Deb, I'm so sorry to hear you did not make your spa weekend, what a bummer.
Do rest up, but keep the joints gently moving if you can. Be kind to yourself.
It still sounds as if work, although on reduced hours, is taking its toll on you. Your body needs time to adjust and let the meds be effective as they can be.
The taste bud thing is just another magnificent part of RD 👅 and RD meds. Sigh.
Drives me nuts as used to be a chef and making food and not getting the taste grrrr. Yes work stress might be causing issues as so much going on but boss away and going to talk to HR about best foot forward on what we can do.
Plus ribs achy for past month too so think MTX doing some good but just lots of low level things happening that I am pushing aside as don’t want to sound like I am grumbling.
🥺🥺I’m so sorry Dee you were really looking forward to this weekend. This is a side of the disease so many people don’t see or understand. The impact on our social life. we struggle to work and all our efforts tends to focus on us getting to the end of the working week and then there is nothing left ... socially being active becomes a real problem. Fatigue for me is my worst symptom it’s something I cannot control . 🥺🥺 hope you feel better soon and don’t let disappointment drag you down xx
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Thank you I feel so bad for Julia as she was so looking forward to it and could not talk to me yesterday as so gutted as she has been feeling lonely lately. We talked this morning she struggled understanding fatigue x
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🥺🥺 fatigue this word does not even begin to explain how we feel. The nearest we can get to explain it is it’s like a severe flu ... other people would be in A&E because it’s so debilitating .. hope you get to catch up with your friends soon xx
That's such a shame when you’ve been looking forward to a break Deb. You know best, keep warm & hoping that cuppa did taste good, simple pleasures.
Have you tried explaining to Julia how RD affects you through the Spoons Theory? If not it might go some way to her seeing how RD can affect you & why you didn’t just bail out on her, maybe more so as you obviously understand she needs some support too outline.com/F5xh5V
I think Julia was in her moment but Mirella got her to understand I never bail normally so it must be bad! I think sending the spoon info might help thanks for reminding me x
Oh Deeb that’s such a shame as I know you were looking forward to your spa day and seeing your friend. It’s hard for others to understand how debilitating the fatigue we get can be but you know your body best of all.
So sorry to hear you didn't get to your spa weekend. I really don't think people get it when we say fatigue. As I tend to get replies of oh yes I've been a bit tired too, or you need to get a good nights sleep. If only. How do you begin to explain that it feels like your feet are stuck to the floor and you are trudging through a thick sticky tar up to your armpits whilst there is a thick pea souper of a fog in front of you. As that's how I describe it when it hits me like a ton of bricks. So my heart goes out to you as it's not like you are light heartedly saying no I will give this a miss, it's something that you have been so excited about and looking forward to and the rug has been whipped away from you. Take care
There was a funny moment before hubby went to work he said if you can find a local place to do your hair I will drop you so least you feel hair sorted. So I called a random place and was told yep have a spot now. So dashed in ran into the hairdressers and IF I had not been met by the owner I might have turned and run.
Apologies in advance but it was 1960s decor and all the hairdryers were lined up for a shampoo set and rinse.
She told me trained in 1969.
I just said I needed a trim and she said oh perfect I hate cutting long hair short (god forbid) and then proceeded to do a weird hair wash just felt weird can't explain anymore and then I decided to close eyes through the cut and blow dry. When I opened my eyes there were 2 ladies watching me laughing - I had lowered the average age by 30years they said by coming in.
I was in and out in 30mins and went to pay and she said £8..................I must have looked like a loon as I could not believe the price! I cant remember the last time I have even paid less than £30!
Today I had to wash it as my hair smelt musty but the fringe a bit skew wiff but can cope.
Thank god hair grows! If it did not the stress today would have been atad high
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😂😂😂😂 £8 a bargain 😂😂 shampoo and conditioner costs more... I’ve just pictured you in rollers and the old fashioned hair dryers😂😂😂🤣OMG I’m gonna wet myself
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It was my OMG moment the name Hardys I thought would be young and trendy but I was def in the polar opposite but it did make me laugh when I was really feeling miserable and fatigued!
Sorry to hear you're suffering from fatigue and had to miss your spa weekend. Had to laugh at the image you gave of the hairdressers 💇♀️ hope you feel better soon xx
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