Since being diagnosed earlier this year I have managed to stay positive, pragmatic and perky despite gradually beginning to feel rather unwell. However, over the last 24 hours I am really feeling rough. I am completely exhausted, breathless to the point of finding the stairs too much, headache and to top it all my hair looks awful!!
I am awaiting results of a TP53 blood test and then will be starting treatment - hopefully on the FLAIR trial.
I suppose what I am really asking is does anyone else have days like this and does it pass quickly? My husband and family are fantastic but it’s great to have this Group where we all are coping with the same thing. X
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Jooby59
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You are not alone!! And yes we all have had days of exhaustion. For me they will come out of the blue and I try and just take time to rest. This is a great place to come when your having one of “those” days!! Be good to yourself and don’t worry about the bad hair days 🤗
Yes - we all, I am certain, know exactly what you are describing.
The question is, I guess - are you feeling this rough because of the uncertainty ahead of you regarding treatment decision - or is there anything else going on?
What I can say - is that for me "pre treatment" period - was about 9mths in all - till I decided on FCR (!) - was a very hard time indeed. Not least - as I was in need of treatment!
So if treatment is imminent then I must assume you are feeling the burden of CLL in any case.
Incidentally what are the reason for which treatment commence has been decided?
Finally - chat to your Family DR or Haem Team - if you have concerns about how you feel - they will be well able to screen you for infection etc.
I'm so glad that you have the support from your husband and family, and you are totally correct in saying that the members on here are going through the same rollercoaster of good days and bad, and that they can therefore see things through a different perspective from that of medical staff and family members.
'Ranting' is an important part of being a member ... at times it becomes manditory !
I am president of the .. " THIS IS RIDICULOUS !!! " club.
I also keep a small notebook. If at any time I hear, experience or read something 'inspirational', I write it down.
When days are hard, I'll have a wee flick through the journal.
Even if a page has just a line or two, and even if it is not relevent for that particular day, it shows to me the possitives that I had experienced.
The latest came from a pain management book which said that there is a saying, when one door closes another opens.
The lesson being that at times, WE need to get up and close the door ... let the bad day go.
Of course, I tend to SLAM the damn thing .... " THIS IS RIDICULOUS !!! "
I hope that those stupid stairs won't be bothering you for too long
Hello friend, Boy, it sounds like this is a rough patch for you and I am glad you reached out to us all. Of all the people on the planet, we really get what you are going through. So, yes, I've had times similar to what you are describing and it is very draining. A simple thing I do to perk up my spirits is to send postcards to people near and far. (Near as down the street!). What I like about this is through this tiny kindness, I have to power to bring a spark of joy to someone who is otherwise going through a stack of junk mail and bills. Always makes me feel better.
And another things is to do some guided deep breathing exercises. There are some places on the Internet that can show the way.
Sending love, support and sunshine your way. Hope your spirits lift soon.
You are definitely not alone. I know exactly how you feel, because I have been there. At one time the couch was my best friend. The exhaustion, fatigue, anxiety and depression was madding.
I find most days I'm okay, but sometimes the fatigue sneaks up out if the blue and all I want to do is sleep, all day. Stairs make me out of breath and tire my muscles to the point of being painful. Some days just sitting abs carrying on a conversation is exhausting.
Then it passes and I can feel almost normal again. Its infuriating. There's no warning. Just BAM! Today you feel like garbage! Im trying to learn to take it with a grain of salt...
It might be worth while asking to be checked for anaemia. I was exhausted this time last year and thought that I was really unfit as I was struggling when climbing stairs etc . After a blood test I was found to be very anaemic.
Try not to fight it, your body is telling you to rest. Don't beat yourself up about it, tomorrow is another day and you might feel a bit better.
YES!!!! And this is the place to come when it’s ‘one of those days’. I’m lucky, four years in and numbers good but OH the exhaustion!! Quite overwhelming at times, like having your worst ever Sunday morning hangover without the pleasure of the Saturday night party. As ygtgo says it’s a good idea to store away any info that raises your spirits to bring out on a bad day because there will be bad days. These are the days you’ll ‘get by with a little help from your (virtual) friends’. Hang in there, tomorrow’s another day.
I hate bad hair days! And the rest of those symptoms aren’t any fun either!
I started feeling pretty rough last February with not much let up. I finally started treatment 6 weeks ago and am finally starting to feel better.
I am not saying you need to start treatment, but it is worth a conversation with your doc. My doc is of the school of thought that when symptoms start to affect your quality of life, it is time for treatment. With the new drugs and options now available, it is worth thinking about.
I started Venetoclax with Rituximab and am having really awesome results with very minimal side effects (which I attribute to starting before my symptoms got super bad) Why watch and wait if your symptoms are already making your life miserable?
This is a discussion you need to have with a CLL specialist.
Definitely, I had treatment almost 2 years ago and still get days of exhaustion. Thankfully not as frequent as pre treatment, but nonetheless it can be debilitating on the days when it seems to hit me for no good reason. Hang on in there and make the most of the days when you have energy.
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