Hopeless due to my MPN

[Anonymous022719-]

Hi! Everyone, I feel like i'm useless to my job because i always feel tired, bone pain, etc. The worst thing is that I cannot concentrate on my job. I feel like i'm just a burden in my family and at work, they discriminate me and backstab me because i don't broadcast my illness. I really feel depressed right now and wanting to leave my current work but i am also afraid that I will never find another job. Sometimes i also forget to take my meds due to my pre occupied mind. I am sorry for posting in this kind of mood. Take care always and thank you.

[Cja1956]

Please don’t apologize for posting this. That’s what we’re here for. It is difficult and frustrating to not be able to keep up with other employees. I used to be a teacher of children with special needs and I had to leave because I couldn’t be on my feet all day, and that’s what they expected. I’ve been self-employed since 2003, selling insurance, but I’ve never made as much as I did teaching. But I could work at my own pace and that helped a lot. Now, I’m 65, and if I work 4 or 5 hours a day, I’m good.

I’m so sorry you feel you are a burden to your family. Do they know what is going on with you? Maybe you should sit them down and explain that you need their understanding and support.

I hope things get better for you.

[Anonymous022719- in reply to Cja1956]

Thank you so much for the support. I'm so glad that i am not alone in this group. I already talked to my mom but she is not open about it because of her age she don't want to get involved. I am trying to find a lesser stressful environment but due to pandemic, I am having a hard time to find one. Take care always. ♥

[Mazcd Partner MPNVoice]

Hello, there is no need to apologize for how you are feeling, as Cja1956 has said, that is what we are here for, to listen and help you.

We all understand how you are feeling, living with a MPN can be very daunting, and having to cope with the side effects, particularly the awful fatigue, and working full time, does have a massive impact.

There is a lot of very useful information on our website which I am sure will help you to explain your MPN and how you are feeling to your family and work colleagues, if people understand more about your MPN it will help you.

mpnvoice.org.uk/living-with...

with best wishes, Maz

[Anonymous022719- in reply to Mazcd]

Hi Mazcd Admin,

Very much appreciated this page because here, i can freely post my struggles and you guys can understand me. Thank you so much will look into the link. Take care always

[ggrana]

You are not alone , we all get those days . God bless you! HE is always there for us and gives us the strength and will we need to get thru this.

[Otterfield]

As other have said, you don't need to apologise for your post - we are all your friends here.I am thinking that it might be a good thing to tell people at work about your illness, then you will hopefully get support from management and at least some of your colleagues. When I was still working I always told as many people as possible and the response was generally kind.

Best wishes, Jennie

[CliffW]

Absolutely no need to apologise for how you feel and saying it. It's good to talk, remember, and your colleagues possibly just don't understand your situation properly. How could they? Cliff

[Ratton726]

I would suggest you tell your workmates exactly how you feel and why!Also inform your employer what is wrong- don't be afraid to speak out-be assertive.

(I never was assertive when I was working (back then I didn't know I had ET)?(Maybe I did)?

Let us know the outcome .Good luck and stay as well as you can.

Perhaps a talk with an MPN specialist might help also ?

Very best wishes

[Misty-3]

Hello

Please don’t be disheartened. I was also working full time before and because of my MPN, I decided to go part time. I need to rest because I easily get exhausted. I felt the same like you before but now I have accepted the fact that I do have this rare disease. But hey, I think that I’m a lot fortunate counting the blessings that I receive every day.

And my manager at work knows what I’m going through. I have to let management know so my time is very flexible. I think they need to understand.

Hold still, breathe and think of the good things. Take care. I hope and pray that things will turn out fine with you.

[Jenny_F]

I know how you feel but I would definitely tell someone you work with. My manager knows but she is moving on to a different role so I am bracing myself to tell a new manager, if needed. With the push to go back to the office I may also have to tell HR so that they understand why I still want to work at home. Don’t ever apologise to anyone, this is none of our faults and we all do our best to manage our condition. One question, are you on any meds? I am on aspirin only and am dreading being put on any of the medications as I am sure I wont be able to continue to perform at the same level I am now. Anyway, we are all here for you.

[Anonymous022719- in reply to Jenny_F]

Hi yes, i am on meds hydroxy, aspirin, allupurinol, besilate (for itching )

[Virginia91]

So sorry to hear about your struggles and thank you for sharing them.

Would it help to write a list of things to do to help you?

For example joining webinars on MPN's, making a plan on ensuring a good diet and exercise, maybe just walking every day in the nature if possible. We are all different individuals and only you know what is best for you.

For me it helped to get back a feeling of control in my life. The more I understood my diagnosis (ET) the more I understood I needed to approach life differently, and all my relationships differently. Some friendships were supportive and a couple simple ended. The reason they ended was because I began to prioritize my health.

Having more knowledge helped a lot. Not everything we can read online is helpful and science has moved forward.

I wish you well on your journey and as the others have said, we are not alone.

All the best.

[Threelions]

Hi,I feel your post…..you are not alone. I used to run my own business but had to give it up in March this year as I physically couldn’t keep up with the demands due to , mainly, tiredness. I too worry about finding a suitable job that I’m able to do. The thing about MPN is there is often no regular pattern to the symptoms with some days better than others. This makes it difficult for some to effectively do a full time job. I’m really sorry I don’t have any magic answers ( other great MPNers have suggested some positive actions you can take) but wanted you to know that we’re all here for you and will help in any way we can.

You’re not in this alone .

[hunter5582]

Glad that you decided to post where you are at, though sorry to hear it is at a low point right now. We certainly all understand what it is like as making it through the down times is part of managing a MPN. Know that you are not alone and that all of us are here when you need a place to express what you are feeling, positive or negative.

On a pragmatic side for dealing with the fatigue - Mazcd provided a link to some good information. Some of the things that work for me with the fatigue are: good nutrition, limiting caffeine, exercise and practicing Qigong. Getting restful sleep is critical. Insomnia is pretty common with MPNs and needs to be addressed when present. I will occasionally drink some ginseng tea when I need a boost. Important for me to use American Ginseng as the Asian Ginseng tends to be too powerful/harsh (adverse effects). You can find things that will work for you.

Please do stay in touch and let us know how you are doing.

[Wyebird]

Don’t apologise this is what the site is here for. You don't say what your job entails.If it’s in an office maybe you could send an email apologising for your recent shortfalls at work but it’s due to your condition.

Then explain briefly what it is along with your fears.

You are not asking for sympathy just understanding.

You are young and I truly think only MPN sufferers know what we are going through.

Are you newly diagnosed? Maybe once you get your condition under control you might feel a little better.

What about reducing your hours?

Your manager really must be made aware of your situation.

Sending hugs

[nightshadow]

I don't have anything to add, but sending you best wishes and hope that things get better for you.