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A DAY IN THE LIFE OF FYBROMYALIA

Posted , 7 users are following.

laura11452
laura11452

Hi all

So getting out of bed and walking around is a major effort..Thank God the house isn't on fire or I would look like burnt breakfast..OOh forgot to mention have headache and nausea and yes feel exhausted and have only woke up.

You think your having a good day and your energy is soaring to the point you feel you could walk for miles, clean the house from top to bottom, revamp the garden, decorate the house..

So off you go enjoying that you are able to do more than normal.. Having coffee inbetween ( well i do)..Having the feel good factor that your achieving so much today..WOW GO ME

OOPS you have spilt your coffee on the floor..So you get on your knees to clean it up..But how the heck am I going to get up again?? Even the thought of trying to get up is a struggle.. The pain and stiffness is unbelievable..My face is so distorted from the effort I know for sure this could be a Youtube hit for ugly..

Anyway off you go continuing with your day and this heaviness in your head won't go away and you are starting to feel weak and tired..

Go on have another coffee..Take a load off ( rest)

Just started to gut out a room and mess everywhere and I feel exhausted..Getting up the stairs is starting to become difficult because my feet and legs ache.. My arms ache and now my hands are starting to get sore..(thank god I can still hold a cup of coffee)

I want to rest in a chair to get my mojo back to do some more, but my neck and back or aching so not feeling comfortable to rest..The heavniess in my head is getting worse so I have to lie down because Iam exhausted..At this point all appointments canceled. But you get a phone call you have won a million pounds and it has to be collected now or you lose it..Guess we all know what happened to that lol..

So I wake up after my nap and WOW I still feel exhausted and cannot think straight. Not forgettng I feel like I have been hit by a bus now aching from top to bottom..( Get me my coffee pleaseeee ).. Oh that's right I live on my own..

I want to finish the room I have started to clean and now I am trudging and having to stop and start.. I have lost my mojo and feel like someone has popped me like a balloon and all the energy has left me..

I ache all over, feel weak, my head feels like I am zoned out, every move is a big effort, I break out in random sweats, I am frustrated, I feel like 90 years old, now I am crying where is my life??.. NO I DON'T WANT A COFFEE.. 

This was a good day in the life of Fybro ( you all know the rest) 

5 likes, 162 replies

162 Replies

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  • debbie68552
    debbie68552 laura11452

    Posted

    Love coffee too!  Try to stick with decafe, but when you need to keep going real coffee helps.  Usually on a good day, I can get a lot done, but then I am exhausted and just want to sleep for a couple of days.  So it is the one step forward and then 2 back!!  The tango!!  So always behind in everything I do, but on the bright side, I hae a lovely husband who never pushes.  
    • Magpie2me
      Magpie2me debbie68552

      Posted

      Yes, learning to pace ourselves is a real challenge Debbie. We want to do more but more means we will often pay for it. I now try to plan out my week so as not to deplete my energy. Spreading chores out over the week seems to be working for me. I manage to keep the house clean and tidy, but my husband does cooperate as well. He knows when I am crashing and he will make sure to finish the washing up if there is only his plate and cutlery left. Picking up after himself makes a big difference too. Of course we are in our 60's now but I had FibroM all the way through raising my two girls as well. That is more of a challenge because kids can sure create more work. And teenagers, well that is a whole new issue! I wish I would have involved them more in housework because I just often thought it was easier doing it myself. Like I said before, we are often very demanding on ourselves. Many of us are Perfectionists. That is not really a quality. It depletes us. Moderation and being reasonable is more productive.  Now, some days I have more energy than others, but as I mentioned, I do pace myself and reason with myself when I want to go at it like a crazy woman. I will spend a half hour productively and then I will stop. Maybe 45 mins now and then. Resting in between tasks is very helpful Debbie.
    • laura11452
      laura11452 debbie68552

      Posted

      More coffee lovers yippee lol..

      That is so true the tango..

      I tell you one thing..The fact we are all on here talking about it and not giving up shows strength of character and strong women..

    • laura11452
      laura11452 Magpie2me

      Posted

      Yes Maggie I have found stopping and starting helps as well..Although I don't have a choice at times..

      I am glad your husband is very understanding it makes the world of difference..

      Can I ask does Fybro get worse as the years go on?

       

    • debbie68552
      debbie68552 Magpie2me

      Posted

      I am in my 60s too, and the all or nothing doesn't work well for me, but so hard to quit on a good day!  I wish I had of gotten my kids more involved with helping me too, but on the farm it always seemed they had enough to do outside.  Nothing organized with farm animals! lol  It is too bad no one recognized fibromyalgia as an illness until recently.  I think If I learned to pace myself back then I wouldn't have crashed with depression from being overwhelmed.  But we are all really non the worse for wear, and life is good.  Still fight the quilt though of resting when others are working.  Thanks for letting me know we are all in this together, and we will lift each other up.  Thanks for the lift!
    • debbie68552
      debbie68552 laura11452

      Posted

      I agree that we are strong women!  I really feel now that people are starting to get this illness and all the symptoms that go along with it.  I finally feel like I understand myself.  It is wonderful to find people that have gone or are going on this journey, and realize we have a lot of guilt free living left to do.  There are lots of ways to help ourselves and each other. I think being more forgiving towards ourselves helps us to be happier and maybe take time to quit worrying about what we don't get done and enjoy doing what we can get done before we collapse with our coffee.  smile
    • debbie68552
      debbie68552 laura11452

      Posted

      I have heard fibromyalgia can go into remission.  I guess we are all different with different pain levels and fatigue.  I think stress is a big factor on how fibro presents itself.  I think like Magpie says we need to be kind to ourselves and look after ourselves.  A hard lesson when so much guilt comes with fibro.  Depression and anxiety make fibro pain and fatigue worse too, so an antidepressant can be a big part of coping with fibro.  
    • laura11452
      laura11452 debbie68552

      Posted

      Yes I have heard that as well and I think I did have a few weeks last year where I was ok and went back to gym but didn't last long asI went downhill very quick..I don't really have guilt to be honest as I know this is out of my control and it is not my fault I have this..But that could also be from the fact my daughter is grown up and I am on my own.. I have thought if my daughter has children that is where I am going to struggle emotionally and physically..I do agree stress and depression have a big part to play..My anti depressant has been changed again as the last one didn't work..So will see how that goes for the pain side of things..

      Women find it the hardest to be kind to themselves as we automatically go into caring role for everyone but ourselves..I even have a problem going to hairdressers it like a chore to me lol..

    • trisha87499
      trisha87499 debbie68552

      Posted

      100% stress is our worst enemy, or if you have other illnesses that are playing up, it then adds stress and gets the old fibromyalgia all grumpy, so it decides to join in. I refer to my fibromyalgia as my old grumpy friend and I try not to poke the sleeping bear. Lol 
    • trisha87499
      trisha87499 debbie68552

      Posted

      We can help each other just by knowing what we are all going through and you would need to have Fabriomyalgia to totally get each other, I'm in my 40's and have had this since my 30's, and even today I get my moments when I say why me? However most days I just try and pace myself. Sometimes works lol
    • trisha87499
      trisha87499 laura11452

      Posted

      To be blunt Laura, yes! However the older you get the more you learn tricks, on how to cope and accept your condition. Soz, on saying that, that's my experience, but I think you learn to know your own body and will find ways to identify when you can do more or less on that day, just take it day by day
    • Magpie2me
      Magpie2me laura11452

      Posted

      Well I am sorry to say that it does. The doc warned me 30 some years ago that it would worsen. This is understandable Laura since our bodies do begin to break down more as we age. With an already delicate condition to cope with, it can be more of a challenge as we get older. I think that that is the reason that doctors still encourage FM patients to do some form of exercise to maintain a certain strength in the bones and muscles. I was a walker for about 30 years so I think that helped. I don't do it as much now but I try to keep some sneakers in the car so that when I am out and about, I can just stop at a local park and go for a walk. And my husband is not always understanding like all men. He has his moments believe me. He is basically a stubborn opinionated sort of person but he really tries to work on his character. He is a man of principle however and this is my second marriage so it takes time to adapt to each other's rythmes. We have been married for 15 years now and he does understand my energy limitations. With that he does show compassion. It does help if your mate does not put undo pressure on you. 
    • laura11452
      laura11452 Magpie2me

      Posted

      I thought it might worsen as time goes on..My excercise is taking the dogs for a walk.. I physically don't have the energy for excercise and feel it would make me more tired and sore..I wonder is this the case for everyone or do you have to push past the tiredness and painto do it??

      At least he is working on his character that says a lot about him and great he does understand..

      I don't have that to worry about a realtionship and their quirks lol..

       

    • Magpie2me
      Magpie2me laura11452

      Posted

      I don't believe in pushing through the tiredness. Just to do it as long as it feels somewhat comfortable. I do have days where the fatigue really kicks in and usually it is after a few days of doing a bit too much. So pacing ourselves is crucial. Like the other lady mentioned, listening to our bodies is the best. We need to check in regularly to see our energy levels and how we are feeling emotionally. We are so used to ignoring our signals over the years. We need to be our own radar. 
    • Amanda_Awake
      Amanda_Awake laura11452

      Posted

      Laura... my daughter has children..7 and 5  and it is awful feeling like this when they are around. I can only have them for sleepovers if my hubby is not at work as I get so tired and need his help taking care of them. I stress that I will get tired and that makes me crash with fatigue !  Vicious circle.  Once I felt myself crashing so bad and had to leave them in the ( luckily) capible hands of my 15 year old son while I lay on my bed trying to pull myself together...fast forward 3 hours...my son had taken care of them and my hubby was in from work and I had slept right through it. I would love to take them out for trips but I just have not got the energy.. it breaks my heart when they want to visit but they have to wait for grandad to come in.

       

    • laura11452
      laura11452 Amanda_Awake

      Posted

      I can totally understand how this has an impact on your realtionship with your grandchildren.. You don't want to let anyone down and be there for them but Fybro dictates how that goes..Acceptance is a big learning curb in this I think..We cannot be down on ourselves for something we have no control over.. I totally get how unfair this all is but I try to remeber those who are much worse off than me.. Not easy all the time as there are days I get down and its like this has control over my emotions as well.. You have some brilliant days full of the joys of spring and then you go bang.. I wonder does that come with the Fybro fog?? Or is it because we get frustrated at how limiting this can be?
    • laura11452
      laura11452 trisha87499

      Posted

      Sorry Trisha think I missed this post..Thats why I don't understand my doctor is telling me he hopes that I will get better..It leaves me feeling this is just a blip I am going through and it will change..Which means I am not adjusting or accepting the end result..Something deep down tells me this is the way its  going to be due to how long I have had it..

      But hey if I find a miracle cure I will be the first to let you all know lol..

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