sorry to continue the hijack - but so very rare to find someone who even knows what Crohn’s is.
Hi Dee - sorry to hear your son has Crohn’s. Has he thought about joining the National Association for Colitis & Crohn’s? I joined 25 yrs ago and have found their qtrly newsletters very helpful in many ways, particularly new treatments and research. It costs £10 pa, and you get a “Can’t Wait” card, which I have used on many occasions in high street stores that don’t have public toilets, they let me use their staff loo - never been refused. I also get upgraded to club class on long distance flights to the USA - I ask for an aisle seat near the loo, they usually don’t have one, so I show them my card and tell them I can’t wake someone up in the aisle seat when I am desperate, and the stewardess will have to clean my mess up! Works every time.
Liz.
Hi everyone.
Hope you are all feeling ok today. I don’t really have anything to add today; my wisdom is all used up:-) but I hope you are not too tired and have enjoyed something today. That’s my aim, to enjoy at least a little something each day., even on a bad day. Better be careful what we share here though!!!
Nicola
Hi lizziecee,
I just want to thank you for the info re “cant Wait”…I was misdiagnosed as IBS 15 years ago, then ulcerative Colitis with features of Crohns in May2005. What a relief!!..on pentasa, but still very unpredictable, if im worried in straight to loo…strangely enough whilst on chemo was ok bowel wise, but a year on, herceptin finished, im really not sure if bowels or chemo, rads, herceptin, tamoxafen is causing my extreme fatique and mood swings (btw bc dx oct 2006, herceptin just finished)…I always carry imodium…
Jill
Hi,
Good policy Nic…a little treat every day. Even though you feel you haven’t much to say it’s nice to keep in touch.
I really feel that I have felt better since finding this site. I believe now that its the Arimidex that makes me feel rough and not just me being a wimp or just darn right lazy. It has definitely given me a boost to know that I can come on here and talk to people who can relate to how I feel. Doesn’t make it go away bit it helps!
Sheana x
Hi,
I have a question about weakness.
Does anybody suddenly get a feeling of weakness in their arms and legs when doing things? I was just washing up and all of a sudden I got such a feeling of weakness that I thought if I don’t sit down I’ll fall down. It’s a horrible feeling and I wondered if anyone else has experienced this? I get this fairly frequently.
I know I talked at the beginning of the thread about tiredness/lethargy/weakness but I’m not sure if I explained the weakness properly so, as I just had a little blast of it, I thought I would come on here and describe it and see if anyone can relate to it.
Sheana x
Hi Sheana
I think I know where you are coming from - it is like running out of steam. I can start to climb the stairs - and by the time I get to the top I am out of breath and my heart is pumping. Then I can go into the gym and do 15 mins on the cross trainer and be fine. Really weird.
Gill
x
Hi Gill,
Yes, Im not good with stairs…my legs seem to run out of strength and like you Im puffed with my heart hammering in my ears.
Sheana x
Hi all.
Yep, me too. It is unpleasant and I have found myself not doing things - such as going for a walk or shopping - on my own as I am afraid of having one of these episodes. Mostly I do though as I have found that is I sit for a while I feel better so I reason that I can sit on the ground if I need to. Haven’t needed to yet though.
The very worst thing about all this is feeling so old. At our age we shouldn’t be out of puff so easily. I think I have said before that the thing I miss most is being fit. Oh dear, moan, moan!!
On the bright side, a friend bought me a lovely bunch of flowers yesterday and for no real reason. This is a fairly new friend too not one of the old lot who I hardly see but don’t get me started on that!
Hope you all have a good day.
Nicola
Hi Nicola,
Nice to hear from you again…and nice that you relate to what I’m describing. Well…again, not nice but you know what I mean!! I often get the terrible feeling of weakness in my arms and legs when I’m washing up…it’s weird. I come staggering into the living room and say to the boys…’ gotta sit down…quick…!’ and then it passes and I go and carry on. It’s yuk!
Anyway, I’ve had a treat today. Every two weeks I have a relexology session so my feet feel lush. Not sure if it really works or not but it feels nice! I’m glad you had a bunch of flowers…a treat for you too.
Sheana x
Hi people, i am way behind you on the treatment stakes, still doing chemo but will be doing hormone therapy after rads…
this thread has brought me to the verge of tears - for the right reasons - i feel ridiculously proud of you all for dealing with things how you do.
My very best wishes to you all and huge hugs
jennifer xxx
wow Jennifer, thanks for your nice message x
Good luck with your treatment xxxxxxxxxxxxxx