Steadily getting worse & worse with anxiety/depression.
Woke up on Saturday Feeling terrible
Unable to cope & wanting to vanish.
Had a tough time in 2024 with managing a full time job, mum dying in late 24, fatigue with my MPN.
Not sure what is the right decision for me as people depend on me?!
Not much left in the tank!
I want you to know anxiety about chronic illness is very well documented. Are you getting any counseling or do you have someone you can reach out to in person? Are you able to shift your focus and take sometime outside? I think I’ve read your posts before and you didn’t want to bother anyone. Please know we all need to get ongoing help for anxiety and depression. Are you on any medication and if you are maybe a change is needed. My questions aren’t meant to upset you just needed more information
hi again. Just looked back on your previous posts. Are you still on HU? People suggested it could be the reason for your depression.
Hi I am on 3 x 500mg Hydroxycarbamide per day
They have just increased my 30mg of citalopram to 30mg
This weekend has been terrible
Such massive swings in mood & anxiety from despair to I don’t know where?!
Thanks for the message
Sorry for that. Where are you from?.
Sorry to hear that the anxiety/depression problems continue. Glad to are reaching out. You do not have to be alone with this. Many here have been through the same thing.
It may be that you need a change in treatment plan. Citalopram works for some people but not for everyone. There are other options that may work better for you. It is also common for pharmacotherapy alone to not be enough to deal with anxiety/depression. There are specific counseling interventions, such as CBT, that are very effective. It is important to find a skilled professional if you wish to pursue this option.
Wishing you success moving forward. Have confidence that things will get better.
I see you are in the UK. My haematology Dept is closely associated with the Macmillan Charity, and Macmillan have a stall in the Dept. Macmillan offer a range of support options to MPN patients - I have been offered physiotherapy, free Pilates sessions and Counselling. Of those, the counselling was the best. I am eternally grateful to the counsellor that they introduced me to. She changed my life! I was impossibly anxious, and she has helped so much.
Can you find a Macmillan group local to you? I gather there is another Cancer support charity called Maggies, I don't know whether they also offer counselling...
Hi Maggies Centres do offer counselling and are very very good. I found it a very calming space where I was able to open up to someone other than family and I was really surprised how much I shared. I think in my particular case a lot of the anxiety comes from the thought of not being in control, you can’t “fix” it.
They offer a range of sessions/workshops and group sessions. The centres have a timetable of events which included a blood cancer session with others who share same diagnosis. I totally agree they really do a great job.
It sounds like you've had a really tough time. Although you have people who depend on you, it may be time for you to depend on them for a bit. Throughout our lives, we all fluctuate through stages of needing support and being able to support others and, rightly, you could do with a bit of extra help at the moment.
Hello, so sorry to read you are struggling. You have had a lot going on , it is good you have reached out on this platform. From past experience with Citalapran could it possibly be taking its time to get into your system. On starting this medication I was told that I could possibly feel worse before for a short while. I found it helpful not to look too far ahead, just do the next hour or the next half a day. Please think about contacting your GP or MPN care team, help is out there. Please let us know how you get on.
Please go to your doctor, if you can't explain, show him/her your post on here. You have tried, but now deserve some help.
Just to rule out all possibilities, get your gp to check all your vits/ minerals/ thyroid.
If that’s not easy to do, or if you prefer, you can also get home test kits which are really easy to do.
Test Vit D, B12, folate, full iron panel, TSH, freeT4, freeT3, CBC.
You need to get the results with ref ranges. On Health unlocked there are excellent groups for B12 deficiency ( folate/iron) and thyroid issues . They can help you understand what is ok and what is not. With some things, being in range is NOT the same as being optimal for good health.
The higher your vit D the better. If it’s low to middle, probably helpful to supplement. Test first.
Obviously look at your diet. Avoid alcohol, sugars , avoid too many carbs, seed oils, processed food for starters. Cook real, traditional food.
Switch off the TV especially the news. Don’t listen/ watch stuff that brings you down.
Try and get out in nature every day for your vitamin G ( green). Add in some exercise, anything. Walking is fine. When the sun shine’s, sit out in it even for 10 mins. Don’t isolate yourself, talk with someone every day, even if it’s a stranger out walking their dog. Smile, even if you don’t feel like it. Find things that make you laugh.
Plan something nice, even a day out somewhere.
Confide in a friend/ relative so they can help you. A problem shared is a problem halved.
There are going to be some good things in your life, however small. Whenever you feel down, express your gratitude for them, out loud . Be thankful. Think positively. Things will get better.
Wishing you all the best x
I'm sorry for learn for what you are going through. Hope some treatment plan can bring least relief and life can be beautiful again for you. Wishing you well.
hi pappafraser.
You have my sympathy. I too have been in a deep trough of depression alongside anxiety.
Please seek help before it gets much worse.I understand the mental, emotional and physical toll it takes from you.
Yesterday I googled psychotherapist's in my area, by tapping on their profile ,there is a brief summary of the help they can offer for particular cases which is very helpful , some also offer a free short session to acquaint yourself with their methods.it’s important to trust your therapist
Please reach out to someone to get help. Get back to living.
My very best to you. Sandy x
Pappafraser I think so many can identify with what you have described and have been there at one point or another throughout this MPN journey. Anxiety and depression can become a vicious cycle to the point you wonder how you will ever climb out of the hole and live a normal life again.
You have already received so many great suggestions from folks here. It's hard to even be able to try some things that might help sometimes because the anxiety is so strong you may feel stuck, but please try to push through it and find a professional to chat with.
You might find someone online if going out seems too difficult. Just having one person you can talk to where you can make it all about you, share all your fears, anxieties, etc, and not feel guilty that you are focusing on yourself, can make a world of difference and truly help you to feel better. Sometimes we think we need to be strong for everyone around us, we have others who depend on us, and we don't want to make conversations all about us to get the support we need from friends and family, so having a therapist really helps so you can make it all about you for an hour each week.
You are worth it, but only you can take the first step to getting yourself well. Make yourself a priority. I hope you can find some peace and relief.
Reading your post has really touched a cord with me. Especially when you say ‘everyone depends on me’, losing your mum and the effects of fatigue.
Over the last year I have learn’t a lot about myself, not only about my own personality traits and how I lived my life (fully, positive, caring, always wanting to help and fix other, be happy) but when the body says ‘No’. The chronic fatigue😩!
With support from the Macmillian team; managing fatigue (pacing- physically, mentally & emotionally); psychological support on how different my life is now from before my symptoms and diagnosis; a support worker who has introduced so many different things into my life from self care to all kinds of meditation, support groups.
One thing I have learnt is to let go. You can’t fix everyone and everything. To think about and acknowledge your own feelings and emotions, your own needs. Something I have never done is put my own feeling first.
It’s time to put yourself 1st! It’s ok to put yourself 1st. You have been through a lot and trying to cope on day to day basis adds to your anxieties.
I have found YouTube a great source of information, from understanding my condition more, resources on managing fatigue, meditation especially hang drum.
Please reach out to Macmillian but also reach out to your MPN team as it maybe your medication is making you feel this way as this can be a side effect of your treatment.
Hope this is of some comfort for you and helps you on a way forward.
Hi Pappafraser, ET jak2. I am 45 with 2 young kids and a wife who depend on me. It’s alot at times and sometimes even are closest loved ones don’t understand. I struggle with the anxiety about half the time. My health anxiety is the worst. With every new symptom I fear I have some other chronic disease thats going to take me away from my family. I started therapy in January. My therapist was blown away by what I had been shouldering the last few years. Every one of us on here carry this. You are not alone and you can do this. I am learning the old cliche take it day by day is a real thing. Take the good days and run with them. The bad ones, give yourself lots of grace because you deserve it. You will be in my prayers. God bless
Hi. I’m so sorry you’re feeling this way but it’s completely understandable given your situation. When I was in the worst throws of anxiety & depression, I was getting on medication but still what really helped was talk therapy a couple of times a week. Having a supportive professional made a huge difference. Adjusting your Citalopram to a higher dose may take awhile to go into effect. With most of these meds it can take some adjustment in medication and/or dose. But you’re under a lot of pressure and I strongly encourage you to find a counselor to help you on a frequent basis if possible while you’re in this current condition. Sending you caring thoughts & compassion. Katie.
Hi Pappafraser, as you are in England you will probably have been assigned an MPN nurse who will have links to Macmillan. It might be worth contacting them to get some quick assistance. Also have you told your Haemologist about your anxiety?
hi
I am also in England and was diagnosed with ET Jak2+ nearly 8 years ago. My husband had just died of PSP. Recently I underwent chemo radiation for rectal cancer and found my main problem after that was depression and awful anxiety spending most of my time in tears. I still suffer from scannitus…… 3 monthly scans. I have joined the local Cancer Care group in Bury where I live and find that very comforting especially now that I have started counselling. Share your burden the best way you can…..you are not alone and all the best
planting
Just want to say that the anxiety from this chronic disease and all of it's effects have been the biggest challenge. Even with the terrible physical symptoms, like fatigue, the mental and spiritual drain has been the hardest to overcome. Dealing with everyday life, like problems with work, finances, and a medical system that often seems incompetent and uncaring is hard enough. Add crippling fatigue and anxiety and it feels like the entire world is crushing me at times.
As already mentioned, citalopram may actually increase anxiety temporarily. For some, this anxiety won't improve and you may need to eventually seek other remedies. HU can definitely cause or increase anxiety, but I understand you may have limited options since your ET needs to be controlled.
Others in this post have provided lots of good advice, especially talking to a professional, friend, or even a stranger. If they don't help, talk to someone else. It's hard to take that first step and reach out, but you can even do so anonymously. Personally, I've found a few things that help me get through the day, or at least the next hour. Get out in nature and observe the flowers, rain, or whatever. Sit for a few minutes and focus on breathing; let the negative thoughts appear, then roll off of you. Amaze yourself by reciting what you've already been able to survive. I remember some of your previous posts, and you've already overcome a great deal. Opposite of you, I failed HU and am on interferon although struggling with things like the breathing issues, fatigue, and joint pain you described previously.
Your responsibility to care for family surely magnifies the anxiety, but please take a little time for yourself when you can, even for brief moments. Best wishes and please let us know how you're coping.
So sorry to read your post. Are your Haem team aware of this struggle? I am sure they could make the appropriate hospital links for you. If not, your GP. Referral to counselling could help. Please don't feel you have to deal with this alone. As mentioned by others a local Maggie's Centre could also help.
hi Pappa
Please do not let pride stop you asking for help or telling people close to you that you are struggling at the moment. I lost my mum to COVID right at the start of the pandemic and also ended up moving, another highly stressful event. I started to get panic attacks for no apparent reason. My GP was wonderful and prescribed tablets which stopped the anxiety in a record amount of time.
You will be surprised that if you told friends and family, they would probably say that they are suffering as well. I just hope you’re not too proud to open up and let others help you.
Good luck
Jill
Pegasys and anxiety
anxiety 
Left foot in pain tingling sensation going up my leg
Anyone with Chronic Idiopathic Myelofibrosis?
