What’s going on?

[beetle]

Yesterday I felt a bit down which as anyone who knows me knows that is unusual for me. I couldn’t put a finger on why I felt like that - possibly because I’m not used to feeling like that! Today, after a good night’s sleep I have woken up feeling physically very tired affecting my whole body

I have a blood test on Tuesday and an inevitable transfusion on Thursday of next week. I also have a consultant telephone call on Thursday so I will be able to mention it then.

I guess it is possible that my Hgb is lower than usual. I do look quite pale. As a glass half full sort of person this is affecting me. I also have a son who must be one of the most positive people on the planet. He would tell me to give into these feelings for an hour maybe then get on with something more positive. I’m not sure how that works when disease is involved but I will give it a go! Cross stitch Christmas gifts here I come!

Take care and stay safe everyone

Jan xx

[Cja1956]

Sorry you’re feeling low today. Sometimes if I have a very busy day or a stressful day, the next day my whole body will hurt and I feel exhausted. Take it easy the next couple of days and try to do something you enjoy. Making those Christmas gifts seem like a great way to relax and take your mind off your troubles. Take care.

Cindy

[mhos61]

Hi Jan.

Well, I definitely don’t know you - but, I do have an idea from your general posts/replies ‘feeling down’ would seemingly be unusual for you. Your stoic glass ‘half full’ attitude on the forum is clearly evident to me!

I would say, as this is out of character for you, it may just be a sign the physical is impacting on the mental. The two are closely linked. Hopefully, it’s just an indicator you’re in dire need of your transfusion. Well worthy of a discussion with your haematologist though.

Hope things get better in the next week for you. Let us know how you get on.

Mary xx

[Otterfield]

I'm so sorry that you are feeling low. If it continues beyond a few days it might be worth seeing your GP. When I feel low I find that something as simple as a walk can help or even some housework, although of course energy is limited with MPNs. Please let us know how you get on as days go by - this supportive network can also make a big difference. Best wishes, Jennie

[beetle in reply to Otterfield]

Thank you. You made me laugh anyway at the idea that housework could lift my mood😂. I live in Devon and they were not joking about the weather here. I wonder if low atmospheric pressure can affect our mood🤔

[Otterfield in reply to beetle]

That's a thought - I'm in Dorset and there is low pressure today in the South West.

[Inca in reply to beetle]

Yes defo,happens to me .We have very severe storms with the heat here.Makes me ache in all my old fractures& head gets very heavy & achy too.

Always have to rest with Dyson air purifier / coolers blasting away.12 yrs of this pressure affecting me since start of P V. Best to you.Sally

[Inca in reply to Otterfield]

Oh no ! Never housework.I have just got myself back into my studio to work on a commission of a bronze dog long awaited as I have recently been very unwell ,our intense heat lately making me feel my end had come...must say tho I could not work for long I felt much better in my fuzzy head.I do walk with my dogs every day often get very breathless since Rux.Best to you Otterfield for your future thoughts on treatment.A big step I believe.Good Luck ,Sally.

[Otterfield in reply to Inca]

Thank you for your good wishes. As for housework, it has been horribly neglected since my MF diagnosis, but now my energy levels have improved a lot and I really have no excuse! Often my husband and I tackle it together and make it fun. When I get too tired I sit down and "supervise!" 😁

[Inca in reply to Otterfield]

My husband too does the harder housework,our place is 400 yrs old so you can imagine makes its own dust! Not to mention 2 large G S Ds who live with us,the land too for the horses who sadly went to horse heaven a few months ago,but still to be managed.We now have a great lady who comes & really washes tiled floors ,Windows,Beamed ceilings,one day every 3 weeks,the relief & help makes such a difference,takes away the stress of worrying about 'deep cleaning'.Gives hubby a rest from it ,easier to keep on top of it afterwards.....

[Mostew]

You have a wise son !!

[hunter5582]

Sorry to hear you are feeling down. Lots of ways yo lift your mood. Here is one of my favorites. Just click the link. youtube.com/watch?v=d-diB65...(Not working as expected?)

[beetle in reply to hunter5582]

Thank you for that. It made me smile. I have a fridge magnet of my four sons smiling when they were quite young with that same slogan “don’t worry, be happy”

[IrishHiker]

I was going through the same yesterday. I can only wonder perhaps since I have had both my jabs and the Delta variant is all around these days it is possible that my body is working overtime to fight it off??? It was very “flu like” aches and the discomfort I was having was so bad that I actually needed to think about how to walk without hurting too much. Woke up this morning feeling better. This I take with a grain of salt unless it chooses to return. I hope you too are feeling more positive and well. We soldier on!

[beetle]

Aren’t we lucky to have such a supportive forum as this. A big thank you to Maz and others behind the scenes. Also to all who contribute here. There are other groups around that are set up to support but just seem to end up in squabbles. I love this group of wonderful people - none of whom would really want to be here - who are all so generous in their support. Thank you 😊

[Ettiel]

Sorry to hear you’re feeling a bit down Jan. I don’t think you can force it to go away after an hour or so necessarily. It’s natural to wonder what the cause is. It sounds as if it’s partly physical anyway with your transfusion pending and a low Hgb. Sometimes too we forget that we are carrying quite a lot with an illness like MF and weariness with it is bound to set in from time to time. Then also, I find that an awful lot of people are only now feeling the impact this pandemic has had on all our lives. We’ve all had to be separated from our loved ones more than we should and now that lots of people seem to be getting back to normal we MPNers are being asked to continue shielding until we can be sure we.are safe to resume our normal lives. Yet no solution in sight.😳 That alone is enough to make anyone feel down! It certainly affects me.Hopefully you will feel a good bit better when you chat with your Haemotologist next week and get that transfusion. And then I always find it helps to plan a really nice self-indulgent treat for yourself!💐💐😁

Take care,

Ettiel

[Oscarsboy]

Felt like that too the last few days and often can't put my finger on it. Constant headaches etc. The weather doesnt help but made myself go out witht he dog this morning to get some fresh air. As someone mentioned the mental and physical go in tandem and if one is down it often also pulls the other with it. Pray all goes well with your tests etc and that you soon feel on the up!

[Rachelthepotter]

This is a good cheer up too youtu.be/9YRjX3A_8cM(Not working as expected?)

[beetle in reply to Rachelthepotter]

That’s brilliant! I do try not to spoil today by worrying about to tomorrow 😊

[Wyebird]

Hi, before et diagnosis I would beat myself up and tell myself to stop being lazy only to go down with a cold or some other illness. Now like you I sometimes feel under the weather only to find raised platelets or lower hg. In my blood results.

Be kind to yourself until you speak to your consultant

[ksos]

Hi Jan - hope you're feeling better today. While I am always glad for the results housecleaning, when I don't feel well and my energy and mood are low that's not what's going to help get me through. Cross stitch, embroidery, and knitting, though -- that's where I turn. It's wonderful to have something that can take my mind off my troubles and help me accomplish something while sitting out the fatigue. And your son sounds great. Take care,Kim

[beetle in reply to ksos]

Yes, any of those with a good audiobook and I’m away😊. All four of my sons are a massive support to me and their wives/partners too. I am very lucky. Three gorgeous grandchildren too. Take care too

[Meatloaf9]

Hi Beetle, so sorry to hear that you are not feeling well. Always enjoy reading your posts and think that you have a lot to offer to all on this forum, hoping you continue for a long, long time. Hopefully you will get it all sorted out next week and feel a ton better. Best to you always.

[beetle in reply to Meatloaf9]

Thank you. That is much appreciated 😊