living with mpn

[Chinaplatejules]

just wondering (I have many questions)do other people get anxious when something out of the ordinary happens in their lives eg routine being put out, visitors coming to stay a few days, I am finding I am turning into this person that yust needs their own space left alone, I am not antisocial because I love going out …when I am ready, and catching up with people but love it when I get back to my own space, it this just me or is it normal?

[Barbiebreath]

I think that just comes with age! 💕

[hunter5582]

We all react differently to stressors. Having a MPN, particularly at first, can be a major stressor. While I do not find changes in my routine to be stressful, there certainly are things that cause stress. Sometimes, despite being very social, I like time alone. I find it very calming to spend some time in my "cave." Providing that the anxiety is not too high, then spending some soothing alone time seems very reasonable.

[Mirabellegage]

I get this - it does get a little bit extreme when I’m tired though. I think you’re describing being introverted. I need time alone to increase energy. Extroverts more naturally feed their energy from other people. Introverted doesn’t mean that you don’t like people you just need to be mindful of the energy that it can take. I have definitely found that changes of plan can throw me into a wobble when tired - even something stupid like husband wanting to add a stop to an extra shop!

[Chinaplatejules in reply to Mirabellegage]

yes that’s it your right I was quite the party girl before this lol

[Hopetohelp in reply to Chinaplatejules]

I totally agree with what Mirabellegage says. We work out how to not get too tired and then someone else changes our plans so we are not in control. I choose when to be sociable and that’s not as often as it was by far but find my own company including my dog can sometimes be the most peaceful. Sometimes I think I am becoming a real anti social. Maybe as Barbiebreath says it’s down to age 😂. Nice to know it’s not just me

[Cat1001954]

I’m exactly the same it’s normal don’t worry x

[Joetcalr]

I find the effect of medication drags me down, I had a month off it recently and my sense of humour came back along with lightness of mood, I’ve now gone back to being a pain to be around now I’m on hydroxy again 🙁

[Hydranga18 in reply to Joetcalr]

Did you decide to have a month off Hydroxycarbamide , or did your Haemo take you off, were you having problems with it. I hope you don’t mind me asking you this question.. as I’m on Hydra and sometimes find it very difficult . Thank you

[Joetcalr in reply to Hydranga18]

Hi, fine to ask. I was in between Pegasys and going back onto hydroxy. I also had a month off when I was going the other way from hydroxy to peg, not sure why that was, because it sent my platelets up while waiting.

Both gaps were decided by the haematologist but I did enjoy it, 😀 it was good to know that my old self was still in there somewhere.

[Hydranga18 in reply to Joetcalr]

Thank you so much for replying … I am finding Hydroxy heavy going at the moment.. and would love a break from it … were your platelets very high .. mine vary between 450 - 525

[Joetcalr in reply to Hydranga18]

It sounds like hydroxy is working for you. My platelets are currently in the 700s and fairly stable. My haematologist wants me to take more hydroxy and get them below 500.

When I had the break they went up to about 800, and 1400 due to EPO injections to get the Hb up from having anaemia on Peg.

[Mirror368 in reply to Hydranga18]

I am having headaches on Hydroxyurea 500 mg. After good lab results my hematologist told me to go off it for a month until next lab a ninth later. I think I will ask her about switching to Pegasys.

Best wishes, Eileen

[Hydranga18 in reply to Mirror368]

I am having digestive problems Which I think are being

caused by Hydroxy, and would live to have a break from it my Platelets tend to be 450-525.

[Mirror368 in reply to Hydranga18]

My CBC lab results were all normal except platelets were 528. She okayed me going off for a month until next CBC in a month. I am on a blood thinner for AFib.

Her goal for me is platelets to be 450 or lower.

[Hydranga18 in reply to Mirror368]

yes I’m on a blood thinner also ..

[UKZA]

I totally understand this. I have always had a houseful of friends and family and loved entertainment. Now the thought of it sends me into a cold sweat. I do agree, it has to do with energy. All my energy seems to go onto work right now and I need my safe space to be at peace in. I now prefer to meet people out and can leave when I am ready. I am also loving just being out with the dogs and countryside walks. This just uses good energy and I always feel energised afterwards. I think bottom line, you need to just cut out energy drainers, whether people or activities from your life. Take care. Penny

[Hopetohelp in reply to UKZA]

such good advice

[jillydabrat]

we all respond differently to this illness, there is no “norm”. I was diagnosed the day I was given the all clear from breast cancer. I was very angry, I wanted to hit out at everybody and had no support except from my wonderful husband. We both just looked at each other when I was told I had become the newest member of a different cancer gang.

I am very, very lucky that my husband and I are best friends. He is just my hero and my rock.

There is no set rule how to approach this illness, in fact when I had found my routine for treating it, the amount of Hydroxy to keep me well, and being lucky enough to only have two blood letting sessions, I have found it to have virtually no impact on my life. For the first couple of years I was very suspicious, and scared, of any change in my FBC’s but now, 8 years later and everything remaining steady, I find it very easy to live with.

Don’t look for changes. You will be well monitored so live your life the the utmost, don’t let it rule you.

I found this site quite by accident and my friends on here have helped me through my darkest moments and I love them and you will to if you let let.

Take care my lovely. Learn to live again xxxxx

[Aldebaran25]

I am just like you ! There is a big party in a couple of weeks for my mother in law and I am dreading it! I did not use to be like this. I only really enjoy seeing my (grown-up) children and the odd friend, but I really need my space.

[Hopetohelp in reply to Aldebaran25]

snap

[MaggieSylvie in reply to Aldebaran25]

The day after I have been with people for more than a couple of hours (I would say), I am really tired. I call it being "all peopled outl"

[3cance in reply to MaggieSylvie]

I have the same issue. I have limited energy. I am anemic all the time, and fatigue comes easily, especially when my hemoglobin gets below 8.5. Even doing enjoyable things “wears me out” quickly. I love visiting with friends and family but even that requires energy. I have learned that this is part of managing MPN (and I also have Multiple Myeloma).

My symptoms of exhaustion, dizziness, weakness, and shortness of breath return as my hemoglobin drops. I require a transfusion when it gets in the 7-8 range which is about every 4 months. The hemoglobin will bounce back to 9.0-9.8, which is still below the normal of 12-14. I’m still fatigued and have to decide where I want to spend my energy, but I am able to enjoy being with others or doing something I enjoy during those times. Then the cycle starts again. It’s just all part of living with Mpn and Multiple Myeloma for me. Staying hydrated (I drink lots of water), eating healthy, and exercise help. I only do light exercise or I will get over fatigued.

Pace yourself knowing you may only have so much energy to spread around. Plan to have a restful day following a day of being busy and remember to stay hydrated. Enjoy those days when you spend time with family or friends. Stay away from sugary foods; they zap my energy! These are things that help me.

Wishing you the best in finding YOUR balance!

[MaggieSylvie in reply to 3cance]

Yes - it's best to plan a free day to follow a "party". But I am a carer and may be required to "jump" at any moment night or day. I'm also on a wonderful drug called Pregabalin but it can make one drowsy.

[MaggieSylvie]

Oooh, I am like this, too.

[Janis12]

Anxiety comes with age. I experience similar things like enjoying the social event but glad to get back to my haven. I have close friends of a similar age and they are all experiencing the same and do not have an MPN. When we have a condition it seems it is very easy to over think, I find exercise is the best solution and also coffee and cake!! Stay calm and carry on.

[MaggieSylvie in reply to Janis12]

Yes, it seems easy to blame the condition. But old age on its own can have this affect, surely. Perhaps the elderly with RARS get a double whammy.

[westlieght]

o my , I feel the same , until you put into words !since covid spending nearly 4 month in close down I was very sociable? But I feel comfortable in my own company , still have to work part time but alway happy to get home and spend time home ! I do see my friends but did cancel dance New Year’s Eve just went to bed slept the night !! Not me so what is going on !

[Otterfield]

It sounds like you are an introvert like me. I like to see people, but in very small groups and for a limited time. I think I probably found lockdown easier than many people and now I have to self isolate due to severe immunosuppression after my SCT. There are people and activities I miss but it's honestly not that hard and my husband is fine with it too. Luckily we are also best friends!

[ainslie]

not uncommon, sometimes when we are tired as a result of MPN we can get anxious more easily, rest is important

[Myers75]

Good to see I am not alone on this. Freshly diagnosed with ET (3 months). I was introvert before the condition also. I am trying to start a new relationship and sometimes later in the day especially after some physical activity I get totally drained and my head is totally empty. Like some extreme melancholy passes over me. I get grumpy and stuff. Is this normal with this condition or am I just getting annoying old fart:)? Also the girl I am seeing is underestimating the seriousnes of condition and says I am overexagerating and thinking too negatively. But the dark head still happends anyway lol. Maybe she is just not the right one

[Chinaplatejules in reply to Myers75]

I think you should see the dr about a mild antidepressant…I am on one and it has made a world of difference it just takes a lot of the stress factor out of things, it is definitely worth a try. I am taking 10mg Talam, I was prescribed 20 mg but found 10 was enough so try it can’t hurt.