For the past few months I've been absolutely shattered I am struggling to keep my eyes open. I have had RD for 16+ years and they say chronic fibro. My wrists pain is unbearable but unfortunately I have to work. I have seen Dr who says contact RHUEMY I did nurse saw me said wrists a mess but couldn't give me jab. I saw RHUEMY HERSELF last month who said bloods fine it must be fibro and proceeded to dismiss me out of hand if I hadn't been so tired I would have flipped. I need to go back on hydrochloriquin I think as this tiredness is killing me. I can't take anymore time of work. HOW DO others cope ? I do pace but coming from work straight to bed sleep for 12hours plus and still exhausted.
So tired: For the past few months I've been absolutely... - NRAS
So tired
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digger1
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26 Replies
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Hi digger1
I really do sympathise with you, and I totally understand you too, I have not been good since last November, I too go to work, it's very hard, I have been in pain since last November, I had scans done on both my hands last week, and am waiting for a letter!!!!
I feel shattered all the time and it's getting me down, I used to be so houseproud, and now I don't get anything done!!!! I don't sleep properly anymore, the week before last I took the week off as holiday, as I didn't want to be off sick from work again!! As I am already on a stage 1warning,
I don't really have any answers about being so shattered all the time,
I just wanted to let you know that you are not on your own, if that makes any difference,
You take care, and I hope that you get some sleep
X
I feel desperately sorry for those if you who have to work. It is such a tough world now.
Exhaustion is such a difficult thing to explain to someone with no experience of it.
Hi Campaigner,
Yes, the whole RA thing is so difficult to explain to anyone who hasn't got it, or knows someone who has, they just look at you, as though there thinking, 'well you look OK"
Such a battle for us guys isn't it!!!
Take care
X
Hi digger1
I am sorry to hear you are suffering so much it’s really hard when nothing you do not even rest will touch upon it. I was like this 4 years ago I couldn’t go to work, housework, meals, I really couldn’t do anything then my son put me on to a green juicing diet.
I’m not sure if this will help but it did me so much. I take one glass of green juice with pure matcha tea powder every morning at least an hour before I get up and another one 2 hours later, no other foods or drinks an hour either side or in between these drinks. It consists of kale, celery, rocket, Granny Smith apples, flat leaf parsley all put into a juicer then add pure matcha tea and lemon juice when you’re ready to have it. If someone said to me I would greatly improve before I started it I would have never believe it! I only did it because my son had it in a lecture and proven remarkable results and asked me to at least try it. So I did😁 I know it is still working for me 4 years on as when I’m not able to make the juice for some reason I find I’m back to square one extremely fatigued and feeling very down. I really cannot live without my juice anymore. Your body absorbs much much more from the juice form. Give it a go it can’t harm. If you want me to give you the qualities, I’m very happy to do that. Let me know though if you feel better 🤗
Sorry quantities 😁
Hello Ladybird.
I was very interested in your juice remedy to help with being so tired. I was wondering if you could please send me the quantities. I have never heard of Matcha tea. Can it be bought in local supermarkets? Many thanks. Pat 64.
Hi Pat64, so sorry for the late reply just got these messages.
Quantities:
2 bags of kale around 150g
2 packets of celery large
1.5 packets of rocket
Handful of flat leaf parsley
3 large Granny Smith apples
I find cutting it all up into easy sizes to juice better. Asda does a good juicer for around £40 it has a large feeding top which makes things so much easier
Juice everything up, will be around 6 glasses of juice. I keep it in a container in the fridge but I don’t add the lemon or matcha tea until you are ready to have your juice. It will separate a little but just stir it before you pour. I take 2 daily and 3 when I feel a tad worse. Don’t add matcha to the 3rd drink if you have 3 and to make sure your drinks with matcha are taken before 2pm as the matcha can keep you awake but it doesn’t me🤪 I take mine with a straw I find that better.
Half a Lemon decent size squeezed
Matcha tea half a teaspoon
There is a full diet I go by which is a completely anti-inflammation diet if you find this works for you and you are interest to try it, let me know.
I buy the pure matcha tea from a Chinese store here in Edinburgh called the starlight. You can buy it online too
Last note is don’t have anything to eat or drink before or either side of the drinks, it works best on its own. I would love to hear how it works for you or anyone else as it has worked greatly for me. Even better with the full diet
Wishing you a great day 🤗xoxo
Sorry thought I’d make the kale a bit clearer it’s 2 bags of kale each 150g or there about totalling around 300g roughly
Thankyou try anything
I shall definitely try this.
I see the next reply asks for quantities, I was going to ask the same question.
Really keen to try and report back.
Thank you.
Hi Campaigner, so sorry for the late reply just got these messages.
Quantities:
2 bags of kale around 150g
2 packets of celery large
1.5 packets of rocket
Handful of flat leaf parsley
3 large Granny Smith apples
I find cutting it all up into easy sizes to juice better. Asda does a good juicer for around £40 it has a large feeding top which makes things so much easier
Juice everything up, will be around 6 glasses of juice. I keep it in a container in the fridge but I don’t add the lemon or matcha tea until you are ready to have your juice. It will separate a little but just stir it before you pour. I take 2 daily and 3 when I feel a tad worse. Don’t add matcha to the 3rd drink if you have 3 and to make sure your drinks with matcha are taken before 2pm as the matcha can keep you awake but it doesn’t me🤪 I take mine with a straw I find that better.
Half a Lemon decent size squeezed
Matcha tea half a teaspoon
There is a full diet I go by which is a completely anti-inflammation diet if you find this works for you and you are interest to try it, let me know.
I buy the pure matcha tea from a Chinese store here in Edinburgh called the starlight. You can buy it online too
Last note is don’t have anything to eat or drink before or either side of the drinks, it works best on its own. I would love to hear how it works for you or anyone else as it has worked greatly for me. Even better with the full diet
Wishing you a great day 🤗xoxo
Sorry thought I’d make the kale a bit clearer it’s 2 bags of kale each 150g or there about totalling around 300g roughly
I’m not sure how to put up a pic of the matcha tea I buy😄 if you know how to do it I’ll gladly take a pic
I don't know either sorry
No way should you be on a Stage1 warning when you have RD or any other immune disease. You need to see your HR or Occupational Therapy department. You also should not have to take holidays when you are sick. My advice would be to get a sick note from your GP and contact your Rheumy Nurse to see if you can get an earlier appointment with your Consultant - get a sick note from him/her if need be. Ask your Rheumy Nurse if you can have a prescription for hydroxychloroquine if you think it will help your tiredness. Sometimes giving a RD full information leaflet to your manager helps. Many people have no clue at all what RD is, what it does to the body and how it makes one feel. Hope you feel better soon.
Thankyou I will take your advice and argue my case again.
I know, I took my union rep in with me, as I showed him the nras booklet for employers, where it talks about how employers should not call it sick leave, but 'disability leave' to group it together, HR said that they slowed the process down in my case, which was classed as a 'reasonable adjustment' they just do not understand what it's like for us with RA, I told the employee wellbeing the same thing, it stresses you out even more, having to have go into one of theses meetings when you've been off ill with RA,
Sorry for going off on one, it really p----'s me off we not only have to live with this disease, but have to battle with employer's when we can't get to work!!!!
I better get of my box now!!
X
Thankyou we have SOMEONE in HR with this disease had for 3 years nut it is very well controlled. I think they think everyone else is the same. I have had 16 years but the l
Never really controlled. Thank you never heard of disability sick but now I have I will fight for that every time. Thankyou so much the help on this sights amazing. I will keep you updated.
Hi digger1
Yes, if you go on nras site to brochures, get the one for supporting employees with RA, there is a bit of info on sick, leave!! I gave it to HR!!
Let me know how you get on!!
Enjoy the sunshine ☀, it's helping with my joints, hope it's helping you too
X
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