hi everyone,
Just wondering if anyone is struggling with the above due to their ongoing symptoms,,,
Has anyone found that it is impacting that much that they are struggling to hold down their job? I think the main cause being fatigue, insomnia and exhaustion obviously alongside our other symptoms, night sweats, itching, bone pain etc…
Would appreciate any feedback
Yes, before I was diagnosed with MPN PV, itching , visual disturbance and heaviness in head back side affected my life. After being on Hydra , feel absolutely normal and lead the same life as others do.
hi Grendall, sorry to hear this, I am like Neela, many years ago my symptoms were impacting on me so much that I struggled to function most days, and being at work was very hard some days, and once I started on Hydroxycarbamide the symptoms were controlled, I still get them occasionally. What did help when it was bad and affecting me in the workplace was that I spoke with my colleagues and HR department to explain how the symptoms affected me and that sometimes I couldn't function properly. They agreed to let me have more breaks when I needed them, and to have a quiet space to sit in and relax for a bit, and when really bad to go home early or come in late.
It would be worth speaking to your HR/manager to ask if you can make adjustments to your daily work routine for when your symptoms are bad, small adjustments can make a huge difference, like lighter duties for a period of time; flexible work hours; changing performance targets; somewhere quiet to sit and relax.
best wishes, Maz
Thanks Mazcd for your own ways of dealing with the situation.This is kind of what I am looking for going forward.
My employer is amazing with me the only downside is it is just the two of us in the office (small individual estate agency) and she is in her 60’s using me to take a back step with her life. It makes me feel guilty as I have been given a note for a month to adjust, accept and starting treatment, I am in week 2 of the note but again feel guilty that I should go back as she will be struggling by herself.
I know I have to look after myself first but it doesn’t stop the guilt on my part…
I’m sure I will get it sorted eventually and I do feel I may have to reduce my hours (which wouldn’t be a problem) and when not feeling well having the odd day off but I need to try and find a balance somewhere or consider finishing work altogether so that we both know where we stand xx
it is difficult for you then as there are only 2 of you in the office, but maybe this is the time that she considers what is best for herself and you and the business going forward, as she wants to take a step back and you are going to have days when you don't feel on top form, now might the time she considers employing someone else, perhaps part-time, to take the pressure off of both of you, maybe something you discuss with her, and perhaps this would also give you the opportunity to cut your hours so that you don't have to stop working completely. Best wishes, Maz
Hi I very much struggle with symptoms and I run my own business the stress doesn’t help 🙈I have weeks where I can cope and weeks where I really don’t,best to try and find a balance I know easier said then done I’m still trying lol.
Hi I have just reduced my hours down to 3 days from full time . Also I have spoken with my manager and we have created a ‘disability passport’ where we documented how the illness affects me and added things like extra breaks and the flexibility to home work if I’m feeling fatigued. It’s been a hard decision which has taken me 3 months to figure out. Obviously I’ll have less income but hopefully will enable me to rest and continue working 😊
HiI have recently applied for flexible working as the fatigue some days is awful.
I wasn’t granted what I requested mainly for operational reasons but I have been offered a slightly bigger window to work my hours than previously ie so I can take a 2 hr lunch if needed.
Will trial this for 3 months and see if it helps.
I work from home so don’t need to factor in commute etc
Glad you mention insomnia fatigue and exhaustion. I find it a balance act to be tired enough to sleep. Then insomnia makes me fatigued the next day. As for work no I won’t have coped. I retired aged 57 and was diagnosed aged 60.As for work maybe reduce your hours. If not take short cuts. My garden isn’t as Tudeh as it used to be. When people visit for the weekend no longer full English breakfast and roast dinner.
Hi Grendall. My job was mentally and physically active and because of its nature , breaks or time out impossible. Despite HU, symptoms continue and so although HR and myself went down the 'reasonable adjustments' route I left work. It was the best thing for work, the volunteers I worked with and myself. I was gutted but I am learning new skills that I am hoping to be able to use. Good luck.
Hi I'm female and the same age. After struggling with itching for several years, it now seems to be under control. Yes I'm on hydrox and also venesetion but found beta alanine has been my saviour. I used to get some short relief from the fatigue and joint pain after venesection but I'm afraid it doesn't appear to get any better now. Listen to your body and nap when you need to. I work but will nap when I get home or go in a hour later.Hope this helps.
Hi Grendel
Yes this has affected my ability to work I am 59 and suffer from the same symptoms you have mentioned.
Unfortunately I am not in a financial situation where I have much options. I have reduced my hours to 30 this gives me a 4 day working week. I did apply for the benefit PIP but was declined hence I still have to work to pay the bills.
It is hard and I do struggle at times however my employer is flexible with my working patterns and understanding my illness
Hi
They declined my claim as they said I didn’t need help from another person to live. I didn’t challenge it due to the letter I received didn’t inform me that I was able to.
To be honest I was that exhausted the day I received the letter I think I just binned it.
Oh my gosh yes! I’m a 43 yr old single mom of 3 with PV and I work full time. I was managed with HU, but am between meds waiting for approval to start Besremi (interferon) and I’m so exhausted, out of breath, and my legs feel so heavy. I just contacted HR to have my case documented and might need accommodations soon. Big hugs to all of you! The struggle is real.
I have not worked in a year as of today. My diagnosis started with a blood clot in my toe which caused extreme pain when walking. My job was very active physically and I took time off hoping my foot would heal.
While off work I got the Covid vaccine which was mandatory for my job. That is when the terrible symptoms started, many of which have persisted. I began having dizzy spells, pressure in my head, oxygen starvation and shortness of breath. I also have bad fatigue, sensitivity to bright light and intermittent blurred vision.
I started HU1000mg/day about a month after diagnosis, and soon after it was increased to 2000mg/day. Shortly after I ended up in the ER gasping for air, shaking so bad they couldn't get an EKG reading, and dizzy enough to make walking difficult. I stopped taking HU but it took weeks before the terrible symptoms lessened.
My blood clot eventually improved but I still have numbness and burning nerve pain in my foot occasionally. Even at rest I still have difficulty breathing sometimes, and physical activity makes it worse. I also have lightheadedness and head pressure, dizzy spells throughout the day, and fatigue at random times. I have difficulty concentrating and my memory is horrible at times. My symptoms get worse when I have to concentrate more, such as activities with large groups of people or tasks that require multiple steps and precision.
I have not been able to return to work due to symptoms, and cannot envision any job I could do presently. Reading or typing causes fatigue after a short time. Talking on the phone often causes episodes of oxygen starvation. Because of this I would not be productive even working from home.
I am supposed to receive my first dose of Besremi today and am hoping it will improve symptoms. Otherwise I do not see a possibility that I will return to work.
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