Feeling low

I'm glad not many people now about it and it's a long way away. It wouldn't be the same if i.t got busy.

You are spot on! There are a lot of hidden, unknown beaches all over Scotland that.are deserted! It is magic!

Hi Suzy, just thought I'd send a little message to ask how you are doing, I hope your ok, please feel free to post, you can join in any conversation whenever you like or start a new one, you ill always be welcome here. best wishes.

Eddie xx

Dear Eddie.  Thank you so much your kind message, and for thinking of me.  I’ve been thinking of all the people who replied to me last week and feeling very much “seen” and supported. I’ve not been too bad although have been busy visiting elderly relatives on separate days, basically 4 hour round trips both times and it does take it out of me. I went for a walk on one of those days - I wanted to get to the waterside near Dunoon) - but actually “lost” my leg power and felt quite unwell stumbling back to the car with help (of course I didn’t take my wheelchair as I thought I was ok). I keep thinking “I know there is nothing wrong with my muscles but why can’t I move my legs right now?” I keep thinking it’s mind over matter and I keep getting that wrong!! I have felt quite panicky and breathless at times, especially at night.  I don’t know why, as this is fairly recent. However I’ve taken the courage from speaking to you and others to try and explain how I’ve been feeling to other friends, and I have two lunch dates lined up in the next fortnight. I can’t tell you how much I’ve appreciated speaking to you and the others here. I really have not felt so alone, so thank you. 
I hope this week has been ok for you and that you’ve managed to get out and about too.

Thank you for thinking of me

Suzy xx

Hi Suzy It's nice to hear from you and to hear your feeling ok and have been keeping busy as well visiting family which is always nice, though I'm guessing, like me, it would be nice if they lived a little closer, 4 hour round trips really take it out of you I have been to Dunoon, lovely place and only 18 miles "as the crow flies" to my mums hometown Tarbert on Loch Fyne though 75 mils by car, I was born in Oban but live in Yorkshire now. Suzy this loss of leg power must be a concern, have you mentioned it to your doctor and that you feel panicky at times, I admire your mind over matter attitude and like you i believe it helps, but sometime we need a little more, and you should know it's better to have it and not need it, than to need it and not have it, you have a wheelchair for a reason, and well done confiding in your friends that was a brave thing to do as it can sometimes affect your friendship though with true friends I found it bought us closer together, enjoy your lunch dates, I hope they are not 4 hour round trips, Suzy it's been very nice to speak to you as well, best wishes.

Eddie xx

Hi Suzy (Skaro) I am so pleased to hear you have spoken to friends about how you feel, that's terrific!

Believe it or not I know the exact feeling you described about your legs not working properly. I am stubborn also and don't always use my wheelchair as I want my legs to work for as long as possible. However the feeling of your legs not working isn't always to do with overdoing things, so, It is always better to tell a medical professional what is going on, just to be sure! I told my oncologist eventually who sent me for tests, X-rays etc. it turned out I had discs in my spine out of place. So mind over matter doesn't always work!

Please let me know when you have spoken to someone to get this checked and I hope you enjoy your upcoming lunches! Bye the way, I love Dunoon, up until recently my sister owned a caravan there which was wonderful!

Hi Eddie, if your in dunoon and going to Tarbert hire a crow no a car.

Hi Ulls, that's Scotland for you hardly ever a direct route away from the cities and your heart sinks when you see a diversion sign

Well my birth familyare from Eyemouth, but i'v been to many other places, done a surival course based in fort wiliam, you might have heard of it, Have family in Wick.

Hi Eddie (and Annette).  Please don’t worry about my leg situation.  My condition (rare type of blood cancer) has this type of side effect. I’ve asked my oncology nurses and also spoken to other ET and (other MPN) sufferers and the running out of steam thing is common. Some are worse than me and some not so bad. There’s not been loads of research into it and consultants don’t know why it happens.  Is it the disease, the chemo or a combination of both??  If you know Harry Potter stories, then it’s like being attacked by a Dementor - you suddenly feel all the energy drain away from you. The weirdest feeling. Once it’s gone for the day then it’s gone, sometimes for two days. Then it slowly comes back. It means you can’t really plan anything! Then there’s the brain fog, but I guess a lot of people here will know about that…. But my next hospital appointment is August so I’ll ask again.  I’m hoping there will be another in- patient forum in Scotland soon, but the MPN charity struggles for money so not sure.  The last one was great but there weren’t enough chairs initially, which was mad given everyone is fatigued and can't stand for long. lol.

best wishes 

Suzy xx