Exhausted

[Buderim]

Today I am feeling very exhausted and feeling very guilty about it. I have just had a very busy week and today I don’t seem to be able to think or do anything. The pain is under control and as I cannot “see” anything wrong I don’t know why I am behaving like this. Very sad today.

[Hidden]

Eerrm. Buderim you are ill. Not lazy etc. You have run your batteries down because pred gave you the impression you were feeling better. You need to rest rest rest. We all do this when first diagnosed and given pred. Do not feel guilty. You have an autoimmune condition and included in the symptoms are fatigue and brain fog. I thought I was going senile at 55. So for the next few days eat good low carb food, drink plenty and rest. Any aches or pains try OTC painkillers, you may have overdone muscles too. As we often say...act as if you have flu for the next few days. Unless it's an emergency stay home and rest. 🌻

[Buderim in reply to Hidden]

Thank you. So reassuring to know it is normal and ok to feel like this.

[Hidden in reply to Buderim]

You were only DX a few weeks ago so the pmr is going to be very active. It is hard not to feel guilty when you have an invisible illness. It is a vascular condition so the blood doesn't feed everything like it should because of inflammation. I don't know if you have heard of pacing. Here's a link to a discussion of ways of handling the fatigue.

healthunlocked.com/pmrgcauk......

[alvertta]

I felt like that when first diagnosed with GCA. It takes awhile to accept your illness and adjust expectations. I now know I cannot run around like I did before. I plan rest breaks and no more than one activity or event per day. All the best.

[Blearyeyed]

Healthy people don't feel guilty after a busy week for feeling exhausted so why should you!

You've been busy , you deserve a rest , tell your guilt glands to give you a break , and enjoy a day of peace xx

[PMRpro Ambassador]

"I have just had a very busy week "

You have answered your own question. Being ill is not the same as lazy and you don't need to add guilt to the trip.

Even though the pred is managing the inflammation so you have no pain, the actual illness you have is chugging away in the background: an autoimmune disorder that amkes your immune system unable to recognise your body as self and so it attacks the tissues causing damage and making you feel as if you have flu. Would you be surprised at feeling as you do if you had flu? Or another recognisable illness that doesn't cause spots?

[Louisepenygraig]

Please don't feel guilty, as Poopadoop says, you are ill. We probably all go through this. One of the important things to do is to learn to pace yourself, which is easier said than done! After 2+ years I still haven't quite got there. If you're going to be busy you need to factor in rest days too, maybe even a 'bed day' where you do as little as possible. It helps to do this before a busy day as well as after. Once you've accepted you do have a genuine illness it does get easier

[Blurry62]

Buderim's Prescription

1. bath/shower.........................................................................check

2. comfy clothes...........................................................check

3. breakfast and medication....................................check check

4. relaxing music/TV show/audiobook --- hit play...............check

5. favorite pillow and lay down-- sofa/hammock/bed.........check

6. deep breath and let that stinkin' guilt go.

Your job is to heal. Listen to your body. I struggled and still do at times, with this. Our brains are going miles an hour with all the things we long to do and used to do but, the body says---no no no! We push through when there's a spurt of energy and pay dearly later. PMRpro told me something very valuable--I think she had to tell me three times actually-- think ahead of the exhaustion by resting before I get tired. It really has helped me alot. This is only a season of your life. Seasons change. It's not only okay to rest, it's essential.

[HeronNS]

Time to post this again methinks:

rarainbow.wordpress.com/201...

[Blurry62 in reply to HeronNS]

Thanks. Yes, I benefited from reading it again.

[PMRpro Ambassador in reply to Blurry62]

Those are in the link Poopadoop gave above - plus a couple of other bits that are relevant. All worth reading.

[Purplecrow]

Swap the term 'guilty' for the term 'angry', and see if it fits.

The change is that you feel " very 'angry ' that you cant do anything."

When we develop an illness like PMR, our regular worlds are upended. Things we did without a second thought, now require planning and accommodation, if we can even do them at all.

Cut yourself some slack Buderim, you have an illness that takes a serious toll from your daily life.

And, while I'm on the subject...let some of the others who live in your space, help with daily responsibilities. We often think we are responsible for doing it all, thereby depriving others from the satisfaction of being able to help...just sayin...

Kind regards, Jerri

PMR diagnosed 2013

[Daisyfield]

Same here...a very unavoidable busy week last week, and I'm exhausted emotionally and mentally. Can't get going...feeling sad and angry at times. Frustrated. I have a very supportive family, but I don't think it's easy for others to understand how this impacts on our lives. Not really accepted it yet.

I have to remind myself be thankful for the things I have.

It's just feels all a bit pants sometimes.

Also, I've no problems with telling people why I can't do stuff, but I don't want to spell it out every single time I can't do something, and then I worry that people think I can't be bothered.

[Buderim in reply to Daisyfield]

Exactly. I find the fact that I cannot see this illness makes me think I should get a grip and get on with things. Like you I worry people will think I am not trying. We have spent our lives putting our family first and it doesn’t come naturally to put ones own needs first. My husband is great but I am not convinced that my adult children see any cause for concern.

[Purplecrow in reply to Buderim]

Buderim, you said it so well...we have spent our lives caring for others first...when we find ourselves in the crosshairs of PMR, it is both a physical challenge, and emotional challenge to put ourselves first.

A bouquet of flowers to your Husband for understanding and helping. The adult kids need to pull up their big kid unders, and step up to help out. Can you tell I have an opinion here🤣😂🤪!!

Kind regards, Jerri

PMR diagnosed 2013

[Daisyfield]

I don't think children, however old, like seeing changes in their parents. I went to bed in the day over the weekend and my teenage/ twenty something children wondered what the heck I was doing!

[Buderim in reply to Daisyfield]

My husband says that my lot think mum is invincible!!

[PMRpro Ambassador in reply to Daisyfield]

Mine are both healthcare professionals so marginally better, particularly the paramedic one. But the nurse one told me I had to get off pred! She does now realise what a wonder drug it can be and isn't the devil when used properly and carefully!