In a rut

[Purplelisa]

Why do I feel I can do something ie a coffee morning to raise funds, I get excited about my ideas then get in a rut and think what's the point of anything, I feel I'm unable to do anything one minute but able the next, I always have a downer on my ideas or anything I think I can do but then say to myself I can't there is no point, I'd rather hide away and do nothing. Crying is all I'm capable of, when I worked I was so energetic and confident, now well that's a different story.

[siblehed1]

Dear Purplelisa,

Sorry to hear you have these 'down' times. Of course I don't know all your circumstances but understand that you have been diagnosed with ET. One of the causes of your depression may be lethargy and tiredness. This is a factor in all these blood disorders. I would recommend, first of all, get all the information you can about the condition and how to cope with it (I've found the booklets produced by Leukaemia Research on 'Myoproliferative Disorders' and by Macmillan Cancer Support on Fatigue etc. very useful.) Secondly, pay attention to your physical wellbeing (good natural diet, regular exercise, rest). Thirdly, planning - plan each day and include interests and activities that are 'outside yourself', whatever they may be. Any creative activity is good - discover your talents! It sounds as though you may be mildly depressed and this may be why your thoughts are sometimes sabotaging your good intentions! If so, see your GP and get some help with this. I've suffered in the past with this, and the only way through is to re-programme your thoughts towards the positive, self-enhancing ones, and re-write your script to say 'I can and I will'. You are a unique human being, as we all are, and you deserve to be as healthy and happy as you can be. Plan and do one day at a time. With very best wishes, Jan.

[malachy]

Hi Purplelisa, so sorry you have been feeling down and siblehed1 gave brilliant advice, please let your doctor know how you are feeling. Also, if you want to chat or just offload please inbox me and we can exchange details. Take care. xxx

[Purplelisa in reply to malachy]

How do I inbox you xx

[malachy in reply to Purplelisa]

Hi Purplelisa I have sent you a message with my details, really glad you are having a better day xxx

[Aime]

Hi Purplelisa, So sorry to hear you are feeling so down. I went through a time when I was getting tests for polycthemia, my mum and dad were both ill and died - I had to put them in a home also which made me feel guilty. I felt so bad, I didn't want to carry on going and my husband dragged me kicking and screaming to the doctor. I broke down in the doctor's surgery and he said to me I am not surprised you feel you are not coping - you are not superhuman. After a lot of persuasion he put on to sertraline (anti-anxiety tablets). I felt like a weight had been lifted off my shoulders once I got used to them.

I was able to see and put things in perspective and although I still have my down times I can usually work through them. The folks on this forum are fantastic. As suggested please go and see a sympathetic doctor, try and do things you enjoy - some will be a struggle if you are constantly tired and suffer from fatigue but you will feel better. I am lucky so far I have managed to keep working - I don't really have an evening. I come home from work, eat, wash and usually in bed by back of 8 but I can keep going the next day. I also do work with young people (voluntary) and go to a hydro pilates class once a week as I have a lot of arthritic problems also. Some days I struggle to do these things and some days I don't manage to.

Please don't feel you are on your own, keep in touch on the forum. Ask Maz for a buddy to speak to or take up Malachy's offer. Aime xx

[linds]

Hello Purplelisa,

Don't feel alone, how you are feeling is very familiar to me also. In the end after getting some rather annoying news (I am now MF) I realised I needed a bit of help to which my GP heartily agreed and the anti-anxiety pills are doing their majic. Also it seems to have given me back some energy that had just evaporated. I still can feel down but not desperate. Please get some help and do keep in touch with us all.

Lindsx

[amarylis]

Hi Purplelisa

Thank you for posting how you are feeling, it can't have been easy, and as Linds commented, in the last reply, your description is very familiar to many of us. It really does help for us to know that we are not alone in feeling "low" and exhausted.

I have had ET since 1996 (at least) and for many years it barely registered, but in recent years I have been feeling much less able to cope (both physically and emotionally). Life can be exhausting - at times - let alone with the added burden of an MPN. In the past few years I have lost both a much loved younger brother and more recently (March) my Dad. Unfortunately, as we often look fine, people don't always take our condition into consideration.

Be kind to yourself, visit your GP and explain how you are feeling, don't expect to be superwoman, there are times when you will have energy, but quite often just getting through the day can be quite enough of an achievement.

I work in a school, by the end of the day, I am often exhausted, so I don't demand too much of myself in the evenings. By the end of a term, I am often on my knees, but am very fortunate to have the holidays to recover. We will all have different ways of coping, and if it is necessary to be given the additional help of anti depressants or anti anxiety pills to give us a helping hand then so be it. We don't question the need for other forms of medication for our conditions, so if this is what your GP recommends take their advice, it certainly seems to be working with others.

All the very best and thanks again for sharing

Amarylis

[LouisePRV Volunteer]

Hi.

Not sure where you live or what your circumstances are, or how long you've had ET, but have you spoken to a few really good friends about your blood cancer?

By the way, blood cancer is just a term, look at it as you would diabetes - treatable but not curable.

When I was diagnosed with PV 5 years ago I cried a lot too, until one day I decided that sitting around feeling sorry for myself wasn't going to get me anywhere. You do sound as though you're depressed. I just gave myself a strict talking to, but that wouldn't work for everyone.

I email 8 friends with a simplified version of what was wrong with me, how I felt, what the prognosis was etc.

They have ALL BEEN WONDERFUL. They phone me and ask how I am, anything they can do, all offer a shoulder to lean on and a hug. Works wonders. I'm also lucky to have a lovely husband.

Exercise is great too you know. I know it's hard to get out and walk when you feel knackered and rotten, but a brisk walk for as far as you can manage - or as brisk as you can - will get the old feel good hormones going and honestly make you feel better.

Go ahead, do that coffee morning, that really will cheer you up.

Lastly, I would suggest you don't discuss with your GP who will doubtless prescribe antidepressants ( do you want to go down that road?) but with your haematologist.

If he can't help, change your haematologist, some are utterly useless as I found out myself. I moved to another hospital pronto .

Hope things get better for you.

Louise

xxxx

[Armanimick]

Just want to say that everyone goes through these kind of feelings sometimes in their life...we are all human and all have same feelings but at different times. Your really not alone... You can give in or fight, it's not easy when your low but if you force yourself to do a small thing on your to do list, just see how great you will feel, that's how I handle things, small steps and a massive to do list.... Please fight it, go to the docs and explain, they've heard it millions of times, truly....the more you don't the more you won't be able to so please....do one little thing and another and another and if one day you really can't face it...get into bed, zone out watching TV, there is no harm in that either but not everyday, please........you do it and I will continue to take my own advice... Michael Jacksons song springs to mind.... You are not alone ! Oh and another thing, get some music on and blast it out, amazing the power of music!