Has anyone noticed they are depressed or sad more often then when they didn't have an MPN? I've never been depressed before or felt so down about my life.
Maybe, part of it is the pandemic: I'm making less than last year, can't do much, can't travel, etc. Adults kids are at home working or taking classes remotely, husband is home teaching remotely, etc. Little privacy.
At 62, I feel like I should be more financial successful, more well-known in my field, and not someone dealing with fatigue from PV and waiting for the "right" time to start PEG.
Hopefully, I'll feel better tomorrow.
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Elizka
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Hi Elizka, I am sorry to hear that you are feeling like this, I think there are many people feeling the same, and it's probably a combination of having a MPN, being shielded and now out of it, and life still not back to normal, and of course the uncertainty of knowing when things will get better and we can go back to being normal, so you are not alone, but it isn't nice.
We do have some great podcasts that might help, they were recorded specially for people with MPNs to help us through these strange times, full details here:
It might also help you have a buddy to talk to for some one-to-one support and advice, a buddy is someone who has the same MPN as you, and takes the same medication (if you are taking any). Contact is by email, phone or both. It can help to be able to talk to someone who understands how you are feeling about your MPN, if you would like more details please email me at buddies@mpnvoice.org.uk
It is normal to feel depressed when dealing with a depressing situation. You outlined some pretty clear reasons to feel down. Dealing with the MPN on top of COVID social isolating is rather a lot for many of us. Mazcd is 100% right in suggesting finding someone to talk to. The one thing you do not need to feel is alone in dealing with this. Sometimes it really does help to have someone to talk to who understands what it is like to deal with a MPN.
We have all been there with feeling down at times in dealing with the MPN. This is my coping list.
1. Support from my family, friends, and faith community.
2. This forum (my friends and MPN Family)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
Not sure why you are waiting to start PEG-IFN. Expert opinion seems to favor starting with treatment for MPN regardless of the COVID situation. It may be harder to access appointments these days, but it can be done. If you need to start PEG-IFN and are ready, then push to do so.
I think it's quite understandable to feel depressed when suffering from a serious illness. The first two replies here have given some really good suggestions but I would just like to emphasize that you can keep asking for support here. I'm 59 so similar in age to you and I also think of missed opportunities and what I could still be achieving if I wasn't so fatigued. I try to be accepting of my situation (I am newly diagnosed with MF, after 19 years with ET). When I feel low, I have a good cathartic cry then try to move on. Best wishes to you.
Elizka, it could always be worse, cheer up! I am a teacher in Hungary, no help, no shielding, no distant learning. I have to come to work and be exposed to the virus every day. We have 700 teenage students - many of them not wearing a mask. I have PV, so I do worry a lot, but I try to keep my immune system strong, do sports and eat healthily. And pray that we are all spared. I wish you the best!
Hi, I also try to be optimistic though it is difficult sometimes. I am determined as I have Jak2 ET that I will make the most of life. I was given a 15 year from diagnosis, 6 years ago, life expectancy. I hope this is not correct but I am determined not to let the bad days get in the way. Hope you can soon feel brighter, wishing you so anyway. As Maz says this is a great site as here people really know how we try to manager our daily lives with these conditions. Take care.
I think it could be worth you getting a second opinion about life expectancy. ET doesn't usually come with a short prognosis; when I had it (I now have MF) I was told I could have a pretty much normal lifespan.
Thanks, did you have the same diagnosis that the spleen was overproducing too many red platelets? I have to take 21 Hydroxy per week which doesn't affect my wellbeing but feel it might affect life expectancy. I will check this again if I ever get another consultation, thanks.
My bone marrow was producing too many platelets. I was on Anagrelide for the first two years, then Hydroxycarbamide for 17, to which Anagrelide was added for about three years. I've never heard of HU shortening life, my understanding is that it's a very long established treatment. I think many people are fearful because it's chemotherapy but in my experience it's a good drug for those lucky enough to tolerate it well. Do check out the life expectancy thing, rather than spend the next few years wondering. Best wishes, Jennie
Hi Elizka, yes I have ET & been through some very worrying times with it . This blood condition makes me feel, quite lonely & isolated & especially more so with the present Covid situation. Try & find things to occupy your mind & it's helpful to chat to people with an MPN. Good luck.
So sorry to hear how you are suffering. Keep in good contact with our lovely forum and please do not feel alone. O am also 62 with ET and on hydroxycarbamide.!Keep in touch with your own feelings. You may like to tune into yourself, give time for relaxation, music, programmes reading, meditation. Treats that lift your spirits.
Keep in contact with friends too so you have human conversation. I wonder if your gp might refer you for some counselling too?
Hi Elizka. It's normal to feel that way. Mazcd and hunter5582 have both given excellent suggestions. I myself was feeling exactly the same way a few years ago and my GP referred me to a counsellor for a course of CBT (Cognitive behavioural therapy) and it really helped. CBT isn't just going to see a counsellor to talk about your thoughts and feelings - I was given weekly 'homework' to complete. It teaches you to be your own therapist, and to better cope with negative thoughts.
I don’t normally feel down but with everyone at home and no privacy I realise I don’t get anywhere to go to have a good cry or simply to allow myself to not put on a front . I think lack one’s own space can build up a huge amount of emotions inside . I find it’s definitely harder since lockdown. I hope you feel better soon x
Sorry to hear you've had times when you feel uncharacteristically low. I think the present situation with Covid is having such a profound impact on our "normal" lives that it sometimes can seriously undermine our usual coping strategies. I believe that aside from the actual risk of illness the emotional impact of covid is also massive: as people we are not designed to remain in a state of fight or flight for long periods of time & yet the constantly changing situation with guidance and the uncertainty about an end point, plus the health implications of covid on those like us with health conditions, really chips away at our resilience. I find I fluctuate from feeling great to suddenly feeling really isolated & trapped as I did these last 2 wks & I've had to really battle my demons.
I think the present ongoing lack of possibility for spontanaity; a lack of freedom to plan a nice break away; the restrictions about eating out and most significantly the restriction on meeting with and physical contact with friends and family are HUGE. We need human contact, hugs and compassion, we need things to look forward to and hope for and we need little pick me ups every now and again. Doing without these on top of shielding and an MPN is REALLY hard. Just know you're not alone in feeling as you do and that a virtual.hug is on its way. I hope some of the excellent strategies above help you find sparks of joy but I just wanted to empathise and say it understandable to feel as you do but I hope you find a way through. Remember on this forum there's always a friend - we are here to look out for each other. Take care 🤗🤗
Hi Elizka, Sorry you are feeling depressed. I think what you are experiencing is more related to Covid-19. The virus has put us all in a spin. As a matter of fact I had to go on medication for depression. I will tell you I do feel much better. It maybe some thing you should speak to with you'er Doctor. We have enough stress with MPN you don't need to add to that.
We all say “things will never get back to normal “. But that’s not a bad thing. If things always stayed the same (Normal) there would never be opportunities for change and change means opportunities for improvement and hope and for life to get better.
Talk to your family openly and honestly. Not easy to do but sometimes necessary. Explain you need time completely alone. When you go into your bedroom with the door shut that means everyone stay out. If there’s an “emergency “ sounds like your family is all old enough to deal with it! If you don’t respond they WILL find a way. Sometimes we women tend to think we are the only person who can solve problems. It’s amazing what even young kids can do when they have to. Don’t give in to “but if you loved meeeeee....!” If you can’t take care of yourself how can you possibly take care of others? Remember the airlines tell us to put on our oxygen mask FIRST! If your “unconscious “ you’re no help to anyone.
You made the comment about being more well known in your field so that tells me you’ve been very successful. How did you get there? It certainly wasn’t because you just stood back and took on everyone’s problems! Does the family truly understand MPN? Give them literature to read if it’s hard to have a discussion. Family can be wonderful but such a pain the butt!!!!!🤪🤪🤪🤪. Hang in there with us. 🌺🌺🌺
It's an awful time right now having our freedom taken away.
My husband has post PV MF this doesn't get him down but my god covid has dragged him down so low.
He started for a new company day of lockdown never met anyone in person. It's so frustrating for him he's used to be on-site but stuck In 24/7 has been challenging . He feels lucky to be in work .
There's nothing to look forward to at the minute no holidays are seeing family it's so hard.
The winter months don't help at all.
We just have to try and be positive which is so hard
With our negative news.
Keep strong and hopefully there will be light at the end of all this.
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