Knock on effects from Et

[Bobthecob]

Hello out there, I was diagnosed with Et aged 37 I am now 56. Over the years I have had to reduce my working days from5 to 3 then 2 and I am now thinking of dropping another day. This is due to fatigue etc and having to rest day before work and day or days after. This has obviously had an effect on my earnings and pension. Has anyone else experienced loss of earnings etc and how have they managed. Interested in hearing any replies. Thank you for reading .

[Swede]

Hi there,

yes,I was working 4 days a week untill 2 years ago when I was lucky or unlucky that our practice was sold to , well, without being too outspoken, two people who had no idea about people-patients-staff, just money! So, I decided to quit. My husband did the same a year later and as he now is working in two other practices, I have been asked to work there. It is just one day a week but I like it and it is a good way of getting me out and about, to see some people! I dont think I could work 4 days per week now and frankly I enjoy being at home more now.I understand that my pension etc. will be affected but on the other hand, I live now, and I need less money when I am not working. AND a funny thing, I have sorted out things, wardrobe etc and sold that, I also crochet things and sell them. I am just missiing the rocking chair and the cat!!!!

[Cja1956 in reply to Swede]

I’m also not working as hard as I used to. I sell health Insurance and I’m self-employed but I just don’t have the energy I uses to have.

[Bobthecob in reply to Cja1956]

Thanks for your reply, I just feel guilty not bringing money in and wondered how others manage. I don't know where my energy goes

[Cja1956 in reply to Bobthecob]

My feeling is you do the best you can under the circumstances and if you have an understanding partner, even better. I got diagnosed 3 months after I met my boyfriend 11 years ago and he just moved in a little over 2 years ago. I now pay only half of our expenses which helps a lot and he picks up the slack. He also now sees firsthand the extent of my fatigue and dizziness and has been very supportive. Try not to feel guilty and enjoy your life.

[Bobthecob in reply to Cja1956]

It is good to hear you have such an understanding partner. When I was diagnosed I had no idea of the knock on effect the disease would have. Will try not to feel so guilty

[Bobthecob in reply to Swede]

Hey there, thanks for your reply. It sounds as though you have got work life balance sorted. I knit too. Think I am just feeling guilty about not being to help with the finances and hubby having to do my share. I agree with what you say about needing less money when not working, you don't have to have work clothes or extra car to get you to work. Take care and keep crocheting

[ksos]

Hi -- yes, fatigue had a similar effect for me. I'm 66, was diagnosed with ET about 2 years ago. I'm working half to a quarter of what I did before. Luckily, being self-employed, I was able to switch from seeing my clients in person to talking with them over the phone. That reduced commuting and travel, cutting down on both time and expense. I have an incredibly wonderful husband who helps out with the house and cooking when needed -- and that's often. I keep learning more about accepting not working at the pace I used to and have come to appreciate slowing down some. We just keep making adjustments as needed and our life is still very good and we're happy.

As everyone has said, the most important thing is to not feel guilty; the fatigue is real and can be so debilitating -- you don't need guilt on top of all that!

Best to you,

Kim

[Bobthecob in reply to ksos]

Thank you for your reply, it sounds as though you have made adjustments and they are working for you. Take care

[Smile61]

I have severe fatigue. I am only working about 15 hours a week. I am calling in again today. I am waiting on medical retirement but it takes a year. No one understands the side effects from this cancer. I feel like I have cement shoes on. Iam able to work from home only one day a week. I am requesting reasonable accomadation to work from home more otherwise I will be homeless. I feel your pain. Hang in there!

[Bobthecob in reply to Smile61]

So sorry to hear you are struggling, I know what the cement shoes feel like, I have described it as swimming through treacle. It is so good to hear others feel this tiredness too.

[redumbrella]

Hi there,

I was diagnosed with PV almost 14 years ago aged 50, I took early retirement at 55 due to fatigue etc. For 4 years I struggled financially but 6 years ago I started to take photos for my local Paper which brings in some welcome income. I really enjoy it as well and best of all I can work my own hours. It's ama

Best of luck

Garry

[Cja1956 in reply to redumbrella]

I am glad you found something that works for you. Even though I consider myself sel-employed, I work under a large company that even though we only get paid commission (no salary or health benefits), they expect us to perform at a certain level. It’s a lot of pressure but after nearly 8 years, I don’t know how much longer I can continue there.

Take care,

Cindy

[Bobthecob in reply to Cja1956]

I sympathise with you, it almost feels as though getting enough energy together to work is stress in itself. Take care and look after yourself

[Cja1956 in reply to Bobthecob]

Thank you and so true. It’s so nice to get support on this site since so few people understand what we are going through. Keep us posted.

Cindy

[Wyebird in reply to Bobthecob]

Contact age uk . you are over 55. When filling out for my mother the were brilliant.

Eg- can you dress yourself? Mum said yes and I said no she has to wear Velcro shoes straps. You can’t cope else you wouldn’t reduce your hours.

You’ve got nothing to lose.

DONT FILL IN FORM YOURSELF.

Let the experts do it.

Good luck

[Bobthecob in reply to Wyebird]

Thank you that is good advice

[Wyebird]

Oh dear apply for pips before you drop a day. you can get financial support

[Bobthecob in reply to Wyebird]

Hi Wyebird, thank you for replying. I looked at the pips website and read needing help getting dressed and fed etc and thought it was for really severe cases. Do you know of anyone who has applied with this condition or fatigue?

[Helena303 in reply to Wyebird]

Ha you won’t get pip if you can read a hospital letter

[Wyebird in reply to Helena303]

Lol

[Meatloaf9]

Hi Bob, sorry that your fatigue is so bad that it affects your ability to work. I have read posts by persons who have severe fatigue and they were prescribed either ritalin or adderal for the fatigue. The posts said they had dramatic improvement in their fatigue, wondering if you have explored that possibility with your hematologist?

[Bobthecob in reply to Meatloaf9]

Thank you for replying, I have not heard of those treatments for fatigue and will certainly mention it to my haematologist next visit

[Chaz1 in reply to Meatloaf9]

Didn't know there was anything they could offer for fatigue. Will ask Hubby's Haemo team as they always dismiss the fatigue, thanks

[Jahill]

Hi I am 63 and was diagnosed with ET 3 months ago. I am still working 5 days a week but flake out in the evenings due to fatigue. I know eventually it will take it's toll and I had planned to retire when I was 66. There is a benefit called personal independence payment (PIP).You may be entitled for it based on your deterioration.

[Meatloaf9]

If you go to the MPN Research Foundation and do a search of Ritalin, you can find posts by patients who have taken Ritalin for the fatigue and see what their experiences have been, could do it for adderall also but I did not do that. Just use the search box on their website, you may have to register for it just like on the MPN Voice site. Probably good to check both sites when you are looking. Best of luck.

[Bobthecob in reply to Meatloaf9]

Thank you for the information, I will certainly look up the posts of people that have taken Ritalin