LUPUS UK
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A whinge!

A whinge!

Lots of helpful replies on pushing through. Thank you. I don't have a diagnosis yet, but Lupus looks like a contender. This time last year I was working very full time. For example, last March I spent 10 days working in the Middle East and Malaysia, flew home, went off to a training camp for three days with my pony, back to work then flew out to Egypt to work . I finished working like this in September at 55 in order to enjoy more time with my husband, children, grandchildren and pony. I bought myself a new puppy too. The weird pains started in November. I had to give up weight training as I thought that was the cause.

Since January I've been almost permanently ill with overreactions to infections, intermittent temperatures, agonising pains in hands and arms for 24 hours, now just dull aches plus another cough and loss of voice ( so I can't whinge out loud).

I look after my two grandchildren aged 1 and 3 one day a week. I drive 125 miles, collect them from nursery, start bed time then Mummy and Daddy come home. The next day it is just me and them. On the last day I felt well with them, we did so much together - toddler group, playing with the puppy in the park, silly games at home plus I sorted laundry, had the house all tidy and supper ready for Mummy and Daddy.

Now I manage to get to toddler group then I lie on the sofa whilst they play around me for the rest of the day and pray that I can drive home ok once my daughter gets home. How on earth do Mum's manage when they feel like this? I'm flat out so far today with hip pain, wrist pain and shoulder pain.

I know my blood tests are showing issues, but I'm not able to see my GP girl another couple of weeks.

Thank you for allowing me to moan. I really don't need any responses. I'm in a much better state than so many other people. I'm just mourning the loss of my energy and physical abilities and hoping they will come back again.

Now, do I actually post this after all the whinging I've done?

6 Replies
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Please do not feel as if you cannot complain about what you are experiencing. We all have gone through or are going through the issues with getting proper diagnosis. We all have had to struggle with the loss of who we were before illness changed us. You will most likely have multiple replies and even if you weren't expecting it or thought you didn't need them, just knowing someone out here is listening and understands what you are going through or has had similar or shared experiences can make you feel ever so much better. The support on here is phenomenal, even I who does not comment or post very often still knows that should I have something to say or ask or whinge about everyone here is like a long lost friend who will welcome you with open arms. you are not alone. You can get through this although it will most likely cause life changes that you were not expecting and you will come to know more of your disease than most doctors and possibly more than your Dr. Have faith, patience and whinge on here when you need to. Hugs and support.

Aralyn.

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Thank you. X

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Hi! Everything you are going through sounds similar to me.

Although I am the Mum.

I have a 16 month old and I nanny for another 16 month old too.

I’ve had issues since childbirth, particularly bad over the summer and again in October. There were plenty of afternoons lying on the playroom floor and the girls just crawling over me as with the pain and exhaustion I couldn’t even sit up.

Have you talked to your daughter about it? Or are you waiting for bloods to then have something to talk to her about?

I have had 2 positive ANA’s, elevated ACE levels and low Vitamin D. They have ruled out MS (family trait) and now waiting to see a rheumatologist. I didn’t speak to my mum about it (as she has MS) until I got the all clear from that, but wish I had spoken to her earlier.

We are here! So come and moan whenever needed!

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Poor you. I,can understand that medication will help with the pain, but what about the exhaustion? I haven't told my family too much. They can see that I am ill and they know I've had blood tests that show something is wrong, but I've been saying it is probably a virus. I see the dr on 12 th March.

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Hi HeKe,

Welcome to the LUPUS UK Community Forum. I hope that you have found it helpful to share how you are feeling at the moment and will continue to find this a useful place for support and information.

Please let us know how you get on when you see your GP and what plan they set out for getting you a diagnosis and treatment.

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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I know how you feel and I think everyone on this site does. The most important thing you must do is pace yourself and listen to what your body is telling you. Prednisolone tends to work short term . Side effects are not too good though. I sometimes have my three year old granddaughter and the following days I feel awful. So i’m Sending you hugs and support and hope you can manage your very hectic life in a positive way. Xx

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