Coping : how do some of you cope with the... - MPN Voice

MPN Voice

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Coping

24 Replies

how do some of you cope with the depression ?

Not sure what I dislike the most at the moment ......the illness or the depression

I'm hoping the cloud will lift soon and have the positivity that a lot of you have on here ,

That in itself should be uplifting ...

Jk

24 Replies
Helen1952 profile image
Helen1952

It is hard when you're newly diagnosed to get your head around it all and coping with a chronic illness is difficult .

Although I try to be positive I freely admit I'm not all sunshine and light ask my hubby lol .

It's normal and ok to feel down about it sometimes but as you get used to it acceptance comes and you have better days .

I noticed you have an appointment today so hope you get good results to give you a boost .

That cloud will lift and the sun will come out .

Take care and don't be hard on yourself xxx

in reply to Helen1952

Thankyou Helen for your lovely reply

Hopefully it's just a blip . Blood results a little improved which is better than the last time which had gone up to where I had first started so that's a plus. Hope your keeping well too. Jk

Helen1952 profile image
Helen1952 in reply to

Good news about the bloods and hope you feel better soon xx

Its not easy JK - I know - I don't think of it as depression, rather than a low mood because of the tiredness, itching, fuzzy head, etc. It can be very challenging for the most positive of people. I just tell myself it will pass when I get more energy and my spirits will lift once again. Just be kind to yourself until you are feeling better and don't beat yourself up for feeling this way and trust that it will pass. xx

in reply to

Thankyou Indy- Pindy

That's a much better way of thinking .....just a bit of a low until it passes

Take care. Jk

Inca profile image
Inca

It is hard J K ,I agree absolutely with Indy& Helen.

My excellent G P,has prescribed me with a mild anti depressant,which helps enormously on my worst days.I take only when I need to.,no way will I become dependent.Keep up your spirits,we do cope mostly....bad days are inevitable,but they pass and good days return.Best wishes to you,keep positive.

in reply to Inca

Thankyou Inca

I did think about anti depressants but very wary of going that way as I thought it would be a regular thing to take . I might chat to my GP

Best wishes. Jk

harleydavidson profile image
harleydavidson

Hi JK. I have been on anti depressants for years, it doesn't take it all away but it does help me. I wish you happier times. Mel x

in reply to harleydavidson

Thankyou Mel

I will chat to doc about it but not sure about taking something like that

But good to know it helps you and it's something to think about

Tc. Jk

Realtorlin profile image
Realtorlin

Hi JK,

I am newly diagnosed and I can totally relate to how you feel. I usually call a friend when that feeling comes over me, talking to her makes me feel better just knowing someone is there to listen and care. This whole thing is so overwhelming it is a very normal feeling to be depressed I believe. I also read the posts on this site when I am feeling down. There are alot of positive, caring and hopeful people on here that gives me strength when I need it.

in reply to Realtorlin

Thankyou Realtorlin

Your so right about the people on here , it brings much comfort and support when it's needed

Best wishes. jk

rubyrubyruby profile image
rubyrubyruby

Time, counselling, family, friends and seeing others worse off than yourself!

in reply to rubyrubyruby

Thankyou rubyrubyruby

Yes your probably right about time

Counselling is something I'm considering

There are lots on here so much worse off than me that are so uplifting and encouraging which does make me feel that I shouldn't be depressed at all but I will get there eventually

Best wishes jk

rubyrubyruby profile image
rubyrubyruby in reply to

I have had counselling, it did help as I was feeling quite angry and emotional, probably boardering on depressed.

When I am feeling down I think of my friend who in his mid-forties, diagnosed with cancer, 2 young children and been given 3-5 years! Or my friend who died aged 30 leaving 2 children, youngest was 3, without a mum! Then I stop feeling sorry for myself !

You will get through this and come out the other side.

Inca profile image
Inca

I too had counselling at the French hospital when first diagnosed,had heart attack at same time as an artery was blocked.Having been fit and active all my life,all was too much ,really helped me to understand that I was the same 'me',put back some confidence,the anti -depressant boosted me,there is no shame in taking them,and as my French Drs say,compared to the HYDREA etc,it is nothing,and quality of life is paramount,so whatever helps,go for it !! Life is too short to waste being down.Good luck all of you.

MCWolves profile image
MCWolves

Keep your chin up. I was diagnosed 7 years ago and was in a wierd frightening place for a while. Then I realised how lucky I was to be diagnosed and the fact that it may have saved my life. Whist I too have down days, overall I have tried to develop a positivity. I decided to get fitter, and after doing a lot of running in my youth, I started again and in the last year did 2 half marathons with friends and family, raising a few bob for charity along the way.

I still worry, but then the PMA kicks in, you could get run over by a bus tomorrow so live your life and remember there are many people far worse off😃

in reply to MCWolves

Thankyou Mcwolves

Two marathons! Well done , That's amazing and hope your positivity rubs off on me , jk

Mary-Ellen76 profile image
Mary-Ellen76

I totally get this- it's really easy to count the losses and enter the what I call the mental tumbleweed, rather than bathe in gratitude for actually knowing what's going on some days.

I found a helpful psychologist who was into "mindful self compassion", which I have found really helpful. It's about acknowledging our own individual suffering & treating yourself with kindness. They're some good websites & it's worth a Google.

The other thing is exercise (goddamit effort required!). I just find is I move & do something, as hard as it is some days, I seem to scare the tumbleweeds away.

I've worked in mental health most of my life so to actually put my hand up & say I feel down was hard concession to make. I hate to say it, but the theory of what works- exercise, low processed food intake, counselling, a job/volunteer/study role, supportive family/ friends- is a really winning for me. They say the rule of thumb for antidepressants is when the depression starts to attack your physical state- slowed movement, decreased energy, appetite, sleep, sex drive, bowel movements even- because pills are after all physically attacking your brain chemistry.

Lastly I have to say this forum has really helped me as I can see a future with the MPN. Thanks folks!

in reply to Mary-Ellen76

Thankyou Mary -Ellen76

I will google some of the sites and as you say it's always worth a look at different things .

I totally agree about the forum , So glad I found it , Some amazing people on here and I would like to thank them all too Jk

Aime profile image
Aime

Totally understand how you are feeling. Like the others have said we all go through these feelings so you are not alone. My GP gave me sertraline an anti anxiety med which has helped me to put things into perspective. Like Ruby has said too, there is always someone worse off and if I am feeling down I watch some of the hospital programmes and that sorts me out! Also talk to best friends, go out for a coffee or cooking helps me relax and think rationally. Find a hobby that does this for you.

Good to hear your bloods are better, take things a step at a time, you will get through it, accept what you have got and live as happy a life as possible with it. Hugs and best wishes Aime xx😺

in reply to Aime

Thanks Aime

I'm moving house next week so that will take my mind off things!

I send a hug back to you too and wish you well. Jk

Aime profile image
Aime in reply to

Thank you, like hugs, hope the house move goes smoothly, be careful you don't do too much. Best wishes and more hugs Aime xx😺

jeaniej1x profile image
jeaniej1x

I totally understand what you are going through. I am recently diagnosed with E.T. At first i felt relief but bewildered and scared. That turned into a sort of acceptance and i was able to get back to normal. Its now been a couple of months since diagnosis and last week i started to feel "down". I think it was the letter with an appointment for my regular monitoring blood tests that sent me into a tail spin. It made me realise again that i have this disorder. The date is 21st of December so i will worry all over Christmas about the results.

I even started to worry that im not facing the fact that i have an MPN, but am in denial, and thats how i can "be normal" for most of the time. It was getting a bit out of control, thats when i sat down with a glass of my new favourite tipple Amarula, and had a word with myself.

Its pointless worrying about things that might not happen or be true.

We are all lucky that we have been diagnosed and will be monotored, and there is medication that can control our MPN's when needed.

These blood disorders are being researched, and one day soon, im sure there will be a cure.

The only way to live alongside these disorders is to actually let them "have their place" To live life as before, but acknowledge their existance.

Be as kind to yourself as you are to others.

Learn to say "No"

Its not the end, or even the beginning of anything. Think of it as your favourite soap opera but with a new character who will eventually just fit in.

This forum is full of fabulous, supportive people who all know and understand the ups and downs of having this invisible illness. I check on here everyday for my little boost or to look for advice.

Take Care

Jeanie. X

Thanksjeaniej1x

I think I may sit down and have a word with myself too.....

I do tend to think "what if ". And it is silly as no one can foretell the future

Thanks everyone. I feel more uplifted today and that is a good start , hope you all continue to do well. Thankyou

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