Two years into my PV and I've now got into a noticeable routine; with, thankfully, my blood tests at 3 monthly intervals, I don't give them (or my PV) a thought. Until the night before "The Blood Test". Then I find myself being quiet, reflective almost. My wife asks "you ok?" to which I respond "fine, thanks". Then on the day the anxiety I guess kicks in; feeling nauseous, vitals turned to mush and a sudden weakening of the bladder. Needle in, job done, see the doc, told the results "everything's fine, no change of tablets, see you in three months". Instantly - literally - I feel fine and the black cloud moves away. Bladder tightens up, vitals back to normal, feel like I could eat a horse. Or a Tesco 'burger (no, not really - just thought I'd slip that in.....).
Then as I'm walking out of the department, just can't stop the tears welling up. Aren't we funny people......
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KevinJH
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Hi KevinJH, I think it is not easy going for any of the tests for PV or other MPDS cos there is always the worry something has changed. I think sometimes the thought of pain is worse than the pain itself and with any needles I try and breath out and relax as the needle is going in. I have had a lot of cortisone jabs over the years - depending where they are, they can be a bit sore. Hope my thoughts help you.
Not quite as anxious myself ( every 4 to 6 weeks for test ) but I suppose we all live in fear a little bit, of being told our results are slightly worse. Quite normal I'd say.
Hey, similar to me! In my case: a) makes you think about your own mortality b) but what a sensible coping mechanism...only once every few months! thanks, just off for my bloods and you have saved me having to do a stiff-upper-lip to my husband...
Hi KevinJH, I feel exactly the same before my blood tests, sick to my stomach with fear. I think its always the thought that this could be the time the results are not good and we get the news we all dread. Like Jane13 I put on a stiff upper lip for my husband but I start getting really keyed up about 3 days before the test. I don't think it will ever change, just part and parcel of living with an mpd.
Hi kevinjh, I used to be the same and would pace the waiting room and corridor while I waited for my results. This stopped 3 years ago and i'm 8 years in with PV. I think I finally realised that I couldn't change anything so I may aswell give up stressing about it. I hope it gets easier for you. Mel
Aye you struck a chord there Kevinjh. I used to stress pretty bad days before my appt and the dreaded test loomed large but after 6 yrs ive come to terms with it even though now ironically my results are changing more so Im getting a step closer to needing my BMT.
I was going to my regular appts for years expecting bad news. I dont know why I feel more chilled now, I guess its a case of what harleyd says - you cant change the outcome it will be what it is, but everyones different so you may never stop stressing over it no matter what others say. However I think it must help to chat about it and share experiences which wasnt available to most of us before this forum kicked off.
So I do hope you can take some positives from the responses which might shortcut the stress process for you because it doesnt help you get the best from your appointment and if something does change it doesnt always mean bad news it could be for the better.
When I was first diagnosed and had to have weekly phlebotomies I did stress somewhat before going in for them. Taking out 500ml of my blood seemed excessive! LOL. For several years I have had biweekly tests and am so used to them that it is nothing to watch the procedure and marvel at the force of my blood that shoots into the vials. How has that happened? Just getting used to the fact that it has to happen, I guess. Perhaps your stress originated with something that happened when you were a child and is an unresolved issue, do you think? Such circumstances are quite common for people. I do feel for you and hope that you can overcome the problem. Feel free to contact me further.
Hi KevJH, I think what harleyd says is a positive way to look at things. It doesn't help any of us to stress about something which hopefully will never happen or it might happen in 10 years or 1 year - we just don't know. A friend of mine, who went through breast cancer and other things always believes that a positive mental attitude can make a difference to the outcome and definitely the way in which we deal with it.
I have every sympathy for you. I plod on with the tests until some new investigation is suggested because "something might have changed" and then I put on the brave face for family and friends but inside I am worried sick - I think I need to pay heed to my own and friend's advice!! We are all human and I think, as Jane13 says it makes you think of your own mortality. I think we are lucky we can share our fears and feelings with folk who understand. Best wishes.
Thank you for your post KevinJH, I believe you have echoed what many of us feel. I certainly get anxious before hearing my results and so far relief that they are ok. I have been diagnosed less than 6 months so I guess I will get used to it !
I'm pretty new to PV, I just turn up and try not look at the needle (hate them)the only think I worry about is are my meds Interferon) working now! Other results haven't crossed my mind!
Hi KevinJH, A good question,after nearly 14years I still get anxious before a blood test as I wonder if anything might have changed, It's just the way we are, and while our conditions can remain under control for years you just never know if things will change or not. We just learn to live with it, which some days is easier said than done.
I find that I am often more chewed up after my appointments and take a few days to settle down - I often wish I had asked questions and run over things in my head.
I always took someone with me to my first few appointments which was nice, but now mine are more frequent and can wipe a full afternoon and early evening out with travelling time and time spent in the hospital I don't like to put on my nearest and dearest, especially those with work commitments.
My employer is understanding of the need for time off to attend but it is my appointment afterall, can't expect my hubbys boss to be quite so flexible.
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Does anybody else feel like your clinicians think you are talking out of your backside when you tell them how ill you feel?
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