband had followed the request of his "Lead" at work, he may not be with us today... what happened is, our family doctor failed to recognize my husbands blood problem (Anemia was very evident)... but, instead of checking blood levels (blood panel), the doctor kept prescribing my husband with Antibiotics to treat the recurring sinus infections, etc.... well, my husband (Ron) was scheduled for a routine Cardiogist check-up (he does this every 6 mons). Our lead (we work together), asked Ron to re-schedule his cardiology appt for later on so my husband would not miss some training that was scheduled last minute. My husband refused, and we're thankful that he went against the workplace desires..... or, my husband may not be with us today.... It was his cardiologist that recognized a problem and immediately ordered a blood panel. Then, a day later, called with news and told us we needed to see a hematologist immediately.... It was Friday and we couldn't get in until the following Tues, so we scheduled an appt. BUT, on the next day (Sat), Ron became very very ill.... and very weak... I too him to the ER, because I knew his blood levels were low... especially whites... and Ron had a very high fever. we were worried because we didn't know what it was......

My point being... always take care of yourself over work! And, I've been riding my husband to retire, but, he's not ready..... I'm hoping he's ready soon.... because, I want him to get his rest and not to worry about work issues......

Good luck to you! Cindy

Originally Posted by cme01

Hi,

I have to make a decision about work. I have had to cancel my booked transfusion for this week because my work roster has been changed without notice and I couldn't make it to my appointment. I rang my haematologist and he said that this roster change was very concerning and quite insensitive of my employer. I rebooked my transfusion for the weekend which is okay for me but not so good for my doctor. It means that I also have to try and work with a low Hb for longer, I feel very fatigued already and know that by the time I get my transfusion I'm going to feel awful.

I saw my GP about a UTI that I've been unlucky enough to get and while I was there, I mentioned the work issue. He has offered to sign me off work with a total and permanent disability so that I can receive my insurance pay out. I have discussed this with my family and they think I should accept this offer and stop working. I'm very anxious about this, first because I don't know if the pay out will last long enough until I'm eligible for a pension and secondly, it feels so final. It feels as if this disease is starting to beat me and it's a downhill slide. If I accept the pay out, I'll feel like a quitter. (on the other hand, I'm so tired that I almost hate going to work.)


I'm really confused.

Chirley

[Chirley]

Hello,

I'm very thankful for the replies, they have given me the courage to take extended sick leave with the ultimate goal of permanent retirement. I worked my last day yesterday and took the cowards way out by not telling my colleagues. Of course I had to inform my employer and the OH&S dept but I kept my secret from everyone else. I simply walked out of the building I have worked in for almost 23 years and didn't look back. BUT, when I got to my car, it wouldn't start. The immobiliser had developed some kind of problem, I had to call the car club and wait over an hour for them to arrive. I thought it was an omen meaning I wasn't meant to leave. Ha..

Any way, the car club man hot wired my car and I drove to the nearest auto electrician and had the immobiliser disabled permanently. I drive a 1994 Toyota and even though I leave it parked outside with the doors unlocked and the key in it, nobody but nobody will steal it. Just kidding. I have loved this car over the years but now I keep hoping something major will go wrong with it so I have an excuse to get a newer model car but this car has been and still is very reliable and I feel I should be loyal to it. Now with the financial situation I need to keep the car longer anyway.

I had my transfusion today Hb 77 Neuts 0.7, however, I didn't see a doctor. My doctor wasn't on for the day care section and the doctor who was covering didn't turn up. I guess I'll have to ring and find out when he wants to see me again but now that I'm not working it doesn't matter when that is. It does feel good not to worry about the timing of my visits.

Thanks again for the support and I'm going to have some very much needed rest for a little while.

Chirley

[Joanna]

Hi Chirley,
Just to let you know that you are not alone in this situation. I am living in Western Europe. I had to stop working completely because of sudden health problems and the proper institution after checking my health gave me 100% disability. But I was only 31 at that time so I was in shock & didn't want to accept it. I still don't...It's not a sentence for life, not in my age !!! so I am fighting...
It's been almost 6 years now and I am still not better, in fact - worse (my bad luck?). But I never lose hope that somehow I will lift myself up & go back to normality which I miss so much...
I receive 70% of my last salary which is decent enough but I am worried about my pension because I don't build any during the time I am not working.
I lost my flat, my career, my family & friends walked away after I got ill. So I am pretty much isolated, in yet another new country (language barrier is also a difficulty especially when talking medical language) but I have decided to stay here period. My friends & family know as little as possible. I would only get blamed even more for everything and how big "screw-up" I am which isn't really encouraging and does not help to recover...
What helps with coping is the following:
1) knowing that I am not alone in a situation like this (there are other ppl in the world)
2) knowing/hoping that "it will get better", especially when I suffer enormously, the fact that eventually it has to stop/get less painful, really helps
3) holding on to a hope/dreams that I will go out of this and start again/rebuild my life, resume my career or start sty new and that "it's never to late" (even though at this particular moment I feel like my life is finished, but that's because I don't have support from others just only more stress and more reminding me what a loser I am)

People try to force me to religious practices but that's not what I need and it makes me very frustrated. I need just simple human empathy. Some little bit of support from my family would be nice. But..."you can't always get what you want"...

[Sally C]

Dear Joanna,
I am so sorry about your health problems and also that your family isn't giving you the support you need - far from it. Sometimes family can sure be disappointing. I cannot imagine turning my back on someone in need - especially a relative or close friend.
I wish I had some magic words to make all this different for you. All I can do is wish you well and pray that things turn around for you. Dealing with what you have on your plate at best would be difficult. Having to go it somewhat alone would be terrible.
Maybe you will find some new, supportive friends on the Forums. They are wonderful people.
Please let me know if I can be of any help. shcalvert3@aol.com.
God Bless,
Sally

[Neil Cuadra]

Joanna,

It's a shame that you don't have complete and non-judgmental support from your family. Nobody should be blamed for being sick. Sometimes life throws us into situations where our notion of family has to expand to include people who care about us but aren't relatives. I hope you'll find more people around you who can provide you with friendship and support. When my wife got sick we leaned heavily on other patients. Those new friends, first connected to us only because of a shared health problem, became very important to us and our well-being. They cheered us on and gave us hope for the future. And we just had to accept that some other people chose not to stay close to us when our situation was at its worst. We never had the problems with our immediate families that you describe, but I understand why it's been so hard for you.

Six years is a long time to wait for improvement, especially during what should be your working years. None of us know what the future holds, which means that your health and situation could improve. I hope you can hold onto a positive vision of what's to come, and find your path to health and a return of your ability to work.

[Joanna]

Thank you both, Sally & Neil for your support.
Indeed I need to find new people in my social circle but I feel ashamed to the point that I don't admit that I need their help even if it's them who propose to give me some support. It's hard to trust anyone. But I hope it will come with time.
I am in a big mess not only b/c of my health and it takes a lot of energy from me to fix things.
Since few years s...t keeps happening to me every step of the way and I am very very scared that I end up very bad. But at the same time I hope for the good things and I am doing everything in my power for them to happen.
Thanks a lot and yes keeping supporting each other helps and I find it so great...
Joanna

[slip up 2]

Chirley......Happy Retirement
enjoy, sleep, read have a nip and do it all over again....
Kate

[Chirley]

Thanks for the good wishes but if you notice the date...that happened three years ago.

I did stop working then and started using my income insurance but I didn't really resign from work until Sept 2011. I kept putting off resigning hoping I would get better and be able to go back to work.

I have to say, I am loving those mornings when it's raining, windy and miserable and I can snuggle down into bed and think about those poor working people who have to get up and go to work.

Regards

Chirley