A couple of weeks ago I found myself trying to explain to my husband,( who I have to say is very supportive and will do anything I ask) , about my limited energy. I told him about the "spoons theory" which PMRpro and others have mentioned on here. I didn't think too much more about it at that time.
This afternoon my husband walked down the lane from our house to the main road to collect the refuse bin which was due for emptying today. He returned empty-handed and said "Well, that was a complete waste of a spoon..."
I could have wept with joy! What a breakthrough..........
Metaphors are such a powerful way to get the message heard. If you haven't read about the spoons theory, have a look here and share it with your family and friends.
Good for your husband, since it sounds like he gets it. The "spoons theory" has also helped my hubby relate to what I go through each day. He knows I usually run out of spoons late afternoon, and if I do too much one day, I may wake up the next without any spoons, so I have to be careful. He's very supportive in helping me guard my spoons!
Have just read the "Spoons" article, now sitting in tears as it just explains so well how I feel. At times I think the family see me as lazy as I can't do the things they think I should. I have been diagnosed PMR for 3 years and struggle, as so many do, with prednisolone reduction. I too take the dead slow method and currently on 3 one day 2.5 next for the next month then hopefully to 2.5 for a wee while. On Christmas Eve was also diagnosed with Atrial fibrillation and put on warfarin, this has also added to my fatigue as when heart jumps and flies the tiredness and breathlessness kicks in big time. Some days feel as though have no spoons at all!! So thanks Linda49 for highlighting the spoons and have dried my tears writing this and going to print off the discription x
Are you only on warfarin? If you have symptoms from the a/f very often tell the doctors and ask them if they can give you something to help calm it down. Don't gloss over the symptoms - tell them what it is like.
I too am on warfarin for a/f but here in Italy they take it far more seriously than they appear to in the UK. I was put on BP medication plus something that makes the heart beat more regularly (it is called propafenone. It works really well - but I noticed if I was a bit late with the late-afternoon dose then I have an episode about midnight - I put it up from 1/2 to 1 tablet and take it a bit earlier, no problems at all now. But the episodes of palpitations are very unpleasant as you say and there is no real need to suffer them.
Thanks PMRpro, I am on BP meds and they have been increased to lower pulse with effect. I have been waiting on an echo since Xmas but waiting list is so long despite GP tying to speed it up. Had a bad day yesterday, the first for a while, and think that is why I felt very emotional this morning. Just back from lunch out and a nice run in the countryside, think my husband was feeling sorry for me! So don't think I have used too many "spoons" today. Will get some knitting now x
If you have a/f here you are not allowed out of hospital unless you are already on warfarin - and the echo is usually done while you are an inpatient. Honestly - I'll defend the NHS to my dying day but it's time the experts and not politicians were in charge and the truth was told - to have a 24/7 hospital service will cost at least 40% more than they are willing to spend now. It isn't JUST junior doctors, it is all the other staff too, nurses, technicians, clinical scientists. And they are next on the list...
Yes PMRpro sadly NHS has too many chief and not enough Indians as they say and too many targets to meet. Worked in very many areas over my 49 yrs nursing so have seen it all and as you said will always defend the NHS
Hello Nannie C, I can relate to everything you said. I too have had PMR for coming up for three years, I also was unlucky enough to have GCA. Now on 5/4 mgs Pred and coming down slowly, very slowly. I too have just been diagnosed with Paroxysmal Atrial Fibrillation and the Beta Blockers have dropped my pulse so low to below 50 mostly, I am fatigued most of the time and after a episode like today when my heart was all over the place, 90 one minute 146 the next I too am left wrung out. I had read of the spoons theory a while ago and all my family know and now understand. Today I initially had masses of spoons but the AFib stole them. these conditions are awful but it's reassuring to know you are not alone.
Nice to know I'm not alone in this Dovelady. Have done far too much the last couple of days and boy am I feeling it tonight, definitely no spoons left!! Had plans for tomorrow but will now only be knitting and watching catch up tv all day and as husband at golf will get peace. The joys!
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