Fatigue

[Daisyduke40]

Has anyone had to give up work due to fatigue and other side effects

[Lilliegarden]

I haven’t had to give up work (yet) but fatigue is a massive issue for me at the moment.

Thankfully I work from home & can do all my work from home, but am looking into requesting flexible working ie working my hours between 8am & 8pm which I understand HR will need to consider as MPNs are considered a disability according to my GP.

By 2pm I’m pretty much good for nothing but seem to be ok if I stop for a couple of hours

[Cakeface]

Yes, I was struggling so much with fatigue that I was absent for weeks at a time. The school was in a redundancy situation so I volunteered. Fatigue is still an issue but at least I don't have work to contend with too

[Jynx93]

I am on Peg and I am constantly fatigued. I’m 61 and have no intention of giving up work. I work 2 jobs and don’t think I could cope with staying at home all day. I prefer to keep busy, that’s just my way of coping with it. People have different ways of coping with side effects as they are personal only to them. Everyone has to do whatever they consider best for their own health

[gset]

Yes I had to give up work as couldn’t do the hours anymore and stay well. Once I reduced my stress my symptoms improved dramatically. I don’t regret giving it up as my symptoms and fatigue are manageable now.

[Uzza]

Yes, I have...but I have prostate cancer as well.

[Bobthecob]

Hi Daisyduke40, I have had ET for 22 years and during that time really struggled with fatigue. I went from full time to three then 2 days a week. I have had to give up work 2 years ago and despite the financial implications I have found life easier.

[Merc350]

I am facing that situation now, not only do I deal with fatigue but I have chronic pain in my arms and legs caused by the PV - despite being on low dose pain meds after spending years trying alternate routes, it is always present and debilitating. I started on Besremi a few months ago, will be increasing to 250 mcgs this week. No symptom relief yet.

[Heidi-W]

Yes sadly I'm contemplating ill health retirement from the NHS due to the fatigue and being anaemic with my post PV MF. I've also got Hip OA pain issues too and started having severe angioedema/urticaria/anaphylaxis and I just don't feel well enough to be caring for people safely any more. I'll probably need a bone marrow transplant in next few years once I get transfusion dependant. Its a really hard decision after so many years of training and the guilt is huge, but I'm hoping to do some volunteer roles and focus my energy on my young daughter. Good luck with your decision too.

[clubdino]

Hi there. I have reduced my work hours to 30 a week. It would be ideal if I didn't have to work at all but that would require that I get a roommate so I could make ends meet. I decided I rather fight through the pain and fatigue as long as I can because getting a roommate is the last thing I want. Adderall helps with the fatigue and Cymbalta has worked miracles with the pain.

[ksos]

Hi -I'm 69 and have had ET for eight years. For the first four years, I was able to continue to work full-time, despite the fatigue. But then, as the fatigue gained ground, I had to keep reducing hours until I was at 15-20 weekly going into the pandemic. I worked for myself so was able to be very flexible. Even so, during the pandemic, the fatigue got so bad that I finally retired last December. It's been much easier to manage since I did. Being able to rest when I need to -- whether it's a couple of hours or a couple of days -- gives me a steadier base to work from. While fatigue is still a bear to deal with, I generally feel better than I did when I was working. Good luck with your decision.

[chelsea1]

Hi Daisyduke40 and I hope that you're feeling well today. As we all know, this condition is pretty much about taking each day as it comes. You can wake up feeling relatively well today, but tomorrow you can be struggling to get out of bed! I was diagnosed with ET/PV in 2009 and over the years, I have found that I have had to reduce my working hours from full time to 2 days a week. I have been one of the lucky ones since currently I do not have many of the other symptoms to contend with (bone pain, swollen spleen, etc.) but the chronic fatigue has been an absolute nightmare and has affected many of my other relationships too. I guess I'm 'clinging on' as much as I can, since I don't have any insurance policies or savings that I can fall back on and my pension is only a small one. Therefore, I need to continue to do what I can for as long as I'm physically able. My consultant at Guys has been amazing support to me. The last winter was the worst for me but I seem to cope far better during the summer months. Does anyone else find this?? Currently, I 'control' my fatigue with beetroot juice and if this doesn't work, a just give in and rest. I wish you all well here and I hope and pray that you are all making the very best of your lives for as long a you can. This is a challenging condition but 'sharing is caring' and this is definitely what we do here!

[Daisyduke40 in reply to chelsea1]

It's awful to think most blood cancers are incurable and most take chemo yet side effects not always good, its sad no insurance and a small pension and you still have to work to make ends meet where is financial help ???

[Daisyduke40 in reply to Daisyduke40]

God only knows, known as a disability but no help for us stay well x

[Abernathy]

Hi Daisyduke40.I am coming to a crossroads too. I am 55 and I have CLL diagnosed Dec 2019, luckily still on watch and wait. I have had several illnesses since, all of which have left me fatigued.

My new ok which my family now know means, I am tired but ok to crack on.

Unfortunately, the bouts of severe fatigue seems to be getting worse.

What I am able do that triggers my fatigue is reducing too. The speed it can hit is frightening.

I am off work again ATM, have had meetings with workplace health, manger. As my role has changed and they wish me to back to the workplace (160 ish people). Lol, I can't get out of bed some days never mind dive safely.

I don't post much, but having to ask the nurse to open the door for me yesterday after some blood tests. Made me look for support here again and saw your post.

I have my 3 month check with Oncologist 15/11/22 so I will be asking what they can do to help with my fatigue before I speak to my Union rep for help around medical retirement/redundancy or whatever else is possible.

I will update after the meeting.

Stay safe, keep smiling

Pete.