Is this fatigue or am a lazy like my partner says?

[reeneroo]

Hi guys like a said in a previous question that I'm getting tested for lupus.. when a read about lupus and find that people mention fatigue I'm not sure if that's what I'm suffering from example i can go to sleep for 8 hours then as soon as the kids have gone to school I go back to bed for a further 3 hours. I've done this for as long as I can remember plus doing tasks like housework seems like a mission. My friends and partner keep saying I'm lazy but I know I'm not once a get sorted please help me so I can tell them am not a lazy bum.

[Whathappned]

Hi

I would say your friends and partner are showing no understanding. Have they read anything to help them understand how you feel. Even if its not Lupus there is something wrong to make you feel the way you do. Many of us on here have doubted ourselves. I know I definitely wonder if I'm just being lazy and push myself to find I'm worse the next day. I don't know what to say regarding your partner, other than he should be glad you get up! There are days when my poor husband has had to leave me to sleep go to work come home and sort the evening meal too. Whilst I haven't moved.

You know yourself, do what you can.

[reeneroo]

Aw THANK YOU! Honestly it's everyday I'm like this i could sleep for12 hours get up then go back to sleep for 3 or more hours

[reeneroo]

When I had bell's palsy they did loads of blood tests I'm not sure what one's though I'll find out on Tuesday.

[Danielle2419]

This is exactly my issue however my partner understand my issue there is definitely an issue even if it isn't lupus but if you get it checked out you will have a more knowledgeable answer to go by and this in turn will help your partner understand that the problem you are having is something occuring not something you are enabling yourself like u described being lazy if that makes sense hope you get the help you need .

[Shadows-walker]

Hi I pushed myself thinking it was all in my imagination ,and my body basically stopped in jan know instead I set myself tasks 1or2 a day ,and if I achieve that it's great .today I managed to take 2 buckets of water out of the fish tank and replace ,then I sat down and slept for 2 hours I had lupus anti Bodies found in my bloods but rummie says I have fibro ,sjogren ,raynaulds and chronic fatigue some days I am full of pain ,other days it's not so bad but the fatigue since they took me off hydrocholquinne is back with vengeance what were you like before , all this started , did it start after the birth of one of your children ? Have you had a virus ,I went to the dentist ,he forgot to give me root filling ? I have had autoimmune issues since I was a teenager ,but I have had an environmental trigger ,I broke out from head to toe with phsroris after the birth of my son , ask your partner when he thinks all this started ? Your not lazy ,don't let anybody say that to you ,you have some sort of chronic condition it will proberly take years to get a full diagnosis ,this is all new to me and I have been dealing with this for the last 3 years but the issues started a long time ago , something else to think about did you have a lot of bug ,viruses glandular fever etc when you were in your teen , take care look after yourself ,if your not happy with your GP ask for second appoinion ,

[reeneroo in reply to Shadows-walker]

Hi shadow thank you for your advice, when a was a youngster I remember been ill alot especially with my stomach, My daughter is15 now and I can remember feeling this tired then it has changed since then I've not spoken to my gp about it because everyone kept saying I'm lazy so I felt stupid telling him. But recently I suffered Bell's Palsy so now I'm starting to put 2 nd 2 together plus reading posts on here has helped me which a really appreciate.

[diane46]

Sounds like me I lupus sle and I sleep for hours but no different even on meds

[MrsMouseSJ]

Hi. You're not lazy; you're unwell. I obviously can't say whether you have Lupus or not, but various autoimmune illnesses (as well as other illnesses, of course) can cause disabling fatigue. Once you have a clearer idea, from the test results, of your condition perhaps you might search out information available from relevant charities on fatigue, to help your partner better understand. If it is Lupus, then Lupus UK and the Lupus Federation of America are good places to start. The following links may be of some use:

lupus.org/tag/fatigue

lupusuk.org.uk/what-is-lupu...

lupusuk.org.uk/want-to-know...

nhs.uk/Conditions/Lupus/Pag...

[makareta]

You are being far from lazy. Unfortunately the fatigue with lupus is something people find hard to understand. If you were just lazy you would be able to carry out other tasks without an adverse affect. It may be worth your while getting some information to hand out to people. Lupus UK have bookmarks which are good to pass onto people. Simple but effective! It also provides the web site address so they can look up more information.

[Whathappned]

I've just had an example of people not quite understanding. My usually tolerant husband has just commented on me putting on sun lotion and then returning to lie on the bed. He doesn't know that I feel exhausted with what feels like either a head cold or a hangover (which it is not).

The whole family is waiting for me to go to a county show. The only reason I am going is I need a walking stick that has a seat on it and I'm sure I saw one here last year.

Otherwise I could go back to sleep no bother.

Your not alone and unlike them the effort we put in to carry on is more than they realise and definitely not LAZY xxxx

[Flavnix]

Some days, I get out of bed, shower, get dressed and have to go back to bed to sleep. The fatigue we feel cannot be managed by anything other than sleep. You are not lazy, just just having a difficult day. Hope you feel well soon.

[reeneroo]

Aw guys THANK YOU soo much it really means alot to me with knowing I'm not the only one that feels like this everyday! Xxx Thank you for your understanding xxx

[onamission]

It takes all my energy to get out of bed I could sleep 23 hours and still feel tired. Today I went with a friend up to the local shopping centre then back to mine for a pizza, my friend went outside for a cig I only sat in the garden with her for about 10 minuets and I felt really ill and all I've done since is yawn I'm 52 and have the energy of a 140 year old. The next time your husband has the flu and can't get out of bed explain to him that's how you feel all the time

[Whathappned]

I take it your seeing about your results tomorrow. One of the best things I got was hydroxychloriquine. It's made loads of difference to my fatigue and given me that little bit get up and go. It does take a couple of months to get in to you system though.

Good luck x

[reeneroo in reply to Whathappned]

Ok sweetie I'll have a chat with my gp is there anything they could give me for the malar rash? Xx

[Sugarplumb]

I am also being tested for lupus but I have ME and Fibro and I am just getting over multiple blood clots in my lungs and that has left me with a orthertistic tremor in my legs standing is a night mare I have a thyroid problem I take 125 mg a day but I am tired like you and my husband gets annoyed that I can not do anything I am just bodily tired most of the day x

[baba in reply to Sugarplumb]

If you have had clots have you been tested for APS/Hughes syndrome

[Hidden]

I think all these autoimmune diseases carry fatigue with them because there's so much inflammation in our bodies and the immune system is hyperactive trying to fight the inflammation off and all this is exhausting for us. I have RA (known now as Rheumatoid Disease), Sjogren's, Raynaud's and hypothyroidism - and just had skin biopsies to rule out Lupus and other connective tissue problems too.

I am presently having dizzy spells as though I'm on a boat all the time and I find it hard to get enough air in my lungs. If I tried to explain this, even to my husband and children, they would just

be baffled. So I just tell people here and let other people think I'm lazy. I can't even find the energy to explain fatigue! So in this autoimmune world here you are completely normal and I hope knowing this gives you the strength to keep going. Twitchy x

[reeneroo]

Thank you xx

[irishgirl13]

Reeneroo, hi u are lazy I feel its hard for people to understand how u feel when u look ok on the outside but inside u feel like ur dying lol I have just moved house and boy has it taken it out if me, I actually fell asleep on my living room floor with a blanket I was that tired lol but I told my family and my partner im not leaving myself ill over trying to move and hawl boxes so I today I am off work I am stil in my pjs drinkin tea and doing we bits at a time I tink this is important what im tryin to say is u do what u can Have u ever heard about the spoons its very ture hope u get threw this x

[MamaDawn]

Lupus fatigue beats it all. I call it being tired to the cell level.. Nobody will understand the emmence tiremess that hits us. I was a go, go , go person. It's mot laziness, it's their frustration at the change in you. I find when I am in the middle of a "cell tired" nothing helps. I do know that if I try to push myself, it just gets worse. There are days that I just go back to bed. My husband finally understands enough not to call me lazy. There is a story about spoons, metaphorically. That explains this fatigue. Try this address: butyoudontlooksick.com/wpre...

[madmagz]

Hi Reeneroo

I suggest you google "the spoons theory" no it is not kinky like it sounds but a very good way of explaining to people who have no idea what it's like to live with chronich illness how you cope with day to day life. I have printed off a whole bundle of these and handed them out. I held a charity event last year and people were taking them and reading them in awe their reactions were amazing at how they would be more understanding of people. It really makes people think and is amazing reading in the first place that a young girl was able to find a way to put her life into words for her friends to get them to understand her life. I hope this helps you, it has helped many others.

Good luck

Madmagz x